Service User Group

Walsall Together Service User Group Terms of Reference (ToR)
 

Introduction

Walsall Together is an Integrated Care Partnership (ICP) between Walsall Healthcare NHS Trust, Walsall Clinical Commissioning Group, Black Country Healthcare NHS Foundation Trust, Walsall Council, Walsall Housing Group, One Walsall, and Walsall Primary Care Networks.

The Walsall Together Partnership are developing new integrated ways of working to improve the health and wellbeing outcomes of their population, increase the quality of care provided and provide long-term financial sustainability for the system. Strong public and patient engagement are key components of the transformation agenda including the co-design and implementation of the detailed service change required. Walsall Together has identified long-term conditions pathways for service redesign improvement work through a combination of needs analysis (Joint Strategic Needs Assessment) and partner strategic priorities.

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver engagement work necessary for co-production of the identified priorities for service redesign.

These terms of reference set out the accountability and responsibilities of the Walsall Together Service User Group (SUG).

Purpose

The purpose of the Walsall Together Service User Group (SUG) is to:

• Bring people together service users and representatives of service users, residents of Walsall and those who use health and social care service in Walsall.
• To help identify and seek the views of a range of people using services and those who may use them in future.
• Inform people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.
• To be an independent group representing the diverse population of Walsall in terms of socio-demographics, cultures/faiths and health/care needs and health and social care experiences.
• To bring forward knowledge and experiences of care pathway service delivery with the opportunity to work with stakeholders to influence service redesign. The SUG is a vehicle for working closer with users and communities as an enabler to supporting communities to be more resilient.
• To be an independent voice for patients, citizens, carers and relatives around care pathways and service use.
• To work in conjunction with the Walsall Together Team to review health, care and wellbeing services, co-design and co-produce pathway development and improvement.
• To support both the Senior Engagement Lead and SUG Chair in the representation of the patient voice at public engagement and strategic level meetings.

Membership

The WT Service User Group shall consist of service users and representative of service users, of health and social care in Walsall. In addition to the Chair of the Walsall Together Service User Group and Senior Engagement Lead, membership will primarily be drawn from local members of the public, service users although representatives from stakeholder organisations e.g. voluntary groups can be invited to join the Service User Group. Senior Engagement Lead will facilitate the meetings. We aim to to ensure that the membership is reflective of the diverse nature of the Walsall population. Members of the Walsall Together Programme Management Team to attend the SUG meeting when required to inform and feedback of health and social care change through the Walsall Together Partnership

The Chair can determine any co-options in consultation with Service User Group Members for an identified reason for a fixed period agreed by Service User Group Members.

Service User Group members shall be supported and communicated with by both the Chair and Senior Engagement Lead.

The Chair may appoint a Vice-Chair at any time using a process agreed with the Service User Group.

Code of Conduct

It is expected that members will:

• Attend meetings being prepared to contribute to soft and local intelligence.
• Behave in a courteous and professional manner, being respectful of the opinions of other members and external speakers.
• Members bring their own individual knowledge and expertise of a particular condition and can therefore take a leading part in discussions relation to their area of knowledge and expertise
• Challenge the content of papers and presentations based on own experience and interests.
• Declare any conflicts of interest if they arise
• Provide feedback when acting as a Service User Group representative at any external meetings.
• It will be expected that members will have read the papers and presenters will be asked to summarise key points only to allow time for an informed discussion.

Tenure

To be flexible. As this is a voluntary unpaid role, members are not obliged to remain for an indefinite period. However, to build group cohesion and effectiveness members will be encouraged to commit for up to 12 months to build a relationship with SUG members and with Walsall Together partnership members.

Quoracy

For the Service User Group to be quorate with the Chair or Vice Chair to be present and the Senior Engagement Lead and at least 5 service users. For specific items such as discussion of a particular pathway, patients, carers, or groups specialist in the field should be represented and no decisions/recommendations made if they are not present.

Meetings

The Service User Group should meet at least six times per year.

Secretariat

Senior Engagement Lead will provide administrative support to the SUG.  Papers will be sent out 7 days in advance of the meeting.   Summary notes from each meeting will be taken and signed off by the Chair.

Reporting Mechanism

There will be a link between the Service User Group Chair and Healthwatch Walsall Manager.  The Chair and Senior Engagement Lead will provide quarterly assurance reports to the Healthwatch Walsall Manager. The assurance reports will be presented to the Healthwatch Advisory Board with the WT SUG Chair and Senior Engagement Lead in attendance for this item.

The report will then be provided to Walsall Together Partnership Board as part of their assurance arrangements for the project as a whole.

Healthwatch Walsall have a regular seat on the Walsall Together Senior Management Team and Walsall Together Partnership Board. The Senior Engagement Lead and SUG Chair are members of the Clinical and Professional Leadership Group (CPLG) which is part of the Walsall Together Governance arrangements . In addition, the Senior Engagement Lead and SUG Chair will be invited to present findings of engagement as required at various Walsall Together meetings. Programme Managers in attendance can also take back anything ad hoc from individual meetings.

Review

These Terms of Reference will be reviewed every 12 months.

October 2020
 

Service User Group Meeting Notes 16 February 2021

Notes of previous meeting.

Point of accuracy 2020 not 2021 from December Minutes.

Date and time of next meeting page 5 should be 16^th February.

Page 5 should read not fewer than 1500 integrated health care professionals now in community settings.

With amendments agreed as a true record.

Matters Arising

From the presentation from David Walker, Walsall Public Health on the implications of COVID, BAME communities and inequalities. The data is being updated regularly. This data is available on the Walsall Public Health website and can be accessed upon request. Members to contact Paul Higgitt initially.

Arising from discussion it was confirmed that Public Health are looking at data on inequalities and locality of death through COVID.

Action Log

Action log is an update on the reference points on the discussion points through the meetings.

1. Discussion around commissioners supporting co-production in particularly from the intel that we have presented. This is ongoing however in relation to the diabetes report a paper will be tabled at this meeting on recommendations that were put forward.
2. Discussion around making the papers from these meetings public with additional information and intelligence reports. The Walsall Together website is in its later stages of development and all the papers to be sent to Michelle Beddow. There will be a page around how to get involved.
3. Case for change animation and a visual concept of the model of care to be presented at this meeting.
4. GP access and implications for patients with long term health conditions. Healthwatch Walsall report on the website on implications and concerns raised regarding access and communication.
5. Service User Group Representation. We have had some new members to the group but have also made links with members of the Walsall BAME Steering Group who will be invited and encouraged to be part of this group. We are still looking at links to other groups and representatives.

•          Action - to look at wider engagement with community associations
•          Wider engagement is a priority in the development of this group
•          Update in this meeting on a wider engagement model across networks and providers through the development of a Citizen Forum

 

    6. Presentation from David Walker – Walsall Public Health: Completed

    7. HAB Assurance Report, January to February 2012– tabled for information.

    8. Completed actions removed from action log.

Query

When we discussed intelligence feedback concerns still around, why existing organisations were not able to be addressed these issues before transformation takes place. Has this been addressed?

There have been several discussions on this. We wanted to make sure that the impact of these discussion was around improvements. Need to see evidence that this is being considered. Commissioners and Clinicians time have been prioritising work on COVID-19, thus is has been taking longer to look at feedback from our intelligence. However, we have had a formal response on the diabetes from Donna Chalenor. 

In addition, the Clinical and Professional Leadership Group under Walsall Together where we feed in intelligence had been stood down during the pandemic. This group has now been reinstated. A CPLG meeting has now taken place and co-production and the work on the WT Service User Group is now firmly back on the agenda. There will now be plans drawn up to take this intelligence forward and look at how we embed patient views where possible into real actions.

Query – Andrew Green.

Action – To highlight that this is ongoing, and that work is still being progressed on the action log. This need to be on the action log for the service user group to monitor this. Also, we need to feedback to service users.

We have though been getting feedback and signposting to services through this work noted by Rachel Lewis.

Mandy Poonia – Andrew is quite right to highlight this but as assurance it is starting to become transparent as we are developing collaborative links with providers and commissioners.

Whole issue around patient voice is really important and very powerful.

Diabetes Report

As a result of holding workshops and individual patient stories around living and managing with diabetes and tabling a report. A recommendation report from the Community Diabetes Team has been presented. Key Points:

• Development of a Diabetes Peer Support Group.
• Ensuring that there is progression for patients to get their diabetes check-ups. The need for consistency across GP relating to diabetes advice and support.
• Work around impact on anxiety and mental health and to coordinate this in more detail with IAPT and mental health support.
• What’s App Group set up for Type 1 Diabetics.
• Community Diabetes Team develop a bite size video on foot care.
• More partnership working with One You Walsall on lifestyle support for people particularly for people who are pre diabetic.
• Better information and communication on pre diabetic support and quicker earlier intervention.
• Local offer for structured information on diabetic support
• Development of 4 integrated health care teams with specialisms around diabetes.

It needs to be noted that other partners involved in diabetes service delivery need to input and sign up to taking these recommendations forward.

Question - Andrew Green

Very useful report. Some of the actions could be taken by partners now. Considering going back to providers to highlight things are happening now.

Action: Paul Higgitt to email Donna Chalenor. Are there aspects of the diabetes care pathway which the intelligence gathered suggest isn’t working well that can be changed immediately. It would be helpful to get some assessment from this from Donna Chalenor.

Question - Rachel Lewis

Concern 18 months since I have had a blood test. Movement has been very slow in relation to home visit for those who are clinically vulnerable.

6.    Walsall Together Animation and Model of Care

Outline of what Walsall Together is and what we are aiming to achieve.

There were technical issues showing the video however the link to this video shall be shared with WT SUG members after the meeting.

Michelle Beddow also requested feedback from members, and this will be feedback at the meeting on the 13^{th of} April.

Question

Will this animation have subtitles? As this will be on You Tube there is an option to for this. It was also questioned will subtitles be on the front pages of this.

Question

Will this be made available in other languages bearing in mind the demographics of the Walsall population. We need to reach people from other communities.  There may be other ways in where key representatives in communities can explain what the video is about.

Action: Any feedback to be sent to Michelle Beddow. We will also need to have collective feedback at the next meeting.

Model of Care developed by Walsall Together presented. Providing something that is more understandable for people of Walsall.

Need to allow members to digest the model and feedback.

Patient Story

Presented to the Group for noting. It highlights that complexity in health and social care and how they intertwine with the needs of some people. In that health inequalities and health concerns can be impacted in socio, economic, issues.

Action:  To request a presentation from the Walsall Together Resilient Working Group at the next meeting.

Update we have become aware that this Patient Story has also been identified through Walsall Housing Group and that partners are working with the individual around their housing and care needs.

Priority Care Pathways

The Respiratory Report will be tabled to the CPLG group in March and presented at the next WT Service User Group on the 13^{th of} April.

Cardiology Report work is ongoing, and the aim is to complete by end of April.

We are now looking at other key lines of enquiry around Outpatient Reconfiguration and End of Life Pathway to develop an End-of-Life Engagement Plan. Further update on this at the next meeting.  This will be pre and during COVID.

Assurance Report

Assurance report tabled to the group to give assurance that the Walsall Together programme team are content that the programme of engagement is on track even with the challenges of engagement during the pandemic.

Wider Engagement Model – Walsall CCG

Natalie Harding, Engagement Lead

Update on the workshop on February. The purpose has been to look at developing a model to bring partners, commissioners, representative groups in health and social care together. An example there were a number of organisations doing engagement around the impact of COVID and mental health in isolation from each other.

Series questions are what engagement already exists in Walsall and where are the gaps and how do we reach those with the worst health outcomes in Walsall.

Action: Report to be presented at the next Walsall Together Service User Group and invites to be sent to Walsall Together SUG members.

 

Question: Andrew Green

That some people had not known about this event. Also has there been legislation around this merger and communication.  Has there been wider consultation?

Natalie that this was raised who was going to manage Walsall. This is Geraint Griffiths, Walsall CCG Managing Director.

Natalie explained that the consultation was GP lead across the CCG’s and through stakeholders on the views of the merger. All GPs voted and majority agreed. It went to governing body and NHS for approval. This is happening nationally.

Information is available on Walsall CCG website.

Question: Mandy Poonia

What assurance will we be given that as the merger takes place local people will still access the service that work for them.

Natalie explained that we are working very closely with Walsall Together. The model has not yet been finalised. We still need input from service users and representatives.

Action: To send out details of the Patient Participation Group in April

AOB

Janet Lilley – Rethink Walsall, agreed to present findings of engagement around the impact of COVID-19 and mental health at the next meeting.

Date and Time of Next Meeting

11am, 13^th April 2021

 

 

 

Service User Group Meeting Notes 13 April 2021

Notes of previous meeting

Agreed as a true record.

Matters Arising

None

Action Log

The action log had been previously circulated. The position on items included was noted by members with the following comments recorded on specific actions as follows:

Action Ref Item 1: Diabetes

Diabetes Care Pathway – Update from Walsall Together – 15^th June Meeting

Cardiology and Respiratory Report have now tabled and are available at www.walsalltogether.co.uk and https://healthwatchwalsall.co.uk/our-reports.

Similarly, to the Diabetes Report we are looking to have both reports to highlight recommendations and what how this information will be used by providers, what additional information / engagement would be useful.

Need to ensure timely response in relation to co-production and feedback.  There are now more detailed discussions going forward around co-production and service change.  Looking at possible focus groups with providers and service users around care pathway redesign.

Action Ref Item 7 : Resilient Communities

Resilient Communities presentation from Sarah Taylor, One Walsall and Connie Jennings, Walsall Housing Group. Need to understand from provider what can be changed in terms of care pathways, but we also need to get feedback on the usefulness of the intelligence.

Presentation attached and key points within the minutes.

Questions from Andy Green, Action Items One: Diabetes and 6 : Respiratory

Concerns that looking at questions that have been on the agenda around change for a long time and that individual providers can look at taking this forward.

When are service users going to get feedback from the intelligence?

Even with COVID we still have service delivery going on. Some of the changes are around communication and subtle changes.

Action Item 5: Representation SUG and young people : it is great that we are getting out to the more vulnerable but when are the plans to get to children and younger people as it would be change that they would benefit in the future. Generally, in society are we looking at the views of young people when providers are designing these services.

Of the original KLOE there is work going on with partners around the best start in life. Agree that young people are service users in their own right.

Action: Need for an update and this needs to be explored.

Michelle McManus – this is a fair comment. The original focus in 2019 around the key lines of enquiry was around adults. Intention in the last financial year has been around young people.

Action: Update on the this at the next meeting around plans and ambitions around engagement and service provision.

Mandy Poonia – Assured that there are pockets of work that are evolving around young people but most importantly prevention and health conditions. From Healthwatch perspective we are getting together across Black country Healthwatch to do some engagement around young people and mental health.  Need to make sure we have young people on the agenda. For people on this platform, we need to see a log i.e., when an issue / intel has been raised, with whom and what next steps need to be take forward.  We need a continuum going forward and this will help build the relationship between providers and service users.

RAG ratings

Need assurance that things are being considered or implemented as part of the reports that are created.  A suggestion from Phil Ellet it may be an idea to have RAG rating to focus attentions.

Walsall Together Feedback - Michelle McManus, Acting Head of Integration

Michelle Update on the Model of Health and Wellbeing. Feedback from service users presented.

Comments that diagram did not flow but there is not set flow between services and people will access services in different ways.

Most of the changes have been made such as reference to place, adding in domiciliary care, adolescent services in scope, out of area pathways, patient choice and scope of what service can be influenced, showing care navigation function cuts across all tiers starting with people, homes, community and voluntary sector and resilient communities at the centre. Idea that through the partners to provide a more seamless journey for the patient / service user.

Action: to be sent out to service users the new model of health and wellbeing.

Resilient Communities Update

Joint presentation given by Sarah Taylor – One Walsall and Connie Jennings – Walsall Housing Group

Key Points

Partner focus on promoting equality and reducing health inequalities across the Walsall population and also preventing ill health before it becomes a problem to the system and individual.

Integrated care to reduce health inequality and that medical intervention is not the sole element of wellbeing and health, and that there are multiple factors determining ill health such as housing, employment, loneliness, lifestyle, as well as the decisions we make for ourselves and our families.

Some of the factors are outside of our control such as low economic factors, discrimination, poor access to services, it is about how we support people at low level interventions to prevent people being further at risk.

Resilient communities are looking how we can work with communities to highlight community solutions. Also, about having an integrated health system that know the needs of its communities.

Role of the community sector such as through COVID -19 befriending, food parcels, providing more home-grown services and volunteering.

The pandemic also provided a platform for changes such as communities coming closer together. There were also initiatives through WHG such as Stay in Stay Safe for 65 of age. Loneliness has a detrimental effect of physical health.

Update on Social Prescribing. 1 on 4 GP appointments are not clinically related but due to such as loneliness, unemployment, bereavement.  Link Workers link with people with long term health conditions and develop a plan around the individual.  This helps give people an opportunity to develop a positive mind set and help to manage long term health conditions.

Discussion points:

We have had initiatives such as this in the past, how are we ging to ensure that this initiative is sustainable going forward.

WHG developed a Kindness Project to work with those who were isolated through the pandemic. It is also about employing such people that are experts by experience who build on local skills and links within the community, this enables people to do things for themselves. As the support is from local people it is about developing local skills and using motivation techniques to build up confidence in people.

The voluntary sector is being commissioned to delivery these initiatives and be an equitable partner, and this is being made evident through national policy. 

A point was made those commissioners and provider need to be less risk averse and have confidence and commitment to ensure third parties can provide services to help in health and wellbeing.

Michelle McManus very much the case that Walsall Housing Group and One Walsall are equal partners on the alliance and part of decision-making structures. We have seen a big changes that resilient communities have moved from being delivered at just clinical level.

Query: At each WT Service User Group meeting can we have an update on where we are with Walsall Together service change.

Phil Ellet noted the importance of linking resilient communities and health and sport.  Sarah Taylor gave an example that there is an active lifestyle programme running across Walsall. There are initiatives coming on board to embrace and engage with local people around the commonwealth games.

Action – to send out the presentation to attendees.

Cardiology and Respiratory Reports

Paul Higgitt gave an update that both reports have now been tabled to CPLG based on service users and patients experiences of living and managing with either or both conditions. We are now looking at how these reports can be put in a format like that done by Donna Chalenor (Lead for Community Diabetes) around the Diabetes report in terms of how actions can be taken forward in terms of service change.

Key Points from the reports:

• Timely feedback
• The impact on loneliness and depression and long-term conditions
• Symptom management and understanding
• Sharing similar experiences with other service users / patients
• Best practice in medication and symptom management

We really need now to start looking at feedback to service users and patients and how the information we have gathered will be used constructively going forward.

Phil Griffin highlighted that the word used at the Clinical and Professional Leadership Group was accountability and that the Chair of CPLG, Director of Public Health suggested that this is really needed when clearly improvements need to be made.

Discussion

Andy Green:  Respiratory covers many different conditions.  Is the report representative of these. Response: There are commonalties in relation to some of the main conditions such as COPD, Bronchiectasis but this will need to be query back to CPLG in relation to where there are gaps.

Priority Care Pathways

There is an End-of-Life Steering Group and part of this strategy is the work around family member and loved one’s feedback of End of Life / Palliative care engagement.  We are just finalising the end-of-life survey and promotion and publicity, and this will be promoted in conjunction with Dying Matters Week, commencing the 10^th May. We will be promoting this survey through all of our contacts and with the opportunity for people to contact us and share their experiences. This engagement work will be running until the 10^{th of} August.

Discussion

Sharon Powers, Service User and Care Home staff member

End of life care and been brought to the forefront through the pandemic. Would this work be expanded to staff working with those at end of life.

Action: Paul Higgitt – This is a great idea, and we would welcome the conversation with staff as this is then looking at the views from both sides. Paul to arrange a meeting with Sharon to look into this.

We are not focusing on any particular group but the conversation across all demographics in Walsall. We are going to look at the intelligence that we get back until we consider a strategy of engagement around children and young people and if we do, we get the mechanisms in place.

Presentation, Rethink, Impact of Mental Health

Janet Lilley and Anne Fitzegarld, Rethink

Presentation on the engagement around listening to people’s voice around mental support. This is a piece of work to highlight best practice and gaps in services.

This was to gather experience from service users and staff within the provision of mental health services.

Key Points:

• Consistency in aftercare and outpatients’ clinics
• Living and managing with a physical condition and the impact on mental health
• Appropriate, accessible and transparent care plans
• Patient and staff communication
• Communication between hospitals and the importance of a central point of information between providers

Date and time of next meeting

11am 15^th June 2021, rescheduled from 9^th June due to apologies.

 

 

Service User Group Meeing Notes 15 December 2020

Phil Griffin, Walsall Together Service User Chair, welcomed everyone to the meeting.

Notes of previous meeting

Agreed as an accurate record

Action Log 

Update and presentation from Public Health on Health Inequalities and the Impact of COVID-19 on BMAE communities.  

David Walker gave a comprehensive presentation:

Key Points

• Public Health giving a weekly dashboard to monitor COVID-19 trajectory
• Mortality indicator by area in Walsall, in relation to the 1st and 2nd Wave, mapped by postcode. However, they can be linked to nursing homes such as identified around Aldridge
• Health inequalities – Vulnerability Index, Clinical, Health, Economic and Socially Vulnerable, Walsall is in the 20% most vulnerable in England. Bloxwich East and West are some of the most vulnerable from the data
• Through COVID-19 implications and increase in level of Diabetes
• Clear link between deprivation, health inequalities and COVID implications
• Walsall being an area of high deprivation, the BAME community has suffered 438 deaths to October 2020
• Bangladeshi communities have by percentage been affected by COVID-19 mortality the most
• National report indicates funding will be made available on education and engagement campaigns, targeted cultural health information, and ensuring COVID-19 strategies are in line with reducing health inequalities
• Highlights the impact on anxiety and depression due to several factors in particular uncertainty

Question: About the risk assessment tool, will it reduce impacts of the virus? 

David highlighted that this goes across the borough and Walsall Gold command. Looking to reduce deaths within the Bangladeshi communities through media and engagement work. It was highlighted that the prevalence of drugs and drug culture in deprived communities and the impact of this in the spread. There needs to be a long plan around health inequalities. 
 

Question: What work is being done to support the Afro-Caribbean community? As there has been a lot of deaths with this community.

We have been working with churches in COVID secure arrangements with churches to get message out, but also address issues with Barber Shops due to opening during the pandemic.

Question: Particularly interested to hear about the survey conducted by the council around mental health. Really worried about the impact on mental health in the future. 

Large survey done by the council, but it hasn’t been released yet.

Question:Is there a document specific to COVID-19 deaths as it if felt that this will hit home more rather than percentages? That is based around ethnicity. Did the last slide mention the percentage of the total population that each race filed? Just so that we have proof in one document to back up the COVID correlation rather than just more people dying. Just something that proves causation rather than correlation.

There is data available which can be shared. 

Question: What is the impact of COVID-19 in the Caldmore and Pleck region as people are using local shops?

Paul Higgitt to raise the question and information about any work being done to support these local communities at the next meeting.

Respiratory and cardiology report are now being developed as the workshops have taken place.

Question: raised about access to services during this challenging period and as a service user with a heart condition not always getting the support  required. 

Comments: 

• We need to ensure that young adults are also given the opportunity and encouraged to participate. Transferring to social models and engaging and the importance of the patient voice
• Ttotal emphasis the point about the effects on a wider range of people with long term health conditions, BAME communities and learning disability etc. The pathways need to focus on this
• As a member of the Guajarati community agree with Mandy that having a support through social model. People need to know what’s going on around health and social care change
• There is a great opportunity to use workshops like this to share intelligence and experience and for many not having to get on public transport to go to meetings, although we need to still look at engagement in different way particularly for those who don’t use social media

Presentation on Funding Implications

Michelle Mcmanus gave an overview of financial implications. The Kings Fund provide good, simplified information how services were historically provided and how we want them integrated going forwards. www.kingsfund.org.uk

Under new models of care, it is recognised that competition by health and social care providers is not good for public health. In Walsall in line to bring providers under a single contract, and Walsall NHS Trust to subcontract to other providers of health and social care. We are also working on digitalisation of care records across providers. 

Question:With all the investment going into COVID does this impact on investment in other health care provision?

Darren Fradgley, Executive Director of Integration for Walsall Together: 

The biggest organisation is the public of Walsall from my perspective – clear message. On the contrary there has probably been more investment put in. Every bit of money that has come for support around COVID has come from a central national. 

COVID fund not from core budgets. This has allowed us to show the real transformation change being undertaken.

Need to be careful that its in the best interest of public. An example we have been able to work on rapid discharge freeing up over £2miilion into community provision. Getting more effective rather than less effective.  

In relation to the Walsall Together programme now established for over two years. The integrated model is moving rapidly. 

The model is evidence based on best practice from UK and international and that it needs to be driven from the community. Its about building on resilient communities and wrap care and local populations, rather than having to come into services – needs based rather than application based. 

An example headline is the 18 social prescribers working with GPs, that connect day to day service with members of the public, integrated health and care teams. 

No fewer 1500 integrated health and care staff located in the community and access to uninterrupted access to care.

Now working on full re-design of outpatient services. How the public access of the public access structured care at the time of need.  

Discharge to assess service working as an MDT team. Big success behind integrated health and care teams and put them into one service. Average stay on someone with complex needs form 8 days to average day and half. 

No longer run therapies from hospital now into community to wrap around care. 

CQC has recognised this work and progression.

We are also looking at area-based need in terms of inequalities. 

Concern was raised by Phil Ellet about local people’s concerns about keeping people mobile and worried about COVID.  

Darren agreed that physical activity is vital in developing resilience and social interaction. Putting money into the community and voluntary sector is morally important too but also the longer-term costs on the health of the public of Walsall to support this.

Phil Griffin thanked all those for attending and for the Walsall Together Programme Team.

Date and Time of Next Meeting:
11am, 13 April 2021
 

Service User Group Meeting Notes 4 November 2020

Phil Griffin, Walsall Together Service User Chair, welcomed everyone to the meeting.

Notes of previous meeting

Agreed as an accurate record.

Action Log

Action Log Item 1

How will service user intelligence be used in co-production. Email sent to the programme board for response. Meeting arranged with Walsall Together Programme Team to discuss co-production in more detail.

