Getting financial help

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.

Disability benefits

  • 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.
  • 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.

Help with transport

  • The Blue Badge Scheme
    A Blue Badge lets you park in places other drivers can’t, so that you can park closer to the places you want to reach. With a Blue Badge you can usually (but not always) park for free. Some private car parks, e.g. at hospitals, may still expect you to pay.
    You can apply for a Blue Badge online.
  • Train travel
    A Disabled person’s railcard costs £20 per year and entitles the holder and a carer or friend to one third off train tickets.
    In Wales, you can also travel on some train lines for free if you have a Concessionary travel pass (see “Bus travel” below).
  • Motability Scheme
    The mobility element of your PIP can be used to lease a car, scooter or motorised wheelchair via the Motability Scheme.
  • Bus travel
    Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Wales.

Help with equipment and adapting your home

  • Disabled Facilities Grant
    If your home needs to be adapted to meet your needs, you may be able to get a Disabled Facilities Grant from your local council to help with the costs. Usually, your occupational therapist will help you figure out what adaptations will work best for you.
    A Disabled Facilities Grant won’t affect any benefits you get.
  • Council tax reduction
    If your council tax increases as a result of adaptations to your home, for example the building of an extension, you can apply to your council to have the increase removed, as long as the adaptation is as a result of your disability.
  • VAT relief
    People with a long term illness can get certain products, services and pieces of equipment they need without being charged VAT on top of the cost of the items.
    The types of items covered include certain types of stairlifts, wheelchairs, adjustable beds, alarms, motor vehicles and building work.
    Your supplier can advise you which items qualify for VAT relief, and will ask you to complete an ‘eligibility declaration’ form.

Financial help for carers

See also Carers/Financial help for carers.

Other grants

A wide range of grants are available, depending on your specific needs and situation.

Help with nursing home fees

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.

Help with nursing home fees through NHS “continuing care”

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

NHS-funded nursing care

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 are not eligible for NHS continuing healthcare but have been assessed as needing care from a registered nurse
  • you live in a care home registered to provide nursing care

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.