Charity says many older people with chronic ill health and significant care needs are likely to be wrongly missing out on CHC funding

New Age UK report points to the growing divergence between how NHS Continuing Healthcare funding is supposed to work, and how it actually works

Charity says many older people with chronic ill health and significant care needs are likely to be wrongly missing out on CHC funding, leaving some with huge care bills

Charity calls on the Government to end the sham that is the current CHC funding regime as part of a wider process of reforming social care

 Age UK publishes a new report today called "Continuing Healthcare?" which shows the CHC funding regime is moving away from its stated operation and purpose in some important respects, leading to older people and their families missing out on life-changing funding that should be theirs’, and undermining their opportunity to get the joined-up health and social care they need.

The report is based on new Age UK analysis of the latest official data about trends in the award of CHC funding, and also on the experiences of older people and their families who have approached the Charity for help.

For those who are found eligible, CHC is supposed to provide fully funded social care, integrated with wider health care support. To be eligible, you must be assessed as having a ‘primary health need’ that requires a package of care, either in your own home or a care home (or any suitable setting, including a hospice). Recipients typically fall into three categories: people at or near end of life; frail older people with complex physical or psychological needs; and people aged 18 and above with long-term healthcare needs.

Unlike the usual local authority route for accessing social care, CHC is not means tested and an individual is not expected to make a contribution towards the cost of their care. In theory, eligibility decisions should be independent of budgetary constraints and finance officers should not be part of a decision-making process. However, in practice, the NHC bodies that administer CHC, Integrated Care Boards, and their predecessors, have been under pressure to make savings from their CHC budgets for at least the last seven years.  

There are two ways to access CHC – the Standard Pathway, whereby a team of professionals carry out the assessment (this can take many weeks to arrange); and the Fast Track Pathway which can be triggered by a single professional and must be in place very quickly. The latter is intended for those with a rapidly deteriorating condition, usually at or near the end of life.

The context to the CHC trends identified in the report is that since 2017 there has been a 6% growth in the numbers of people in England aged 65 plus, and a 5.4% growth in the numbers aged 85 plus. All things being equal, you would therefore expect the numbers in receipt of CHC funding to have risen by a similar amount over this period.

In fact, they are stayed roughly stable – but their composition has changed very significantly:  nationally there is a steep overall decline in the numbers of people being newly assessed as eligible on the Standard pathway, from 4,628 in Quarter 1 2017/18 to 2,624 in Quarter 4 2023/24. This is a decline of almost half (43%). In contrast, over that same period, the number found eligible for Fast Track CHC has increased by almost a third (30%).

A further trend to which the report draws attention is an increase in people losing eligibility following a Fast Track decision. Whereas the number in receipt of Fast Track CHC funding at any one time has broadly stayed the same since 2017/18 (an increase of 5.5%), the number no longer eligible has grown by a massive 35%. The Charity says that what it thinks is happening is that if people granted Fast Track funding do not die as quickly as had been expected, they are at increasing risk of having their CHC funding removed, even if they remain profoundly ill and their needs are unchanged. This makes the periodic CHC reviews that follow an award, occasions to be worried about and even feared.

In addition, the report sets out the enormous geographical variation in your chances of being awarded CHC funding. Comparing the NHS bodies responsible for CHC – Integrated Care Boards – the number of recipients varies by 3.5 fold, from 86 per 50,000 population up to 300. In addition, the proportion of assessments for CHC that actually result in a person being found eligible varies from 3.4% to 57.9%, depending on where you live.

This new report also contains disturbing comments from families about their experiences in trying to secure and retain CHC funding for their profoundly ill loved ones. The process is routinely described as opaque and unfair, causing them enormous additional stress at a time when they are already coping with the physical and emotional toll of being close to someone who is extremely unwell or dying.

The Charity observes that what makes these battles for CHC even worse is that the stakes are so high: being awarded CHC funding can make a big difference to the quantity and quality of care that a person is able to receive. It also has a huge potential impact on people’s finances, given that an older person in this position is likely to require intensive social care support that quickly generates very large bills.