Action Log Item 2

In relation to creating a central point of access. It was agreed that Paul Higgitt, Michelle McManus, and Michelle Beddow will arrange a meeting to look into this.

Update agreed that until the Walsall Together website is full functionally, we shall look at sharing case studies and information where there are updates / impact. But to also look at the best way in which intelligence is presented to be parallel to actions / updates. This will be put in the get involved and engagement section on the new website.

In the interim information can be put on the Walsall NHS Trust website.

Comment from Andrew Green that some of the intelligence should go to the providers for action, irrespective of them coming together as a partnership.

 

Question raised are service providers already addressing such issues. Frustration that information has gone back to current service providers. It was appreciated that there is the here and now that things need to be acted upon. Fear that as we gather intelligence does it need major transformation change to act on the intelligence.

 

Phil Griffin noted the point is very important, and we want to see change as part of this work.  An example we have sent the Diabetes Report to the Divisional Director for Diabetes Donna Chalenor, Report was good, and she was going to arrange to discuss the report with her team. What we do not know yet is the outcome of this discussion. Number of recommendations. Expectation that Donna will come back with a formal response and proposal. We need further dialogue, have engaged providers. Need to add we have had an acknowledgment from Stephen Gunther, Director of Public Health, and hope to be shared with public health team. Assurance was given that we are on the case it just takes time to get back to us.

Mandy Poonia, it is a really valid point, number of issues here:

• Retaining the data.
• Capturing and having responded to and through committees takes time.
• Actions and outcomes suggesting action log we could highlight and look at timelines. For example, raised at this date and responded to. Need measures on impact and value the work of service users. Clearly some things need more time.

Action: To go back to providers with report and a review of the recommendations and complete the loop. Timeline for responses back to providers.

Action Log Item 3

Discussed at last meeting with Michelle Beddow. Website formats and templates have now been agreed. Anticipate that the website will be functional earlier in 2021 and there will be a section on Patient / Service User engagement and How to get Involved. In the meantime, information can still be put on the Trusts website under the Walsall Together section.

Action Log Item 4

When are GP’s going to be opening face to face appointments? Wider communication issues. Providers and commissioners looking for appointments to take place safely. Healthwatch have raised points around access and appointments and in particularly for those who need face to face appointment or have a long-term health condition. Wider communication is taking place with the CCG and GPs to inform patients around GP access.

Action Log Item 5

Issue by Walsall Black sisters considering the media around the impact of Diabetes, BAME communities and COVID-19. Response was provided by Lead for Community Diabetes Service.

Action: To distribute the response to WT SUG members for comment. Idea to have a discussion at next WT SUG group about BAME communities supported through this period. Eve highlighted the need more information around BAME communities.

Action: To ask for a representative to attend next WT SUG and discuss the support around BAME communities, long term health conditions / diabetes and COVID. Paul to contact public health.

Action Log Item 6

Assurance Report – Next assurance report to be tabled at the next WT SUG in December. This will also be discussed as part of the contract monitoring of the programme. Also, to discuss the programme going forward around KPI’s engagement and representation.

Action Log Item 7

Terms of Reference Circulated and to thank members for their comments and support.

Action Log Item 8

Need to look also as part of contract monitoring where there needs to be targeted engagement.  One key element is to ensure that we also target the engagement with seldom heard and disability.  We also discussed at the programme develops looking at the wider determinants of health and wider representation.

Terms of reference Service User Group

Terms of Reference circulated and to thank service users for their comments and support.

Walsall Together Programme Update - Presentation

Michelle McManus, Walsall Together Senior Programme Team Manager gave a presentation around Walsall Together, case for change, ambitions and success to date and the communication and engagement aims.

Michelle Beddow noted the programme team are just finalising the communications and engagement plan.

Group thanked both for a concise presentation.

Action: Distribute Presentation to Service User Group once available.

Q&A

Q - Why not happy and healthier communities.

A - WT is not just about health and health is a part of a happier community.  It is not just about health determinants but access to quality health and social care, improved housing, improved community links.

Q - Questioned on the tier approach i.e. tier 3 and 4 where Walsall Together is to maintain a clear reference to access to services outside of Walsall.

A - Yes, choice is very important and that if someone wants treatment elsewhere.

Certainly, nothing changes from a patient choice perspective. We can influence delivery in Walsall but does not change the choice agenda.

Michelle McManus highlighted that one of the requirements for Walsall Healthcare Trust is must demonstrate to commissioners how they are going to maintain patient choice. Piece of work once completed to be shared. Commissioners will still commission the contract but some small mental health contract to Blackcountry Healthcare. Acute service will be part of the current providers.

Q - We talked about service users and service user engagement of we want to widen the audience should it be service user and public? To help widen the audience and allied to that co-production is a very much changing way of working and culture change. Do providers and commissioners understand what this means and how we are doing this.

A - Phil Griffin – The representation is not yet complete and we need to be far more inclusive in promoting the group, service users have the experience and a bid training and development agenda to get to a point where coproduction becomes routine and true partner.

Michelle McManus level of assurance of commitment some funding regionally but also CCG want to set up a patient forum, but we need to do this together and ensure efforts and resources are focused in one place. There is enthusiasm need to tie up so its coordinated in the correct way.

Q - Query with start COVID there was talk about writing off NHS debt to bring the baseline up.

A - Michelle McManus highlighted partners have not yet been told the financial envelope for next year. Funding for services in place will core team will be in place next year. In relation to investment we do not yet know until the next financial year.

Q - Where does all the funding come from.

Action. Agreed for the next Service User Group for briefing notes of funding arrangements for a broad understanding.

David Watton noted a statement in memory from many years ago

Today’s society is a totally interdependent society in which we each have a role to play we each much play our role. This fits exactly what we are trying to do.

Q - IT integration is positive. To what extent will this be branched out to all core services in primary and secondary and tertiary services,

A. Michelle McManus noted that by this side of Christmas IT integration is planned for hospital care, and community services, GP practices and adult social care, children services and public health and that the data sharing agreements will be in place. Work in the background already done and mental health services and ambulance services in the new year. Systems elements are ready to go.

Mandy assurance that training will be in place within the system.

A. Software sits above existing systems, so how access system not much different from how it is now.

Diabetes Report

Diabetes Report – Paper circulated. Next steps conversation with Donna Chalenor and CPLG when ideas and intelligence can be used going forward and any feedback to the group going forward.

Action – Clear reporting timelines. Things that have been actions or items that require further time.

One positive outcome so far though has been the development of the Walsall Diabetes Peer Support Group in conjunction with Diabetes UK.

Andrew as part of transformation to make clear the issues and intelligence raised by both type 1 and type 2 diabetes need to be differentiated.

Agenda Items 7, 8, 9.10

Due to a technical error the meeting was cut short. Agreed that Items 7,8,9 to be discussed at the next meeting.

Date and Time of Next Meeting

11am, 15^th December 2020

Service User Group Meeting Notes 23 September 2020

Phil Griffin, Walsall Together Service User Chair, welcomed everyone to the meeting.

• Notes of previous meeting agreed as an accurate record.
• Query to ensure action log is sent out beforehand and put into more comprehensive format with description of what Red, Amber, Green ratings mean. Action: Paul Higgitt
• Feedback from Walsall Together to this group to be more comprehensive.
• Discussion around wider communication. We are working with Walsall Together Partners on a wider communication plan. Michelle Beddow noted that in terms of public communication there will be digital animations on the case for change. This will be rolled out soon.
• Still need to look at wider representation of this group as a priority. One Walsall as an example are holding a disability forum in October and we will promote the SUG here. We also need to look at wider representation and particular access to clients and citizens across Walsall. Action: Paul Higgitt to Contact Walsall Housing Group to link in with their Health and Wellbeing Forums to promote SUG and interest in membership.

WT SUG Draft Terms of reference 

Queries on SUG Terms of Reference received from Andrew Green: it was agreed that these would be discussed with the Engagement Lead and Chair outside the meeting and there would be a report back at the next meeting. Action: Paul Higgitt

Some initial comments on the document were:

Query on membership and where from. If it is a service user group, it needs to be representative and who becomes a member and those in attendance.

Where are we drawing representation from? Do not want it to be tokenistic from delivery agents and not service users themselves.

Bryony Helm: tokenistic if people won’t turn up, we need ensure membership grows. First stage feedback in the first meeting was about how we gather feedback. Question is the group to be owned by the Service Users?

Michelle Beddow: Echoed what has been said that the information and feedback that is fed from this group is fed into the programme going forward. Priorities around  co-production.

It was agreed that Andrews Greens comments on TOR would be circulated to members and if members had additional comments themselves on the TOR, they were to contact Paul Higgitt.

Action: Paul Higgitt and all members

Mechanism had discussion over the last few months about how feedback will be undertaken.

Mandy Poonia –Healthwatch Advisory Chair now sits on Walsall Together Partnership Board. Aileen Farrer attends Walsall Together Senior Management Team, weekly Senior Management Meeting and will feed in any reports to the operational team whilst Phil Griffin and Paul Higgitt attend the Clinical and Professional Leadership Group.

Andrew Green query on confusion on independent role of Healthwatch and separate piece of work. Ensure do not dilute the role of Healthwatch as independent advocate but from a resident perspective where do people go if they are user of services. Who takes intelligence and questions to the Walsall Together Service User Board and what are the responses back? Michael Cox replied therefore we have been working with Healthwatch, the SUG reports to Healthwatch Advisory Board and inputs into the Clinical and Professional Leadership Group where care pathways are discussed, and co-production is possible.

The SUG is an independent patient voice and Healthwatch as an independent body of the health and social care and has representatives on the WT Board and SMT

We are still at the engagement and consultation stage/ process to get to  co-production.

Lindsey Gooding, Rethink Walsall - Can service users attend this group and for their voice to be heard not just case studies but what services need to be put in place.

Answer – Paul Higgitt replied yes very much having service user and clients to attend is pivotal

Representation- Michael Cox commented that Walsall Together Board need the SUG to look at wider representation and in particular hard to reach, we absolutely need to get at.

Bryony Helm – CAMHS Council - It is very important and good for service users to get involved and invest in such formats to discuss service change. However, they very much need to feel that they are part of the journey.

Mandy Poonia: key question what we are doing to involve BAME communities. What in roads can we take to involve BAME and learning disability communities.

What is it we can do with partners to engage with communities and what about people who are social media discluded? The opportunities are there but we need to endeavour we engages with other communities.

We have a database of links, but strategy needed how we to put these messages across. It is to do with digitalisation or do we need to look at other means of engagement.

Links with other Support Workers i.e. Learning Disability issue but need start exploring how we get the information from such. Need to get feedback as a priority.

Summary Diabetes Report

Summary diabetes report shared with group and full diabetes report shared with CPLG members. To be shared with WT SUG on the 4th November.

 Action: Paul Higgitt

Development of Peer Support Group meeting. This came out from the feedback from the Diabetes Workshops.

Care Pathway Workshops

Held 2 cardiac workshops on top of the 3 diabetes workshops.

Mandy raised at Walsall Together Board about closing the loop. It also about assurances on the work how changes feedback.

Also, pre and newly diabetic to share experiences in such as the peer support group.

Wider patients get the information about how the service are change so patients feel part of the change.

WT Programme Update

Michael Cox - No programme update due to short notice Schedule presentation for next meeting on 4th November.

At moment working out how the programmes are going forward and how to restart transformation agenda due to COVID-19. How we restart some of the programmes.

Project update and KPIs

Key points of cardiac workshops so far were shared with the group

Updated Assurance on the Key Performance Indicators. This was shared with the group is the look on target, any concerns, risks, things included in the report.

We are monitored by the Healthwatch Advisory Board to assess the project work.

Date and Time of Next Meeting 

11am 4th November 2020

Then

11am 15th December 2020

 

Service User Group Meeting Notes 22 July 2020

Phil Griffin, Walsall Together Service User Group Chair thanked all those for attending.

Purpose of the group to ensure that the patient voice is embedded into the changes that take place in health and social care around Walsall Together.

Although there is a focus on the 6 Key Lines of Enquiry and the patients views on services and managing conditions around diabetes, heart conditions, respiratory conditions, mental health, end of life care, it is important that people with other health conditions can both participate and that there their conditions are also taken into consideration in relation to health services change.

Making sure the information and intelligence is shared with this group and providers but as a building block to see if these are wider public issues.

Action: an update urgent on the progression of peer support group for diabetes. 

We need to build on this group we will ensure we work on wider representation around such as cardiology and respiratory and end of life clients and patients.

The Walsall Together Service User Group is fundamental to Walsall Together. 

Point made concern that we need to maintain capturing a wider range of views and the wider population and what is Walsall Together doing in relation to wider engagement. Encouraging that in these discussions we get snippets of information about services and clients views.

Question: Are we going to put this into a central point that the wider community can access?

Action: To discuss this in relation to how it can be disseminated through Walsall Together. 

This group is only one avenue to capture patient views through direct engagement in key locations, various support groups, meeting patients individually.

So far held 3 diabetes virtual workshops with over 60 clients. 

Real need for Diabetes support group.

Notes from both meetings to be sent to Walsall Together.

At the next meeting in September to have a Walsall Together Project Manager present to give an overview of the communications plan and to discuss the type of information that would help Walsall Together from this group. 

Questions:

Have we been able to feed anything back to board?

Brief overview on the key points from the paper that went to Walsall Together Board in relation to Service User intelligence so far to date. 

Service User feedback that points are reflective. 

• Access to information around understanding and managing diabetes particularly within the Asian community and the impact on Diabetes and Mental Health. Also ensuring patient access to the minimum standards for Diabetes health checks  
• Access to timely mental health support for men, some have been referred to talking therapies to find that they do not fulfil the criteria
• Ensuring that accessing pain management and psychological services are organised for the patient in a parallel coordinated way
• Ensure that all COPD pathways are supported with assistance to manage the condition, and in particular understanding care pathways with Asthma
• Cardiology pathway. Better communication between consultants and patients. Confusion and mixed messages to patients from different consultants
• Communication with patients with comorbidities and being supported to understand symptoms. Specialist management and communication between patient and communication between consultants

Need to have a wider communication strategy which is geographically focused on the wider range of communities. 

Verbal update on diabetes workshops:

• Impact on mental health and need for support
• Peer support even virtual
• Commonalities in relation to poor access to information
• When will people be able to access the 15 minimum standards during these challenging times. Information from Diabetes UK
• Not all GP’s are ensuring people access the checks and tests. From a patient view it is not consistent through all practices
• BAME communities’ impact of diabetes and COVID-19 and the need for grass roots information on support offered. Focused information and support at those at most risk. Better understanding around nutrition and food intake
• Ensuring access to better information around medication management
• Asian communities – lack of understanding around eating habits and what is said to people in relation to advice. Some Asian people cannot read and write in own language. Not enough talking within communities around the condition. Feel they go to the GP and many patients concerns seem to be put down to diabetes
• Many people have found the Diabetes awareness course very informative but need to opportunities for further follow up with dieticians
• Doesn’t matter what ethnic group you are from all patients need to be able to access the same information
• Who co-ordinates the pre diabetic referral

Walsall Together Service User Comments

• In relation to T1 diabetes there is a different regime. Need to differentiate clearly support finding need to access to specialist care quicker not necessarily through GP. Do all newly diagnosed get access to information on 15 minimum standards. Seem to be looking at system changes and need to look at system failures and resources.  Even the basics of sharing information is not robust enough
• People do not always know how to navigate the system when it comes to long term health conditions and management
• How things are being delivered differently during COVID-19?
• There has been a better range of communication from Public Health but from GP do not come to the practice but no information on what services are open. Very little information on how to look after yourself no GP communication
• Need regular updates on what services are back operationally during this period. 
• Many people in the group received no information from GP in terms of how people are with health conditions and COVID-19
• Comments from a mental health service user that she has had follow up calls to check on her wellbeing but her family member with autism has had difficulty in accessing talking therapies.
• Many people are aware that GP services are being differently but there are still major issues with being able to get through on the phone. Many found telephone consultations good. Also the blanket message of don’t visit GP has made it confusing in particular for some who require blood tests
• For those shielding received a message which was national but then one initial call from practice but nothing since
• Still need choice if there is a better offering out of borough in particular to specialist services.

Date and Time of Next Meeting

23rd September, 11am 
 

Service User Group Meeting Notes 27 May 2020

Overview of Walsall Together Partnership

Paul Higgitt, Senior Engagement Lead and Phil Griffin Walsall Together Service User Group Chair gave an overview of Walsall Together as an Integrated Care Partnership (ICP).

https://www.walsallhealthcare.nhs.uk/about-us/how-we-are-run/partnerships/walsall-together/

Self-Care Management

Self-Care Management run through the healthcare trust really positive opportunity to help people managing with long term health conditions around peer support, self-care management programs. 

Self-Care Management is the care and encouragement provided to people with long term health conditions and their families to help them understand their role in managing their condition better on a day-to-day basis. 

It helps people to make more informed decisions about their care, engage in healthy behaviours and to access further support https://www.walsallhealthcare.nhs.uk/our-services/self-care-management-team/ Tel: 01922 605490  Email: selfcare@walsallhealthcare.nhs.uk

Six Lines of Enquiry Update

Paul Higgitt gave an update on the 6 key Lines of Enquiry – Diabetes, Cardiology, Respiratory, Outpatient Mental Health, End of Life and the best start in life.

We have so far been undertaking one to one patient stories and we have a long-term health condition survey which we would welcome people to share their views.

Comments and Questions

• Although the focus is on the 6 KLOE we must ensure that other care pathways are not missed and taken into consideration such as Arthritis, Cancer etc
• We noted that once the interim report has been signed off to get permission to share the report with WT Service User Representatives
• Query was made as to the intelligence from the patient’s views are these going back to the providers themselves
• Some of the health issues should be dealt with now not waiting for the re-organisations of the health service
• As a service user to ensure that patient views are taking back to the providers to take action in service delivery
• As things are moving forward there is a duty on health and social care bodies to consult and inform patients and service user how these changes will have implications on care
• Are the people of Walsall aware of what Walsall Together is about and when will the general public be informed? We explained that part of our engagement was to inform people generally of what Walsall Together is about. Part of our role is to inform Walsall Together of the weaknesses in service provision but there will need to be changes in service specifications that are permanent.
• There were a number of people who highlighted the impact on mental health for people with long term health conditions and that access to mental health support / peer support needs to be available across the board
• We gave a brief overview of social prescribing in Walsall and how the voluntary sector is playing a vital part in support people around accessing support groups and peer support
• Comment made around a reluctance from GPs to tell patients around new drugs or trials due to costs. Patient pushing and pushing for a new drug and is now on a new diabetes drug and a view that this needs to be considered. The patient is now controlling diabetes well but the impact on other health conditions is considerable
• Cancer early diagnosis was highlighted. The principle of GP awareness and protocol on referrals. In that some GPs reluctant to make a referral to a specialist and how this model will impact on this. In particular around Cancer, it was noted that England has one of the highest cancer mortality rates in Europe. And is this because we have a low referral rate to specialist centres
• Is this about saving money or providing excellence in health care? And how are we going to ensure a protocol for using services outside of Walsall and that the patient choice is still firmly in place
• Many people suffer in silence and that Social Prescribing needs to be significantly ramped up in Walsall. What is the righto for the patient to ask for a referral to a specialist– this was pre COVID-19. Rather than sitting in silence under a GP.

Summary of Patient Survey

Below is a snapshot of some of the key points that have so far been identified. 

• Access to information around understanding and managing diabetes particularly within the Asian community and the impact on Diabetes and Mental Health. Also ensuring patient access to the minimum standards for Diabetes Health Checks 
• Access to timely mental health support for men, some have been referred to talking therapies to find that they do not fulfil the criteria
• Ensuring that accessing pain management and psychological services are organised for the patient in a parallel coordinated way
• Ensure that all COPD pathways are supported with assistance to manage the condition, and in particular understanding care pathways with Asthma
• Cardiology pathway. Better communication between consultants and patients. Confusion and mixed messages to patients from different consultants
• Communication with patients with comorbidities and being supported to understand symptoms.  Specialist management and communication between patient and communication between consultants.   

This report is an assurance report for the period June to July 2021. This report therefore covers activities undertaken during this period and provides the Board with assurance that the Walsall Together Engagement project as commissioned, is continuing largely as planned despite the considerable challenges that COVID-19 poses in relation to patient engagement and communication and the limited flexibility for the project team to move the project deliverables forward.

Context

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways and will be held to account for delivery of this engagement project. This report gives assurance to the HWAB on progress to date following on from the assurance report tabled in June (HAB meeting cancelled due to unforeseen circumstances).
The engagement work is being led by the WT Service User Group Chair with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt, and in time become a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions
• Identify and seek the views of a range of people using services and those who may use them in future
• Educate people about Walsall Together, the intended benefits and new models of care delivery
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

Senior Engagement Lead – Update

Due to personal circumstances Phil Griffin the Walsall Together SUG Chair has temporarily stepped down. Phil Griffin is planning to return in October 2021 and Andrew Green has been recruited to undertake the role in the interim.

We have continued to engage with patients and service users through social media and through promotion through wider contacts.  Whilst we have still not been able to undertake face to face engagement, we are actively seeking the voice of patients and service users through other means. 

The End of Life and Palliative care survey is still live and will be closed on Tuesday 10th August. Whilst uptake in completing the survey has been slow, we have gathered some valuable family member and loved one’s experiences. The intelligence will be collated and presented to CPLG in September.

Some of the key themes are around discharge to preferred place of death, knowledge of care plans and requested patient wishes, bereavement support in Walsall and the positive support offered at Goscote Hospice for family and loved ones. 

We have not yet been informed when will be working on engagement with partners around the changes in Outpatient’s appointments in primary and acute settings.

Our cardiology and respiratory reports have now been presented at CPLG. We are still awaiting feedback on the efficacy of the report recommendations. 

Working with the resilient communities’ partners to start to look at engagement around 4 identified priorities that have been presented at Walsall Together Board:
1. Reducing Health Inequalities
2. Reducing Loneliness and Isolation
3. Improving social and economic outcomes
4. Increasing aspirations and building pride on an individual and community basis

Walsall Diabetes Peer Support Group 

Following on from the Friday Focus in May around the procurement of the retinopathy service in Walsall we have held our July Diabetes Peer Support Group.  Donna Chalenor, Divisional Lead for Community Diabetes gave an update on how the recommendations that we put forward are being incorporated into the diabetes care pathway:

• Development of a Diabetes Peer Support Group for people to share experiences and aid in supporting people around loneliness
• More information and promotion of the IAPT / Talking therapies service for people with long term health conditions and during the COVID-19 pandemic
• Enhanced grass roots communication within the BAME communities around diabetes care, and advice and reassurance of service delivery around diabetes and the impact of COVID-19 on BAME communities
• Ensure that there is consistency across GPs during this challenging period and that patients are accessing their essential check-ups
• More joined up communication with the patient around early intervention, pre diabetic support, and the general offer for the patient
• Inconsistencies across diabetes care on Community nursing caseloads  
• Importance of learning from user experience 

Diabetes UK also gave an update on the Get Moving Programme in which some attendees were looking to participate. 

The meeting was very productive and many of the attendees saw the peer support group as useful to share experiences. There was an emphasis on discussion around the variation and understanding of blood sugar monitoring. Our next meeting is scheduled for Thursday 16th September with the focus on blood sugar monitoring support. 

With the increase in prevalence of diabetes and the need for support and information we are working with partners to encourage more wider take up to the group.

Walsall Together Service User Group Meetings 

The WT SUG meeting took place in July and the key points were as follows:

• Timely Feedback to SUG member of the reports and care pathway redesign. That this group should inform aspirational change. 
• Need to be clearer on what we want the WT SUG Group to achieve. 
• GP access challenges and in particular people with long term health conditions. Continuing conversations with the CCG in relation to access. Update on work done by the CCG developing toolkits and turning the perceptions round.
• Shaping services for the future as well around end of life. 
• Update from Michelle McManus on the key respiratory recommendations and care navigation. 
• Update from Michelle on the integration of children’s services 

Service User Group - Expanding Representation

As part of the ongoing development of the WTSUG we want to ensure that we are fully representative of the wider Walsall population.  As some people with learning disabilities highlighted that the service user group may not be the best platform to engage, we have held a learning disability focus group supported by FACE and Midland Mencap. We have developed an easy read document and asked service users a number of questions around access and quality of health and care services. 

We are looking to hold a wider engagement workshop for people with learning disabilities and carers in September. 

We are also working on expanding representation through the Resilient Communities Working Group. 

Respiratory and Cardiology Care Pathways & CPLG

The respiratory and cardiology reports have now been presented to the Clinical and Professional Leadership Group (CPLG). From this we were asked to present a paper at the July CPLG based on the commonalities of themes of issues for people living and managing with some of the key line of enquiry long term health conditions.

Care Navigation
For a patient / service user being able to navigate through health services has in some cases been a challenge or difficult to understand. Ensuring that patients / service users have tailored personalised care plans where required much be undertaken. Several patients / service users were not aware of individual personalised care plans, what they meant and that such plans should be reviewed or developed in co-production with the patient, healthcare provider and their family members.

Building Personal Resilience
Through the engagement activity and around diabetes several service users see clinical and medication support as the main default position in managing the condition.
Understanding portion control, eating the correct foods, and taking up exercise for some people with type 2 diabetes is problematic. There is access to community-based dieticians however the engagement activity has highlighted that there is a need to build resilience for people to manage their condition better.
Building resilience has also been highlighted through discussions with respiratory patients which have highlighted that by becoming more socially active and being encouraged to do this has a positive impact on their condition.

Impact on Mental Health and Anxiety
Throughout engagement, the impact on anxiety and poor mental health has fundamentally been one of the key challenges for patients and service users, and poor mental health has exacerbated symptoms and increased loneliness.

One of the key points is how can we encourage people to access psychological services as part of the self-care management of their condition. Earlier this year The Black Country Healthcare NHS Foundation Trust highlighted the support available for people with long term health conditions through the IAPT services, however uptake in the support had been low, or service users did not know about its existence.

Encouraging people to access social prescribers and support within the community and voluntary sector is also essential.

