Integrated care systems (ICSs) bring with them an opportunity to change how the health and care system works with the voluntary sector, yet greater clarity is needed about what each side can offer to the other. Coming out of COVID-19 and continuing through out this winter, people with dementia are facing increasingly long waits for a diagnosis as well as physical and mental deterioration from being isolated for so long. Their carers are often facing burnout too as a result of community care being pulled back during the pandemic. Charities like Alzheimer's Society can provide dedicated support to individuals through our services, as well as working with the NHS to ensure provision is made for people with dementia to stop them falling into crisis and adding further strain onto acute trusts.
NHS guidance issued in 2021 sets an optimistic tone, suggesting the health system is ready to embrace the innovation and person-centered knowledge the third sector can bring. Yet reading the guidance there is almost too much opportunity afforded. Integrated care partnerships can have members of the voluntary community and social enterprise sector sitting on their boards; board papers going to the integrated care board should be co-produced; "leaders from the voluntary, community and social enterprise (VCSE) sector, citizens, patients and carers [should help in] setting priorities in systems and places". Provider collaboratives are also "expected to leverage the expertise of VCSE organisations to support co-design and delivery of [services]," while place-based partnerships should include VCSE membership on their boards.
With so much opportunity, it is clear why NHS England has introduced VCSE alliances, which are intended to sit below the integrated care boards and allow membership from all voluntary groups within the ICS boundaries. Many of these VCSE alliances are not yet formed and, for those that are, it is not clear how the voluntary sector can access them, as their leads are not collectively published anywhere. While we welcome the aim of equity, ensuring a voice for all amid such a large and varied membership also poses a problem in itself. However, some systems, such as North West London ICS, have developed strong models, with tiered membership that focuses on different parts of the ICS population.
It is also not clear how the VCSE alliances will work to deliver their NHS England-directed purpose of reducing inequality, improving population health, and enhancing productivity. With contract tendering likely to dramatically reduce once the Health and Care Bill passes, will the VCSE alliances become places where ICS needs are sounded out and contract alliances formed? Talking to various commissioners some clear themes are coming through. First is the desire to work with hyper-local organisations in the ICS. These small grass roots really came to the fore during the pandemic, identifying rising needs and responding to them quickly. However, commissioners are recognizing that these organisations very often don't know how to bid for services or understand issues such as GDPR and will need help to upskill.
At Alzheimer's Society we are now beginning to think through how we pivot as an organization to better work with ICSs.
This gives larger charities with both national and local reach, including here at Alzheimer's Society, the chance to establish themselves as an infrastructure charity, working to engage and support local charities. It also means these larger charities must rethink how they collaborate with each other. Some of this work isn't new; Alzheimer's Society we worked with smaller charities during the pandemic furlough period to ensure their vital work was maintained. With the landscape of engagement and commissioning changing, at Alzheimer's Society we are now beginning to think through how we pivot as an organization to better work with ICSs. We are mapping our internal structures against the new ICS structures and deciding who and where we should engage.
We know we need to be humbler in recognizing what we do and don't do well. Our greater focus on health inequalities this year is one area in which we know we need to engage with smaller dementia charities to ensure that we understand the needs of people with dementia from an ethnic minority background, for example. On the flip side, our ability to include people with dementia in all the work we do is a skill that is sought after by ICSs. We are thinking through how we offer lived experience engagement to ICSs in a way that is meaningful but doesn't overwhelm our volunteers. We also know that ICSs are looking for data on which to make their commissioning decisions and are working to segment our data along ICS/place lines rather than CCGs.
But our work to date has highlighted that the VCSE sector needs reciprocal support from ICSs. Some conditions such as dementia have less nationally collected data available to them – this should not put us at the back of the queue for engagement. Engagement with people with lived experience should also be purposeful with the ICS aware of what it hopes to gain, so it avoids becoming a tick box exercise conducted to fulfil NHS England guidance. Feeding back to people on how their engagement made a difference is also vital to help build up a strong relationship for the future. VCSE alliances should be meritocratic – starting with each ICS laying out how to join them. Moreover, there is work to be done to understand what good looks like when it comes to larger charities engaging with smaller charities.
While NHS England's guidance was a helpful launch point, further work on how it is being implemented in real life is needed if the VCSE sector and ICSs are to develop a truly refreshed way of working together that harnesses the expertise of both. If we get this right, people with dementia will benefit from care pathways better tailored to their needs and better integration between health and social care. This improved support will reduce the pressure on acute trusts who see the impact of poor care in increased A&E attendances and longer length of hospital stays, hopefully with the view to make winter pressures in future years more manageable.