Raising funds for individuals with muscular dystrophy

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Written by Jane Stein, MDC Care Advisor at Oxford Muscle Centre.

Before deciding to raise funds for a person with muscular dystrophy or an allied neuromuscular condition it would be advisable to clarify what the statutory services have a duty to provide, and in what circumstances they can provide funds. Charitable funds should only be used for things which the statutory services are unable to provide. The list below should help clarify the situation with respect to statutory funding.

Contents:


What is funded and what isn't

  • Mobility – including wheelchairs, walking aids (such as rollators) and vehicles. Wheelchairs should be provided by Wheelchair Services, which is a part of the NHS - ask for a copy of their criteria. Walking aids should also be provided by the NHS after assessment by a therapist. Vehicles may be obtained by those with the high rate mobility component of Disability Living Allowance via the motability scheme (this is non statutory provision).

  • Equipment to assist independence at home – usually provided free of charge by social services following an assessment by an occupational therapist.

  • Medical equipment – provided free of charge by the NHS.

  • Medical treatment – provided free of charge by the NHS (always speak to your consultant prior to travelling abroad to investigate treatment options or for alternative therapies).

  • Home adaptations – usually funded through a Disabled Facilities Grant free for children under 18 (up to a certain level) but means tested for adults. Liaise with your local social services occupational therapist. Please note, very few charities will fund adaptations.

  • Computers – funded by the education authority if for use in school and the employment authorities for use at work (speak to the Disability Employment Adviser at the Job Centre Plus).

  • 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 – liaise with social services. Help may be means tested for "social care" (such as washing, dressing and meal preparation) as opposed to "medical care" (care which needs to be given by a nurse or doctor).

  • Holidays – funding for respite care may be available via the NHS or social services.


Tips when raising funds

When raising funds for yourself or another individual remember the following:
• Never raise funds without the knowledge and agreement of the beneficiary.
• Never raise funds for equipment that the individual has not had a professional assessment for.
• Know how much you need to raise and only embark on something if you are confident it is achievable.
• Be very clear with donor charities or individuals that the fundraising is for an individual and not a registered charity.
• Retain all paperwork and receipts, and keep clear accounts.
• Return any funds which cannot be used for the agreed purpose.


How to obtain help:

If at all possible try to arrange for one of the professionals involved to co-ordinate the fundraising. Approach only those charities or organisations that are appropriate (such as those that the applicant meets the basic criteria for). Criteria for making an application may be based on one or more of the following:
• Diagnosis.
• What the request is for.
• Where the person needing the help lives.
• The age of the person requiring the help.
• Financial status of the person or family requesting the help.
• Employment background (including periods of military service).
• Support of a relevant professional.
• Amount of finance required.


Where to search for help

Where to search for help
For a list of the charities most regularly used by people with a neuromuscular condition, along with a brief description of their remit, see below.

Almost all applications require the support of a qualified care or medical professional. In most cases those requesting help will be asked to complete an application form which usually involves revealing details of personal circumstances and finances.

The Information Officers at the Muscular Dystrophy Campaign have access to a computer software package called “Funder Finder for People in Need”. They are willing to undertake searches for you but can not make applications on your behalf.

Local libraries usually have a copy of the latest edition of “A guide to grants for individuals in need”. This is published by the Directory of Social Change. Contact number: 0845 077 77 07.

Citizens Advice Bureaux and local solicitors often hold details of local trusts.


List of charities that may be approached by people with a neuromuscular condition

Only charities that offer help throughout most parts of the UK are listed.

Condition Specific Charities
Joseph Patrick Trust
Muscular Dystrophy Campaign
61 Southwark Street
London SE1 0HL
Tel: 020 7803 4800
Freephone: 0800 652 6352
Email: info@muscular-dystrophy.org 

The Joseph Patrick Trust helps towards the cost of equipment for people of all ages with muscular dystrophy and allied neuromuscular conditions. A completed application form and professional assessment report are required.

The Jennifer Trust for Spinal Muscular Atrophy
Elta House
Birmingham Rd
Stratford-upon-Avon
Warwickshire CV37 0AQ
Tel: 0870 774 3651
www.jtsma.org.uk

JTSMA assists people with SMA with the cost of wheelchairs and other essential equipment.

Charities that assist children only
The Family Fund
Unit 4
Alpha Court
Monks Cross Drive
Huntingdon
York YO32 9WN
Tel: 0845 130 4542
www.familyfund.org.uk

This charity assists families of severely disabled children under 16 where the annual family income is below £23,000 (2005 figure). Help is given towards days out, holidays in the UK and equipment. Help with the cost of driving lessons for parents are also offered.

React
St Luke’s House
270 Sandycombe Lane
Kew, Richmond
Surrey TN9 3NP
Tel: 020 8940 2050
www.reactcharity.org

React assists families with a child under 18, who has a life-limiting condition, with the cost of equipment.

