Agenda item

The Health & Adult Social Care Select Committee agreed to set up a rapid review into dementia support services for people living with dementia and their carers in Buckinghamshire. 

A small group of councillors volunteered to participate in the rapid review.  Evidence gathering meetings, with a number of stakeholders, took place across three full days on Thursday 9^th March, Tuesday 14^th March and Thursday 16^th March 2023.   The review was chaired by Cllr Carol Heap and comprised of Cllrs Shade Adoh, Phil Gomm, Robin Stuchbury, Nathan Thomas and Alan Turner. Following the evidence gathering meetings the review group then met to discuss and agree its key findings and recommendations, which were presented in the report found at Appendix 1. The recommendations were grouped together under the NHS England Dementia Well Pathway which had been adopted by Buckinghamshire.

Cabinet was asked to consider the recommendations of the Select Committee Review.

RESOLVED

1) That the Select Committee and Review Group, as well as the supporting officers, be thanked for their work and subsequent recommendations.

2) That Cabinet’s responses to the review and recommendations, as set out and circulated to Members, be AGREED.

Note: a complete breakdown of the scrutiny recommendations and Cabinet’s responses can be found here.

The HASC Select Committee had been reviewing the Adult Social Care transformation programme, which included a workstream around dementia support for people living with dementia and their carers. The Committee had already reviewed the refreshed Better Lives Strategy and were aware of the proposal for additional funding made to the Integrated Care Board for an expanded dementia support service. The scoping document for a rapid review into dementia services was agreed at the February HASC meeting and three full days of evidence gathering took place in March with health and social care colleagues, voluntary and community organisations and other key stakeholders.  The Committee were keen to explore the dementia journey across existing pathways from first patient presentation to end of life care and also to include a review of the prevention programme.

The Chairman, Councillor Carol Heap paid tribute to the small group of councillors who volunteered to participate in the rapid review and also those organisations that had provided evidence.  Evidence gathering meetings, with a number of stakeholders, took place across three full days on Thursday 9^th March, Tuesday 14^th March and Thursday 16^th March 2023.   The review comprised of Cllrs Shade Adoh, Phil Gomm, Robin Stuchbury, Nathan Thomas and Alan Turner. Following the evidence gathering meetings the review group then met to discuss and agree its key findings and recommendations, which were presented in the report found at Appendix 1. The recommendations were grouped together under the NHS England Dementia Well Pathway which had been adopted by Buckinghamshire.  

The Chairman provided the following information on introducing the report:-

·         The Dementia Journey was a complex one which involved many different agencies and it was very difficult and confusing to navigate for people living with dementia and their carers. One of the main aims of the review was to identify what was currently working well and any gaps in the current pathways and areas needing improvement and to develop recommendations that would lead to a better integrated service and improved access to support to people living with dementia.

·         To put this review into context, there were just over 4,000 people diagnosed with dementia (aged 65+) in Buckinghamshire with an estimated prevalence of 7,266 meaning there was unmet need amongst residents in Buckinghamshire.  There were 3,000 people undiagnosed who may not be receiving any support. Nationally, there were currently 900,000 people living with dementia in the UK and this was set to rise to around 1.6 million by 2040.  There were over 42,000 people with young onset dementia in the UK with 240 residents in Buckinghamshire. This had particular challenges and needs that were not always recognised.

·         One of the aims of this review was to identify gaps in the dementia journey and to look for ways to improve access to services. There was a need for greater collaboration between service providers and this was mentioned almost universally as a way to improve services.

·         The Group heard many examples of good work being undertaken to support people with dementia and carers but currently it was dis-jointed and could be hard to access the support needed at the right time.  Evidence showed that there were long waiting times for the memory clinics and people did not always receive the support they need following a diagnosis. Dementia diagnosis rates were low locally and nationally leading to significant unmet need and poorer outcomes.

·         The Group appreciated budget pressures and capacity issues but felt there needed to be renewed effort to use existing resources in a better way to make a real difference.  For example, council run day centres – these could provide much needed local support in partnership with voluntary groups.

·         The Impact of Covid on existing dementia support service meant it was taking time to get back to running some of the services pre-covid.

·         The Group felt there was a lack of ownership and leadership to drive forward improvements across the whole system and a lack of a clearly defined strategy.  One of the recommendations was to urge commissioners to work together to co-design support services that met the needs of people living with dementia throughout their journey and to support carers, including access to community support. The Group heard from a number of community organisations who provided activities and support and it was important to make the most of this work and actively take steps to integrate them into the dementia support network. Nearly all these organisations were self-funding and could do so much more to take pressure off the health system if they were better integrated.

·         The Group hoped this review would strengthen the approach to the prevention agenda, reduce the stigma and increase diagnosis rates.  In addition to raise awareness amongst young people about dementia and encourage family and friends to receive the support they need.

·         The Group also hoped that access to information, support and advice was made easier for people living with dementia and their carers. Many were not able or have time to go online to search for help. Leaflets and booklets were valued as was peer support.

