Written evidence submitted by Alzheimer's Society

Evidence submission

Dementia is a complex condition crossing primary, secondary, community acute and social care. This complexity inevitably leads to a lack of ownership of the condition within the health and care system meaning support for dementia is not provided by one service or care setting. This creates variation in the quality and type of support people receive.

The integration of health and care services present an important opportunity for people affected by dementia to experience better joined-up care across GP services, hospital care and social care. Better integrated dementia care also brings an opportunity to relieve operational bottlenecks within the system and improve quality of life in people affected by dementia by, for example, reducing crisis admissions and delayed hospital discharges.

There is no specific legal remit within the new Health and Social Care Act 2022, or within NHSE system guidance to focus on dementia; an ICS must only have regard to dementia as part of its overall remit to ensure health and social care is commissioned to meet the needs of its whole population. We believe this is a lost opportunity to recognize the immense impact on local health and care systems that dementia currently presents.

Other health conditions such as cancer, stroke and mental health have specific performance metrics or ring-fenced funding attached to them in England that ICSs must meet. This creates a double disadvantage for dementia, since priority is often placed on what is measured in health systems with funding challenges.

This is exemplified with dementia diagnosis. The condition is incurable and there are no highly effective treatments available. As we have heard anecdotally, this can often put people with dementia at a disadvantage when it comes to being prioritized for access to diagnostic tools. An Alzheimer’s Society and Royal College of Psychiatrists survey in August 2022 found that 10% of trusts report patients waiting over six months for a CT scan – more than four times the maximum six-week target. Three out of five (60%) recorded waits of more than two months for advanced PET and MRI scans.

Average waiting times for basic and advanced scans are stagnating post-pandemic, with the audit showing people are waiting on average 9.2 weeks for a standard and 10.7 weeks for an advanced scan, twice as long now compared to 2019, where on average it was a five week waits for both forms of scans.

NHSE’s Long-term Plan Update and DHSC’s 10-year national dementia plan need to include a commitment to recovering diagnostic rates to pre-pandemic levels and then to go further. As part of this we are calling for £70m investment in England’s diagnosis services to increase rates, audit memory services to understand regional and national backlogs and support primary care to implement innovative practice.

Beyond diagnosis, people affected by dementia consistently experience a fragmented care and support pathway, right up to end-of-life. There are positive mechanisms in place to support better integration between health and care, such as pooled budgets and shared care arrangements at system and place level. An example of this is the Sandwell model in the Black Country ICS. This model is a provider collaborative between eight local and national organisations who each form part of the local dementia service offer, from diagnosis to end-of-life. It is a mutually collaborative partnership for the benefit of Sandwell residents living with memory loss and is funded jointly by Sandwell Council and Sandwell and West Birmingham CCG (now Black Country Integrated Care Board).

We want to see dementia benefit from the full potential that integrated care and support can bring and there is a now a real opportunity to finally deliver on the needs of people affected by dementia. To deliver on this opportunity, we believe ICSs must:

-          Declare dementia a priority by: having a named dementia lead in place who is accountable to outcomes; a dementia steering group in place, structured in a way to allow best practice to be shared; and a dementia strategy in place to ensure equity of provision.

-          Reprioritize funding for dementia to ensure that it is focused on supporting timely diagnosis and providing sufficient support after diagnosis in order to reduce crises, such as hospital admissions, which are costly on a financial, social and individual level.

-          Realise the potential of Voluntary, Community and Social Enterprise (VCSE) organisations in designing and developing care pathways.

We have analysed the current five-year strategies of each ICS. Our analysis has uncovered that 18 do not have a published plan in place. Of those that do, five do not mention dementia at all, while 13 mention dementia and improving dementia care but do not have a detailed strategy to achieve this. Just six have strategies in place that have a clear commitment and plan to improving dementia care.

We are calling on all ICSs to prioritise dementia in their next five-year plans due to be published before April 2023. As part of this prioritisation we are asking systems to ensure their strategies achieve the following:

-          Diagnosis rates returned to or above the national two-thirds targets

-          A comprehensive post-diagnostic pathway, including a dementia support worker in every primary care network (PCN)

-          Increase referrals to dementia research trials

-          Use dementia as a pilot condition for improved integrated care

-          Are co-designed with people affected by dementia

-          Share successes and challenges with other ICSs

We recognise the current ICS landscape is developing at pace and much of the learning is being developed through implementation. However, as an organisation we propose there needs to be much clearer guidance and engagement with civil society by NHSE. It remains unclear how VCSE’s can best use their resources, local knowledge and engagement with people with lived experience to make the most significant contribution to the ICS agenda.

One example of this is the development of VCSE alliances, which have been developed by NHSE to ensure all voluntary sector groups have a clear way of engaging with ICSs. While this is a welcome move, how these alliances operate, including how to get involved, varies across each ICS. More could be done centrally to advertise these alliances, including contact information, to ensure VCSE efforts are focused on improving care for those that need it.

October 2022