The Lewy Body Society and 13 other health and care charities have called on the Government to launch a full, independent review of NHS continuing healthcare (CHC), warning that families facing complex health needs are being left to navigate a distressing and inconsistent system.
A petition signed by more than 26,000 people was delivered to the Department of Health and Social Care, alongside a letter urging Health and Social Care Secretary Yvette Cooper to commit to a review and to publish a clear timetable for its completion.
We were proud to be represented by Rachel Thompson, the LBS-funded Specialist Consultant Admiral Nurse for Lewy body dementia, and Lewy body carer Andrea Dix.
CHC is a package of care that is arranged and fully funded by the NHS for adults assessed as having complex long-term health needs. This can be delivered at home or within a care home. But the charities warn that flaws in how needs are assessed and how decisions are made leave families fighting for funding whilst facing substantial care bills
Rachel said: “Alongside thousands of people with progressive long term health conditions, families affected by Lewy body dementia are too often being denied the support they desperately need through CHC funding.
“Lewy body dementia is a particularly complex and unpredictable condition which includes cognitive, behavioural and physical health changes. However it is still too often misunderstood.
“Common symptoms including hallucinations, mobility problems and cognitive changes can fluctuate and as a result are often disregarded, even at the end of life.
“Family carers who are often already exhausted and stressed, are left trying to navigate a system which is difficult to understand, time-consuming and fails to acknowledge the needs of many people with dementia as being health related.
“As an Admiral Nurse supporting families affected by Lewy body dementia, people often tell me they have been discouraged from applying for CHC funding due to a perception that it is impossible to access.
“For those who do apply, many people give up if an initial assessment is unsuccessful, as they feel unheard, unrecognised and have no energy or resources to appeal. This leaves families feeling demoralised and the needs of those they care for overlooked.
“The current CHC system needs urgent change in order to adequately recognise the complexity of degenerative health conditions such as Lewy body dementia. Families are already facing incredibly difficult situations and deserve a system which works to support them rather than against them.”
Independent analysis conducted by the Nuffield Trust found that the number of people eligible for CHC has fallen over time, with significant variation across England that cannot be fully explained by differences in local populations. Its report describes families facing a challenging assessment process and potentially catastrophic care costs when funding is refused.
Baroness Louise Casey, who chairs the Independent Commission on Adult Social Care, described the current CHC system as “astonishing” and “inexplicable” in a speech at the Nuffield Trust Summit in March 2026.
We welcome the Government’s commitment to establish a National Care Service in the next Parliament, but improving access to existing NHS funding is an urgent test of its ambition to fix care.
Our joint letter states: “We urge the Government to commit to a full and independent review of NHS continuing healthcare and publish a clear timetable for its completion. This must begin now, alongside the development of the National Care Service.”
The petition is backed by the Lewy Body Society, Dementia UK, British Polio Fellowship, Carers Trust, Carers UK, Dementia Carers Count, Huntington’s Disease Association, Pathfinders Neuromuscular Alliance, MS Society, Muscular Dystrophy UK, Neurological Alliance, Parkinson’s UK, Spinal Injuries Association and TIDE – Together in Dementia Everyday.
