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The NHS There is a range of specialist NHS services which people with physical disabilities can obtain at local, regional and national level. These include help from continence advisers, rheumatologists, neurologists, dermatologists and rehabilitation consultants. Specialist rehabilitation services are available, for example, for people who have had strokes, head or spinal injuries, who have neurological or multiple disabilities and for young disabled adults. Regional Rehabilitation centres provide specialist services including spinal injuries units, rehabilitation engineering, communication aids, orthotics (splints) and artificial limbs. Your GP, therapist or community nurse can refer you on to specialist services, if necessary. The NHS Executive has also published a series of books for professionals and managers giving the user’s point of view on particular conditions, including: Incontinence, Eczema, Epilepsy, Dementia, Haemophilia, Multiple Sclerosis and Stroke; The Department of Health, PO Box 410, Wetherby LS23 7LN Voluntary organisations Disabled people can obtain a range of help and support from organisations dedicated to their particular disability. this site can only mention a selection of the larger national organisations most likely to have a branch in your area (see local phone book) and some national ‘umbrella’ groups. For groups covering other disabilities, contact your GP or consultant, or NHS Direct on 0845 4647 The Directory for Disabled People has a detailed section on Helpful Organisations. This site does have most of the addresses mentioned in the directory (see ‘Addresses). The Voluntary Agencies Directory has concise details or around 2,000 organisations, many relating to physical disability. (see ‘Useful Information’) Arthritis Care aims to promote the health, well-being and independence of people with arthritis through services, support, self-help, influence and information. It has over 650 branches and groups, 64,000 members, runs four specially equipped hotels and a national visiting service. It publishes a range of free leaflets and other publications. Arthritis Care also runs an information counselling service offering confidential support and information. Tel/text: 0207 916 1500 freephone Helpline: 0800 289 170 Young Arthritis Care is for people under 45 with arthritis. It has a nationwide network of over 80 contacts, all of whom are themselves young people with arthritis. ASBAH (The Association for Spina Bifida and Hydrocephalus) works to achieve equality of treatment in, education, employment, housing and many other areas for life and to improve awareness not only about the problems, but the potential of disabled people. Its range of services Include:
Ask The Neurologist.Com Stop Smoking Today Cancerlink provides emotional support and information to people with cancer, their families, friends and health professionals. It produces range of publications and acts as a resource for over 500 cancer support and self-help groups by offering training and development. Free Cancer Information Helpline 0800 132 905 Headway National Head Injuries Association Ltd is the leading national voluntary organisation for people with head injuries. Its mission is to promote understanding of all aspects of head injury and to provide information, support and services to people with head injury, their families and carers. Headway has over 100 support groups and 40 day care centres and produces a range of publications. Tel: 0115 924 0800 The Motor Neurone Disease Association brings together everyone connected in any way with MND - people with MND, professionals and carers. Its two priorities are the support of research and the provision of care to people affected by the disease. The National Office operates a comprehensive information service and publishes a magazine and information bulletins. Regional care Advisers are based in the community and give a service to both people with MND as well as having an education role. In addition, the Association can offer equipment on loan and make limited financial grants. An expanding branch of network volunteers enables people to find support and practical help locally. Tel: 01604 250 505; Helpline: 08457 626262 The Multiple Sclerosis Society aims to promote research into finding the cause of and a cure for MS: and to encourage people with MS to come together in mutual support. The Society campaigns to influence Government to improve everyday factors which affect people’s independence. It produces information booklets and the magazine MS Matters. Most of the work is done through a network of 362 local branches: Providing welfare support both practical and emotional;
Tel: General Enquiries 0207 610 7171 Helpline: 0207
371 8000; Scotland: 0131 225 3600
The National Society for Epilepsy (NSE) runs the Chalfont Centre for Epilepsy which offers nursing and residential care for people with epilepsy and other physical disabilities, together with a wide range of occupational, medical and paramedical services. It has opened the only magnetic resonance imaging (MRI) scanning unit dedicated to people with epilepsy. The NSE also undertakes a wide range or research, provides education and information service for people with epilepsy, their carers, other professionals and the general public; and it supports local self-help groups within a community network. Tel: 01494 601 300 The Parkinson’s Disease Society is focused on the needs of those with Parkinson’s and their carers. Its mission is the conquest of the disease and the alleviation of the suffering and distress it causes, through effective research, education, welfare and communication. Tel: 0207 931 8080; Scotland: 0141 332 3343 SCOPE - for people with cerebral palsy aims to ensure that all people with cerebral palsy and related disabilities, their families and carers, will have access to properly resourced services which meet their needs and have full right to control their lives. Services include: creating housing, education and support opportunities; support for families and carers; research; advocacy; information and advice services; sports and leisure services; support for self help groups; campaigning and other activities. The monthly Disability Now provides information on all forms of disability. Tel: 0207 619 7100; Cerebral Palsy Helpline: 0800 626216 The Sickle Cell Association provides information, advice, support and financial assistance to individuals and families living with sickle cell disorders. Tel: 0208 