Living with Huntington’s can have an impact on your finances, which can add to the challenge of what is already a difficult situation. It may become increasingly difficult for you, and members of your family who look after you, to work or study. Meeting your care needs can sometimes be costly, too.
There are different forms of financial help available to people living in England and Wales, from the Department of Work and Pensions (DWP), your local council and other sources.
It’s important to be aware of all the help you’re entitled to and to apply for any help that could make life easier.
The charity 'Turn2us' have an on-line benefits calculator which is free to use to see what benefits you might be entitled to: https://benefits-calculator.turn2us.org.uk/AboutYou
Personal Independence Payment (PIP)
If you’re aged between 16 and 64, you may be entitled to claim Personal Independence Payment (PIP). This is intended to help with some of the extra costs caused by long term ill-health or disability. You can get an idea of whether you’ll qualify for PIP, and which components and which rates you might get, on the c-App website.
If you need extra help because of the symptoms of Huntington’s disease and you are aged between 16 and 64 you may be entitled to claim Personal Independence Payment (PIP). You don’t need to have worked or paid National Insurance to qualify for PIP, and it doesn’t matter what your income is, if you have any savings or you’re working.
We have produced documents on PIP specifically for people with Huntington's:
The DWP have made a series of videos which can help you when thinking about applying, or going through the application process:
More information on PIP is available on the gov.uk website
Employment Support Allowance (ESA)
If you have a long term illness, you may be entitled to Employment Support Allowance (ESA), whether or not you are currently working.
See also Carers/Financial help for carers.
A wide range of grants are available, depending on your specific needs and situation.
If you need residential care, your local authority may help you with the cost of this. As this is means-tested, they will carry out a financial assessment to see if you are entitled to this kind of help, and if so, how much. This assessment will take into account your income and assets, such as any property you own. This includes the value or your home, unless your partner or other dependent lives there.
The Care Act 2014 is changing how people are able to pay for their own care, introducing the right for you to ask for the local authority to pay for the cost of your care while you try to sell your home. This is known as a "deferred payment scheme".
If your care is fully funded by your local council, they may also select your nursing home. You are free to make your own arrangements, but you might need to bear some or all of the cost yourself. It is worth asking the local authority for a financial assessment in any case, because they might pay some or all of your care costs.
If your medical needs are very high, they may meet the criteria for fully funded NHS care. This means that you will receive the care and support you need at no cost to you, including the costs of residential care if needed, or care in your own home.
This is known as NHS continuing healthcare or continuing care. It is a package of care that is arranged and funded solely by the NHS for individuals who are not in hospital and have been assessed as having a "primary health need".
You can find out more about NHS continuing care here: http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx
If you live in a residential care home or nursing home, but are not eligible for NHS continuing healthcare, you may still be eligible for NHS-funded nursing care.
This is nursing care provided to you in your care home by a registered nurse. The NHS will pay a flat rate contribution directly to the home towards the cost of this nursing care.
You may be eligible for NHS-funded nursing care if:
You can find out more about NHS-funded nursing care here: http://www.nhs.uk/chq/Pages/what-is-nhs-funded-nursing-care.aspx
While coping with Huntington’s can be expensive at times, there are lots of different sources of help available. It’s important to make sure you get the support that you’re entitled to. Your local specialist Huntington’s Disease advisor (SHDA) can help and answer questions, and Citizen’s Advice can also provide, support, advice and advocacy.