The Government’s 2025 Budget was an important moment to address the challenges faced by people living with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Sadly, for our community, the Budget largely represents another missed opportunity.
People living with PSP & CBD face long waits in the NHS for accurate diagnosis and the right support, steep barriers to getting social care, and some of the most complex palliative and end-of-life care needs. While the Budget included some positive steps, it did not deliver the urgent action required to improve diagnosis, specialist care or support for families and unpaid carers.
Health: progress on buildings, but not on specialist care
The Government confirmed investment in Neighbourhood Health Centres, intended to bring services such as GPs and physiotherapists under one roof. This ambition is welcome; bringing services together like this could, in the long term, make care more joined-up for people with complex neurological conditions like PSP & CBD.
However, for PSP & CBD, the core challenge is not buildings – it is delays in support. There were no measures in the Budget that will help speed up the three-plus-year wait many people experience before receiving a diagnosis, nor any targeted investment in the neurology, physiotherapy, speech and language therapy, or occupational therapy workforces. Without additional staffing and specialist services, Neighbourhood Health Centres alone will not deliver the multidisciplinary support our community urgently needs.
This Budget was a moment to address unacceptable delays in referral and diagnosis for rare neurodegenerative conditions. Instead, those living with PSP & CBD are left waiting.
Social care: the can is kicked further down the road
Perhaps the most concerning omission is the total absence of new funding for adult social care. People with PSP & CBD often need intensive support at home, including help with mobility, communication and personal care. Yet councils and care providers remain under huge financial strain, with many families already struggling to secure appropriate support.
The Government has instead deferred major decisions to the longer-term Casey Commission. While long-term reform is vital, families affected by the conditions need help now. The lack of immediate investment leaves many facing a widening postcode lottery of care from cash-strapped councils.
PSPA will continue to press, alongside our partners in the Care & Support Alliance, for sustainable social care funding and to call for national consistency in support for people with progressive neurological conditions.
Palliative and end-of-life care: welcome investment, but major gaps remain
The Government has announced capital funding for hospices and committed to developing a new Palliative and End-of-Life Care Modern Service Framework. These are positive steps.
However, capital funding does not resolve the operational pressures faced by hospices – staffing costs, community nursing, home-visits, night care and the specialist palliative input that people with PSP & CBD need. Without long-term revenue funding, many hospices will continue to struggle.
People facing rapidly progressive, terminal neurological conditions cannot wait years for structural reform. Access to high-quality end-of-life care must be protected now.
Carers: debt relief is welcome, but meaningful support is still missing
PSPA welcomes the Government’s decision to cancel historic Carer’s Allowance overpayment debts, which have caused distress for thousands of families.
But this step does not meet the need for meaningful support for unpaid carers. There was no increase in Carer’s Allowance, no uplift to the earnings threshold, and no wider package to recognise the crucial role carers play in supporting people with PSP & CBD and relieving pressure on the health and care system.
Our message
This Budget offered a real opportunity to improve the lives of people living with PSP & CBD. Instead, it leaves major challenges unaddressed.
PSPA will continue to campaign for:
- Faster diagnosis through improved neurology capacity and professional education
- Access to integrated, specialist multidisciplinary care
- Sustainable funding for social care
- Stronger, fairer support for unpaid carers
- High-quality, locally available palliative and end-of-life care
People living with PSP & CBD, and those who care for them, deserve nothing less.