Rehabilitation
Continuation of rehabilitation for respiratory and cardiovascular disease has highlighted that some people are either not encouraged to attend, find the sessions themselves difficult, or feel that they are not useful and do not reattend. How do we encourage more people to attend the service and assure people of the physical and mental health benefits?

Access to Community Based Services and Knowledge
There has been a considerable number of comments around the positive work of the community diabetes and respiratory teams. However, through this engagement several patients have highlighted that they were not aware of the services or how to access these.

Accessing Support Services
Through this work we have also signposted people to support services which several patients/ service users were not aware of such as:

• Walsall NHS Healthcare self-management courses (6-week self-care management course around diabetes)
• IAPT services specific for people with long term health conditions
• One You Walsall – My Time Active, individual health assessments and support
• Housing 21 Wellbeing and Activity Sessions
• Diabetes UK 10-week activity and health sessions
• Community and voluntary sector health and wellbeing support service
• Social prescribing through primary care

Peer Support
There is demand for patients and service users to access peer support services. Peer support specifically to allow people to come together and share experiences, share information on manging strategies, and to access advice from specialists. This has been highlighted through the development of the Walsall Diabetes

Peer Support Group
The commonalities report was discussed, and this was seen as a positive opportunity to present to Walsall Together Programme board where potential changes in care pathways redesign could be supported. 

Resilient Communities 

The Resilient Communities Working Group ae now focusing on developing action plans around engaging with local communities to identify community priorities. We are now looking at establishing engagement plans where outcomes can be embedded into the outcomes framework where partners can measure impact. 

Making Information Available

Reports and meeting notes continue to be submitted to the WT programme team to be made available on the Walsall Together website.  

In July the Walsall Together Programme Team used the Healthwatch Friday Focus as an opportunity to update the public on the progress of Walsall Together, its actions and ambitions and future plans. This was attended by 50 members of the public and staff.

 
Contract Monitoring  

We continue to have regular catch-up meetings with the programme team. We have now made closer links with Walsall Community Associations. Our next contract monitoring meeting is scheduled for August and to look at the development of a work programme for the third year of the commissioned project. 

Key performance Indicators and outcomes so far

The key performance indicators for this project (which were agreed as part of the commissioning specification) are set out below with a RAG self-assessment of performance to date. This has also been agreed by the Walsall Together Programme Team.

Ref.	Outcome	KPIs	Performance to July 2021	RAG assessment
1.	Recruitment of User Group members according to an agreed person specification developed in partnership with the Walsall Together SMT	Number of individuals recruited from range of demographics and long-term health conditions.	8 WT SUG meetings have now taken place. Membership recruited from local population and those with an interest in health and social care. New members continue to attend.
2.	Production of promotional materials and a marketing plan to advertise the roles and recruitment process.	Production of a marketing plan including the details of what has been produced, marketing channels, etc.	Walsall Together website is now live and reports, patient stories and WT SUG papers have been submitted for entry. We are regularly asked to input updates into the WT bimonthly newsletter.
3.	Delivery of a schedule of training sessions to inform Users of their role and the context of the Walsall Together Case for Change	Working with Walsall Together Programme Team on future training and development with SUG members	Potential future co-production training has been identified and it is hoped that this can also be provided for WT SUG members.
4.	Coordination of workshops with service users and other stakeholders, according to the priorities identified by the Walsall Together Integrated Care Partnership (ICP) Board, to discuss people’s experience of current services and how their needs could be better met.	Number of workshops, number of attendees, feedback received including specific recommendations made regarding service design and delivery	Learning Disability & Diabetes Peer Support Group workshops have been undertaken during this period.
5.	Work closely with patients and users from the Walsall Together partner organisations (Walsall Healthcare NHS Trust, Walsall Council, Walsall CCG, Blackcountry NHS Trust, One Walsall, GP Practices)	Plan for engagement with each stakeholder including how they will contribute to the User Group and/or feedback and recommendations made about services	We continue to work with WT Comms to invite key people to update the WT SUG Group on the planned changes around care pathways.
6.	Make clear recommendations for service design and delivery, for each identified priority area, service design of care – care pathways. reflecting people’s experience of health and care services and their future service needs	Produce public engagement reports for consideration by the Walsall Together SMT, ensuring there are clear recommendations; include number of people consulted with and how this is a strong representative sample of the relevant population	We are now working closely with CPLG members taking the recommendations forward and giving feedback to service users.
7.	Ensure service design and delivery of the services in scope are influenced by patient and public engagement as a direct result of the Walsall Together User Group- in scope?	Contract Monitoring Reports	Agreed with Walsall Programme Team for quarterly contract monitoring reports to run parallel with Healthwatch Walsall Contract Monitoring Reports. Also, to hold informal monthly update meetings between Healthwatch Walsall and the WT Programme team.
8.	Ensure patients, users and citizens know about Walsall Together, the proposed changes to services and how they can influence future service design and delivery	Produce a communication plan detailing how the public will be kept informed about Walsall Together	Whenever a workshop has been planned, promoted, and delivered, we have explained to participants the aims and objectives of WT. Common briefing. We are also using a briefing when one to one patient stories have been captured.
9.	Attendance at Meetings	Walsall Together Partnership Board   Walsall Together SMT   CPLG	HWW HAB Chair     Healthwatch Walsall Manager     Senior Engagement Lead WT SUG Chair

 

Recommendations

That the Board receive the report and are assured through the reports content that the project deliverables are being taken forward as commissioned

Report Authors:Paul Higgitt, Healthwatch Walsall Senior Engagement Lead
 

Patient & Service User Engagement Assurance Report March 2021

This report is an assurance report for the period January and March 2021. This report therefore covers activities undertaken during this period and provides the Board with assurance that the Walsall Together Engagement project as commissioned, is continuing largely as planned despite the considerable challenges that COVID-19 poses in relation to patient engagement and communication and the limited flexibility for the project Team to move the project deliverables forward.

Context

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways and will be held to account for delivery of this engagement project. This report gives assurance to the HWAB on progress to date following on from the assurance report tabled in January 2021.

The engagement work is being led by the WT Service User Group Chair with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt, and in time become a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions.
• Identify and seek the views of a range of people using services and those who may use them in future.
• Educate people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

Senior Engagement Lead – Update

We have continued to engage with patients and service users through social media and through promotion through wider contacts.

Whilst we have not been able to still undertake face to face engagement, we are actively seeking the voice of patients and service users through other means.

However, despite this development, we have now had an informal contract monitoring meeting with Walsall Together Acting Integration Manager (further details on the Contract Monitoring Section in the appendices). Partners were happy with the delivery so far despite the challenges in engaging during the current times. We discussed existing key lines of enquiry but also for an emphasis in 2021 to work on key lines of enquiry around.

• Inequalities in Health Care.
• Engagement around Learning Disability
• Working with partners of the changes in Outpatient’s appointment in primary and acute settings.
• End of Life Engagement

With support from Walsall CCG, we have now tabled a EOL Engagement Plan to the End-of-Life Strategy Group. One a whole it was very welcomed regarding capturing the meaningful experiences. They like the idea of using the questions as a prompt. It was advised that we focus on older people now.

A meeting with Andy Rust (Walsall CCG) is to be arranged to discuss this in more detail.

The draft plan is presented at the end of this report.

Patient Engagement Work: Diabetes

As a result of tabling the Diabetes Report we have received a recommendations and action planning report from the Community Diabetes Team. This was tabled at the last WT SUG meeting in February. It needs more work in relation to buy in from other partners around Diabetes care however it is a progressive start on feedback and co-production between partners. This has also been presented to CPLG in March and welcomed as a way in which there is feedback on the intelligence that we tabled.

Walsall Diabetes Peer Support Group

We have been progressing with the further development of the Walsall Diabetes Peer Support Group. A session has been arranged for the 15th of March with Diabetes UK and with service users that had shown an interest in chairing and developing the group.

Walsall Together Service User Group Meetings

The WT SUG meeting took place in February 2021. The key focus was a presentation from WT Programme Team on a Walsall Together Animation and the Model of Care. Feedback was requested from service users and passed over to the WT Programme Team.

It was agreed that at the next WT SUG meeting in April there will be an update on the work around Resilience and a presentation from Rethink on the impact of Mental Health and COVID-19. One key point is to widen representation within this group.

A presentation was given to Walsall BAME Network in March to encourage people and representatives from the BAME community to share experiences of living and managing with Long Term Health Conditions. This will be followed up through contacting induvial organisations to encourage representation at the WT SUG meetings going forward.

Service User Group-Expanding Representation

As part of the ongoing development of the WT SUG we want to unsure that we are fully representative of the wider Walsall population. We shall be working with Midland Mencap (Walsall) to engage with service users with learning disabilities and their carers through easy read questions and group discussions around:

Living and managing with health conditions

Access, communication and their understanding of their health conditions

What things could be delivered differently to help people to be supported.

We now have a seat on the Walsall BAME Steering Group, and this represents an opportunity to widen our scope and opportunity to engage with the BAME population.

Cardiology Care Pathway Workshops

This report is now in its final stages and will be presented to HAB early April for sign off and to be tabled to CPLG in April.

Living and Managing with Respiratory Conditions Workshops

The report has now been tabled to key stakeholders and presented to CPLG in March. The report was welcomed to highlight some valuable intelligence and experiences. However, at the CPLG meeting members will be looking at how actions are discussed and how feedback is presented will be a more detailed discussion through the CPLG members.

Patient Stories

No further patient stories have been requested so far. However, we will now be asking the WT Partnership Boards of they would now like us to start tabling patient stories.

Making Information Available

Through the Walsall Together Service User Group meetings there have been several comments around how the intelligence, reports and papers from meeting can be accessed. We have been working closely with Walsall Together Communication Lead to look at ways in which information can be made readily available. It has been agreed that once the Walsall Together website is live.

Action – The website has been developed and will be made public shortly. It has been discussed and presented to partners. Our task now will be to send over papers and reports to the partnership to put on the website to be incorporated into the get involved section.

Walsall Together – CPLG

CPLG has now been reinstated. 2 meetings have now taken place. There have been more robust discussions around how CPLG will use the intelligence that we table to start the conversations on changes in care.

There will though need to be discussions around priorities and funding to see how any changes can be implemented.  CPLG members are also looking at establishing separate working groups to develop action plans around KLOE.

Contract Monitoring – March 2021

Present – Aileen Farrer (AF), Paul Higgitt (PH), Michelle McManus (MM)

Minutes of last meeting – 10th March 21

Overall, the engagement work is progressing well under challenging circumstances. Face to face engagement is still not possible but a lot of alternative approaches have been undertaken.

Attendance at the Service User Group (SUG) now includes a core of regular members including the newly established local BAME network. PH is pushing to get representation from learning disabilities.

The Walsall Together website will be launched on 6th April (soft launch) and Michelle Beddow is currently uploading content. As previously discussed, all Healthwatch reports, details of SUG meetings etc. will be uploaded.

There are several strands of work in place across Walsall and the Black Country related to engagement on health inequalities. These need to come together into a coherent plan, with resources, for Walsall.

Healthwatch have RAG rated against the KPIs in the contract. Some of those not on track would not necessarily be expected to be on track at this stage and given the pandemic. It would therefore be helpful to review the KPIs and reset priorities and timescales.

Engagement in Cardiology has been disappointing relatively to the Diabetes work, though feedback from clinical staff has suggested that this is not surprising, and many patients do not want to engage to the extent we see with other LTCs. Agreed to present the findings to CPLG and ask whether that Group would like any further work to be done. It was also agreed that engagement feedback should be presented alongside other data and evidence. PH has some data from PH and can present Cardiology as a joint piece as a test exercise to see if this approach works. MM will support.

The End-of-Life Strategy Group has reconvened after a break during COVID. There is not currently routine representation from the WT programme office. MM confirmed that this will feed into CPLG.

PH is looking at how we embed the personalized care agenda into all engagement work. It was agreed that this is inherent in most engagement work as the focus tends to be on understanding the perspective of the individual. However, a review from this perspective could add value and is worth doing.

It was challenging to get through all agenda items in the time available. It was agreed that monthly catch ups would be beneficial to stay on top of everything.

Actions from last review/matters arising.

1. MM to obtain a template for future use – COMPLETE.
2. PH to collate current membership and the population that they represent and undertake a gap analysis against the overall population of Walsall – for discussion at the next meeting to identify a strategy for additional recruitment.MM to link PH to Jan Davies, Chair of the Community Associations
3. MM to request a representative from Resilient Communities to attend and present to the Service User Group on 13th April.
4. PH to send content for the website to Michelle Beddow.
5. MM to arrange a meeting with Michelle Beddow, Connie Jennings, Stephen Terry to discuss how the different aspects of engagement on health inequalities can be aligned.
6. MM to review the KPIs in the contract to provide additional detail and clarity on expected timeframes.
7. MM to add Cardiology to the next agenda for CPLG - COMPLETE.
8. MM to schedule monthly meetings going forward – COMPLETE.
9. MM to send a structure of the WT Programme Office

Key performance Indicators and outcomes so far

The key performance indicators for this project (which were agreed as part of the commissioning specification) are set out below with a RAG self-assessment of performance to date. This has also been agreed by the Walsall Together Programme Team.

Key Performance Indicators

Ref.	Outcome	KPIs	Performance to Novemeber 2020	RAG Assessment
1.	Recruitment of User Group members according to an agreed person specification developed in partnership with the Walsall Together SMT	Production of a person specification still be completed. Number of individuals recruited from range of demographics and long-term health conditions.	5 WT SUG meetings have now taken place Membership recruited from local population and those with an interested health and social care. New members continue to attend.	Amber
2.	Production of promotional materials and a marketing plan to advertise the roles and recruitment process.	Production of a marketing plan including the details of what has been produced, marketing channels, etc.	Working with WT Comms for this to be incorporated into the wider WT engagement plan.  Website, Newsletter and comms and engagement plan being developed by WT Communications Manager. Intel and report to now be sent to WT Team to be incorporated into the new website under the How to Get Involved section.	Amber
3.	Delivery of a schedule of training sessions to inform Users of their role and the context of the Walsall Together Case for Change	Working with Walsall Together Programme Team on future training and development with SUG members	Informal training around ‘What is Walsall Together’. We are working with WT Comms to undertake training around the Case for Change and the importance of the patient voice.	Amber
4.	Coordination of workshops with service users and other stakeholders, according to the priorities identified by the Walsall Together Integrated Care Partnership (ICP) Board, to discuss people’s experience of current services and how their needs could be better met.	Number of workshops, number of attendees, feedback received including specific recommendations made regarding service design and delivery	We have undertaken 4 diabetes workshops and 2 Cardiology Workshop, 2 respiratory workshops and the development of a Diabetes Peer Support Group.  Contract Monitoring arrangements agreed where engagement will focus on other key areas.   Engagement around taking the additional KLOE’s forward is to take place with the providers and partners.	Green
5.	Work closely with patients and users from the Walsall Together partner organisations (Walsall Healthcare NHS Trust, Walsall Council, Walsall CCG, Blackcountry NHS Trust, One Walsall, GP Practices)	Plan for engagement with each stakeholder including how they will contribute to the User Group and/or feedback and recommendations made about services	We shall be working with WT Comms to invite key people to update the WT SUG Group on the planned changes around care pathways.	Amber
6.	Make clear recommendations for service design and delivery, for each identified priority area, service design of care – care pathways. reflecting people’s experience of health and care services and their future service needs	Produce public engagement reports for consideration by the Walsall Together SMT, ensuring there are clear recommendations; include number of people consulted with and how this is a strong representative sample of the relevant population	Respiratory Report tabled to CPLG and disseminated to wider partners. Cardiology report to be tabled to CPLG in April.	Amber
7.	Ensure service design and delivery of the services in scope are influenced by patient and public engagement as a direct result of the Walsall Together User Group- in scope?	Contract Monitoring Reports	Agreed with Walsall Programme Team for quarterly contract monitoring reports to run parallel with Healthwatch Walsall Contract Monitoring Reports.	Amber
8.	Ensure patients, users and citizens know about Walsall Together, the proposed changes to services and how they can influence future service design and delivery	Produce a communication plan detailing how the public will be kept informed about Walsall Together	Whenever a work workshop has been planned and promoted and delivered, we have explained to participants the aims and objectives of WT. Common briefing. We are also using a briefing when one to one patient stories have been captured.	Amber
9.	Attendance at Meetings	Walsall Together Partnership Board   Walsall Together SMT   CPLG	HWW HAB Chair     Healthwatch Walsall Manager     Senior Engagement Lead WT SUG Chair	Green

 

Recommendations

That the Board receive the report and are assured through the reports content that the project deliverables are being taken forward as commissioned

Report Authors:

Paul Higgitt, Healthwatch Walsall Senior Engagement Lead

Phil Griffin, Walsall Together Service User Group Chair

Appendices

Walsall End of Life Patient Experience

Patient, Carer, and Family Engagement (others identified as important to you)

“How we care for the dying is an indicator of how we care for all sick and vulnerable people”

(National End of Life Care Strategy 2008)

Death and dying are inevitable. The quality and accessibility of this care will

affect all of us and it must be made consistently better for all of us.

Walsall has a developed End of Life Strategy 2018 – 2023. Underpinning principles for the Strategic Goals identified within the Strategy are:

• It applies to wherever the patient and carer are receiving care.
• Unless otherwise stated all references are to people who are in the last year of life.
• The actions apply to all people regardless of diagnosis and cultural background.
• The strategy applies to all partnership organisations in Walsall and is inclusive of the broad Voluntary and Community Sector that exist as means of support.
• Responsibilities in all actions apply to both patients and carers.

Progress has been made in the last five years with Palliative and End of Life Care within the Borough. The principle for this strategy is that we continue to focus on previous priorities but now identify key strategic objectives which will deliver greater continuity, response and improved communication for patients, carers and professionals.

The emphasis of the Walsall End of Life Strategy is on local decision-making and delivery, core to its centre is the needs of people of all ages who are living with dying, death and bereavement, their families, carers and communities which must be addressed, taking into account their priorities, preferences and wishes.

Taking this into account as part of the end-of-life strategy engagement with patients and those identified as important to them is an essential part of the end-of-life strategy.

Walsall Together

Healthwatch Walsall have been commissioned through Walsall Together to capture experiences of care pathways around 6 key Lines of Enquiry:

• Diabetes
• Respiratory Illness
• Cardiology
• Mental Health
• End of Life & Palliative Care
• The best start in life, early child.

As part of this engagement work it has been agreed that Healthwatch Walsall under the commissioned programme will work in conjunction with Walsall CCG to plan and deliver the patient and (those close to them) engagement work.

End of Life Strategy Key Priorities

There are 5 key priorities identified within the end-of-life strategy. These priorities are to be used as part of the engagement with those who are important to the patient.

Recognise
The possibility that a person may die within the next few months, days, hours are recognised and communicated clearly, decisions make, and actions taken in accordance with the persons needs and wishes, these are reviewed regularly, and decisions revised accordingly.

Communicate
Clear and sensitive communication needs to take place between the person who is dying and those identified as important to them.

This includes identifying the extent of the persons need for information and allowing them to decline discussion regarding that possibility that they may be dying.

Involve
The dying person and those identifying as important to them are involved in decisions about treatment and care to the extent that they dying person wishes.

Support
The needs of family and others identified as important to the dying person are actively explored, respected and met as far as possible.
 

Plan & Do
An individual’s plan of care is agreed, coordinated and delivered with compassion (including food and drink, symptom control, psychological, social and spiritual support.

Stages of the Care Pathway

These aspects detailed below should guide the patient care pathway.

 

 

 

Voices Questionnaire

There is a national and abbreviated local question capturing the views from those who are important to the patient in relation to their end-of-life care pathway.  This is a more in-depth tool used to capture experiences. Whilst it is recognised that the Voices questionnaire is used and recognised nationally and locally as an important element within the end-of-life strategy, in relation to engagement, we are looking at widening the engagement through:

An agreed approach to engage with patients / those important to them through:

• One to one telephone conversations
• Focus Groups
• Surveys

Through these mechanisms our aim is to capture qualitative data from participants.

Target Audiences

We will as part of the engagement define our target audiences:

Carers
Family Members
Those who are important to the patient.

As part of our engagement, we must also recognise the demographics of Walsall in relation to ethnicity. We will be working with local communities and voluntary groups, community leaders and member within BAME communities in relation to engagement around end of life.

For Consideration
There are current mechanism for feedback on experiences such as through:

• Walsall Healthcare NHS Trust PALS, Patient Relations Team.
• Staff, patients and loved ones through Goscote Palliative Care Centre.
• St Giles Hospice.
• Walsall Healthcare NHS Trust Bereavement Team.

Next Steps

We endeavor to be clear with participants on the rationale for capturing experiences, but most importantly that the aim of the intelligence is to improve patient experience.

We will need to consider whether the intelligence around care experiences from other sources will be incorporated into this engagement work as part of the wider end of life strategy.

We would anticipate that providers at acute, community, primary care levels, hospice, would support us with the promotion of engagement opportunities. The support from the community and voluntary sector is also recognised as a crucial part of this engagement.

Rationale – This Questionnaire has been intentionally kept short due to the sensitive nature of the subject with open text boxes for the participant or engagement person to free type experiences.

Draft - End of Life Experience Questionnaire

Context – Narrative Front Page to be agreed (webpage / newsletter)

Note: summary headings and monitoring questions to be fully completed on Survey Monkey / SNAP (other virtual system).

We would very much like to learn about your experiences of End of Life or palliative care services.  Our aim is for all Adults, Children and Young People at End of Life to be supported to achieve their ambitions as identified through the care planning process. 

This questionnaire relates to any experiences in the last 18 months both before and during the Coronavirus pandemic.

This listening exercise will run for (fill in dates/weeks) and close on …….. 21.

We greatly appreciate you taking time to help us monitor and improve our care for End-of-Life services in Walsall.

1.About you:

Are you a Carer / family member / other relationship to patient [multiple choice question]?

Other (please advise) – [Free text box]

2. About the Care Received

2a.

Was the care of the patient received at
home
hospital
hospice
Other location?  Please advise [free text box]
Please advise name of hospital or hospice. [free text box]

2b.

Where did your loved one (close to you) pass away?

At individual home
Residential or Care Home
Hospice
Hospital

3. Care Plans for Patients

Were you or your family advised by medical staff that the patient was dying, given the opportunity to talk about a Care Plan with the patient and what were their wishes?

Yes / No

Can you please explain why you have answered Yes or No to the previous question? [free text box]

What is an End-of-Life Care Plan?

An individual’s plan of care is agreed with the patient / those close to the patient, coordinated and delivered with compassion (including food and drink, symptom control, psychological, social and spiritual support).

End of life care aims to support someone in the later stages of a life- limiting condition to live as well as possible until they die. It also aims to support family and carers during this time and after the person dies.

4. What worked well / Could have been better?

What went well or not so well?  E.g., Medication / pain management, staff care, communication, between organisations, access to timely equipment etc.

[free text box]

Additional Feedback

Do you have any comments to help improve End of Life care or services in future?  [free text box]

Ethnicity Monitoring Questions

Please could you advise the first 3 characters of your post code e.g., WS2?

Male / Female / Prefer not to say.

Age

Ethnic Origin

Religion

For Discussion

Data Protection

We would hope through numerous engagement mechanisms that we will capture in depth qualitative data. Whist we will not be sharing individual stories without permission it important that we protect the anonymity of participants. We would therefore be due to the sensitivity of the data that a GDPR and DPAI statement and control system for data.

Timescales for Engagement

The Walsall Together EOL Strategic Delivery Group to advise timescales for the engagement process. These will need to be considered in order to capture meaningful data and intelligence.

Additional Resources

We recognise that end of life is an emotive subject.  Whilst capturing the views from participants we will need to be able to signpost to other professional with experiences in areas such as children, babies, as the participants may become distressed reliving their experience. Therefore, we would hope that in such circumstance professionals will support this work.

Patient & Service User Engagement Assurance Report January 2021

Introduction

This report is an updated assurance report for the period December 2020 to January 2021. This report therefore covers activities undertaken by the project during this period and provides the Board with assurance that the Walsall Together Engagement project as commissioned, is continuing largely as planned despite the considerable challenges that COVID-19 poses in relation to patient engagement and communication and the limited flexibility for the project Team to move the project deliverables forward.

Context

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways listed in paragraph 1 above and will be held to account for delivery of this engagement project. This report gives assurance to the HWAB on progress to date following on from the assurance report tabled to October 2020.

The engagement work is being led by the WT Service User Group Chair with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt, and in time become a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions.
• Identify and seek the views of a range of people using services and those who may use them in future.
• Educate people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

Senior Engagement Lead – Update

We have continued to engage with patients and service users through online workshops whilst extending our reach through support from Walsall Together Partners. We have extended our messages around the importance of the patient voice. Whilst we have not been able to still undertake face to face engagement, we are actively seeking the voice of patients and service users through other means.

The Clinical and Professional Leadership Group’s (CPLG) - this is a Walsall Together clinical and management committee comprising WT partners representation) aim is to steer the direction of Key Lines of Enquiry (work programme) and to work on developing co-production and service change using in part intelligence gathered through this project. Unfortunately, due to NHS pressure and priorities around COVID-19 and the role out of the Vaccination programme CPLG has been stood down until further notice.

However, despite this development, we have now had a formal contract monitoring meeting with Walsall Together programme team and procurement. Partners were happy with the delivery so far despite the challenges in engaging during the current times. We discussed existing key lines of enquiry but also for an emphasis in 2021 to work on key lines of enquiry around.

• Inequalities in Health Care.
• Engagement around Learning Disability
• Working with partners of the changes in Outpatients appointment in primary and acute settings.
• Work on EOL engagement and particularly with the emphasis on the VOICES Questionnaire.

We have scheduled meetings to discuss with the End-of-Life Workstream in January 2021 to discuss how through this programme we can support EOL engagement opportunities.

We have also been asked to support communication and engagement around the reconfiguration of primary and acute outpatient appointments. An initial meeting was held in December to discuss intelligence that the trust has already gathered. A further meeting has been scheduled for early January.

We have also been tabling Assurance Reports on the progression of the programme to our HWW Advisory Board and the Walsall Together Programme Team. We have also shared these with the WT Service User Group.

