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.
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.
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.
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.
Campaigning - what else?
Campaigning - the story so far