When you live with a progressive muscle-wasting condition, you may need many different pieces of equipment or increased access to care throughout your life. This page aims to outline ways you can get support, and give you some guidance on how to go about raising funds for things you need but cannot get through statutory services.
Statutory funding that may already be available
Before deciding to raise funds, find out what the statutory services have a duty to provide, and in what circumstances they can provide funds. You should only fundraise for things that statutory services don’t provide.
The list below should help clarify the situation for you:
- Wheelchairs and mobility equipment Your local wheelchair services, which is part of the NHS, should provide wheelchairs. Your GP can give you a referral to wheelchair services, acting on recommendations from your neuromuscular consultant. The NHS should also provide walking aids, after assessment by a physiotherapist or occupational therapist (OT). If you want an assessment, ask your GP for a referral.
- Adapted vehicles If you’re on the enhanced rate of the mobility component of Personal Independence Payments (PIP), or the higher rate of the mobility component of Disability Living Allowance (DLA), you can get a specially adapted vehicle via the Motability scheme. This is a non-statutory provision, which involves exchanging your PIP or DLA mobility payments for a lease on car, scooter or powered wheelchair. See our Motability factsheet for more information about the scheme.
- Equipment to assist independence at home This can be provided free of charge by Social Services, following an assessment by an OT.
- Medical equipment This is provided free of charge by the NHS.
- Medical treatment This is provided free of charge by the NHS. Always speak to your consultant first before investigating treatment options abroad or alternative therapies).
- Home adaptations These can be funded through a Disabled Facilities Grant (DFG), which is free (up to a certain amount) for children under 18, but means-tested for adults. Your local Social Services or OT can help you access this grant. See our Grants for housing adaptations factsheet for more information.
- Computers The education authority can fund computers for use in school and the employment authorities for use at work. Speak to the Disability Employment Adviser at the Job Centre Plus for further information.
- Education The state has a duty to provide appropriate education for all children. If necessary, they can fund education in a private or charitably run establishment.
- Care packages Get in touch with your local Social Services. ‘Social care’ (such as washing, dressing and meal preparation) may be means-tested, while ‘medical care’ (which needs to be given by a nurse or doctor) is not. See our Care package factsheet for more information.
- Respite care Funding for respite care may be available via the NHS or Social Services.
Things to remember when raising funds
When fundraising for yourself or someone else:
- never raise funds without the knowledge and agreement of the person needing the equipment or care
- never raise funds for equipment that the individual has not had a professional assessment for
- know how much you need to raise and only start fundraising if you are confident it is achievable
- be clear with donor charities or individuals that the fundraising is for an individual and not for a registered charity
- keep clear accounts, including all paperwork and receipts
- return any funds that cannot be used for the agreed purpose
Criteria for funding applications
Every organisation will have their own criteria. You can usually find this information on their website or by phoning the office.
Here is a guideline of things organisations generally look at when deciding whether or not to award a grant:
- what the request is for
- where the person lives
- the age of the person
- the financial status of the person or family applying
- the applicant’s employment background (including periods of military service)
- support of a relevant professional
- the amount of funding required