Patient Engagement Work: Diabetes

4a Diabetes Care Pathway

The living and managing with diabetes report has now been tabled to Walsall Together Partnership Board. It has also been distributed through providers and commissioners. Whilst we have been informed that Walsall NHS Community Diabetes Team are developing an action plan to look and embedding some of the recommendations.  We are awaiting to see this.

4b Walsall Diabetes Peer Support Group

We have been progressing with the further development of the Walsall Diabetes Peer Support Group we have held further information and advice workshops including around loneliness and care around the festive period and advice around medicines management. We are now working closely with Diabetes UK to enhance the development of the group and to support service to take on future running and development of the group aided by a training programme through Diabetes UK.

The next meeting has been scheduled for the 9th of February with the focus on group development and also a presentation from Walsall NHS Trust Self Care Management Group on their Diabetes 6 - week support programme.

Over 50 people have attended so far. We are now looking for service users to take an active part in helping to run and co-ordinate the workshops. This will be done with support and training provided through Diabetes UK.

Walsall Together Service User Group Meetings

Four Walsall Together Service User Group meetings have now taken place and we have a large number of new representatives attend and also widened representation.

Key discussions have been around the case for change, progress to date, patient engagement and what Walsall Together means for the wider health and social care economy. We have also had a detailed presentation from the Walsall Together Programme Team on Walsall Together as a whole, communications. This is available on our website.

We were requested for an update on the impact on COVID-19, inequalities on the BAME community. David Walker - Senior Programme Development & Commissioning Manager, Public Health, Walsall presented a well informative update on statistics, impact and the work by wider partners around reducing health inequalities.

We continue to be working with the Walsall Together Communications Manager on the new design of marketing materials for public engagement. Two Walsall Together Newsletters have now been distributed amongst partners with a section on Get Involved and the patient voice promoting our work. We have also agreed that once the Walsall Together website has been made live (Est Jan to Feb 2021). We will make the WT SUG papers, engagement report available to the public. It was agreed that this would be the most suitable place for them to be cited.

Service User Group-Expanding Representation

As part of the ongoing development of the WT SUG we want to unsure that we are fully representative of the wider Walsall population. We shall during this quarter be working with Midland Mencap (Walsall) to engage with service users with learning disabilities and their carers through easy read questions and group discussions around:

• Living and managing with health conditions
• Access, communication and their understanding of their health conditions
• What things could be delivered differently to help people to be supported.

Cardiology Care Pathway Workshops

We have held 2 cardiology workshops and gathered additional patient stories Most seem to understand their condition but it’s about managing medication which can be difficult. A snapshot of some of the patients comments regarding the care pathway which will be reflected in a written report is given below:

• Difficulty in managing breathlessness. To understand the condition many have had parents who have passed but in early periods of time few were checked if it was congenital.
• Patient with heart failure, leaky valve, angina, TIA, pacemaker. Dr explained everything as we went along.  Learnt a lot living with it and the support from the self-care management group was very useful.
• Aftercare at Heartcare has been good in relation to advice on exercise and activity.
• However, there were some comments that aftercare in terms of a plan was limited until supported through Heartcare.
• Booklet on life changes good but better to sit down with someone and not just for 5 minutes. Some views that it is about the conversation with the patient after surgery. One patient said he sees it has been fixed even though you still have a heart condition. Mental side when you have heart condition you think a certain way.
• Patient goes to hospital every six months and they put a dye inside his veins and maintain heart rate really push heart and mentally it helps and do not have concerns.
• Given pack and get a blood pressure monitor.  Support for families when patients have a panic attack is important or signs of heart stress.
• Idea Zoom calls 24 / 7 group session. It is the mental impact from heart attack. Mental support immense benefit. Talking therapies support for long term health conditions but not many that we spoke to had been referred or know about this support.
• People say have great fear of future after a heart attack. Value in looking at virtual network.
• Like fact that specialist takes time to listen but brought lack of communication with others dealing with condition. If you have multiple health for those pain, it’s very difficult.
• GP practice can make double appointment. GP said I will take the time as there is a reason – Little London Surgery.
• It does depend which GP practice you can work through diagnosis to make joint decisions. But some make mind up before you discuss issues. It should not be the case. GP good if discuss mental health side of heart condition.
• Also, good liaison with consultants is essential.  Been described Nikoran if going out to exercise. You get frightened when you go out and raise your heart rate of fear of negative impact on your heart.
• Need consistency and stability with the patient and GP with a patient with a heart condition.
• Positive about cardiac care – surgeon communication very positive and have given opportunities to ask questions. Consultant communication with patients positive.
• Some consultants signpost to talking therapies but it is not consistent.
• Occupational Therapist have done assessments but not come back with advice or aids and adaptions for my mom. Not enough consistency of advice after care.
• Useful for patients to have a copy of Heart care pathway flow from hospital to aftercare and rehabilitation. I.e., algorithm for each patient.  Some view no patient or family involvement in judgements. Do all patients get copies of aftercare from discharge co-ordinators?

Although these workshops have been promoted extensively the take up of patients and service users has been limited. Although we shall in February be tabling our initial report using the intelligence, we have so far gathered from two patient engagement events including the above and individual patient stories (pre COVID-19), conversations will be taking place with the Walsall Together Programme Team on ways forward to secure engagement around cardiology and potentially a further engagement workshop towards the end of February.

Living and Managing with Respiratory Conditions Workshops

We have now held 2 workshops for patients and service users on living and managing with a number of respiratory illnesses. We captured in depth conversations and a significant amount of intelligence and experiences. The report is in its drafting stage and our aim is to complete it by the end of January 2021.

Patient Stories

No further patient stories have been requested so far. This is mainly due to the work of partners focusing on the impacts of COVID-19 on health providers and the role out of the vaccination programme.

Living with Long Term Conditions Survey

The living and managing with a long-term survey summary report was tabled to the Walsall Together Partnership Board in July last year.  The survey is still live, and we continue to promote the general survey to capture further intelligence. This will need to be discussed at the next CPLG meeting to see if their element needs to change / continue.

Making Information Available

Through the Walsall Together Service User Group meetings there have been several comments around how the intelligence, reports and papers from meeting can be accessed. We have been working closely with Walsall Together Communication Lead to look at ways in which information can be made readily available. It has been agreed that once the Walsall Together website is live, we shall present information under the getting involved and engagement section.

Walsall Together – Healthwatch Walsall Governance

Healthwatch Advisory Board Chair regularly attends the Walsall Together Partnership Board. The HAB chair has highlighted the vital importance of feedback from intelligence tabled to boards and over time the importance of co-production. This is also a view strongly held by the WT SUG Chair and also members of the Service User Group itself who want to receive feedback on any material changes that were made to care pathways in response to the views shared in the engagement events and in 1:1 patient interviews.

The Healthwatch Manager continues to attend SMT, whilst the Senior Engagement Lead and WT SUG Chair attend CPLG. However, during this period both meetings have been stood down due to priorities of providers around COVID-19 and social care.

Whilst we appreciate the commitment of partners focusing on other priorities, it is still important that discussions take place around how intelligence will be used in coproduction.

Contract Monitoring

• The next contract monitoring meeting is scheduled for February.  We have requested a contract monitoring template for completion. In this meeting will shall also be focusing discussions around:
• CCG Citizen Voice and the embedment of the Walsall Together engagement work.
• Taking additional KLOE forward
• CPLG meetings
• Further engagement of seldom heard groups.

We went through the assurance report to measure against KPI's. The changes are reflected in this report.

There were discussions about future engagement being less disease specific - but we need to ensure that the intel that we have gathered is still used in co-production

It was also agreed that the engagement and development of the WT SUG must be supported by the CCG engagement plans and that there must be commitment to support us with this.

Key performance Indicators and outcomes so far

The key performance indicators for this project (which were agreed as part of the commissioning specification) are set out below with a RAG self-assessment of performance to date. This has also been agreed by the Walsall Together Programme Team.

Key Performance Indicators

Ref.	Outcome	KPIs	Performance to November 2020	RAG Aassessment
1.	Recruitment of User Group members according to an agreed person specification developed in partnership with the Walsall Together SMT	Production of a person specification still be completed.	4 WT SUG meetings have now taken place Membership recruited from local population and those with an interested health and social care. New members continue to attend.	Amber
2.	Production of promotional materials and a marketing plan to advertise the roles and recruitment process.	Production of a marketing plan including the details of what has been produced, marketing channels, etc.	Working with WT Comms for this to be incorporated into the wider WT engagement plan.  Website, Newsletter and comms and engagement plan being developed by WT Communications Manager.	Amber
3.	Delivery of a schedule of training sessions to inform Users of their role and the context of the Walsall Together Case for Change	Working with Walsall Together Programme Team on future training and development with SUG members	Informal training around ‘What is Walsall Together’. We are working with WT Comms to undertake training around the Case for Change and the importance of the patient voice.	Amber
4.	Coordination of workshops with service users and other stakeholders, according to the priorities identified by the Walsall Together Integrated Care Partnership (ICP) Board, to discuss people’s experience of current services and how their needs could be better met.	Number of workshops, number of attendees, feedback received including specific recommendations made regarding service design and delivery	We have undertaken 3 diabetes workshops and 2 Cardiology Workshop, 2 respiratory workshops and the development of a Diabetes Peer Support Group.  Contract Monitoring arrangements agreed where engagement will focus on other key areas.   Engagement around taking the additional KLOE’s forward is to take place with the providers and partners.	Green
5.	Work closely with patients and users from the Walsall Together partner organisations (Walsall Healthcare NHS Trust, Walsall Council, Walsall CCG, Blackcountry NHS Trust, One Walsall, GP Practices)	Plan for engagement with each stakeholder including how they will contribute to the User Group and/or feedback and recommendations made about services	We shall be working with WT Comms to invite key people to update the WT SUG Group on the planned changes around care pathways.	Amber
6.	Make clear recommendations for service design and delivery, for each identified priority area, service design of care – care pathways. reflecting people’s experience of health and care services and their future service needs	Produce public engagement reports for consideration by the Walsall Together SMT, ensuring there are clear recommendations; include number of people consulted with and how this is a strong representative sample of the relevant population	We will present individual KLOE reports to the CPLG / WT Board but also present quarterly reports to CPLG based on patient stories and additional intelligence. We continue to present to CPLG based on the analysis of the patient surveys.   Respiratory and cardiology reports will be tabled to HAB by mid-February for assurance and then tabled to Walsall Together Programme Board.	Amber
7.	Ensure service design and delivery of the services in scope are influenced by patient and public engagement as a direct result of the Walsall Together User Group- in scope?	Contract Monitoring Reports	Agreed with Walsall Programme Team for quarterly contract monitoring reports to run parallel with Healthwatch Walsall Contract Monitoring Reports.	Amber
8.	Ensure patients, users and citizens know about Walsall Together, the proposed changes to services and how they can influence future service design and delivery	Produce a communication plan detailing how the public will be kept informed about Walsall Together	Whenever a work workshop has been planned and promoted and delivered, we have explained to participants the aims and objectives of WT. Common briefing. We are also using a briefing when one to one patient stories have been captured.	Amber
9.	Attendance at Meetings	Walsall Together Partnership Board   Walsall Together SMT   CPLG	HWW HAB Chair     Healthwatch Walsall Manager     Senior Engagement Lead WT SUG Chair	Green

 

Recommendation

That the Board receive the report and are assured through the reports content that the project deliverables are being taken forward as commissioned

Report Authors:

Paul Higgitt, Healthwatch Walsall Senior Engagement Lead

Phil Griffin, Walsall Together Service User Group Chair

Patient & Service User Engagement Assurance Report November 2020

Introduction

Assurance is an integral component of robust project governance as well as for governance of project management. Through assurance, this programme will undergo a range of reviews at different stages. Integrated assurance is the co-ordination of these project reviews to ensure maximum impact and benefit at minimum cost and disruption.

This report follows on from the detailed assurance report presented to the Board at its meeting in August 2020 which covered the period up to and including the end of July 2020. This report therefore covers activities undertaken by the project during October and November 2020 and provides the Board with assurance that the project as commissioned is continuing largely as planned despite the considerable challenges that COVID-19 19 poses in relation to communication and moving the project deliverables forward.

Context

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways listed in paragraph 1 above and will be held to account for delivery of this engagement project. This report gives assurance to the HWAB on progress to since October 2020 following on from the assurance report tabled to September 2020.

The engagement work is being led by the WT Service User Group Chair with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt, and in time become a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions.
• Identify and seek the views of a range of people using services and those who may use them in future.
• Educate people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

Patient Engagement Work: Diabetes Care Pathway

The challenges around engagement have also been recognised by the Walsall Together Programme Team but were positive that we have been able to continue to engage however in different ways. We recognise the support we have received from various stakeholders in helping to promote engagement activity.

A report on patient and service users’ experiences of living and managing with diabetes has now been tabled at CPLG and disseminated to wider providers and stakeholders. Whilst the report has been welcomed by partners, there have been questions raised around co-production and how recommendations can be taking forward in considering any service change.

Walsall Diabetes Peer Support Group

One key success during this period has been the development of the Walsall Diabetes Peer Support Group. Several pertinent points that were highlighted in the diabetes report were the impact of diabetes on anxiety and loneliness, getting more advice and support around managing the condition and talking to others.

In conjunction with Diabetes UK we have established a Walsall Diabetes Peer Support Group for patients and services users to come together and share experiences. We have held 3 successful workshops to end November with guest speakers around:

• Sharing experiences
• Nutrition, health and wellbeing
• Medicines Management.

Comment from service user: The presentation by Joe Myatt was brilliant and his Q&A answers excellent. We were blessed to have him. Perhaps he could do a Walsall Diabetes Videocast for new diabetics to unlock the mysteries of medication. Even older chaps like me learned stuff yesterday. His response to my Victoza issue was far better than the manufacturers.

Over 40 people have attended so far. We are now looking for service users to take an active part in helping to run and co-ordinate the workshops. This will be done with support and training provided through Diabetes UK.

Walsall Together Service User Group – Terms of Reference

We have now developed Terms of Reference for the Walsall Together Service User Group. This has been presented and agreed by the group. The next stage as the service user group develops is to work with the Service User Group member in order to develop person specifications.  This will help Service User Group member to play a more integral role in the programme.

Walsall Together Service User Group Meetings

We have held our 3rd Walsall Together Service User Group meeting. These have been virtual meetings using Zoom. Again, there were a range of participants with long term health conditions participating.   A summary of the key points are as follows:

• Ensuring that patient and client engagement is continuous through Walsall Together programme.
• Ensuring that there is still patient choice and that patients can access out of borough treatment where possible.
• Strong reiteration that co-production needs to be ensured and that communication and feedback to service users is essential.
• Further discussion around the impact of COVID-19, long term health conditions on BAME communities. Whilst the lead for Diabetes has responded about the work the Diabetes team are undertaking to support BAME communities. The Service User Group have requested a presentation / feedback for Walsall Public Health on delivery to support BAME communities during this challenging period.

The Walsall Together Programme Team attended and presented a useful and informative presentation on Walsall Together Case for Change and the importance of patient / service user engagement.

Service User Group-Expanding Representation

As part of the ongoing development of the WT SUG we want to unsure that we are fully representative of the wider Walsall population. The Walsall Together Project Team have informed us that they would like to see wider representation going forward, not just for KLOE service users but for the vulnerable and underrepresented groups.

We are currently in discussion with the CCG in building on wider representation and shall be working closely with the Healthwatch Seldom Heard Lead on engaging with marginalised and underrepresented groups.

Cardiology Care Pathway Workshops

We have held one cardiology workshop with a small cohort of service users. Key points were:

• Most seem to understand their condition but it’s about managing medication which can be difficult. It is an ongoing process as your conditions changes and some said they felt they needed more regular medication checks.
• Difficulty in managing breathlessness. To understand the condition many have had parents who have passed but in early periods of time few were checked if it was congenital.
• Patient with heart failure, leaky valve, angina, TIA, pacemaker. Dr explained everything as we went along.  Learnt a lot living with it and the support from the self-care management group was very useful.
• Aftercare at Heartcare has been good in relation to advice on exercise and activity.
• However, there were some comments that aftercare in terms of a plan was limited until supported through Heartcare.
• Booklet on life changes good but better to sit down with someone and not just for 5 minutes. Some views that it is about the conversation with the patient after surgery. One patient said he sees it has been fixed even though you still have a heart condition. Mental side when you have heart condition you think a certain way.
• Patient goes to hospital every six months and they put a dye inside his veins and maintain heart rate really push heart and mentally it helps and do not have concerns.
• Given pack and get a blood pressure monitor.  Support for families when patients have a panic attack is important or signs of heart stress.
• Idea Zoom calls 24 / 7 group session. It is the mental impact from heart attack. Mental support immense benefit. Talking therapies support for long term health conditions but not many that we spoke to had been referred or know about this support.
• People say have great fear of future after a heart attack. Value in looking at virtual network.
• Like fact that specialist takes time to listen but brought lack of communication with others dealing with condition. If you have multiple health for those pain, it’s very difficult.
• GP practice can make double appointment. GP said I will take the time as there is a reason – Little London Surgery.
• It does depend which GP practice you can work through diagnosis to make joint decisions. But some make mind up before you discuss issues. It should not be the case. GP good if discuss mental health side of heart condition.
• Also, good liaison with consultants is essential.  Been described Nikoran if going out to exercise. You get frightened when you go out and raise your heart rate of fear of negative impact on your heart.
• Need consistency and stability with the patient and GP with a patient with a heart condition.
• Positive about cardiac care – surgeon communication very positive and have given opportunities to ask questions. Consultant communication with patients positive.
• Some consultants signpost to talking therapies but it is not consistent.
• Occupational Therapist have done assessments but not come back with advice or aids and adaptions for my mom. Not enough consistency of advice after care.
• Useful for patients to have a copy of Heart care pathway flow from hospital to aftercare and rehabilitation. I.e. algorithm for each patient.  Some view no patient or family involvement in judgements. Do all patients get copies of aftercare from discharge co-ordinators?

However due to the workshop being less well attended considering they had been extensively promoted, we have planned to hold a series of 3 further workshops, 1 in December and 2 scheduled for January 2021.

Living and Managing with Respiratory Conditions Workshops

We have now held 2 workshops for patients and service users on living and managing with a number of respiratory illnesses. We captured in depth conversations and a significant amount of intelligence and experiences. The notes from these workshops are yet to be collated.

Patient Stories

During October and November, we have tabled 2 patient stories to Walsall Together Board. The first story was based on a service user who attends the Diabetes Peer Support Group and has several long-term health conditions whilst being supported through IAPT talking therapies. The key points made by Walsall Together Board members were around a more integrated approach around mental health support and within the voluntary and community sector, access to IAPT and promotion for people with long term health conditions.

The November patient story was presented around a lady with co-morbidities and complex health, housing and social care needs. Unfortunately, the story was noted only due to other partnership priorities.

Living with Long Term Conditions Survey

The living and managing with a long-term survey summary report was tabled to the Walsall Together Partnership Board in July.  The survey is still live, and we continue to promote the general survey to capture further intelligence.

Making Information Available

Through the Walsall Together Service User Group meetings there have been several comments around how the intelligence, reports and papers from meeting can be accessed. We have been working closely with Walsall Together Communication Lead to look at ways in which information can be made readily available. It has been agreed that once the Walsall Together website is live, we shall present information under the getting involved and engagement section.

Walsall Together – Healthwatch Walsall Governance

Healthwatch Advisory Board Chair regularly attends the Walsall Together Partnership Board. The HAB chair has highlighted the vital importance of feedback from intelligence tabled to boards and over time the importance of co-production.

 

The Healthwatch Manager continues to attend SMT, whilst the Senior Engagement Lead and WT SUG Chair attend CPLG. However, during this period both meetings have been stood down due to priorities of providers around COVID-19 and social care.

Contract Monitoring

The last Assurance Report presented to the HAB has now been sent to the Walsall Together Partnership Team.  A contract monitoring meeting has now been held. Key points were:

The Walsall Together Programme Team were happy so far with the delivery considering the restrictions on face-to-face engagement. The programme team will be sending a base contract monitoring form for us to complete quarterly.

We went through the assurance report to measure against KPI's. The changes are reflected in this report.

We discussed the KLOES and into the new year they would like us to focus attentions on: 

1. Inequalities
2. Access and experiences of using outpatients and GP's. (need to confirm which areas though).
3. EOL
4. Digitally excluded on the top of Healthwatch Walsall pilot project.
5. More engagement with seldom heard and for me to work more closely with Lynne Fenton who has been doing work around engaging with vulnerable and marginalised groups.

There were discussions about future engagement being less disease specific - but we need to ensure that the intel that we have gathered is still used in co-production

CPLG has been put in hold at the moment and it may well change focus.

It was also agreed that the engagement and development of the WT SUG must be supported by the CCG engagement plans and that there must be commitment to support us with this. Aileen and I are planning to meet with Natalie and Jayne mid-December.

Key performance Indicators and outcomes so far

The key performance indicators for this project (which were agreed as part of the commissioning specification) are set out below with a RAG self-assessment of performance to date. This has also been agreed by the Walsall Together Programme Team.

Key Performance Indicators

Ref.	Outcome	KPIs	Performance to November 2020	RAG Assesment
1.	Recruitment of User Group members according to an agreed person specification developed in partnership with the Walsall Together SMT	Production of a person specification still be completed. Number of individuals recruited from range of demographics and long-term health conditions.	3 WT SUG meetings have now taken place Membership recruited from local population and those with an interested health and social care.  The Terms of Reference for the WT SUG agreed by the group members. New members continue to attend.	Amber
2.	Production of promotional materials and a marketing plan to advertise the roles and recruitment process.	Production of a marketing plan including the details of what has been produced, marketing channels, etc.	Working with WT Comms for this to be incorporated into the wider WT engagement plan.  Website, Newsletter and comms and engagement plan being developed by WT Communications Manager.	Amber
3.	Delivery of a schedule of training sessions to inform Users of their role and the context of the Walsall Together Case for Change	Working with Walsall Together Programme Team on future training and development with SUG members	Informal training around ‘What is Walsall Together’. We are working with WT Comms to undertake training around the Case for Change and the importance of the patient voice.	Amber
4.	Coordination of workshops with service users and other stakeholders, according to the priorities identified by the Walsall Together Integrated Care Partnership (ICP) Board, to discuss people’s experience of current services and how their needs could be better met.	Number of workshops, number of attendees, feedback received including specific recommendations made regarding service design and delivery	We have undertaken 3 diabetes workshops and 1 Cardiology Workshop, 2 respiratory workshops and the development of a Diabetes Peer Support Group.  Contract Monitoring arrangements agreed where engagement will focus on other key areas.	Green
5.	Work closely with patients and users from the Walsall Together partner organisations (Walsall Healthcare NHS Trust, Walsall Council, Walsall CCG, Blackcountry NHS Trust, One Walsall, GP Practices)	Plan for engagement with each stakeholder including how they will contribute to the User Group and/or feedback and recommendations made about services	We shall be working with WT Comms to invite key people to update the WT SUG Group on the planned changes around care pathways.	Amber
6.	Make clear recommendations for service design and delivery, for each identified priority area, service design of care – care pathways reflecting people’s experience of health and care services and their future service needs	Produce public engagement reports for consideration by the Walsall Together SMT, ensuring there are clear recommendations; include number of people consulted with and how this is a strong representative sample of the relevant population	We will present individual KLOE reports to the CPLG / WT Board but also present quarterly reports to CPLG based on patient stories and additional intelligence. We continue to present to CPLG based on the analysis of the patient surveys.	Amber
7.	Ensure service design and delivery of the services in scope are influenced by patient and public engagement as a direct result of the Walsall Together User Group- in scope?	Contract Monitoring Reports	Agreed with Walsall Programme Team for quarterly contract monitoring reports to run parallel with Healthwatch Walsall Contract Monitoring Reports.	Amber
8.	Ensure patients, users and citizens know about Walsall Together, the proposed changes to services and how they can influence future service design and delivery	Produce a communication plan detailing how the public will be kept informed about Walsall Together	Whenever a work workshop has been planned and promoted and delivered, we have explained to participants the aims and objectives of WT. Common briefing. We are also using a briefing when one to one patient stories have been captured.	Amber
9.	Attendance at Meetings	Walsall Together Partnership Board   Walsall Together SMT   CPLG	HWW HAB Chair     Healthwatch Walsall Manager     Senior Engagement Lead WT SUG Chair	Green

 

Recommendation

That the Board receive the report and are assured through the reports content that the project deliverables are being taken forward as commissioned

Report Authors:

Paul Higgitt, Healthwatch Walsall Senior Engagement Lead

Phil Griffin, Walsall Together Service User Group Chair

Patient and Service User Engagement Assurance Report July 2020

Introduction

Walsall Together has identified six priority care pathways through a combination of needs analysis (Joint Strategic Needs Assessment) and partner strategic priorities. The priority pathways are:

• Respiratory
• Diabetes
• Cardiology
• End of life
• Mental Health Outpatients
• Healthy child programme

In order to secure improvement in these pathways a key principle is that improvement is the result of care professionals and patients working together so that care pathways are co-produced and are better understood and navigated by patients to achieve optimal care in the right place, at the right time by the right people.

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways listed in paragraph 1 above and will be held to account for delivery of this engagement project. This report gives assurance to the Healthwatch Walsall Advisory Board (HWAB) and Walsall Together on progress to date.  It is important to highlight the independence of the intelligence gathered through this programme.

The engagement work is being led by the WT Service User Group Chair and with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt and in time by a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions.
• Identify and seek the views of a range of people using services and those who may use them in future.
• Educate people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

The overarching objective of the engagement project is to ensure patient and public engagement in the work of Walsall Together.   Specifically, it is responsible for ensuring:

• all transformation (design and delivery) activities have patient and public engagement at an appropriate stage of change
• the public voice is represented appropriately at operational and strategic levels
• all public and patient communication and engagement activities related to Walsall Together is coordinated
• individuals, groups, and communities know about Walsall Together, how proposals will impact on how they access services and how their views can be incorporated in future service design.

Progress to date

The project commenced in the Autumn of 2019 with work being taken forward by the Senior Public Engagement Lead with support from the Chair of the Walsall Service User Group, Phil Griffin appointed in late 2019.