BDF Newlife
BDF Centre
Hemlock Business Park
Hemlock Way
Cannock
Staffordshire WS11 7GF
Tel: 01543 468 888
www.bdfnewlife.co.uk

BDF Newlife helps families of children under 18 where the child is significantly affected by an inborn condition (birth defect or congenital abnormality). Grants are made towards the cost of equipment – even equipment that is usually funded by a statutory source if a long wait would adversely affect the child.

Caudwell Charitable Trust
Minton Hollins
Shelton Old Road
Stoke on Trent ST4 7RY
Tel: 0845 300 1348
www.caudwellcharitabletrust.com

The Caudwell Charitable Trust funds equipment for seriously ill or disabled children.


The Variety Club House
93 Bayham Street
London NW1 0AG
Tel: 020 7428 8100
www.varietyclub.org.uk

The Variety Club House helps fund wheelchairs for children under 18.

Whizz-Kidz
Elliot House
10-12 Allington Street
London SW1E 5EH
Tel: 020 7233 6600
www.whizz-kidz.org.uk
Will help fund mobility aids including wheelchairs for children under 18.

Charities that assist children only

The Family Fund
Unit 4
Alpha Court
Monks Cross Drive
Huntingdon
York
YO32 9WN
Tel: 0845 130 4542
Web: www.familyfund.org.uk

This charity assists families of severely disabled children under 16 where the annual family income is below £23,000 (2007 figure). Help is given towards days out, holidays and equipment. Help with the cost of driving lessons for parents are also offered.

React
St Luke’s House
270 Sandycombe Road
Kew, Richmond
Surrey
TW9 3NP
Tel: 020 8940 2575
Web: www.reactcharity.org

React assists families with a child under 18, who has a life-limiting condition, with the cost of equipment.

BDF Newlife
BDF Centre
Hemlock Business Park
Hemlock Way
Cannock
Staffordshire
WS11 7GF
Tel: 01543 468 888
Web: www.bdfnewlife.co.uk

BDF Newlife helps families of children under 18 where the child is significantly affected by an inborn condition (birth defect or congenital abnormality). Grants are made towards the cost of equipment – even equipment that is usually funded by a statutory source if a long wait would adversely affect the child.

Caudwell Charitable Trust
Minton Hollins Building
Shelton Old Road
Stoke on Trent
ST4 7RY
Tel: 0845 300 1348
Web: www.caudwellcharitabletrust.com

The Caudwell Charitable Trust funds equipment for seriously ill or disabled children.

The Variety Club House
93 Bayham Street
London
NW1 0AG
Tel: 020 7428 8100
Web: www.varietyclub.org.uk

The Variety Club House helps fund wheelchairs for children under 18.

Whizz-Kidz
Elliot House
10-12 Allington Street
London
SW1E 5EH
Tel: 020 7233 6600
Web: www.whizz-kidz.org.uk

Will help fund mobility aids including wheelchairs for children under 18.

Charities that assist both children and adults
Family Welfare Association
501-505 Kingsland Road
London
E8 4AU
Tel: 020 7254 6251
Web: www.fwa.org.uk

The Family Welfare Association gives grants for equipment to people of all ages who are on low incomes throughout the UK.

Independence at Home
Bamford Cottage
South Hill Avenue
Harrow
HA1 3PA
Tel: 020 8864 3818

Independence at Home provide small grants to people that lives at home and are affected by chronic illness or neurological problems. The grants are only given where the balance left to raise is under £2,000.

The Catharine House Trust
Ridge Cottage
New Cut
Westfield
East Sussex
TN35 4RL

The Catharine House Trust helps to fund equipment for disabled people of all ages.

The ACT Foundation
The Gatehouse
2 Park Street
Windsor
Berkshire
SL4 1LU
Tel: 01753 753 900
Web: www.theactfoundation.co.uk

The ACT Foundation helps fund equipment for disabled people of all ages and modifications to homes, schools, hospices etc.

Aidis Trust
3 Gunthorpe Street
London
E1 7RQ
Tel: 020 7426 2130
Web: www.aidis.org

The Aidis Trust advises on the use of, and helps fund, communication aids (including computers) for disabled people of all ages.


Charities that assist adults only

Equipment for Independent Living
6 Quintock House
Broomfield Road
Richmond
Surrey
TW9 3HT
Tel: 020 8940 2438

Provides small grants to help fund equipment for adults over 16 years.



Related publications by the Muscular Dystrophy Campaign

• Information Technology
A factsheet with information about what to think about when buying a computer such as assessments and adaptations.

• Wheelchair Provisions for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions
A comprehensive guidance aimed at helping staff plan appropriate wheelchair and seating provision for both children and adults with a neuromuscular condition. Although primarily aimed at Wheelchair Service staff, it can also be a useful resource of best practice for users, parents, carers and other health professionals.