Financial and care support for people affected by Huntington’s disease
If you or someone you care for is affected by Huntington’s disease, you may need financial support, care funding, or both.
There are two key forms of support in the UK that people affected by Huntington’s disease often access:
Personal Independence Payment (PIP)
Financial support to help with the extra costs of daily living and mobility.
NHS Continuing Healthcare (CHC)
Fully funded care for people with complex health needs.
This page gives an overview of both and helps you understand which type of support may be right for you now, and what may become relevant as your needs change. The support someone with Huntington's disease needs can change over time. Some people may need help with everyday activities or getting around, while others may need ongoing care or nursing support due to complex physical, cognitive or behavioural needs.
You may be eligible for one or both types of support, depending on how Huntington’s disease affects you.
Personal Independence Payment (PIP)
Personal Independence Payment (PIP) is a benefit for people aged 16 to State Pension age who have a long-term health condition or disability. It helps with the extra costs of living with Huntington’s disease, such as difficulties with:
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everyday tasks
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communication
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memory and concentration
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mobility or planning journeys
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managing medication or treatment
PIP is not means-tested, which means you can apply whether or not you are working or have savings.
NHS Continuing Healthcare (CHC)
NHS Continuing Healthcare (CHC) is a package of care that is arranged and paid for entirely by the NHS. It is for adults with long-term, complex health needs, which may arise as Huntington’s disease progresses.
CHC can fund:
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care at home
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care in a residential or nursing home
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nursing and specialist support
Eligibility is based on care needs, not diagnosis, but many people with Huntington’s disease may qualify because of the condition’s complexity and unpredictability.
We have developed a guide to support healthcare professionals in carrying out accurate NHS Continuing Healthcare assessments for people with Huntington's disease.