Our work during the latter half of 2019 and very early 2020 has involved capturing the views of clients, patients, carers and citizens using a patient survey form around diabetes, respiratory, cardiology, outpatient mental health, end of life care and the best start in life and in relation to the care pathways of those with a long term health condition. The Walsall Together care pathway model has represented the patient journey as a tiered model with all pathways starting with resilient communities then onwards through primary and community services, acute care and then specialist care. Patients are being invited to share their experiences of their journeys so that their views can influence the design and redesign of Walsall Together services.

We have also worked to capture the views from people with additional long-term health conditions referred to as “co-morbidities”.  We have also captured individual patient stories where patients have described their experience of a care pathway – good and bad. Patient views have, continued to be and will be captured by and through:

• Direct engagement at key locations throughout Walsall such as Manor Hospital, Heartcare Walsall, support groups, invitations to community events and talks (pre COVID-19).
• Presenting patient stories to Walsall Together Board.
• Social media including Twitter, Facebook, YouTube, Healthwatch Walsall website and through other organisations’ media platforms.
• Undertaking one to one discussion with clients engaged through providers.
• Shadowing staff within the community such as Community Matrons, District Nurses, community respiratory team to also capture individual experiences (pre COVID-19).
• Through our Walsall Together Service User Group and through workshops focused around the 6 KLOE’s.

We are also undertaking specific surveys supported through the Walsall Together Clinical Professional Leadership Group (CPLG) group e.g. diabetes.

We have developed draft Terms of Reference for the Walsall Together Service User Group that mirror the requirements of the host commissioner for patients and representatives to have a voice not just around their condition but the wider conversation around Walsall Together, its drivers and how services are planned to be delivered differently.  This group was scheduled to meet for the first time in March 2020 but because of COVID- 19 had to be postponed.

During the early part of the project’s life we have worked and will continue work to ensure that we are representative of the demographics of Walsall and to also ensure that we capture where possible the views of those at different stages of their care pathways. We are also working to ensure that we capture the views of people with learning disabilities.

By March 2020 we had made positive links with partner organisations to engage directly and we had been building opportunities to engage with patients and clients in many different ways.  However, due to COVID–19 we have had to look at new ways of working differently to ensure the project continued to move forwards.   We considered a different approach to engagement forums that was based on using virtual technology such as Microsoft Teams or Zoom. In the end and after internal consultation the project got the go ahead from our IT people to proceed using Zoom as the platform to support virtual forums.

The paragraphs below summarise work the project continued to take forward during “lockdown” i.e. from late March 2020 to the present time:

Walsall Together Service User Group

We have held 2 Walsall Together Service User Group meetings on the 27th May and the 22nd July. These were virtual meetings using Zoom. There were a range of service users with diabetes, respiratory, mental health conditions, and co-morbidities.   A summary of the key points:

• General communication concerns around regular service changes taking place and the rationale.
• Ensuring that patient and client engagement is continuous through Walsall Together programme.
• Questioning around financial decisions and if the focus is on specific areas of health and social care and the implications on other specialist services.
• Reference was made to the involvement of GP's in the WT partnership.  Given the development of Primary Care Networks, how will the roles of the PCN's, GP's and the other parties to the WT alliance be governed

Priority Care Pathways Virtual Workshops

We are scheduling a series of virtual workshops for 2020 as we are still unclear when bringing patients with long term health conditions directly together will be viable.

Diabetes - June - July 2020

3 virtual Living with Diabetes patient workshops have taken place in June and July (11th June / 17th June and 9th July) and were very successful. Patient feedback was excellent. Over 60 diabetic patients participated, and we had good input from partners including Diabetes UK, Community Diabetes Team and Public Health, Walsall MBC. We are proposing to add to the range of patient information gained by capturing individual patient stories. The plan is to write up the general themes that the data highlights and to input this into CPLG for review and action. A key output to benefit diabetic patients locally is agreement by Diabetes UK work with patients and local partners to establish a virtual peer support group for Walsall patients with diabetes.

Cardiology - August – September 2020

We have begun planning work to hold 3 virtual workshops over August and September 2020. The dates of these have been agreed.

Respiratory - October – November 2020

Dates for workshops to be agreed.

Living with Long Term Conditions Survey

So far, we have gathered the views from 54 clients through one to one interviews (end April 2020). The survey was presented to the then Walsall Together Clinical and Operating Model Group for sign off.

We will be asking for comments from the CPLG on how the intelligence that we have gathered will be used to inform changes in service/care pathway design for them to become more effective or to have better outcomes for patients  based on patients comments.  We will report this back to Healthwatch Walsall Advisory Board.

Survey Summary

The Table below is a snapshot of some of the key points that have so far been identified from analysis of the surveys so far submitted. Although this summary is based on 54 surveys there are some common themes identified throughout. We have highlighted which element of the care pathway have the challenges or most impact on clients and services.  Building on resilient communities and particularly around self-care management and access to specialist services are the main areas where people have highlighted the need for change.

A summary report of findings was presented to the Walsall Together Partnership Board on the 22nd July.

Communication Communication with the patient, GP, and specialist consultants (triangulation of information) seem to voice most concern. The main key issues have been timely communication from consultant to GP and to the patient but also how the patient interprets the advice given by the GP. Some patients with comorbidities have also informed us that it is very challenging to understand their primary condition.

Pain Management A common theme has been challenges in accessing pain management services and the need for a more consistent and joined up approach between pain management and physiotherapy services with the views by some that these services run in isolation. Other issues around pain management have been communicated and varying medication between the pain management services and the GP.  Some people have also informed us that they have self-managed through medication. However, through the survey data and through discussions, patients with pain management have found the self-care management support run through Walsall NHS self-care management team useful and supportive.

Respiratory People have informed us that the community COPD team have been very positive in condition management and reduction in the use of rescue packs however, there have been some views around the inconsistency of people accessing rescue packs through the GP and particularly for people who do not access the community COPD team. 2 patients with asthma informed us that there is no clear pathway for support / community support for asthma or a supported management plan.

Diabetes Through the surveys and discussions with the Pathways for Life Asian women’s support group, education and understanding diabetes is a significant challenge within the Asian communities. Many of the people that we have talked to that have diabetes have informed us that it impacts on their mental health significantly yet there has been for some patients limited support or discussion around diabetes and mental health. Some patients have also told us that the quality of the conversation with primary care around diabetes is important. Some patients informed us that after being advised that they are diabetic they have taken it very seriously particularly around lifestyle changes and podiatry care. We have also been informed by a small number of people that accessing and understanding individual HbA1C levels can help people to control their condition however not all patients have access to this or are helped to understand it.

Mental Health For many who have other health conditions, mental illness also impacts on their life. Some cardiology patients who have had heart surgery, have had a huge impact on their mental health. For those who take up cardio rehabilitation at Heartcare they are also supported or given the opportunity to access mental health support. However, for some people the referral to mental health services is limited or not offered. We have also found that there is a cohort of clients and in particular men who have accessed the GP with poor mental health to be referred to talking therapies but informed that they do not fulfil the criteria and do not understand why this is the case. However, some GP’s have signposted clients to Rethink and they have found the support very positive. The waiting times of psychological services at DWMHT (now Black country Partnership NHS Foundation Trust) are too long for many clients who need to access timely support.

 

Key performance Indicators and outcomes so far

The key performance indicators for this project and which were agreed as part of the commissioning specification are set out below with a RAG self-assessment of performance to date. Bearing in mind this as a self-assessment taken to Healthwatch Advisory Board for reassurance.

Walsall Together contract monitoring is to take place shortly. We do however update our progress as part of the Healthwatch quarterly monitoring report to Walsall Borough Council Commissioners for reassurance.

Key Performance Indicators

Ref.	Outcome	KPIs	Performance to July 2020	RAG assessment
1.	Recruitment of User Group members according to an agreed person specification developed in partnership with the Walsall Together SMT	Production of a person specification. Number of individuals recruited.	Inaugural User group held on 27th May. 2nd meeting held on the 22nd July. Programme of future meeting dates to be agreed. Draft terms of reference have been developed but need to be approved by the HWAB. Scheduled for agenda at September meeting. Membership recruited from local population following wider media campaign and through HWW contacts.	Amber
2.	Production of promotional materials and a marketing plan to advertise the roles and recruitment process	Production of a marketing plan including the details of what has been produced, marketing channels, etc.	No plan at present but work is in hand to complete. End August. To work with WT Comms for this to be incorporated into the wider WT engagement plan.	Red
3.	Delivery of a schedule of training sessions to inform users of their role and the context of the Walsall Together Case for Change	Schedule of training, numbers trained and session content/plan.	Informal training around ‘What is Walsall Together’. We will be working with WT Comms to undertake training around the Case for Change with service users. e.g. Informal training Diabetes UK information around 15 minimum standards. Formal training events are to be planned.	Amber
4.	Coordination of workshops with service users and other stakeholders, according to the priorities identified by the Walsall Together Integrated Care Partnership (ICP) Board, to discuss people’s experience of current services and how their needs could be better met.	Number of workshops, number of attendees, feedback received including specific recommendations made regarding service design and delivery	We have undertaken 3 successful – Living and Managing with diabetes – workshops each with approx. 20 participants and professional support. 3 workshops planned for cardiology. We are working with CPLG for key questions, and 3 planned for respiratory for later in the year. For diabetes we will be producing a summary report with key findings for the CPLG to respond to. Similar approach will be adopted for other care pathways.	Green
5.	Work closely with patients and users from the Walsall Together partner organisations (Walsall Healthcare NHS Trust, Walsall Council, Walsall CCG, Black Country Partnership NHS Trust, One Walsall, GP Practices)	Plan for engagement with each stakeholder including how they will contribute to the User Group and/or feedback and recommendations made about services	We shall be working with WT Comms to invite key people to update the WT SUG group on the planned changes around care pathways, and/or feedback recommendations related to services.	Amber
6.	Make clear recommendations for service design and delivery, for each identified priority area, service design of care – care pathways reflecting people’s experience of health and care services and their future service needs	Produce public engagement reports for consideration by the Walsall Together SMT, ensuring there are clear recommendations; include number of people consulted with and how this is a strong representative sample of the relevant population	We will present individual KLOE reports to the CPLG / WT Board but also present quarterly reports to CPLG based on patient stories and additional intelligence. We have presented to CPLG based on the analysis of the patient surveys. This report is also to be presented to Walsall Together Board.	Green
7.	Ensure service design and delivery of the services in scope are influenced by patient and public engagement as a direct result of the Walsall Together User Group- in scope?	Produce an annual report of engagement activities including the changes and improvements to services made as a result of the engagement	We will plan and prepare an Annual Report towards Jan 2021 to be agreed by WT Board. This reflects the project timeline.	Amber
8.	Ensure patients, users and citizens know about Walsall Together, the proposed changes to services and how they can influence future service design and delivery	Produce a communication plan detailing how the public will be kept informed about Walsall Together	Whenever a work workshop has been planned and promoted and delivered, we have explained to participants the aims and objectives of WT. Common briefing. We are also using a briefing when one to one patient story has been captured.	Green
9.	Senior Engagement Lead to attend SMT meetings by invitation as required to update on engagement activities and to understand future requirements.	Attendance at SMT Production of a plan for future engagement activities	There has been clarity required regarding Senior Engagement Lead and WT SUG Chair representation at SMT meeting. There have been changes in structures i.e. COM to CPLG. Plans for engagement go to CPLG.	Green

 

Project Risks and Impact

Due to COVID-19 the project has faced many challenges in particularly around engagement. However, these challenges have largely been mitigated through new ways of working identified through the Senior Engagement Lead and WT SUG Chair e.g. use of virtual conference calls.

Summary

An analysis of the project KPIs shows that some of the requirements of the contract are being taken forward despite immense challenges brought about COVID - 19 and that the project leads are sighted on other tasks that need to be delivered over the life of the project. The report gives assurance to Healthwatch Walsall Advisory Board that the deliverables of the commissioning specification are on plan but that the principle of co-production is still a goal that needs to be evidenced over the immediate period i.e. over the next 12 months by Walsall Together.

Report Authors:

Paul Higgitt, Healthwatch Walsall Senior Engagement Lead

Phil Griffin, Walsall Together Service User Group Chair

 

Respiratory Care Pathway - Patient Engagement Report

Introduction

Walsall Together is an integrated care partnership between the organisations that plan and deliver health, mental health, and social care services locally. They include:

• Walsall Healthcare Trust
• Walsall Clinical Commissioning Group (including local GPs & Primary Care Networks)
• Black Country Healthcare NHS Foundation Trust
• Walsall Council
• Walsall Housing Group
• One Walsall

One of the key aims is to help the population of Walsall stay well for longer, by supporting them to make better lifestyle choices to help them to live independent, active, and healthy lives. It is about helping people stay of out hospital when possible by providing accessible, co-ordinated, and responsive care as close to home as possible. The aims of the partnership are to:

• Improve the health and wellbeing outcomes of their population.
• Increase the quality of care provided; and
• Provide long term financial sustainability for the system.

Healthwatch Walsall (is an independent champion for people who use health and social care services whose role includes finding out what matters to people and help make sure their views shape the support they need) have been commissioned by Walsall Together to capture the patient and service user voice around care pathways and living and managing with long-term health condition(s). The focus has been on the 6 priority Key Line of Enquiry around Diabetes, Respiratory, Cardiology, Mental Health, End of Life & Palliative Care and the best start in life, early child. This report concerns the outcome of engagement work undertaken in relation to respiratory disease.

Respiratory Illness in Walsall

115,000 people a year die from lung disease in the UK, equivalent to 1 person every 5 minutes, and every day, 1500 people are newly diagnosed with lung disease. Moreover, the health outcomes for people with lung disease have not improved over the last 10 years to the same extent as other diseases such as cardiovascular disease and cancer. The mortality rate (the number of people per 100,000 dying) of people aged under 75 from respiratory disease in Walsall is 48.1, which is significantly worse than the national rate of 34.2.

There were 5040 emergency hospital admissions for respiratory disease in 2018/19 in Walsall. Hospital admissions due to respiratory conditions are a major factor in the winter pressures faced by the NHS and lung disease costs the UK more than £11 billion per year including the impact on the NHS (£9.9bn), and wider economy through working days lost (£1.2bn).

Chronic obstructive pulmonary disease (COPD) is the name given to a range of lung conditions which can cause breathing difficulties. In addition to lung cancer and pneumonia, COPD is one of the 3 leading respiratory causes of death in England and is the fifth biggest killer overall in the UK, accounting for 5% of all deaths each year.

In Walsall, about 2.5% of the population have COPD, which is worse than the national average of 1.9%. In Walsall, the mortality rate of COPD is 64.7, compared to the national rate of 51.7.

Around 86% of these deaths are caused by smoking, and hence are preventable. Given the high proportion of these deaths that are due to smoking, a reduction in the prevalence of smoking would reduce the incidence of COPD and extend the life of those with this illness, as well as prevent or shorten hospital stays and reduce days lost from work.

Around 19,660 people in Walsall have asthma. In 2018/19 there were 260 emergency hospital admissions in adults and 185 admissions in children for asthma. The mortality rate from asthma in Walsall is 3.95, compared to a national rate of 2.36.

Avoidable mortality due to respiratory disease is 7 times higher in the most socioeconomically deprived areas in England, and therefore, respiratory disease is a major contributor to the overall life expectancy gap between the rich and the poor; and the gap is widening. This inequality is related to a multitude of factors, such as greater exposure to risk factors (such as smoking, air pollution, poor housing, and occupational hazards) as well as variation in healthcare quality and access. In addition, there are specific groups that are at significantly higher risk of respiratory illness, such as people with severe mental illness, people with learning disabilities, and the homeless.[1]

What the above analysis helps to illustrate is the impact respiratory disease has on the population and the importance of having a care pathway that responds to patients and carer needs at all points of the disease progression i.e., in primary care through to emergency care and hospital admission and access to specialist services.

We believe the Walsall Together respiratory pathway has as one of its central aims to support patients in the community for a long as possible with access to acute and specialist care when the need arises. We understand that care will be provided by trained professionals in suitable environments across the care pathway and that some patients will be self-managing their condition and know how to manage exacerbations. However, this project is testing how effective the pathway is, in meeting patient needs and to identify things that are working well and those that are not where improvements could be made that benefit both providers of respiratory care and those receiving it working together i.e., meeting the Walsall Together principle of co-production.

 

[1] References:

Inhale - INteractive Health Atlas of Lung conditions in England – Public Health England. https://fingertips.phe.org.uk/profile/inhale

All Our Health: Respiratory Disease – Department for Health and Social Care. https://www.gov.uk/government/publications/respiratory-disease-applying-all-our-health/respiratory-disease-applying-all-our-health

Methodology

This report is the culmination of engagement work undertaken and co-ordinated by Paul Higgitt, Senior Engagement Lead, Walsall Healthwatch, and Phil Griffin, Walsall Together Service User Group Chair. It is based upon a number of individual patient stories and 2 respiratory workshops attended by 36 patients and service users around living and managing with respiratory conditions held during November 2020. We have structured the report so that it summarises key findings and recommendations early on and included as Appendices to the report, the notes of the virtual workshops held in November 2020 and individual patient stories.

Respiratory care pathway: summary of recommendations

From the engagement work undertaken through the project the recommendations for improvement applicable to the Walsall Together Tiered Model of Care are as follows:

Tier 0 – Resilient Communities

Opportunities for patients to share experiences and advice through a variety of virtual and ultimately face to face opportunities to help each other and also to seek advice from respiratory care providers.

Tier 1 & 2 – Primary Care & Community and specialist services
 

Better medication optimisation, advice and support and timely medication reviews as part of a shared decision-making process

Ensure that there is consistency of respiratory care across General Practice during this challenging period that patients are accessing their reviews.

Better communication with the patient through Acute, Community and Primary Care

Enhanced advice around the importance of pulmonary rehabilitation and increase uptake and reduction in those who do not reattend after finding sessions challenging.

Improving Access to Psychological Therapies-More information and promotion of the IAPT / Talking Therapies service for people with respiratory conditions.

Tier 3 – Unplanned Care

Whilst there is considerable work undertaken to keep patients out of hospital at crisis point, there are circumstances where it is necessary for patients to attend for unplanned care. More access to contacts for advice particularly out of hours for patients who do not have access to the community respiratory team, out of hours support.

Tier 4 – Acute Care

Through our engagement we did not receive any recommendations on improvements around this tier.

Patient engagement work undertaken, on which the report’s findings are based

Respiratory conditions can be very distressing for patients. The workshops and the experiences of patients and their carers who participated just emphasised the impact that having a respiratory condition has on everyday living and why access to the right support, with the right information at the right time in a timely way is so important. It was also clear from what people said that crisis intervention as well as ongoing support to help patients manage their condition is also very important. All this serves to highlight that the local respiratory care pathway needs to work well so patients can remain in the community and avoid unnecessary exacerbations of their respiratory condition which eventually could require an urgent GP domiciliary visit or a visit to A&E and even admission.

 

The workshops captured a range of intelligence and that the comments on what could be improved and what could be done differently would be of interest to commissioners and could be used to support improvements in the care pathway in the spirit of co-production.

We also have some data gathered through the individual 1:1 patient stories which we have used to strengthen the report.

Some of the key things patients and carers shared

1. It is key that patients worry about the future, living with the disease and that this impacts on the patients and family members greatly.
2. Patients / Service Users have found talking to others about their conditions through such means as these workshops has been positive. It has given people the opportunity to share experiences and give each other advice and support in managing their conditions. Some participants highlighted that they would like to see a Respiratory Support Group established for people to share experiences and get advice from professionals.
3. It is evident that the support from the community respiratory team is very positive and great efforts are made to support patients to help avoid crisis point exacerbations. However, some patients are not known to the service for a number or reason and would rely on accessing other support through their general practice / 111. 2 patients informed us that at times of exacerbations that they have called 111 and had been admitted into hospital, and where there may have been admission avoidance if they could have accessed community support.
4. More information and telephone numbers for advice and support with managing with a respiratory condition not just GP access. Provide opportunities for patients and carers access hints and tip of self-management.  One patient in early stages of COPD seemed to be kept in the dark until access to Community Teams.
5. It is however about striking a balance between demand and capacity within the system.
6. Patients also informed us that there was confusion around some of the treatments and there was advice given from a patient to a patient within the workshops about accessing additional equipment. Medication optimisation is key but that this also needs to be a shared decision process with medication reviews.
7. There have been useful discussions that some patients said that are self-taught in managing their condition and that they would like more training and to be more informed. Would have liked more knowledge to question and challenge and know more details. However, some people do not want to know much about self-management but are heavily reliant on service providers. Reviewing patient knowledge of medication is important and that the patient needs intervals of medication reviews as their conditions may change.
8. The support offered through the respiratory rehabilitation teams in the hospital and at Heartcare were generally positive however several patients informed us that they were worried about strenuous rehabilitation as they were worried that this having a detrimental effect on their condition, which meant that several patients decided not to reattend rehabilitation.
9. There were also several conversations about triggers in their conditions and how to manage these triggers were possible. However, pre and during COVID-19 some felt that they were either unable to access their GP for advice or support / investigations through GP care were limited.
10. The psychological impact of breathlessness has been identified as a significant concern for many patients, and also the constant worry about time, when will the condition get worse, how long do I have left etc. We were informed by some participants.
11. The linkage between accessing timely mental health support is important. Through the discussion we had conversations around coping mechanism and support. We highlighted that for some accessing services such as IAPT support people through the IAPT and long-term health condition programme, however very few of the participants had knowledge about this service.
12. Not all patients / service users had smoked tobacco through their lifetime but were impacted as a result of heavy industry and pollution. We were informed that there is for some a stigma with having a respiratory condition as some view the cause of being related to personal unhealthy activity.
13. The impact on respiratory conditions for patients with other long term health condition is clearly evident. Managing other health conditions such as diabetes and cardiac conditions at the same time is vital. For some participants told us that symptom management can be difficult in understanding that is making the feel ill.

Conclusion

Walsall Healthwatch, patients, and members of the Walsall Together Service User Group want to see Walsall Together commissioners and providers of health and social care, to act in a demonstratable way to the intelligence provided via this report and in particular the specific recommendations given earlier.

It is only by tangible and measurable improvements made, can it be said that the principle of co-production of care pathways is being achieved in Walsall and that the words in the Walsall Together terms of reference which are based on strong partnerships and working together with service users are not just rhetoric.

We recognise that during this challenging period commissioners and providers of services have prioritised efforts to support those affected by the COVID-19 pandemic and that some developmental work around co-production will be challenging. However, there will be some improvements that can be made relatively easily while others will take longer and will need clinician time and leadership.

Paul Higgitt – Senior Engagement Lead, Healthwatch Walsall

Phil Griffin – Chairman Walsall Together Service User Group

Appendix One - Key Points from Respiratory Workshops

1 - Key Points from Respiratory Workshops

• Hints and tips for living and managing with a respiratory condition and improving quality of life are really important and sharing information on medication and equipment.
• British Lung Foundation provide a good range of quality materials and advice to support service users.

2 - Do you understand your condition and how it impacts on your health?

Based on personal views:

• Dad knows he has what he calls a breathing condition COPD but due to his age does not know exactly what it means. Daughter did not know what it meant until she went to the GP to find out what it involved. Uses Google to find out it was bronchiectasis and that it was irreversible. Know what is causing this and getting worse. He is also aware it is not going to get better. As this impact on his life, my dad is not able to do what he wanted to do.  Having to use a wheelchair and he gets very upset.
• Diagnosed with a rare condition amphiphilic asthma not diagnosed until 39 on top of COPD. Not all patients know that COPD is an umbrella term. Struggle with stairs, walking and limited mobility.
• Some of the service users highlighted that they had wider concerns about the dangers of COVID-19. We were informed that some patients were absolutely petrified due to COVID.
• Treatment under Walsall Dr Matton Hudsey, 3 years ago trial drug – MEPO and results were amazing. Was attending hospital about 10 times year with severe respiratory distress but have not been in hospital for nearly 1 year. Problem it is a progressive disease and at my age cannot do the usual life things. Stopped maintaining family relationship because of the risk.  However respiratory nurse from Walsall has still been calling me to check up.
• Other service user has COPD, but the consultant indicated that it was not oxygen levels but breathing and getting progressively worse can now do very little.  Accessed pulmonary rehabilitation but found it a bit too much.  However, pushing more helps lungs but had a bad experience and it put me off.  It is about maintaining the sessions and found a difference but now it seems to be getting worse with no sessions due to COVID. You have to do pulmonary rehabilitation at the hospital for a good couple weeks to see benefit.
• I take Hypertonic Saline in the morning before doing anything found rather than liquid use hypertonic and keeps lungs open more. Other service users in the workshop did not know about this.  It has also helped spirometry on testing capacity.
• Confusing for some, some use nebulisers, and others trimbo and blue inhaler.
• Spiro understanding is really important at is gives a good indication of where we are at in terms of the disease. One at home tube but hospital spirometry different as it records more information.
• Husband recently diagnosed with IPF and do not know how long he has left but due to COVID telephone conversation is all we have had. Under Walsall GP. His journey – knowledge of condition is very limited. No one has sat down and explained the condition, other than in next 6 week will be on a trial medication. Asked what prognosis is and told will discuss this when you come in. Referred to QE from GP. 12 weeks coughing he was not happy to be fobbed off. After CT scan but then all was closed down to us due to COVID and Biopsy in QE and results in December 2020.
• Have Bronchiectasis diagnosed 2004? Thought it was asthma. Saw consultant at Walsall Manor and had a scan. I continue medication until last 2 years my condition has deteriorated and now having 4 to 5 episodes year. Rescue packs work most times but In May it was not working thus changed antibiotic. It’s a hidden disability. When there was no traffic and warm it was great. Last October 2020 had COVID and it put me on my back for the best part of 2 weeks. Still struggling to get about in November but the rescue pack has helped with the Prednisone.
• Breathless all time, having to sell our house due to the increasing difficulty with the stairs. People do not recognise it as a disability. It does not just physically affect but mentally and now on tablets due to mental health.  I also have diabetes and find it very difficult to manage this at the same time. Husband Bronchiectasis and COPD and deteriorating over time. It affects me as his carer physically and mentally.
• Been back and forward with my GP, medication changes regular, and now on Relvar because I approached GP and had reviews, was still having flair ups. As things moved on moved from Serio Type 250 now onto Revefenacin. Have fibrosis in bottom of lungs and as scarring increases. Realised it must be managed and that will never be cured.
• Its more understanding from others, do class it as a disability. I understand my treatment and condition but not all do. When sat down with right people they have helped. My employer also keeps an eye on me which is positive.

