Thank you to everyone who signed the benefits letter.
We wrote a letter to Rt Hon Liz Kendall MP, the government Minister who had responsibility for the benefits system calling for the government to abandon its plans to cut disability benefits.
1,392 people signed the original letter, which was handed in to the Department for Work and Pensions in July. We have now received a response from Sir Stephen Timms MP, Minister for Social Security and Disability.
The government acknowledged the challenges faced by people with Huntington’s disease and confirmed that they are carrying out a full review of Personal Independence Payments (PIP). The review will look at how PIP can be made fairer and more supportive, helping people live more independently. Importantly, the government has committed to involving disabled people, charities, clinicians and experts, and we will make sure the Huntington’s community is represented.
The review is due to begin later this year and conclude by autumn 2026, with the findings shared in parliament. The review will make recommendations to the government on how to improve the PIP process.
We were delighted that after extensive campaigning from disabled people and their organisations, including the Huntington’s Disease Association, the government dropped its plans to tighten the criteria for claiming PIP. If this change was introduced, then it would have meant some people with Huntington’s disease losing their benefits. However, cuts will still take place - the health element of Universal Credit will be cut in half and frozen for new claimants from April 2026.
We were also pleased to be invited to a meeting with Sir Stephen Timms on Tuesday, 2 September, alongside other charities, to discuss how to ensure the review is carried out in partnership with disabled people.
Cath Stanley, Chief Executive of the Huntington’s Disease Association, said:
The current PIP assessment process doesn’t meet the needs of people living with Huntington’s disease. Too often, assessors lack an awareness of how Huntington’s disease affects people’s lives. That’s why we welcome the upcoming review of PIP and were glad to have the chance to meet Sir Stephen Timms in September. It’s really important that the government listens to disabled people and their organisations when deciding how the review will work and what it should achieve.