What the government’s benefits reforms mean for people with Huntington’s disease.
On Tuesday 18 March 2025, the UK government announced its plans to reform the benefits system to deliver savings of five billion pounds by 2030. We’ve explained below how these changes could impact people living with Huntington’s disease and how you can give your views on the proposed changes.
What are the proposed changes to the benefits system?
Personal Independence Payments (PIP):
- The eligibility criteria for PIP will be tightened up from November 2026. The government has said it will introduce a new eligibility requirement to ensure that only people who score a minimum of four points in at least one daily living activity will be eligible for the daily living component of PIP. This won’t affect the mobility component of PIP.
- There won’t be a freeze on PIP and it won’t be means-tested.
- If someone is getting PIP now and could be affected by the changes the government plans to make to eligibility, the changes will apply at their next award review.
- In future, under proposals set out in the government’s consultation document, the Work Capability Assessment will be scrapped, with the PIP assessment becoming the single assessment to receive both financial support in PIP and any extra financial support related to health and disability through Universal Credit.
- The government will review the PIP assessment process.
- The government wants to increase the number of face-to-face assessments.
Universal Credit:
- Incapacity benefits under Universal Credit will be frozen in cash terms for existing claimants at £97 per week from April next year. This means they will not be increased in line with inflation until 2029/30. The amount will be reduced to £50 per week in 2026/2027 for new claimants.
- People who receive the new reduced Universal Credit health element after April 2026, who have the most severe, life-long health conditions, and who have no prospect of improvement and will never be able to work, will see their incomes protected through an additional premium.
- There will be an above-inflation increase in the standard rate of universal credit for all those seeking work, adding up to £775 a year extra by 2029/30.
'Right to try':
- People will have the right to try returning to work "without the fear this will put their benefits at risk".
Merging benefits:
- The government will consult on merging jobseeker's allowance and employment support allowance into a time-limited "unemployment insurance".
- The Work and Pensions Secretary said: "If you have paid into the system, you'll get stronger income protection while we help you get back on track”.
Our position on PIP
We believe that:
- The PIP assessment process doesn’t meet the needs of people living with Huntington’s disease and assessors often lack knowledge of the condition. The current PIP descriptors make it challenging to effectively assess the ability of people living with Huntington’s disease to carry out specific daily living and mobility activities. The charity is working hard with the four companies that carry out these assessments to improve their knowledge and understanding.
- All people with Huntington’s disease who are eligible for PIP should be entitled to an ongoing award of PIP. The nature of the condition means that, over many years, the disease progresses until the end of life. That’s why it doesn’t make sense to continue to assess someone living with Huntington’s disease for PIP throughout their lives. We welcome the announcement that there will be an ending of reassessments for disabled people who will never be able to work and people with lifelong conditions to ensure they can live with dignity and security.
- All assessors and Department for Work and Pensions (DWP) decision-makers should have training on Huntington’s disease and how it affects people’s ability to engage in the PIP assessment process. The charity will work tirelessly to help provide this.
Cath Stanley, Chief Executive, Huntington’s Disease Association says:
The government is proposing significant cuts to disability benefits and we will oppose any changes that would make it harder for people with Huntington’s disease who need benefits to access them. We have signed a letter to the government, alongside other charities, expressing our concerns. We are pleased to see the end of reassessments for those with lifelong degenerative illnesses like Huntington’s disease.
Our plans
We will be asking people affected by Huntington’s disease about their experiences of the benefits system to help inform our response to the government’s consultation.
This will include an online survey and focus group. We will be in touch with more details about how you can get involved.
How you can respond to the government’s consultation
There is now an opportunity for you to give your views on some of the government’s proposals, by responding to its consultation (Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper consultation).
The deadline to respond is 30 June 2025.