·         This review was undertaken as a rapid review to ensure the report could be used to help inform Integrated Care Board discussions around future funding of dementia services.  It was clear through the evidence gathering that Bucks was currently underfunded in this area and to ensure future needs were met, there needed to be additional funding alongside a renewed effort to work more collaboratively across the integrated system to provide a more joined-up and accessible service.

·         The report put forward 18 recommendations.  Some of these recommendations were aimed at council services whilst others were aimed at health partners and other key organisations.  It is hoped that the report and recommendations would serve to confirm the need for additional funding request that had already been made to the Better Care Fund and the ICB. The review identified as one of its key recommendations the need for an overall multi-agency dementia strategy that covered the entire dementia journey that had clear responsibilities for all partners and was properly integrated. The Committee felt it was the Council that was in the best place to lead and co-ordinate this Strategy. Improving access to long term support should reduce costs for both the health service and social care by keeping people as well as possible at home for longer reducing hospital admissions.

Cabinet then asked the following questions:-

·         It was important that there was broad representation from all of the community groups. As part of the review the Group did look at the membership of the Dementia Steering Group and it did include representatives from all of the agencies involved in dementia care and the voluntary groups were well represented and did attend the meetings.

·         A question was asked whether the multi-agency strategy would be the driving force in making changes. The Review Group Chairman reported that this was essential and would be the framework to show the responsibilities of all the partners and would encourage them to work together to provide a more joined up service. There were a lot of service providers who were not entirely aware of what other providers were delivering which was where the gaps in service occurred.

·         Reference was made to the undiagnosed residents who were not on the dementia pathway and whether this was just an issue at the early stages of the journey due to stigma or whether patients had started the journey but had not reengaged. The Review Group Chairman commented that both applied typically a number of residents came quite late to the process with a reluctance to come forward. The pandemic had also not helped where many patients had been isolated and found it difficult to see their GP. Diagnosis was key. There were also long delays to attend clinics with capacity issues. It was important to note that social prescribers could also diagnose dementia. Once on the pathway the support would be available to residents and they would be better supported. The Chairman of the HASC Committee reported on two big pieces of work that they were about to undertake that were integral to this; the year’s review of the recommendations of the development of primary care networks which looked at numerous new roles in the PCN which could be raised with the ICB e.g carrying out dementia checks and a joint piece of work with the Growth, Infrastructure and Housing Select Committee on future health care planning, primarily looking at whether there were enough resources, development etc for primary care. The Leader agreed and responded that one of the biggest challenges for the NHS was the ageing population with chronic illnesses and also with dementia which would also impact on Council budgets.

·         A Member queried the number of people undiagnosed in Buckinghamshire (57%) and asked how this figure had been reached and who had provided the data. The Review Group Chairman reported that the figures had been provided by the ICB and PCN monitoring which were in line with national figures and also could be underestimated, however they were confident with those figures. The HASC Chairman reported that there were a lot of organisations working in the field who supported this figure. The Review Group Chairman reported that they had spoken to dementia patients and carers and it was a relief to obtain a diagnosis so that they could start to manage their dementia and commissioners played an important role in communicating what services were available to engage service users and support them to keep well.

The Cabinet Member for Health and Wellbeing responded to the report stating it was an excellent report which impacted on a number of workstreams including the Carers Strategy and that nothing should be looked at in isolation. It was crucial to obtain the voices of patients and carers living with dementia which should feed into any service design. Listening to the questions asked around unmet need and the importance of being granular around the data it was important to share data across agencies and partners to establish accurate figures in order to plan health and social care. This review would feed into the Health and Wellbeing Board and Integrated Care Board priorities. The additional funding for the ICB was welcomed but it was still unclear how much funding would be available and in addition there was the Better Care Fund. Resourcing was always important. 

The Cabinet Member then went through a complete breakdown of the cabinet responses to the recommendations which can be found here.  The following questions and points from Cabinet Members were as follows:-

·         There were a number of inter dependencies and co-dependencies and it was important therefore to keep a careful eye on tracking actions to ensure that progress could be monitored. The Cabinet Member reported that this was the world of social care and co-ordination was key with more joined up services. The Dementia Strategy Group was the best vehicle to manage these recommendations and the transformation work. The Corporate Director also reported that it would be part of the service improvement plan.

·         Under the section on access to information it referred to improving information on the website and this could be addressed through the Cabinet Member’s service area and the digital team. The Corporate Director also referred to the Dementia toolkit which was very useful and easy to navigate. The Cabinet Member also referred to the Bucks Online Directory and making sure this was up to date and easily accessible and providing hard copy information.

The HASC Chairman and Review Group Chairman were thanked for their work.

RESOLVED

1) That the Select Committee and Review Group, as well as the supporting officers, be thanked for their work and subsequent recommendations.

2) That Cabinet’s responses to the review and recommendations, as set out and circulated to Members, be AGREED.