3 - What Could be Improved?

• An integrated approach such as at Heartlands is much better for the patient.
• Admitted into AMU at Walsall Manor in November, treatment well explained, however mother-in-law has COPD and was admitted. She is over 80, she was moved around a lot and the main issue was communication when called told she was moved and chasing around a lot.  She was told if you improved you will be coming out tomorrow, but she heard she was coming out and this was confusing. It is about the definitive communication.

4 - Positives in Care Pathways

• Went to GP, choice to go to QE as they had more detailed records and select choice.  Now at self-management stage with NEPO.  Requested review. Self-administration of rescue pack. Get sputum pot, deliver a sample and that is good.
• More people are becoming aware of Bronchiectasis and there is more information. Can’t fault treatment in last 5 years. Husband with COPD brilliant respiratory nurses who good giving information and advice on self-care particularly around rescue packs.
• In relation to community services. Under Heartcare Walsall, referred to pulmonary rehabilitation but when went I felt sessions hard.  Creating mental barrier. Respiratory Team Walsall Manor now doing video links which are good to keep an eye on you doing rehabilitation during this challenging period. Getting you to use upper part of chest and remove sputum which if sits to long can make it worse. Hospital rehabilitation has been good but during last 10 months feel gone backwards on this due to no physical interaction.
• Access rescue packs initially by GP but now by internet pharmacy. In last 12 months used 5 packs. I request through ECO then GP calls to say do you really need this. Respiratory nurse at hospital is happy with my use. For me when on the rescue packs do supply sputum sample. I do know when I am going downhill. I do wait at least 5 days before use. It is always when the weather goes damp.
• I have an Aerobika Machine with fan has been useful for me but not all service providers have these. The fan forces pressure deep down until bottom of lungs and if you do it in the morning it makes a huge difference.
• Point made that it has been good in these meetings to share information on techniques.
• Use the My GP app to get restocks and put in information to co-ordinate to one visit to pick up medication. Healthnet home care useful as with rescue pack particular during COVID has been difficult. You can say if do not need it its good.

5 - In relation to GP access and Communication

• I have not had a call from GP but no need if treatment elsewhere at Heartlands.
• GP practice is in a group and have been sending out letters but when ring GP surgery they know nothing about. Received a letter around self-care from palliative care centre but we thought palliative care when were very worried.
• I have my rescue pack as it can take 14 days to get into GP. This was Pre COVID.
• GP during COVID have adapted and the telephone calls are good, do not always need to see the GP. Communication from St Peters Surgery has got better.

6 - What could be delivered differently to support you?

• More use of social media set ups like these as I feel safe.
• More community Zoom settings with clinicians and the community-based team. They can still see me on Zoom.
• Used to be a breath easy group, for people to come together – Virtual Q&A sessions As I have not left the house for over 10 months.  I have not had an attack in 10 months and previous to COVID I visited hospital over 15 times in 2 years.
• Or those who have severe long term health conditions virtual is the way forward and to get feedback from patients. This would also help with physical congestion at the hospital.
• Quite insulted that my husband’s first appointment with his IPF at QE will be on the phone. Zoom and other platforms would be best. In normal times you would see consultant and CNS but one person over phone not ideal.
• Sharing experience with other online is also helping with mental health. Through this time the last place some respiratory patients want to go to is the hospital.
• A more integrated approach between the respiratory consultants / team and GP. An example I have COPD, Bronchiectasis I have also developed Type 2 Diabetes probably due to comfort eating when I feel down with my condition and due to inactivity.  I have also developed AF.  I have episodes when I am struggling to breath and dizzy.  I do not know if it is the AF or COPD causing this. When I see my GP, he says it is my COPD. My AF has not been monitored for a while and I am unsure if I have or will get heart failure. I have been told I have stage 3 COPD.

7 - Thinking about interaction with services what do you think are working well?

• Community based Respiratory Nurses.
• I am under Manor not community team but get treatment through Heartlands and now self-administered. Zoom chats such as this are positive as they help others understand their condition.
• Working well, COPD Nurses in community good and visit now and again. Regular contact positive.
• Other patient said that the COPD nurses and community team a god send, before suggested by GP to be in the system I felt quite alone but as part of community service for Dad and given me reassurance. It is the people round the patient that also need support and condition understanding. Could always get through to a GP but now community service easier to access and do absolute upmost.
• Dad admitted only if he has had a serious infection, he has not had to go to hospital for check-ups etc. All have been done in the community. Did used to have a regular breathing test at the GP for peak flow but has not had it done.  Not aware he could have this at home.
• Understanding your peak flow some patients found this useful to be done regularly.
• Only criticism as last occasion in hospital given Trimbo without a mask discharged and not used with mask.  Many do not have access to all the same information. Saline for example helps to spit up mucus in the morning.
• Anything to help get mucus off chest would be helpful.
• Feel we are quite educated but many others are not. Dr Hudsey can communicate and with a great bed side manner to help patients understand their condition. An example from start told me everything and being honest.
• Difficult sometimes to access consultant due to waiting list.
• Understanding how allergies impact on conditions such as cold, pollution, damp, cold is important.  Ok at home but when start moving around get worse. This in turn impacts on our lifestyle and weight gain.
• Attacks are really frightening and come with a vengeance. Community team are reassuring and if it were not for this I would end up in hospital. Anxiety is playing a big part and any support around helping with this would be useful.
• Impact on other health conditions not had blood tests for 9 months.
• Agreement that some patients are self-taught.  Would like more training and to be more informed but is there capacity in the system. Would have liked more knowledge to question and challenge and know more details. However, some people do not want to know, and one size does not fit all.
• Using the internet has been a source for many but is this the best place. However, the BLF information is useful. www.BLF.org.uk and regular updating scientific evidence.
• During this period and prevalence of COPD going up. Question about capacity it has been a challenge in the system.
• Admitted into New Cross in 2019 they wanted to put me to sleep but they could not, I found it very frightening. Then transferred to Walsall Manor. Outpatient at Walsall Manor supported but the rehabilitation they over done me, and it knocked me for six.
• Heartcare Pulmonary rehabilitation positive and on a structured programme. Found is difficult getting the effort to get there. If not fortunate to drive it can be challenging. More information about accessing public transport. It puts people off.
• As a patient at Walsall Manor on the respiratory wards and intensive care, had to be ventilated in 2019. At time having thoughts its very distressing. Put faith in staff we must let staff take over. Care on Walsall Manor wards the specialist team was fantastic but staff on wards - poor communication I could not get toilet and incontinent after being laying in it for a few hours.
• But at Heartlands hospital kept up to date with treatment plan and kept up to date with care. Care at Heartland seems more joined up between inpatients and outpatients as outpatient clinic next to respiratory ward.  This was however before COVID. Information from New cross to Walsall Manor was delayed and they did not seem to know much about me.  The service between hospital and primary care do not seem to be joined up.
• Due to COVID and one Doctor practice but not been able to keep the appointment with nurses as she has been terribly busy. I rely on 6 months with nurse. Not known to community respiratory nurses. Have rescue pack  months ago through the GP. If I get flair up or I’m bad I call the GP. Normally I can get through. If I had an exacerbation at weekend call Waldoc.
• Variation in knowledge. Each year I used to go to hospital as I have a Cpac, but not sent for some time. Never had anyone to know who to contact. This is helpful.
• What is the access to the service for those who do not know about Community Team? Getting access to it. I have even stopped and started my medication depending on how I have been feeling.
• More information and telephone numbers for advice and support with managing with a respiratory condition not just GP access. Provide opportunities for patients and carers access hints and tip of self-management.  One patient in early stages COPD seem kept in the dark until access to Community Team.
• Even before COVID being part of a larger GP practice however when you can get through, they do action very quickly and get my dad in. It may be sign time, however every time my dad must see another GP and must explain myself.
• Worry about medication as prescribed by GP and then hospital need to change medication, not seeing GP at moment to have in-depth check-ups. Worry if my medication is right for me. Medicine management is really important.
• I get really confused that there are so many different medications. It is great that I can call the respiratory team for advice and unfortunately, I do not seem to get much advice from my GP other than an annual Spirometry test. I must rely on the respiratory team, I think that there is too much emphasis on the respiratory team.

Appendix Two - Patient Stories

Respiratory Case Study -1

D is 79 years old and has COPD and dementia. Mainly due to the dementia she frequently called 999 (sometimes 3 times a week) and would be taken into A&E. From April 2018 to March 2019, she had 17 A&E admissions to Walsall Manor.

After MDT meetings around D’s care involving the respiratory team In March 2019, she was moved into sheltered accommodation at OL. At the same time, she was also referred to the locality based Social Prescriber in West 2. The Social Prescriber arranged for her to attend Darlaston Town Hall (lunch club) and Darlaston Fellowship as she has previously lived in Darlaston.

This lady's admissions to A&E reduced to 6 from April 2019 to December 2019. She has not attended A&E since December. Moving to OL and the input from the social prescribing team has had a very positive effect on this lady that has resulted in greatly reduced A&E attendances.

She has been checked by the matron every 2 weeks and has 4 carers in a day. D called an ambulance as there was no other way to cope with her symptoms. This is the 6th or 7th time that D has been admitted into hospital in the last 12 months. 

Previously D mentioned that she had not be heavily supported in how to manage her condition at home but has used her rescue packs and had to ask the GP for others. It is clear that social engagement and activity has helped this lady by focusing attentions away from just her conditions.

Respiratory Case Study - 2

JSS

Bentley Medical Centre

DOB 1956

In July 2019 JSS had visited her GP in Bentley after becoming more breathless for quite a considerable time. GP referred JSS to Walsall Manor for a spirometry test and had been diagnosed with COPD. JSS was not managing with the breathlessness very well and was taking steroid medication for exacerbation's sporadically when she felt exacerbation coming on.

JSS started to feel more poorly and was requesting steroids. She was able to get 4 packs of steroids without monitoring. JSS had been referred to the COPD community team but had not in the period of time had a community visit. 

In Oct 2019 JSS was having breathing difficulties and after calling 999 was taken into Walsall Manor and onto the ITU ward with respiratory acidosis. JSS spent 5 days in ITU to manage the acidosis and to bring her breathing to a controllable rate.

JSS was discharged from hospital on the 25th of Oct 2019 and was referred again to the respiratory team in which the Community COPD Nurse visited JSS on the 26th of Oct.

The COPD Nurse undertook bloods to get an overall picture and started to develop a management plan, explaining to JSS about using inhalers to their full capacity and exacerbation management.

JSS was referred to heartcare by the COPD team for a 12-week pulmonary rehab course which she found very reassuring and they were able to reassure her, examine, give advice on exercise and at the end her statistics had improved significantly.

Before JSS was struggling to do the basic housework and struggled to go upstairs. JSS is now able to get out and have a quality of life. She now understands medication and her condition and has also been able to get support through her GP to manage her anxiety which is linked to her condition management.  The support and relationship with the COPD team has helped JSS significantly and she has said its the assurance that matters. Her family have also been advised to look for signs or worsening periods and when to call to get advice before starting any additional medication.

Respiratory Case Study - 3

SP

DOB 1950       

S has severe COPD and was diagnosed 5 years ago. S is on oxygen 24 hours a day.  Although S has a severe occurrence he does not have / need regular health visitors at home. One of the main challenges for S with his health condition is loneliness. S has not too long ago lost his wife who had Alzheimer’s. S is impeded by his condition in relation to getting out and about mainly as the battery of the oxygen support will last just 2 hours.  S visits the palliative care centre day centre regularly to socialise, talk to people. In explaining to us COPD can get you really down so social activity and talking to people really help, but also at the Palliative Care Day Centre they are trained, welcoming and supporting staff here.

The staff make a huge difference and are really helpful, encouraging and enthusiastic but remain professional. S explained that he has not had an exacerbation for 12months. S has not been given a rescue pack.  S is though able to monitor his oxygen levels and use the support equipment well.

S knows that his condition will worsen over time. S is though disappointed that he never had a specific diagnosis nor discussions on if the condition worsens how this will impact on his life expectancy.  S has been explained about an advanced care planning conversation within him but has decided that at the moment of capturing his story he declined the conversation.

Respiratory Case Study - 4

D’s Story

D is 84 and lives in Darlaston, he has multiple health conditions including angina, quadruple heart bypass, bronchiectasis, arthritis, and fibromyalgia. D also has oxygen at night due to sleep apnoea. 

D used to smoke but also worked in the steel mills in Willenhall for over 20 years where it was dusty and breathing in gases from hot metals.   D tried to a course of exercise for pulmonary rehab but has found it too difficult as it was too painful, and this was impacting on his arthritis.

D has a really good relationship with his GP Dr Sina and is able to see the GP when needed and they are very accommodating.

D also has rescue packs for his COPD but with support from his wife only uses it when absolute necessary.  D also only calls his COPD team when absolute necessary.

The challenge for D is twofold. He has many different appointments for each of his conditions but feels that there is little discussion between different organisations about how the conditions interlink.

D is in poor health but is happy with the level of care he receives but spends a great deal of time going to different appointments.

D used to access pulmonary rehabilitation at Walsall Manor but with his other deteriorating health conditions found this challenging and decided to withdraw from the support. He has been able to access effective pain management through his GP. He finds that the pain management is also a fundamental part of his respiratory management and finds that good pain management helps to reduce exacerbations.

Respiratory Case Study – 5

J’s Story

J is 65 years old and lives in Beechdale. J has Bronchiectasis and was diagnosed with heart failure in 2018. J’s conditions have been progressively getting worse. J has regular chest infections and dizziness thus he tries to limit the number of times that he goes out. One of the main challenges for J is he has found it difficult to come to terms with his condition.

This has affected his mental health considerably. During the pandemic J has had to self-isolate which he feels has made his condition even worse as he spends more time in the house on his own thinking about his conditions.

Although J finds his GP very helpful, he finds it difficult to understand if his symptoms of dizziness, shortness of breath and confusion are a result of his lungs or heart. J has been receiving support from the respiratory team in relation to advice, medication management and support. One of the vital elements of support from the community respiratory team has been around managing steroid use in chest infection management.

However, J feels that he has not had much support for his heart condition. His last two check-ups with the consultant have both been cancelled and his next appointment has been scheduled for March 2021.

J’s likes attending to his allotment during the periods of better weather and has been offered support by other allotment members to care for his plot when he doesn’t feel that he can maintain it.

Respiratory Case Study – 6

T’s Story

T is 49 and has Asthma. She seldom visits her GP practice as she is usually fit and well. However, T had to attend the hospital A&E in October 2019 due to an exacerbation of Asthma which is normally well controlled. T was given nebulisers and a five-day course of Prednisolone 40mg and discharged.

She continued to feel unwell so went to see her GP in October 2019 due to issues unrelated to the asthma but was still wheezing so the GP made the asthma the priority and subsequently treated T for the asthma.

T felt exhausted and had resorted to sleeping sitting upright to ease her breathlessness and wheezing, her mobility had become restricted and she was experiencing pain in her neck, shoulders and back due to the constant coughing and struggling to breathe. T reported to her GP that she was not coping well with this episode both physically and emotionally and was also struggling to work full time and had no choice but to reduce her working hours.

The GP prescribed a further course of Prednisolone and advised her to see the Asthma Nurse who she saw in November 2019. The Asthma Nurse was so concerned at how unwell T presented with her breathing, that made an urgent appointment to see the GP the same day. T was prescribed a course of antibiotics.

In January 2020 T made another urgent GP appointment, and was advised she would be referred to a Respiratory Consultant / Team at the Manor hospital. T requested this referral to be made as urgent if possible as she had already had 3 courses of steroids in 3 months with one visit to A&E and had been feeling unwell for four months by then and had been unable to sleep and sitting upright in bed.

T made another appointment to see the GP on the 15th of January 2020 due to struggling to breathe and was advised to make an appointment for spirometry and a referral to the Respiratory team at the Manor was made. T asked for this to be made as urgent but was advised it would be a routine appointment with no indication of when an appointment would be made available.

The GP advised that T made an appointment with for spirometry and this was made but with a health care assistant (HCA).

T was then told by the HCA that she could not have the spirometry as she had taken Seretide that morning (as directed by the GP). The spirometry took place. After the first attempt the result was poor and another attempt was made. T asked how many more attempts were required, and she was told, ‘till we get the result we want’ and it would be around six more attempts! She was also told that the Montelukast the GP had recommended was not effective and told me ‘not to bother taking it.’ The HCA said that she had looked at T’s chest x-ray from February 2019 and that her lungs were in a ‘terrible state’ that this was indicative of the asthma not being managed properly. Furthermore, T was told the appointment with the respiratory team could take up to at least three months if not longer. The HCA also said being given a nebuliser regularly was very damaging for her heart.

T decided to see a private GP and advised of the history and of having had steroids prescribed four times over the past twelve months and unusually, having three episodes in a twelve-month period. T was advised that given her history in particular over the past three months that she needed to attend Urgent Care at the hospital immediately.

After attending A&E and three nebulisers later with limited effect, T was admitted for overnight observation and monitoring. The question of why she could not have a nebuliser at the GP practice was asked. The usual advice regarding the dangers of Asthma being potentially fatal was given, and that she needed to be treated in line with guidelines. They were concerned that the referral to the respiratory team was routine and not deemed as urgent when clearly, they were struggling to get it under control, and they were alarmed that I had been in this state now for over four months.

In summary,

• Should T have been referred to the Respiratory Team sooner?
• Concerns about medication management.
• The impact on anxiety and worry around the condition which inevitably exacerbates it.
• Feelings that support for Asthma patients is not at the same level of other respiratory diseases.

T made a formal complaint to her GP practice. The GP he agreed with all of T’s concerns and was equally as concerned about her experiences and has reflected and stated that they should have telephone for an ambulance when T attended the surgery and should have referred her to respiratory as urgent and not routine. It was a constructive conversation, and the GP was very professional and reflective.

  

 

Walsall Together Patient & Service User Engagement: Diabetes Summary Report to September 2020

Context

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the priority care pathways. This report gives assurance to CPLG on the work undertaken with patients and service users living and managing with diabetes.

The engagement work is being led by the Walsall Together Service User Group Chair and with management support provided through the Healthwatch Senior Engagement Lead – Paul Higgitt, and in time by a fully constituted WT Service User Group which will:

• Bring people together with physical and mental health needs, learning disabilities, young and older people, and people with long-term conditions.
• Identify and seek the views of a range of people using services and those who may use them in future.
• Educate people about Walsall Together, the intended benefits and new models of care delivery.
• Enable co-design and co-production of service change by representing the voice of patients and citizens.

Patient engagement work: Diabetes Care Pathway

Whilst it has been challenging in relation to engagement during this period, we have continued to work with partners to capture the patient and client voice virtually and through social media. We have now held three diabetes workshops with over 60 participants.

The key points identified have been:

• Very positive views around the community diabetes team and podiatry support. In that if you are known within the community diabetes team, access and guidance is positive
• Impact on mental health and need for support for people with diabetes. Some service user has felt a sense of loneliness and impact on mental health which has been exacerbated due to COVID-19. However, of those we have spoken to very few were aware of a referral system into Diabetes and Talking Therapies
• Many service users have informed us that they would like to see a Peer support group established even virtual (Healthwatch Walsall are looking to support development of a Diabetes Peer Support Group in conjunction with Diabetes UK
• Commonalities in relation to poor access to information around diabetes around nutrition and appropriate eating unless known to the service was highlighted. Where do people go for support and general advice on nutrition and health
• Diabetes UK also attended the workshops and shared their information on their 15 healthcare essentials. Some service users are aware of the checks undertaken as part of the diabetes and Me programme, however a number of service users were not aware of the full health check list and that is was not consistent
• We were able to engage with a representative and service user from BAME communities, who informed us of the impact of diabetes and COVID-19 and the need for grass roots information on support offered. Focused information and support at those at most risk
• Some comments from people from Asian communities – lack of understanding around nutrition and what is said to people in relation to advice. Some Asian people cannot read and write in own language. Not enough talking within communities around the condition. Feel they go to the GP and many patients’ concerns seem to be put down to diabetes.  It was also highlighted that it does not matter what ethnic group you are from all patients need to be able to access the same information
• Ensuring access to better access to information around medication management or some services user
• Many people have found the diabetes awareness course very informative but need to opportunities for further follow up with dietitians.  We were informed that not all service users had been referred to the courses and for those who were not newly diagnosed would be interested in attending, even if this were virtual during these challenging times
• It was questioned who co-ordinates the pre diabetic referral. It is not clear to all patients. NHS pre diabetic support noted through public health, but awareness is not consistent. It was felt that not all GP practices refer into this service
• Clearer support offered to manage diabetes and heart conditions (particularly around circulation). Community diabetes team have been very helpful but still awaiting a referral to Cardiology
• Not all service users were aware that for vulnerable clients during these challenging times there are home eye screening service available, such as through on call optitions (other providers may be available).
• Although there were many positive comments around service provision there were comments that if the Community Diabetes Team, NHS pre diabetic checks, Walsall Public Health prevention initiatives and Diabetes UK do all these providers work in conjunction.

Summary

Whilst this report is based on the feedback from 60 service users and with an increasing prevalence of Diabetes T2 in Walsall there are some consistent comments from those who participated. These are mainly focused on consistency in communication through GP’s. access to the right information and support at the right time and the impact of mental health and loneliness for service users with diabetes.

Workshop Questions

Below are the key questions that we have guided the conversations during the workshops:

• Do you understand Diabetes and how it impacts on your health?
• What is working well in helping you manage your condition?
• Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions?
• Have you been able to seek the right advice from the community diabetes team and how have you been supported?
• What could be delivered differently to support you. Could there be different ways of working?

 

Report Authors:
Paul Higgitt, Healthwatch Walsall Senior Engagement Lead
Phil Griffin, Walsall Together Service User Group Chair

Walsall Together Patient Engagement – Summary Report June 2020

This summary report outlines the key intelligence that has been captured through the living and managing with long term health conditions survey. Whilst Healthwatch Walsall continues to capture the patient voice around the 6 key lines of enquiry (KLOE’s) through the survey, we are ensuring that we decipher the information from patients and clients pre COVID-19. This is to ensure that the data captured is not distorted due to changes in care during this period.

Context

Healthwatch Walsall have been commissioned by Walsall NHS Healthcare Trust to work with partners to capture the patient / client voice around the 6 KLOEs. The purpose of this work is ensuring that the patient voice is embedded into the services specification design around the 6 key lines of enquiry. The intelligence and views captured is also to ensure that there is       
co-production in the design of services.

Methodology

Our work is to capture the views from clients, patients, carers and citizens around diabetes, respiratory, cardiology, outpatient mental health, end of life care and the best start in life and in relation to the care pathways of those with a long term health condition. We are also looking to capture the views from people with additional long-term health conditions – co-morbidities.

We are also developing our Walsall Together Service User Group for patients and representatives to have a voice not just around their condition but the wider conversation around Walsall Together, its drivers and how services are planned to be delivered differently.  

We, through our work, need to ensure that we are representative of the demographics of Walsall and to also ensure that we capture where possible the views of those at different stages of their care pathways. We also ensure that we capture the views of people with learning disabilities.

We are capturing the views through several ways:

• Direct engagement at key locations throughout Walsall such as Manor Hospital, Heartcare Walsall, support groups, invitations to community events and talks (pre COVID-19).
• Presenting Patient Stories to Walsall Together Board.
• Social media including Twitter, Facebook, YouTube, Healthwatch Walsall website and through other organisations’ media platforms.
• Undertaking one to one discussion with clients engaged through providers.
• Shadowing staff within the community such as Community Matrons, District Nurses, community respiratory team to also capture individual experiences (pre COVID-19).
• Through our Walsall Together Service User Group and through workshops focused around the 6 KLOE’s.
• We are also undertaking specific surveys supported through the CPLG group.

By March 2020 we had made positive links with partner organisations to engage directly and we had been building opportunities to engage with patients and clients in many different ways, however, due to COVID–19 we have had to look at other ways to engage with people in particular through social media and virtual engagement.

Walsall Together Service User Group

We held our inaugural Walsall Together Service User Group meeting on the 27th May.  A summary of the key points:

• General communication concerns around regular service changes taking place and the rationale.
• Ensuring that patient and client engagement is continuous through Walsall Together programme.
• Questioning around financial decision and if the focus is on specific areas of health and social care and the implications on other specialist services.
• Reference is made to the involvement of GP's in the WT partnership.  Given the development of Primary Care Networks, how will the roles of the PCN's, GP's and the other parties to the WT alliance be governed?

Planned Work

We are scheduling a series of virtual workshops for 2020 as we are still unclear when bringing patients with long term health conditions directly together will be viable.

• Diabetes                          June - July 2020
• Cardiology                      August – September 2020
• Respiratory                     October – November 2020

Living with Diabetes patient workshops 11th June / 17th June 9th July.

Scheduled Walsall Together Service User Group 22nd July.

Living with Long Term Conditions Survey

So far, we have gathered the views from 54 clients through one to one interviews (end April 2020). The survey was presented to the then Clinical and Operating Model Group for sign off.

Survey Summary

Below is a snapshot of some of the key points that have so far been identified. Further in the report is a breakdown of the views raised from patients and clients in more detail.

Access to information around understanding and managing diabetes particularly within the Asian community and the impact on Diabetes and Mental Health. Also ensuring patient access to the minimum standards for Diabetes health checks
 

• Access to timely mental health support for men, some have been referred to talking therapies to find that they do not fulfil the criteria.
• Ensuring that accessing pain management and psychological services are organised for the patient in a parallel coordinated way.
• Ensure that all COPD pathways are supported with assistance to manage the condition, and in particular understanding care pathways with Asthma.
• Cardiology pathway. Better communication between consultants and patients. Confusion and mixed messages to patients from different consultants.
• Communication with patients with comorbidities and being supported to understand symptoms.  Specialist management and communication between patient and communication between consultants.

In the following table are the key points extrapolated from the surveys to end April 2020.

