Handing our letter to Department for Work and Pensions
Awareness, Campaigning
Support not struggle: Helping people with Huntington's disease have a better experience of the benefits system.
People living with Huntington’s disease often have a poor experience of the benefits system. We’re pushing for this to change.
Our position on Personal Independence Payment (PIP)
We believe that:
- The PIP criteria used to assess the ability of someone to carry out specific daily living and mobility activities needs to be updated. This is because it does not reflect the needs of people living with Huntington’s disease, particularly those who are struggling due to cognitive changes.
- There should be an end to unnecessary PIP assessments for people living with Huntington’s disease. There is no reason why a person with the condition who is already receiving the highest rates of PIP for both categories, should be reassessed. For people with Huntington’s who are on the lower rates of PIP for mobility and/or daily living, we are calling for compulsory reassessments to be replaced with a ‘light-touch’ check-in every five years. This should be followed by a voluntary reassessment if the person’s needs had increased, with the option of a paper-based assessment.
- It should not be possible for a person living with Huntington’s disease to have their award reduced, as their needs will only increase. Removing this possibility would ensure that people with the condition who have increasing health and social care needs are not deterred from requesting a reassessment, due to anxiety of losing essential support.
- People living with Huntington’s disease should only be assessed for PIP by assessors who have professional experience of neurological conditions. This is crucial as three in four people (75%) we surveyed (2025) told us their assessor did not understand the mental health or cognitive impact of Huntington’s disease.
Our evidence
We provide evidence to government departments and other organisations to push for changes that will improve the benefits system for people living with Huntington’s disease.
You can find out more below:
How you can get involved
By becoming a campaigner, you can help us fight for people living with Huntington’s disease to have a better experience of the benefits system. This could involve anything from signing a petition to joining us outside parliament to raise awareness among MPs and the public.
When you sign up to be a campaigner, you'll be the first to hear about our campaigns and how you can get involved.
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How you can get involved
Join us and help campaign for better support for people affected by Huntington’s disease. When you sign up to be a campaigner, you'll be the first to hear about campaigns the Huntington’s Disease Association is planning and ways you can get involved. Please tick the campaign box below when you fill out the form.
