Together we will build a better life for people affected by Huntington's disease. An important part of this work is influencing people. We influence through campaigning.

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Our views on how to improve the benefits system for people with Huntington’s disease

The previous government consulted on proposals to make changes to Personal Independence Payments (PIP). The purpose of PIP is to provide non-means tested cash payments to disabled people and people with health conditions to help them live independent lives.

Read our response to the consultation

Some of our key concerns and recommendations are:

• The PIP assessment process does not meet the needs of people living with Huntington’s disease.
• People with a diagnosis of Huntington’s disease should receive PIP on an ongoing basis.
• Most people with Huntington’s disease have evidence of their diagnosis and would benefit from there being a greater emphasis on condition during the assessment process.
• Replacing a cash transfer with an alternative system will make the lives of people living with Huntington’s disease more difficult.
• All Huntington’s patients, family members and carers should be provided with coordinated, multidisciplinary team care.

Next steps

It’s not clear when the new government will respond to the consultation, or if they will consider implementing any of its proposals. We will keep you updated and continue to advocate for people affected by Huntington’s disease.

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Opportunities to get involved with our policy and campaigns work

In autumn 2024, we will be launching a survey to get your views on the important issues that we should campaign on. This will help our work to influence decision makers, including the government, to try and improve care and support for people affected by Huntington’s disease.

We will be in touch to share the survey. If you’re interested in taking part in this survey but are not on the mailing list, please add your details.

Join the mailing list 

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Campaigning - what else?

Here, you can read our responses to relevant reports and see what other campaigns we are taking part in. We believe we are stronger together, working with other organisations including the Neurological Alliance.

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Campaigning - the story so far

We have previously campaigned for:

Mental Health Services Access
Access to community mental health services when psychiatric symptoms are present - you can read more about this on the Mental Health access webpage.

Specialist Care Coordinator
A care coordinator in each area to ensure people can navigate the many professionals they need and those professionals have knowledge and understanding of this disease.

NICE Guidelines
Specific NICE guidelines for Huntington's disease to ensure there is consistent care for this complex illness - you can read what has happened so far in this news article.

Armed Forces review
A review of the blanket refusal to entry to the armed forces unless have had a negative predictive test.

Benefits review
The uplifting of benefits to reflect inflation as many people with Huntington's disease have higher energy and nutritional needs - this was agreed in 2023.