Intelligence Summary

Survey No	Pathway	Summary patient survey comment	Tier
1	Mental Health	Not offered psychological therapies - husband cancer and understanding support for her helping her husband. Culture for Asian ladies is one of get on with it. Little support from GP around mental health and supporting the older Asian community to discuss mental health. Difficulty in having conversations with primary care for older Asian ladies. However, social prescribing to ACCORD Asian Women’s Group effective.	Tier 1 - GP, Primary Care.
4	Mental Health	MH epilepsy pathway could benefit from links to the voluntary sector. Valued support from third sector around social prescribing and support through Making Connections.	Tier 0,  Resilient Communities (links to voluntary sector).
7	Mental Health	For patients with comorbidities cardio and mental health access to pain management an issue. Pathway needs to build in access to pain management. Question is this a capacity issue and relationship with physiotherapy and pain management. making the system work better and ensuring pain management and physiotherapy are linked together timelier. Access to specialist services and joined up approach needed between pain management and physiotherapy.	Tier 2 - access to pain management, physiotherapy.
8	Mental Health	Importance of self-care management group in Walsall to help people to understand and manage their condition better. In relation to mental health better design to incorporate faster access to Psychological Therapies and pain management issues.  They seem very disjointed for some patients. i.e. timings, referral, and consistent support with pain management.	Tier 0 – Resilient communities support for self-management. Tier 2 – Psychological therapies and pain management.
12	Mental Health	Mental Health pathways - Stroke need regular access to physiotherapy and psychotherapy. Had a stroke several years ago and it has really affected my mental health, but no support offered.	Tier 2- Specialist community services i.e. physiotherapy and psychotherapy.
28	Mental Health and Rheumatology	Better communication between primary care and pain management.  Poor communication between GP and pain management and impact on pain management and depression. Ensuring access to psychological services. Conflicting views between pain management and primary care in relation to medication withdrawal.	Tier 1 and Tier 2 – Access to pain management and psychological therapies.
39	Mental Health	Mental Health pathways - no consistent approach from GPs across Walsall in relation to access appropriate and timely mental health services. Patients, even with suicidal thoughts are not fulfilling criteria for talking therapies. Closed door for support after talking therapies not available. Much clearer mental health pathway from GP attendance.	Tier 2 – access to specialist MH services.
50	Mental Health	Attended Rethink Men's Mental Health Anxiety and Depression Group several members not eligible for talking therapies and believe that this is part of a bigger picture and concerning for men at crisis point. However, increase in uptake to Rethink who have capacity to provide a service.	Tier 2
40	Mental Health	Clearer and robust care pathway for adults with mental health and autism.  Difficult to show anxiety and emotions and access support with autism. No access to talking therapies.	Tier 2 access to specialist MH services i.e. patients with autism and their carers and to talking therapies.
49	Mental Health	Challenges in early intervention in mental health. Visiting GP referred to talking therapies and not fitting criteria. Unclear as to what the criteria is for talking therapies. Long waits for psychological therapy at DWHMT.	Tier 2 - Unclear as to what the criteria is for talking therapies. Long waits for psychological therapy at DWHMT.
6	Diabetes	Access to appropriate and timely continence services for patients. Self-care management run through self-care management team is good but would be better linked with consultant care. Services need to be looked at around GP for patients with a long-term condition, timescales to access care and joined up to link support and understandings how comorbidities affect each other.	Tier 1 - self-care management Tier 2 – Access to GP and Consultant.
15	Diabetes	Diabetes care pathways - importance of foot screening checks by practice. Patient perspective foot checks important. However, uptake is not consistent by patients throughout Walsall.	Tier 2: Specialist foot care services. Ensure that there is consistent access throughout Walsall.
14	Diabetes	Diabetes pathways designs needs to make available - help with motivation. Asian communities - suggest access opportunities to self-care - social prescribing to leisure and sports.  Diabetes team and GP referring to healthy living services. Asian communities more at-risk of diabetes and carbohydrate control. Big misconception in the Asian community in Walsall that Diabetes is only linked to sugar. Many people do not realise that when you are at the stage of insulin usage your weight management can get worse.	Tier 1 – Building Resilient Communities within Asian communities to increase awareness and understanding around self-care management. Tier 2 Specialist Community Services to focus on Diabetes support in Asian communities.
27	Diabetes	Impact of Diabetes management for patient wanting to access health support such as fitness on a low income. Programmes such as Bridges allow those on a low income to access this. The importance of self-care management with T2 Diabetes. Ensuring that there are early opportunities to support people who are borderline diabetic.	Tier 0 – Access to social prescribing and support for self-management of diabetes.
32	Diabetes	Conversations with GP and patients in the importance of taking onset diabetes seriously. The uptake of diabetes awareness course varies and not clear about what services are on offer for pre or onset diabetes.	Tier 0 and Tier 1 - communication re risks of diabetes and awareness /self-management courses.
36	Diabetes	Good diabetes management in the community at local health centre - Pinfold Health Centre	No issues raised.
42	Diabetes	Varying uptake in Diabetes awareness course. Care pathways for diabetes to consider a peer support programme locally for people with diabetes who are struggling with confidence and lifestyle changes. Have had some test around retinal, bloods, but not yet podiatry.	Tier 0 resilient communities – peer support.
43	Diabetes	Diabetes care pathways - importance of integrating mental health support due to depression and key issues with how diabetes impacts on the heart feeling low.	Tier 1 integrating mental health support due to depression and key issues with how diabetes impacts on the heart feeling low.
44	Diabetes	Challenges in diabetes and care pathways within the older Asian community. Difficulties in GP and patient understanding pathways, adhering to advice around healthy eating and lifestyle change. Impacts on my mental health. Can be very lonely and no support groups. Limited access to community support to manage my condition. Would like to speak to others around managing diabetes.	Tier 0 and Tier 1 Challenges in diabetes and care pathways within the older Asian community. Difficulties in GP and patient understanding pathways, adhering to advice around healthy eating and lifestyle change.
52	Diabetes Mental Health Osteoarthritis Fibromyalgia	Multi health conditions and self-management is very difficult, I was under a consultant who recommended pain management. I have been waiting for a year for an appointment. The pain and conditions have increased depression and pain. I have been accessing a 16-week course of talking therapies which has helped but consultant and GP medication can be very confusing. When I get new medication, I worry about it and side effects trying to get better myself but need support. Self-management on pain relief is hard but no referral back to pain management. Very complicated with diabetes and fibromyalgia causing inflammation and flare ups.	Tier 0 – Resilient communities – access to wellbeing and community support Tier 2 – Access to specialist services pain management and the co-ordination with psychological services.
54	Diabetes Thyroid	Diagnosed with Diabetes in Sept 2019.  Went on the Diabetes Awareness course found it very useful and took it seriously. Explained on the course I can have a copy of my HbA1C but was not told this or explained what it was by GP. Diabetes Awareness Course: Explained well about nutrition and carbohydrates. Explained about reduction in HbA1C GP did not explain anything or that diabetes can in some cases be reversible. Have been on metformin but changed to Sukkarto. Have not received any other support or information but do not want to be reliant on medication in the long term.  Continuous medication monitoring and access to medication monitoring can be a challenge.	Tier 2: Access to specialist services.
5	Respiratory	Pathway supports self-care management however if patients have an exacerbation does UCC have access to COPD specialists should patient need them. Care pathway between pulmonary rehab, COPD team advice and self-care management good but is not always clear for all. Better work around early detection and symptom control. The progression of the condition for some people could be better managed.	Tier 0 - self-care management Tier 2- access to COPD specialists.
18	Respiratory	Ensure that all COPD pathways if patients are having exacerbations. Patients need to know who to contact need for clear rapid response in out of hours or COPD team in daytime hours. All COPD patient clear contact referral – rapid response. 111, COPD team, 999. Consistent information on out of hours services and clearer contact for referral.	Tier 1: Primary Care Tier 2: Specialists Community Based Services COPD. Designing a better contact plan for COPD patients particularly for out of hours and in the daytime.
30	Respiratory	No support through primary care to manage symptoms. However, offered support in the community.	Tier 1 available support to manage symptoms in primary care.
33	Respiratory	Respiratory - late diagnosis of COPD in many historical patients. Stage 3 COPD. COPD team work very effectively and support and help manage my condition. GP issues getting medication and the GP support for COPD very limited. It is seen as it is all the responsibility of the COPD team.	Tier 1 – COPD patients’ access to GP care
20	Respiratory	Exacerbations used A&E - Hospitals work well Monday to Friday but not all regular staff at the weekend. Service operational activity. Communication with COPD team. Problem told by COPD not to use steroids – straight into hospital straight onto steroids – mixed messages.	Tier 2: Specialist Community Care. Tier 3: Unplanned Care. No consistency between COPD Community Team and hospital care in relation to Steroid Use. (Query of Patient Group Directions for COPD). Clinical agreement on medicine management of COPD.
34	Respiratory	Hospital discharge after poor symptom management. Referral back to COPD team very efficient and positive. Lack of early advice from GP surgery and practice staff.  Better co-ordination between GP advice and COPD specialist.	Tier 1 – GP care and symptom management
35	Respiratory	Respiratory and Asthma. Hospitalisation could have been avoided with better advice and condition management. No integration or communication between primary care and community services. Unclear if asthma is supported through the COPD team.	Tier 1 and Tier 2 – avoidance of hospital admission if better advice and condition management in the community.
41	Respiratory	Respiratory pathway. Stage 3 COPD in elderly support at home challenging after hospital discharge from 24-hour care to 4 short calls a day. More appropriate community care package required to ensure that nursing or care home does not automatically become default position. More detailed care plans to be considered in COPD community care pathway. Rescue pathways need to be more detailed. Challenges in capacity of COPD team to support patient on a very regular basis at home.	Tier 2 rescue pathways need to be more detailed.
47	Respiratory	Inconsistency in care pathway for respiratory patients regarding access to rescue packs. Some patients have access to regular rescue packs but no follow up or referral to community COPD team.  Discharged form hospital - informed it was a capacity issue.	Tier 2 Inconsistency in care pathway for respiratory patients regarding access to rescue packs. Some patients have access to regular rescue packs but no follow up or referral to community COPD team.  Discharged from hospital - informed it was a capacity issue.
51	Respiratory	Care pathways with Asthma - ensure there are management plans in place for patients who can also access community-based support such at those with COPD.	Tier 1 and 2 Care pathways with Asthma - ensure there are management plans in place for patients who can also access community-based support such as those with COPD.
21	Cardiology	Cardiac pathways need to be checked to ensure what services are accessed by tertiary services. From discharge need check pathways to see what GPs are required to do and when patients need to be seen - able to access appointments. WT design group check pathways that services that patients discharged from can be accessed. Question: are all patients referred to cardiac rehabilitation and uptake? There is little cardiac support in community must go to hospital for this.	Tier 4: Cardiac Unit. Tier 1: Primary Care Challenges around patient access to GP after discharge. Patients feel unsure what support GP should give is follow up, rehabilitation referral etc. Pathway needs to ensure clarity on what community-based services and GP support is required for cardiac patients.
22	Cardiology and Diabetes	Patient care at GP and hospital positive however felt no information given on community support, social activity etc (unsure of referred to Heart Care).	Tier 0: Resilient Communities Referred to Making Connections. Importance of social prescribing for patients with long term health conditions.
23	Cardiology	Cardiac patient – Not taking medication and collapsed numerous times. Could not get access to GP appointment.  Access Cardiac consultant at hospital. Assurance about the importance of taking medication but little communication from GP to patient with Heart Condition.	Tier 1: Primary Care Access to GP for patients with heart condition.
25	Cardiology	Cardo rehabilitation through heartcare works well for patients and able to help control and manage Type 2 diabetes. Reassurance after cardio surgery and for those who access cardio rehabilitation makes a positive difference. Reassurance after cardio surgery is important to the patient and accessing cardio rehabilitation is important. Communication to the patient between Walsall Manor and New Cross could be improved although MDT's take place.	Tier 4 – communication between local acute trust and tertiary centre.
26	Cardiology	GP refer to hospital suspected heart attack. Referred into A&E. Heart surgery. Poor communication between New Cross and Manor and poor communication from MDT and information to GP. Heartcare cardio rehabilitation positive and reassuring.	Tier 2 – Specialist Community Services Heartcare Tier 1 - Communication back to GP. Tier 4 – Planned Surgery.0
29	Cardiology and Respiratory	Respiratory and cardiology care pathway - East Walsall locality. Working well for patients with several complex comorbidities. COPD community support working well to prevent patient hospital admission - good communication, care management plan and telephone support.	Tier 1 and 2 – good support. Both COPD and cardiac pathway seems to be working well
31	Cardiology	Fast-tracked from Primary Care with concern possible heart attack. Issues around potential Cardio patients going to A&E having to wait - possible fast track to Cardio as patients could be missed. Better MDT communication between New Cross and Walsall Manor Cardio.	Tier 3 - Issues around potential Cardio patients going to A&E having to wait. Tier 4 – MDT communication between Tertiary Unit and Acute unit.
37	Cardiology and Respiratory	Need consistency for patients with Cardio and respiratory conditions to see appropriate or designated GP - communication and automatic referral for appointment for patients.	Tier 1 – Continuity of GP care i.e. patient seen and treated by the same GP.
38	Cardiology	Access to psychological services after major surgery. Surgery left me worrying and anxiety. Heartcare play an active role but not a consistent approach from primary or acute care in relation to a psychological offer.	Tier 4 and Tier 2 access to psychological therapies.
46	Cardiology	Cardiology pathway. Better communication between consultants and patients. Confusion and mixed messages to patient from different consultants.	Tier 4 - Better communication between consultants and patients. Confusion and mixed messages to patient from different consultants.V
48	Cardiology and Respiratory	Some cardio and respiratory patients positive integrated care between COPD community team and pulmonary rehabilitation. Good robust condition management in place. No rescue pack use for 2 years. Self-care management essential.	Tier 1 and 2 No rescue pack use for 2 years. Self - care management essential.
9	Neurology	In pain but not referred to pain management team. Need access to psychological therapy. But also, better links between the two.  Can access low level support. Pathways not responding well enough for people with psychological support needs. No referral to pain management and impact on mental health.  Spinal nerve damage affecting continence, and mental health.	Tier 2 – Psychological services.
3	Cancer (bladder)	Provider and receiver of care better, clearer communication and media around care pathway. Communication between Oncology and Urology referral time. Knowledge of District Nurse of community-based services i.e. in this case Asian Women’s Cancer Support Group.	Tier 1 - Primary care and District Nurses. Tier 2- Access to secondary care.
10	Rheumatology	General medicine. Rheumatology - good care from GP but pain management poor communication. In the Asian community equity of access to services is a problem. In the pathway design why, wider Asian community have difficulties accessing pain management services and consistency in GP referral. Linkage and communication between Rheumatology and pain management.	Tier 0 – BME equity of access access to pain management. Tier 2- Pain management.
11	Rheumatology (arthritis)	Positive of services at Walsall Manor and self-care management. Care pathways for people to maintain their independence - links to social prescribing. However, no referral to pain management services and this has affected Mental Health. MDT are going to talk about my issues, arthritis, not been or referred to pain management but take pain killers which do help at times. No MDT approach between GP, Physio and pain management GP and pain management approach to medication very different	Tier 0 – Self-care. Tier 2 – Access to pain management.
2	Neurology	Referred by GP to Sandwell ‘in patient’ QE seen by neurologist. Access to physiotherapy poor due to pain and pain management but referral lost and waiting for referral. This has an impact on mental health. GP dismissive of concerns regarding condition - finally highlighted spinal leak. Accessing pain management services very difficult.	Tier 1 - GP, Primary Care and Access to therapy services.
17	Learning Disabilities	Continuity of care for people with disability living with older ageing parents. Not a specific pathway but consideration of care.	Tier 0: Building Resilient Communities. General Medicine. Communities – consider support for older parents.
19	Urology	Prostate Cancer. Nothing in survey to say pathway is not working.	Care consistent and positive for patients able to access specialist teams at the right time.
24	Gastro-enterology	Understanding IBD nurse capacity in Walsall, patient cannot access specialist nurse services. I have bad IBD but cannot access.	Tier 2 - Access to Specialist Nurse.
13	Rheumatology	Does the Rheumatology care pathway have a closer link between self-care management? Co-production between the two.	Tier 2 – Specialist Community Services.
45	Palliative Care – EOL	EOL fast-tracked from hospital to home. Positive and quickly established EOL care pathway in community through District Team and palliative care team within the West Walsall locality. However, care is not always a consistent approach between all agencies with regards to advanced care planning, discussion with patient and families around end of life.	Tier 2 Challenges in diabetes and care pathways within the older Asian community. Difficulties in GP and patient understanding pathways, adhering to advice around healthy eating and lifestyle change.

 

Summary

Although this summary is based on 54 surveys there are some common themes identified throughout. We have highlighted which element of the care pathway have the challenges or most impact on clients and services.  Building on resilient communities and particularly around self-care management and access to specialist services are the main areas where people have highlighted the need for change.

Communication

Communication with the patient, GP, and specialist consultants (triangulation of information) seem to voice most concern. The main key issues have been timely communication from consultant to GP and to the patient but also how the patient interprets the advice given by the GP. Some patients with comorbidities have also informed us that it is very challenging to understand their primary condition.

Pain Management

A common theme has been challenges in accessing pain management services and the need for a more consistent and joined up approach between pain management and physiotherapy services with the views by some that these services run in isolation. Other issues around pain management have been communicated and varying medication between the pain management services and the GP. Some people have also informed us that they have self-managed through medication. However, through the survey data and through discussions, patients with pain management have found the self-care management support run through Walsall NHS self-care management team useful and supportive.

Respiratory

People have informed us that the community COPD team have been very positive in condition management and reduction in the use of rescue packs however, there have been some views around the inconsistency of people accessing rescue packs through the GP and particularly for people who do not access the community COPD team. 2 patients with asthma informed us that there is no clear pathway for support / community support for asthma or a supported management plan.

Diabetes

Through the surveys and discussions with the Pathways for Life Asian women’s support group, education and understanding diabetes is a significant challenge within the Asian communities. Many of the people that we have talked to that have diabetes have informed us that it impacts on their mental health significantly yet there has been for some patients limited support or discussion around diabetes and mental health.

Some patients have also told us that the quality of the conversation with primary care around diabetes is important. Some patients informed us that after being advised that they are diabetic they have taken it very seriously particularly around lifestyle changes and podiatry care.

We have also been informed by a small number of people that accessing and understanding individual HbA1C levels can help people to control their condition however not all patients have access to this or are helped to understand it.

Mental Health

For many who have other health conditions, mental illness also impact of their life. Some cardio patients in particular those who have had heart surgery, have had a huge impact on their mental health. For those who take up cardio rehabilitation at heartcare they are also supported or given the opportunity to access mental health support. However, for some people the referral to mental health services is limited or not offered.

We have also found that there is a cohort of clients and in particular men who have accessed the GP with poor mental health to be referred to talking therapies but informed that they do not fulfil the criteria and do not understand why this is the case. However, some GP’s have signposted clients to Rethink and they have found the support very positive. The waiting times of psychological services at DWMHT are too long for many clients who need to access timely support.

Compiled by:

Paul Higgitt, Healthwatch Walsall Senior Engagement Lead

Phillip Griffin, Walsall Together Service User Group Chair

Diabetes Care Pathway: Intelligence Report August 2020

Report Foreword

1 - This report is the culmination of engagement work undertaken and co-ordinated by Paul Higgitt, Senior Engagement Lead, Healthwatch Walsall from the beginning of 2020 when individual patient stories were recorded followed by three virtual patient engagement events held during June and July 2020. This work has been supported throughout by Phil Griffin, Walsall Together Service User Group Chair. A significant number of diabetes patients have been involved in this work and there has also been some input from Diabetes Specialist Nurses and also Diabetes UK.

2 - The report is the first of a series which will be completed as part of a Walsall Together user  engagement user project which Healthwatch Walsall has been commissioned to carry out (5 others will be completed during the life of the project including for example cardiac and respiratory care pathways).

3 - The report is in 2 parts:

• Summary report with key findings and recommendations – pages 2 to 5 inclusive
• Appendices to the report which include the notes of the virtual workshops held in June and July 2020 and individual patient stories – pages 6 to 19 inclusive

4 - Healthwatch Walsall, many patients and members of the Walsall Together Service User Group want to see commissioners and providers of health and social care, to act in a demonstrable way to the intelligence provided via this report and the specific recommendations which are summarised below in this foreword and again in the report at Page 5. It is only by tangible and measurable improvements made, can it be said that the principle of co-production of care pathways  is being achieved in Walsall and that the words in the Walsall Together terms of reference which are based on strong partnerships and working together with service users are not just rhetoric.

5 - The recommendations applicable to the Walsall Together Tiered Model of Care are as follows:

• Development of a Diabetes Peer Support Group for people to share experiences and aid in supporting people around loneliness – Tier 0.
• More information and promotion of the IAPT / Talking therapies service for people with long term health conditions and during the COVID-19 pandemic – Tier 1 & 2.
• Enhanced grass roots communication within the BAME communities around diabetes care and advice and reassurance of service delivery around diabetes and the impact of COVID-19 on BAME communities - Tier 0,1,2.
• Ensure that there is consistency of diabetes care across General Practice during this challenging period that patients are accessing their essential check-ups – Tier 1.
• More joined up communication with the patient around early intervention, pre diabetic support, what is the general offer for the patient – Tier 0,1,2.

Phil Griffin- Walsall Together Service User Group Chair

Paul Higgitt- Senior Engagement Lead, Walsall Healthwatch

1 - Introduction

Walsall Healthcare NHS Trust and care system partners are developing new integrated ways of working to improve the health and wellbeing outcomes of their population, increase the quality of care provided and provide long-term financial sustainability for the system. Strong public and patient engagement are a key component of the transformation agenda including the co-design and implementation of the detailed service changes required.

Walsall Together has identified long-term conditions pathways for service redesign improvement work through a combination of needs analysis (Joint Strategic Needs Assessment) and partner strategic priorities.

Healthwatch Walsall is commissioned by Walsall Healthcare Trust as host provider for Walsall Together, to deliver the engagement work necessary for co-production of the identified priorities for service redesign.

Walsall Together has identified six priority care pathways through a combination of needs analysis (Joint Strategic Needs Assessment) and partner strategic priorities. The priority pathways are:

• Respiratory
• Diabetes
• Cardiology
• End of life
• Mental Health Outpatients
• Healthy child programme

1.2 - Virtual Engagement

In order to secure improvement in these pathways a key principle is that improvement is the result of care professionals and patients working together so that care pathways are co-produced and are better understood and navigated by patients to achieve optimal care in the right place, at the right time by the right people.

March 2020, we had made positive links with partner organisations to engage directly and we had been building opportunities to engage with patients and clients in many ways. However, due to COVID–19 we have had to look at new ways of working differently to ensure the project continued to move forwards. We considered a different approach to engagement forums that was based on using virtual technology such as Microsoft Teams or Zoom. In the end and after internal consultation the project got the go ahead from our IT people to proceed using Zoom as the platform to support virtual forums.

1.3 - Living and Managing with Diabetes

Following on from our Living and Managing with a long-term health condition survey our focus during the last quarter has been on capturing the views of service users living and managing with diabetes and other related long-term health conditions.

We have been able to undertake this work through a series of 3 virtual workshops and capturing patient stories individually. Through June, July, and August, we have been able to capture the views of more than 60 service users.

Below are the key questions that we have guided the conversations during the workshops:

• Welcome and Introductions
• Purpose of the meeting – Overview
• Discussion Points:

Do you understand Diabetes and how it impacts on your health?

What is working well in helping you manage your condition?

Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions?

Have you been able to seek the right advice from the community diabetes team and how have you been supported?

What could be delivered differently to support you. Could there be different ways of working?

• Summary of Discussions
• Views on the Meeting
• Any Other Business

1.4 - Summary of Workshops – Service User Comments

Key points from the 3 diabetes workshops:

• Very positive views around the community diabetes team and podiatry support. In that if you are known within the community diabetes team, access and guidance is positive.
• Impact on mental health and need for support for people with diabetes. Some service users have felt a sense of loneliness and impact on mental health which has been exacerbated due to COVID-19. However, of those we have spoken to very few were aware of a referral system into Diabetes and Talking Therapies.
• Many service users have informed us that they would like to see a Peer support group established even virtual (Healthwatch Walsall are looking to support development of a Diabetes Peer Support Group in conjunction with Diabetes UK).
• Commonalities in relation to poor access to information around diabetes around nutrition and appropriate eating unless known to the service was highlighted. Where do people go for support and general advice on nutrition and health.
• Diabetes UK also attended the workshops and shared their information on their 15 healthcare essentials. https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/15-healthcare-essentials/what-are-the-15-healthcare-essentials.  Some service users are aware of the checks undertaken as part of the Diabetes and Me programme however a number of service users were not aware of the full health check list and that it was not consistent.
• We were able to engage with a representative and service user from BAME communities, who informed us of the impact of diabetes and COVID-19 and the need for grass roots information on support offered. Focused information and support at those at most risk.
• Some comments from people from Asian communities – lack of understanding around nutrition and what is said to people in relation to advice. Some Asian people cannot read and write in own language. Not enough talking within communities around the condition. Feel they go to the GP and many patients’ concerns seem to be put down to diabetes.  It was also highlighted that it does not matter what ethnic group you are from all patients need to be able to access the same information. 
• Ensuring access to better access to information around medication management for some services users.
• Many people have found the Diabetes awareness course very informative but need to have opportunities for further follow up with dietitians.  We were informed that not all service users had been referred to the courses and for those who were not newly diagnosed would be interested in attending, even if this were virtual during these challenging times.
• It was questioned who co-ordinates the pre diabetic referral. It is not clear to all patients. NHS pre diabetic support noted through public health, but awareness is not consistent. It was felt that not all GP practices refer into this service.
• Clearer support offered to manage diabetes and heart conditions (particularly around circulation). Community diabetes team have been very helpful but still awaiting a referral to Cardiology.
• Not all service users were aware that for vulnerable clients during these challenging times there are home eye screening service available such as through                                                   https://oncallopticians.co.uk/ (other providers may be available).
• Although there were many positive comments around service provision there were comments that about whether the Community Diabetes Team, NHS pre diabetic checks, Walsall Public Health prevention initiatives and Diabetes UK providers work in conjunction with each other.

