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 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.
- 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.
Consultation and inquiry responses
We respond to consultations and inquiries from government departments and other organisations to influence changes to the benefits system. 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.
Cost of living resource hub
We have put together information about the cost of living increase including resources that will help you find more information and additional support.
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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.
