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Scottish Huntington’s Association joins call for action as crisis-hit sector reaches ‘tipping point’

Scottish Huntington’s Association has joined forces with more than 200 third sector health and social care leaders calling for urgent action to address the current crisis threatening the sector and leaving Scotland’s most vulnerable individuals and families to pay the price.

In an open letter to the First Minister signed by 240 of Scotland’s health and social care charities, published on the Herald on Sunday on 17 August, it is made clear that the consequences under-investment and a lack of financial redress will be felt across society, deepening inequalities and putting even more pressure on the NHS and public services.

“I am saddened that this letter needed to be written, and saddened that I felt compelled to sign it on behalf of Scottish Huntington’s Association. But sign it I did. The Herald headline that followed says it all: ‘APOCALYPTIC – Scotland’s entire care sector close to collapse.’ It’s time for UK, Scottish and local governments to stop blaming each other. It’s time to unite and act,” said Alistair Haw, Chief Executive, Scottish Huntington’s Association.

The letter, which can be read in full on the ALLIANCE website, also states that 61% of third sector health and social care organisations ‘will no longer be a going concern’ within four years if immediate steps are not taken.

Led by the Health and Social Care Alliance Scotland (the ALLIANCE) with the support of hundreds of its members, including Scottish Huntington’s Association, and the Coalition of Care and Support Providers in Scotland (CCPS), the letter makes four key asks of the Scottish Government:

  • An immediate, substantial cash injection in the upcoming Spending Review, including full cost recovery for employer National Insurance increases
  • A medium-term fully-funded recovery plan for the sector to address decades of underinvestment
  • Multi-year funding agreements adjusted for inflation, to ensure stability for organisations
  • A firm commitment to fully include the sector in planning and decision-making

Evidence from the ALLIANCE and CCPS lays bare the severity of the pressure currently facing the sector, and why Scottish Government’s ambitions cannot be achieved without investment and stability:

  • In a March 2024 survey by the ALLIANCE, nearly half (49%) of the member organisations that responded reported their financial position as “insecure”.
  • A February 2025 poll  by CCPS found that 67% of not-for-profit providers are relying on financial reserves to stay afloat – and of these 91% say they will cease to be viable within four years if that trend continues.
  • Recent data from SCVO shows that 81% of voluntary organisations are facing financial pressures that threaten essential services – an increase of 10% from 2023.

Through its membership of ALLIANCE, and with the support of CCPS, Scottish Huntington’s Association is committed to working with the Scottish Government to achieve these key asks for the wider health and social care sector, and for the families we support through the delivery of specialist Huntington’s services across Scotland.