Caroline Abrahams, Charity Director for Age UK said:

“It’s no exaggeration to say that many families come to view Continuing Healthcare funding as a complete con, and the data suggest the gap between what it is supposed to do and what it is actually doing is growing. It is deeply unfair to expose families dealing with the serious ill health of a loved one to further trauma by making them battle for money in an opaque system, where decision-making seems pretty ad hoc and happens behind closed doors. It’s also a recipe for deepening inequalities, since more advantaged families are much better able to fight for their rights than others. In addition, the extreme postcode lottery for CHC makes a mockery of the idea that this is a rules-based system which is not influenced by the state of local NHS finances. It plainly is.”

“Seen from a broader perspective, the sham that is the current CHC funding regime is just one of many manifestations of a social care system that is out of time and failing to meet the needs of our growing older population. There can be no solution to the crisis in social care in this country without consideration of how we ensure people with serious health problems and resultant social care needs get support in a way that is fair and consistent with how we structure and fund the NHS and social care services – the original purpose of CHC.   

“There have been long-standing gripes about people being unfairly barred from receiving CHC funding because the eligibility process is deemed to have been rigged against them, people with moderate dementia being a case in point, but our new report uncovers another set of reasons for deep concern about how this funding regime is now working. In practice, it seems to be moving away from being a source of longer term care funding for profoundly frail and unwell older people, to one focused more and more on short, sharp injections of cash to support those at the end of life. This is to the extent that if a person does not die as quickly as expected, they are at increasing risk of having their CHC funding taken away.”

“The availability of good palliative care is patchy in England, yet it can make an enormous difference to the quality of a person’s final months, weeks and days. From this perspective I can see why commissioners may feel it makes sense to use CHC to help make up for this shortfall. However, with local NHS budgets under such pressure, the end result is that older people with ongoing chronic health problems, and associated high levels of social care need, are unfairly losing out. Yet these are the people who are most likely to face sky high social care bills. In this way the NHS is pushing its own financial responsibilities onto older people and their families or, in the case of those on low incomes and with few assets, onto their local authorities.”

“A few years ago I found myself in the midst of a battle for CHC funding on behalf of my mother, so I know how infuriating and distressing it is to be wrestling with officialdom when you want to concentrate one hundred per cent on the person you love. What may seem to NHS managers stuck between a rock and hard place to be unavoidable rationing decisions are experienced very differently by those on the receiving end, for whom the consequences are huge.

“This apparent shift in the use of CHC is happening without any public debate, and in contravention of the spirit and sometimes the wording of the law and guidance. This is unacceptable, and it is also destructive, not least because it undermines public trust in the NHS. That’s why we think it’s time for policymakers to accept that CHC has become entirely unfit for purpose. It desperately needs to be reformed, as part of a serious and transparent process of reviewing and restoring our social care system more generally.”

Some comments from older people to Age UK:

• Several reviews for CHC during her 8-year stay in a nursing home, during the last 5 of which she needed continuous and ALL personal care.  She fulfilled all published criteria for CHC but was always denied it - no reason given officially but told because budget insufficient and others worse.  This whole aspect was time-consuming and a total farce.” 
• Appalling and too gruelling and stacked against them to go into in detail. Feels like an utterly rigged system. The final decision was made by four people, only one of whom had met my family member for about an hour. The reasons given were spurious. We have given up, beaten.
• It was the attitude of the "Assessors", who treated us with no respect at all and made us feel as though we were asking for something we didn't deserve for her.  They had obviously been instructed to refuse cases wherever possible.  It left us feeling devastated and very upset.
• I also had a similar battle for my mother who had dementia & in a care home; made several Appeals; won my case eventually & she got a refund of her care home fees, but died within two weeks of receiving it! This process takes a great deal of perseverance & an ability to challenge in a knowledgeable way - very time consuming & tiring. I did both of these in my 60’s & 70’s!

Notes to editors

• If you receive care in your own home the NHS covers the cost of the care and support you need to meet your assessed health and associated care needs, which includes personal care such as help with washing and getting dressed. 
• If you receive NHS continuing healthcare in a care home the NHS pays your care home fees.

In 2018 The National Audit Office said, there may be differences in the way [clinical commissioning groups] and local authorities are interpreting the national framework to assess whether people are eligible for CHC due to the complexity of this framework^[7]

[7] National Audit Office (2018), Investigation into NHS continuing healthcare funding