On Wednesday, Prime Minister Andy Burnham promised to end decades of political drift on health and social care and build a system that gives people dignity, security and support when they need it. For people living with PSP & CBD and their families, that ambition could not be more important.
PSPA welcomes the Prime Minister’s decision to accelerate Baroness Louise Casey’s review of social care so that it reports next year. We also welcome his commitment to strengthen the social care workforce, begin cross-party talks and confront honestly the difficult decisions involved in fixing social care and creating a fair and sustainable system.
After decades of reports, reviews and promises, the emphasis on “problem-solving, not point-scoring” is encouraging. Lasting reform will need political courage, cooperation and sustained leadership.
But the real test is whether this renewed commitment from government leads to real change for people who need care now – including those for whom adult social care needs arise directly from serious health conditions like PSP & CBD.
The missing part of the social care debate
Debate about social care often focuses on how care should be funded and whether people should have to sell their homes or exhaust their savings to pay for it. Those questions matter – but social care reform cannot be only about how people pay for it. Reform must also address whether people receive the care they need, when they need it, and whether health and social care services work together around the individual.
For people living with PSP & CBD, that means reform of NHS Continuing Healthcare funding must form part of the Government’s social care agenda.
NHS Continuing Healthcare (CHC) is a package of care arranged and fully funded by the NHS for people with significant ongoing social care needs arising from a “primary health need”. It can fund social care at home or in a care or nursing home and should help coordinate the different health and care professionals involved.
For someone living with PSP or CBD – progressive neurological conditions affecting movement, communication, swallowing, and cognition which cause substantial personal care needs – CHC can be a lifeline. It can make the difference between receiving coordinated support and a family being left to organise and fund complex care alone.
Too often, however, that lifeline is not available.
Fewer than one in four receive NHS Continuing Healthcare funding
PSPA’s newly published report, The State of PSP & CBD, is based on the experiences of 650 people living with PSP or CBD and family carers.
It found that only 23% of people living with PSP or CBD were receiving NHS Continuing Healthcare (CHC) or the equivalent system in Scotland. A further 25% did not even know what CHC was.
These figures are especially concerning because PSP & CBD cause severe and increasing dependency. Three to five years after diagnosis, 84% of respondents described the impact of the condition as severe, and three-quarters said every day was challenging. Yet access to CHC becomes more common only later. Our survey suggests that support frequently follows the escalation of need instead of anticipating it. Families are often left coping until circumstances become extreme or a crisis occurs.
Those who do not receive CHC may be required to self-fund social care, despite their needs arising directly from their PSP or CBD – exactly the situation CHC was designed to address. Families affected by PSP & CBD have reported spending tens or even hundreds of thousands of pounds on care while navigating an NHS CHC assessment process they find complex, inconsistent and poorly equipped to understand the conditions.
A system already known to be failing
These findings build on PSPA’s 2025 report, The State of NHS Continuing Healthcare.
That report found that fewer than one in five people assessed for Continuing Healthcare eligibility through the standard CHC pathway in England and Wales were found eligible. More than one in four waited at least a month for a decision, while stark postcode lotteries meant that in some areas only 5% of applications led to CHC being awarded.
Our community told us about fighting to secure a CHC assessment, dealing with professionals unfamiliar with their conditions, facing long waits and being refused funding for their progressive neurological condition despite substantial and ongoing needs.
Without CHC, people living with PSP & CBD are not only exposed to enormous care costs, but their care is more likely to be fragmented, family carers are more likely to have to fill gaps between services, and avoidable crises or hospital admissions become more likely.
That is why PSPA launched our #FixCHC campaign in 2025. More than 260 supporters downloaded our template to contact their MP, and we have continued to press for reform through parliamentary engagement and our work with the Continuing Healthcare Alliance.
An opportunity for lasting health and social care reform
The Prime Minister is right to reject the idea that social care exists separately from the NHS. The two systems are intrinsically connected. CHC sits directly at that boundary – and its failures demonstrate what happens when responsibility, funding and coordination between health and social care are unclear or inconsistent.
A reformed system should identify people with complex health-related care needs earlier, assess them fairly and consistently, and coordinate support before families reach breaking point.
The Casey review and the Government’s cross-party work must therefore examine the role of NHS Continuing Healthcare as part of wider social care reform. That should include reforming the CHC National Framework, so it better recognises progressive and fluctuating conditions like PSP & CBD; improving professional knowledge among assessors; ensuring carers’ evidence is properly heard; ending unacceptable geographical variation; and making CHC a source of planned, coordinated support rather than something accessed only near the end of life.
The Prime Minister’s speech offers a welcome opportunity to move beyond another cycle of promises and reviews – he has recognised both the human cost of social care failure and the need for a person-centred system integrated with the NHS.
For people living with PSP & CBD, delivering that promise must include fixing CHC.
The new Government has an opportunity to lay the foundations of a fair, sustainable and integrated care system that provides people with the right support at the right time. The test will be whether it succeeds where previous governments have failed – and turns its welcome ambition into lasting change.