1.5 - Summary

Whilst this report is based on the feedback from 60 service users and with an increasing prevalence of Diabetes T2 in Walsall there are some consistent comments from those who participated. These are mainly focused on consistency in communication through GP’s, access to the right information and support at the right time and the impact of mental health and loneliness for service users with diabetes.

1.6 - Recommendations

As part of service users care pathways, we have identified which tier of the pathway where people have identified they would like changes in care delivery to take place:

Tier 0                  Building on Resilient Communities
Tier 1                  Primary Care and Long-Term Conditions
Tier 2                  Specialist Care
Tier 3                  Unplanned
Tier 4                  Acute Care

Development of a Diabetes Peer Support Group for people to share experiences and aid in supporting people around loneliness – Tier 0.

More information and promotion of the IAPT / Talking therapies service for people with long term health conditions and during the COVID-19 pandemic – Tier 1 & 2.

Enhanced grass roots communication within the BAME communities around diabetes care and advice and reassurance of service delivery around diabetes and the impact of COVID-19 on BAME communities - Tier 0,1,2.

Ensure that there is consistency across GPs during this challenging period and that patients are accessing their essential check-ups – Tier 1.

More joined up communication with the patient around early intervention, pre diabetic support, what is the general offer for the patient – Tier 0,1,2.

Appendix 1 - Diabetes Workshops Notes

Notes/Actions from the Walsall Together – Living and Managing with Diabetes Workshop 

11am, 11th June 2020, Virtual Zoom 

 Discussion Points 

 

Question 1  

Do you understand Diabetes and how it impacts on your health? 

 

1.1 Comments from Patients/Service Users 

1.1a Information/Sharing Information 

Have never had anything from Walsall Diabetes. 

Diabetes UK information on their website is very good. 

I am treated at another hospital out of the Borough for another condition, but the information is not shared between Trusts.  

I have been diabetic for 30 years. The only information I get is from searching the internet. I need to know where to go and get advice from for feeling better and eating the right food.  

I have been on the same medication all the time.  

1.1b Impact and Support for Mental Health 

Type 1 Diabetes for 16 years. Not enough support for the mental health impact. I was not told it could affect your mental health. 

1.1c Diet Information 

There is lots of information of what we should eat, but no information of consequences if you do not stick to the diet.  

I got to the Pulmonary Rehab. Clinic in Walsall. They often have a Diabetes Professional attend who gives advice on diet. I am dual heritage and would like some more information on this diet.  

It was noted Walsall NHS Trust offer a course for people who have diabetes. These take place in the Community and last for 6 weeks per course.  

Question 1 Response / Action required from WT 

More information about local services should be disseminated and be widely available.  

15 Healthcare Essentials information (produced by Diabetes UK) to be distributed to all attendees at the Diabetes Workshop.  

Investigation to be made if all GP’s have got a copy of the 15 Healthcare Essential leaflet.  

*15 Healthcare Essentials is the minimum standard of care a Diabetes patient should   receive. 

 

Question 2 

What is working well in helping you manage your condition? 

 

2.1 Comments from Patients/Service Users 

 

2.1a Information 

Self-taught management due to lack of advice from Professionals. 

2.1b Podiatry 

Foot care is a good service at both Pinfold and Walsall Manor.

2.1c Eye Tests 

Eye tests – screening once a year. Opticians undertake home visits to some vulnerable residents.  

2.1d Specialist Diabetes Nurse attending some GP Practices 

Diabetes Specialist Nurse visits the surgery and ‘it really works, and I can even email her’ 

Question 2 Response/Action required from WT 

It was noted the service offered by Diabetes Specialist Nurses is very good. However, getting access to these services is a problem.  

Action required to see if Opticians will visit Care Homes and undertake home visits if people are shielding due to Covid-19. 

 

Question 3  

Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions? 

 

3.1 Comments from Patients/Service Users 

 

3.1a Access to blood test and HbA1c 

HbA1c was due in March 2020, but I have not had it due to being in the shielding category for Covid-19. It was noted Heartlands Hospital are carrying out blood tests via drive thru.  

Some patients can go to their GP Surgery to have blood tests.  

 

3.1b Prescriptions 

An example was given whereby 2 Community Nurses had always visited a vulnerable lady’s home twice a day and had administered her insulin. With no notice she was asked to get the prescription. We did not know how much to order or when. 

At the start of the Covid-19 another patient had their insulin increased for 2 months. Twice she has run out of insulin.  

Type 1 Diabetes - Another diabetes patient said she must test her blood sugars up to 8 times a day. She needs a large supply of the kits to test but this is always a struggle with her GP when she requires a prescription.  

 

Question 3 Response/ Action required from WT. 

Communication – Pharmacist GP and Patient communication and access to medication.  

Engagement Lead is to raise the question of insulin shortage with the Medicines Management Team at Walsall CCG. 

 

Question 4 

Have you been able to seek the right advice from the community diabetes team and how have you been supported? 

 

Comments from Patients/Service Users 

Could do with more support in GP practices for help/information on diabetes. A patient had been living with diabetes for 30 years and nothing had been offered to her. No one explains the medicine to her.  

Learning Disability diabetes patients do not receive any support. 

 

Question 4 Response/Action required from WT 

Diabetes Specialist Nurse confirmed every GP Surgery should offer the 6-week Education Programme offered by The Diabetes Team. 

Diabetes Specialist Nurse said they would be able to offer support to patients with Learning Disabilities in small groups. They take into consideration each patient individual needs. Patients can be referred via their GP. 

Diabetes UK Regional Director Midlands and East – Diabetes UK offer a course ‘Living with Diabetes Days’. It was suggested Diabetes UK work with Walsall Together and factor into their programme Living with Diabetes Days. These maybe online now due to Covid-19. 

Diabetes UK is in the process of working on online modules, which should include easy to read. 

 

Question 5 

What could be delivered differently to support you. Could there be different ways of working? 

 

5.1 Comments from Patients/Service Users 

 

5.1a Communication and Organisation – District Nurses 

It was noted when District Nurses visit patients to administer insulin/medication that they do not arrive at set times. This makes it difficult when trying to ensure a patient has eaten/not eaten. There previously had been different information about whether the patient should eat before the insulin or after. This has now been sorted but it took a group meeting to agree. 

 

Question 5 Response /Action required from WT 

Communication/organisation from District Nurses were noted. 

 

Summary of Discussions 

Consistency through ALL GP practices in supporting patients with Diabetes and other associated health conditions. 

Relating to inconsistency in services Diabetes UK said that they were able to attach a small card with the 15 Healthcare Essentials to over a 100, 000 prescriptions in the Birmingham and Black Country. 

Support for Learning Disabilities in terms of information.  

Medication access and reviews and administration information particularly during Covid-19. Access to insulin through this time is a challenge for some patients. 

 

ACTION 

Service Users would like to see Walsall Together partners to map what is provided around ALL GP’s in Walsall. 

 

Notes/Actions from the Walsall Together – Living and Managing with Diabetes Workshop

11am, 17th June 2020, Virtual Zoom 

Discussion Points 

Question 1 

Do you understand Diabetes and how it impacts on your health, do you have adequate information? 

 

Comments from Patients/Service Users 

Mixed comments were received from service users.  Some patients had access to a lot of information and support from their GP practice and had been offered a 6-week diabetes course.  

One diabetes patient had been diagnosed with diabetes 12 months ago. He was given tablets by his GP and has not had any information since. 

It was noted service users often use the internet to find information. 

One patient has Type 1 Diabetes and said the only issue she has is that everyone, including her GP presumes she has Type 2 diabetes. 

 

Summary/Points to note from Question 1 

No consistency between GP practices in terms of information and communication. 

Question 2 

What is working well in helping you manage your condition? 

Comments from Patients/Service Users 

Eye screening seems to be working well. A discussion was had over the time of day the service users have their eye screening. The eye dilation procedure can make it difficult to see for a while after and some patients must go back to work.  

One patient noted that they have had no input from the clinical side at all in helping him manage his condition. 

 

Summary/Points to note 

In terms of Eye Screening appointment times it was noted many opticians are flexible and will change times. It is more difficult to change appointment times at the hospital for Retinal Screening.  

Who should be proactive the patient or the GP? 

 

Question 3 

Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions? 

Comments from Patients/Service Users 

Some patients have had medication reviews/analysis which resulted in simplifying and re-organising the whole process. 

One service user from another GP practice said the only checks he has is a blood test every 3 months. He does not have any Podiatry checks. His HbA1c results were taken at the hospital in relation to his kidney disorder.  

 

3.2 Summary/Points to note 

It was noted that some GP practices seem to be more proactive than others.  

 

Question 4 

Have you been able to seek the right advice from the community diabetes team and how have you been supported? 

 

4.1 Comments from Patients/Service Users 

One service user said they were happy with the service; she can phone her surgery and they book her in with the Nurse.  However, said this is become she is known to the community diabetes team.

 

4.2 Summary/Points to note from Question 4 

The Community Specialist Diabetes Nurse confirmed if patients contact their surgery, they can book you in with the Specialist Diabetes Team. There are 5 Nurses in the team. The Team refer to specialists such as Dieticians and Podiatrists. Due to Covid-19 telephone consultations are taking place, these have worked well. Urgent blood tests are being done and as a result the Diabetes Team are getting referrals. 

Question 5 

What could be delivered differently to support you. Could there be different ways of working? 

 

5.1 Comments from Patients/Service Users 

It seems there is an excellent service available, but communication to the patient is just not there. Why has Little London Surgery been able to support their patients whilst others are not?  

Summary/Points to note 

Communication and consistency among all GP practices is vital. Without communication and information, inequalities can arise.  

If the community diabetes team provide services and public health are providing support and Diabetes UK do these services join up their work.

 

2.  Summary of Discussion - Questions 1 -5 

Need consistency of services in Primary Care Networks. 

Access to information and communication and services needs to be addressed as this varies across GP practices. 

Need to address the differences between Type 1 and Type 2 Diabetes and peoples understanding. 

 

3.Views on the Meeting 

Attendees agreed the Workshop was a good idea and very useful.  

Action: Thanks to be extended to Little London GP Practice for their support to patients with Diabetes.  

Notes/Actions from the Walsall Together – Living and Managing with Diabetes Workshop

11am, 9th July 2020, Virtual Zoom

Discussion Points

Question 1

Do you understand Diabetes and how it impacts on your health, do you have adequate information?

Comments from Patients/Service Users

One patient informed the group she had been diabetic for many years, as she is getting older it is harder to control.

Due to the Covid-19 lockdown it was noted some patients had/are experiencing depression and anxiety and fear.

Diet and Nutrition advice - A concern was raised by some patients who felt they needed more support and advice for diet and nutrition. One patient has been pre diabetic since 2009 ‘I have never had any training on diabetes in what I can and eat or not eat. I went on a one-day course a few years ago’

The question was raised ‘Is there any advice/guidelines for people who are BAME and Diabetes?’

Response from Professionals to Question 1

Diabetic Nurse informed meeting members a ‘Diabetes and Me’ course was now available (accredited by Wolverhampton University).  It is available to newly diagnosed diabetes but can be used as a refresher course.

Emotional Support - Diabetes UK have information on emotional health on their website. You can find out more by clicking the link:   www.diabetes.org.uk/guide-to-diabetes/emotions

Talking Therapies is also available in Walsall for emotional support. Patients can self-refer; they will be classed as a priority due to them having diabetes. Telephone 0800 953 0995. They will do initial assessments over the telephone and will offer a series of appointments via the telephone.

Diet and nutrition – One You Walsall offer Lifestyle Courses.

              Telephone: 01922 444044 or www.oneyouwalsall.com

Public Health are in the process of setting up ‘Love Food, Love Life’. Simple recipes will be available online.  They are looking at doing healthy cooking sessions via Zoom ‘Open up your Kitchen Cupboard’

 ‘Love Food Enjoy Life’ for Cardiovascular patients is also in the process of being developed. If you are interested in joining a cooking session with Love Food, Enjoy Life send your details to goodfood@consultant.com or call 07545 180 103, register your interest and they will get in touch about sessions.

NHS Diabetes Prevention Programme – Available to people who are pre-diabetic. Service Users are encouraged to speak to their GP to access this course.

Diabetes UK has an online learning tool.  Zonehttps://learningzone.diabetes.org.uk/ It offers a deeper dive into the basics of managing diabetes, with quizzes and videos, all tailored to the type of diabetes a patient may have. People need to register using their email address. Using the tool has helped people to keep their blood sugars in range, reduce the risk of complications, boost diabetes confidence, look and feel healthier.

Diabetes UK – Peer Support Group. These are currently being run by Diabetes UK in other areas of the country.  Diabetes UK will support and train people in Walsall to become a Volunteer and lead a Support Group for Walsall Residents.

BAME – Guidelines are being drawn up by Public Health.

Question 2

What is working well in helping you manage your condition?

2.1 Comments from Patients/Service Users

Concern was raised by one diabetes patient that he does not get reminders about blood tests anymore. It was noted that some patients were proactive and phoned the GP Practice.

Question 3

Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions?

Comments from Patients/Service Users

One patient expressed concern that she has not had her HbA1c checked. She was advised by the Diabetes Nurse to contact her GP Practice.

One patient informed the group he had not heard nothing from his surgery. He had a message to say he was due for some checks; he completed the questionnaire but has heard nothing since.

Question 4

Have you been able to seek the right advice from the community diabetes team and how?

have you been supported?

Diabetes Team - Contact telephone: 01922 604970, based at Bentley Health Centre.

Question 5

What could be delivered differently to support you. Could there be different ways of working?

Comments from Patients/Service Users

Surgeries need to be informed more about diabetes.

More advertisement - Seems to be lack of information of where to go. You cannot find an easy answer. Many diabetes patients research the internet, but this is not an option for everyone.

Response from Professionals to Question 5

Information on Diabetes UK website is available in different languages.

2.  Summary of Discussion - Questions 1 -5

Peer Support Groups – Need to get these running as these will the address information and communication concerns.  Diabetes UK has offered their support to get the project of the ground.

Overwhelming issues around mental health, loneliness, depression – Peer Support groups will help alleviate these issues.

Appendix 2 - Patient Stories

Walsall Together – Living and Managing with Diabetes

Patient Story – Date: 26 June 2020

Patient name: M

Postcode: WS8, Aldridge 

Age: Over 70 

Ethnicity. British White

Current Health Conditions:

• Diabetes Type 2 – controlled with diet and exercise.
• Arthritic hips and knees.
• Peritoneal cancer – Under Consultant at Heartlands Hospital.
• Prostrate problems.
• High blood pressure.
• Waiting for a dynamic Lymph node biopsy of the groin. This has been delayed due to Covid-19.

 

When were you diagnosed with Diabetes Type 2?

I was diagnosed at being at risk in 2005 but this was never followed up. In 2007 I had another Wellbeing check where I was diagnosed as having Type 2 Diabetes.  My diabetes is controlled by diet only.

What Health Services do you use?

Diabetes Nurse

I regularly see the Diabetes Nurse at my GP practice (Anchor Meadow, Northgate, Aldridge) I saw the Diabetes nurse in January 2020 and since had a telephone consultation.  

GP Practice regular blood tests

I had a blood test at the end of May 2020 at my GP Practice. I had to wear a mask. I felt relieved to have the test as it is difficult to see how you are doing when you control diabetes with your diet.

I have the email address of my nurse and she emails me the results.

 

What Health Services do you use contd.?

Eye Screening

I get a standard call every year and will have my eyes screened. 

Podiatry

I go to a private chiropodist every 3 months. I have been during Covid-19.  They took my temperature beforehand.

 

What motivates you to take your diabetes seriously?

Two things motivate me:

I found out you could reverse diabetes.

I do not want to go on medication in the form of tablets or insulin.

 

Before Covid-19 is there anything that you feel could be improved?

Access to a Dietician

I am having trouble in controlling my diabetes and at the same time maintaining a reasonable weight, it fluctuates. 

I have asked for an appointment with a Dietician. I have been told they are not making appointments now due to Covid-19. I need their input to give me some advice. 

 

Exercise Programme

I was member of the PACE programme. I attended regularly, it really helped me.

Unfortunately, the scheme closed August 2019. 

 

Diabetes Support Group

It would be great if there could be a Diabetes Support Group, where diabetes patients could share experiences and support each other.

Patent Name. PT

Postcode. Bloxwich

Age. 56

Ethnicity. British White

GP Practice. Pinfold Medical Practice

Type 2 on Insulin Diagnosed around 25 years ago, Insulin for last 23 years + Metformin and Empagliflozin (recommended by Podiatry)

Purpose of the meeting – Overview

Discussion Points:

 

Do you understand Diabetes and how it impacts on your health?

Generally, yes though tricky to keep track of subtle differences and decline on health. 

Do we need to test before every journey by car when driving?

 

What is working well in helping you manage your condition?

Change of Long Acting Insulin to Tresiba – BUT harder to manage than previous type (Lanctus) with the effects of warmer weather (increased Hypo Symptoms) and COVID = decline in activity.

 

Have you been able to get the right checks such as your HbA1c, retinal check, podiatry checks etc? Any concerns over prescriptions?

All were reduced during COVID – Changes at GP surgery often hard to get through by phone and the econsult did not have “diabetes” as a topic. Suggest an app/link for diabetic questions.

Podiatry Checks were first to restart but one day notice for appointment and gave no guidance about COVID measures required. Having said that I felt much safer than expected and the treatment was excellent. However, the need to have an operation is on hold due to my relatively high H1bAc result

 

Have you been able to seek the right advice from the community diabetes team and how have you been supported? 

Recent staff change and lack of access to online system affected face to face appointment. My recent HbA1c results were disappointing given the routine test results were showing a great improvement but hard to explain why my results did not match the HbA1c figures.

 

Suggest an alternative method of tracking blood sugar closely for week before consultation. 

 

What could be delivered differently to support you. Could there be different ways of working?

I have learned much about my Diabetes over the years but found it really hard to manage weight and implement exercise.  Knowing what to do and the lack of motivation/drive to implement is needed.

 

I find keeping accurate diet, pre and post meal test results in order to give the medical team information quite daunting.

Patient name: A 

Postcode: WS5, Bescot 

Age: 63 

Ethnic Group: Asian/ British  

Gender: Female 

GP Practice: The Pleck Health Centre 

 

What are 3 Main Health Conditions that affect you most?

 

Arthritis

Cardiology - Heart Triple Bypass

Type 2 Diabetes - diagnosed 2 years ago (2018)

 

How do you manage your Diabetes? 

 

Metaform – Smallest dose

 

Do you receive regular Health Checks?

 

Eye Test every 12 months.

Have not been offered any Podiatry checks.

The family must contact the GP Practice if we want a blood test.

 

Do you have access to a Diabetes Specialist Nurse?

 

No – I have never been told about the Diabetes Specialist Nurse.

Are there any services that you use which could be delivered differently?

              Communication 

My mum attended a Diabetes workshop when she was first diagnosed with Diabetes. The workshop was for people who did not speak English as their first language. I went to the workshop with mum to support her. I ended up translating, as the course was mainly delivered in English.

 

Appointments to see professionals are arranged with those that can speak another language but when we arrive for the appointment they often cannot translate. The speaker needs to be trained on patient engagement and speaking another language.

 

Nutrition/Diet Workshops

Nutrition workshop did not consider specific dietary requirements such as lactose intolerance, gluten free, vegetarian, or vegan. For example, it spoke about reducing carbohydrates, but a gluten person does not eat carbs. 

 

The nutrition workshop does not also consider different cultural diets.

 

6. Would you be interested in attending a self-support group?

Yes, I would be interested in attending.

Patient name: H

Postcode: WS1, Palfrey

Age: 67

Ethnicity: Black Jamaican 

Background:

H was diagnosed with Type 2 Diabetes at the age of 50.  For the first 2 years her diabetes was managed by diet only. After 2 years H was put on medication. 

H also has:

Sickle cell Traits

Thalassemia

High blood pressure

Health Services currently used by H:

Retinal screening at an optician twice a year.

Podiatrist – every 6-8 weeks.

Diabetes Nurse specialist every 6 months.

Regular blood tests.

Current Medication

Tablets 

Waiting for renal test to see if she must go on insulin.

 

Other information

H is not a member of a Support Group. She would like to meet people who have diabetes.

GP Surgery – She is very happy with the service she receives from Little London          Surgery.

She cares for herself and does not get any help from any other services. 

Patient name: Jenny – named changed.

Postcode: WS2, Bentley

Age: 47

Ethnicity. Dual Heritage

Background.

In 2011, at the age of 38, Jenny became very unwell. After several tests and investigations, she was eventually diagnosed with Chronic Obstructive Airway Disease (COAD) and Bronchiectasis. Jenny has never smoked and has not been exposed to asbestos.  The Doctor at Walsall Manor Hospital prescribed Jenny’s medication and Jenny was under Walsall Manor COAD team. 

Three years ago, Jenny was referred to Heartlands Hospital to start trial medication and was also diagnosed with Silica Asthma.   Jenny is still under Walsall Manor COAD specialist Team but is also receiving treatment including EPO at Heartlands.

Jenny takes a series of steroids including lifetime prednisone. These specific medications have now resulted in her having developed medically induced Type 2 Diabetes. Jenny was diagnosed with Diabetes, 2 years ago.

Referral to Community Diabetic Specialist Team.

Jenny’s GP and Practice Nurse (St. Peters Surgery Walsall) tried to control Jenny’s diabetes with medication in the form of tablets. After 12-18 months on tablets Jenny’s GP practice referred her to the Community Diabetic Specialist Team.  Jenny felt that the referral seemed to be quite late due to the severity of her diabetes.

Effects of Covid-19

Before Covid-19 Jenny saw the Specialist Diabetes Nurse every 4 weeks. She now speaks to Specialist Diabetes Nurse on the phone.  Jenny was keen to point out the care has been exemplary. 

Eye Tests

Over the last 18 months Jenny’s eyes have deteriorated and during this challenging period continue to worsen. It is unclear whether she is required to have another retinopathy test.  She would like an eye test so she can get a prescription for glasses. Because of her lung condition Jenny is in the highly vulnerable category and is therefore unable to go to an optician. There has been limited advice and Jenny is unclear if this can be done at home safely. She is extremely worried that her eye site is declining at a rapid rate.

HbA1c Test

This was due in February 2020. Jenny’s GP said the District Nurses would not come to Jenny’s home to do the blood test. This is still also outstanding. 

Every 4 weeks Jenny has an injection of Mepolizumab administered by Heartlands Hospital. Because Jenny is significantly at risk she stays in her car with a mask on and a professional wearing appropriate PPE gives her the injection via her car window. She has asked the questions; Can Walsall NHS Trust offer such similar services for blood tests and in particular for those who are highly at risk. Although things may improve some people who are vulnerable do not feel attending a surgery or hospital is a safe environment and in Jenny’s case, she is very unsure if this will be possible this year. Jenny also has been receiving pulmonary rehabilitation at Walsall Manor during this current situation.

She is concerned about when tests will be available, reassuring, and safe for patients who are vulnerable.

What could be delivered differently to support you?

For Jenny and several people that we have spoken to with Diabetes, Jenny would like to attend Group Sessions where she can share her experience with others who have Diabetes. Keep talking, keep sharing. However, there are no peer support groups in Walsall around talking about diabetes. 

Name. Brett (name changed)
Postcode. WS 2
Age. 58
Ethnicity. British White

Brett had type 2 diabetes. Around 7 – 8 years ago Brett was around 31 stone in weight and was finding things at work difficult and carrying out tasks painful.

Brett had struggled with his weight for many years. He had been informed that by the age of 55 he could be paralysed, and his life expectancy was potentially significantly reduced. He visited his GP at the Little London surgery and was referred to Walsall weight management team.

Brett lost 2 stone, but found it became difficult to lose more weight even though Brett had gone to Slimming World and Weight Watchers. Brett had the necessary health checks, such as thyroid function, and the weight management team could not identify any underlying health conditions that could be having an impact on this.

The weight management team had tried placing Brett on 5 different medications, but nothing seemed to be working, although he continued to diet. His body seemed to be retaining sugar.

“The weight management team at Darlaston tried everything - they were fantastic”.

Brett had a conversation with the weight management team and was referred to a consultant and psychologist to discuss various options available to him.

Two years ago, Brett had a conversation around three different types of Bariatric surgery. In November 2018 Brett had a Bariatric Sleeve procedure at Walsall Manor Hospital. Over the next 12 months Brett was fully supported by the community diabetes team and weight management team in relation to nutrition and exercise, and in November 2019 his weight was down to 19.5 stone. Around November – December Brett was informed that he was now pre-diabetic.

Through the diabetes team Brett continues to access all essential health checks and has his Hba1c checked regularly along with 12 months retinal checks.

The diabetes nurse has been very encouraging and has encouraged him not to drift. 12 months ago, the Diabetes nurse could not find a pulse in his foot during a podiatry check. Brett was quickly referred to Bentley clinic where a pulse was found, and he was reassured and given advice.

In 2019 Brett started to suffer from depression due to family circumstances. Brett explained his wife almost died due to a heart condition. Brett was finding things hard but did not want to go back to how things were, and for his weight to start creeping back up.

His depression was also picked up by his GP under a routine check as the GP was able to pick up the signs. Brett was referred by his GP to Walsall self-care management team for a 12-week self-care management course. Although at first Brett was apprehensive, he went on the 12-week self-management course which he found useful.

He said, “It gave me a kickstart to hear from other people some of whom have bigger issues than myself”. Whilst on the course Brett met up with a young gentleman who is deaf and cannot speak. They have built up a supportive bond and pre COVID – 19 they both went to Aqua fitness in Walsall, which has helped Brett tremendously.

Brett also has Atrial Fibrillation and has been taken into Walsall Manor several times suffering with dizziness and fatigue. After being checked over he has been referred back to his GP each time but is unsure whether the AF is a result of his weight / diabetes.

During COVID – 19 Brett has said that he has put around half stone on and really misses the aqua fitness and friendships.  He is still committed to ensuring that his weight is under control, and that he finds the support he receives through the community diabetes team reassuring. “I cannot fault the care that I have received the Walsall NHS Trust”.