961 7795 Spinal Injuries Association (SIA) is the self-help group for spinal cord injured people and their families. It is run by paralysed people (paraplegics and tetraplegics), but welcome all people as members. As well as providing a range of services, SIA actively campaigns on vital issues affecting the everyday lives of disabled people. SIA’s Information and Welfare Service provides advice: the Telephone Counselling Service lends a confidential ear; and the Personal Assistant Service provides short-term care in people’s home. SIA’s holiday facilities include a narrow boat controllable from a wheelchair, and holiday homes designed for wheelchair users. Tel: 0208 444 2121 Counselling Tel: 0208 883 4296 The Stroke Association provides practical support for people who have had stroke, their families and carers. It funds and promotes research into causes, diagnosis, treatment, rehabilitation and care of strokes. It also takes part in health education to help reduce the incident of strokes. Its Community Service, Dysphasia Support, works to improve the communication skills of people who have lost ability through strokes. The Association provides advice and an information and education service; and emotional support to both families and people affected by strokes and living alone. Tel: 0207 566 0300 The UK Thalassaemia Society offers counselling to sufferers from thalassaemia. Tel: 0208 882 0011 Umbrella groups. As well as the larger organisations for particular physical disabilities, there are now many smaller ones dedicated to rarer disabilities. Those which share similarities are sometimes co-ordinated by ’umbrella groups’ which can be your first port of call for information. The British Council for Disabled People (BCODP) is the national umbrella organisation representing groups run by disabled people. Individuals are also welcomed to join as associates. The Council campaigns for the full integration of people with a disability into society. BCODP runs the National Centre for Independent Living in London. Tel: 0207 587 1663 BCODP Tel: 01332 295 551 The Long-term Medical Conditions Alliance (LMCA) has over 70 members ranging from large, established voluntary organisations to small self-help groups. It covers conditions ranging from arthritis, asthma and diabetes to back pain, eczema, and ME. These organisations work collaboratively together on the issues of common concern. LMCA aims to ensure that the voices of people with long-term medical conditions are heard, and to provide effective support for the voluntary organisations which belong to the Alliance. Contact: NHS Direct(rather than LMCA) for details of member organisations. Tel: 0845 4647 Members include: Acne Support Group/ Action for Dysphasic Adults/ Action for ME/ Aid for Children with Tracheostomies/ Arachnoiditis Trust/ Arthritis Care/ ASBAH/ Ataxia Talangiectasia Society/ BACUP (British Association of Cancer United Patients)/ Behcet’s Sybdrome Society/ Breakthrough Breast Cancer/ British Diabetic Society/ British Epilepsy Association/ British Sjogren’s Syndrome Association/ Cancerlink/ Changing Faces/ Coeliac Society Ltd/ College of Health/ Depression Alliance/ Dermatomyositis and Polymyositis Support Group/ DEBRA ( Dystrophic Epidermolysis Bullosa Research Association/ Ehlers– Danlos Support Group/ Family Heart Association/ Fibromyalgia Support Group/ Genetics Interest Group/ Haemophilia Society/ Insulin Dependent Diabetes Trust/ International Autistic Research Association/ Interstitial Cystitis Support Group/ Manic Depression Fellowship/ Marfan Association UK/ Medicalert Foundation/ Meniere’s Society/ Migraine Trust/ Multiple Sclerosis Society/ ME Association/ NASPCS ( Charity for Incontinent and Stoma Children)/ National Association for Colitis and Crohn’s Disease (NACC)/ National Association for Premenstrual Tension/ National Asthma Campaign/ National Back Pain Association/ National Cancer Alliance/ National Eczema Society/ National Kidney Federation/ National Osteoporosis Society/ Pain Concern UK/ Parkinson’s Disease Society/ Patients Association/ Perthes Disease Association/ Premenstrual Syndrome Help/ Primary Immunodeficiency Association/ Progressive Supranuclear Palsy Association/PAPAA (Psoriasis and Psoriatic Arthritis Alliance)/ Raynaud’s and Scleroderma Association/ Tuberous Sclerosis Association/ UK Coalition of People Living with HIV and Aids. Tel: 0207 813 3637 fax: 0207 813 3640 The National Council for Hospice and specialist Palliative Care Services act as the co-ordinating organisation for these services in England, Wales and Northern Ireland. Tel: 0207 723 1639 The Voluntary Organisations Disability Group (VODG) is a federation of 22 national voluntary organisations who provide direct services to support the disabled. Tel: 0207 802 8250 Some physical disabilities can bring complications which need special management, such as pressure sores and incontinence. ‘ All Dressed up Advice on Clothes’, Disabled Living Foundation £4.95 Are we there yet and Boots for Bridesmaid’s Children - are books with positive views of families and disability by Verna Allette Wilkins, Spinal Injuries Association, £3.95 The Arthritis Helpbook - by Kate Lorig and JF fries, Arthritis Care £11.95 For details of books about MS, please contact the Multiple Sclerosis Society Tel: 0207 610 7171 Pressure sores Being confined to bed is not the only cause of pressure sores. People who use wheelchairs, spend long periods in an armchair or have, heart, circulation, dietary and other conditions also risk developing them. Most pressure sores can be prevented. If pressure sores happen in spite of preventative action, contact your doctor, nurse or physiotherapist. Relieving the Pressure - your guide to pressure sores is a leaflet giving advice for disabled people and their carers on how to avoid pressure sores. Freephone the Health Literature Line on: 0800 555 777 Don’t get sore—get
moving is a video for staff at residential and nursing homes but it’s
advice applies to people in their own home. For sale or hire from CFL
Vision, PO Box 35, Wetherby LS23 7EX The problem of getting to the toilet in time affects around three million people of all ages. It can be treated or managed so that it interferes with your life as little as possible. You can get help from your GP, community or practice nurse, health visitor, local chemist, physiotherapist or an NHS continence adviser (your GP can tell you how to contact the continence adviser) The Continence Foundation provides both public and professionals with advice and information. It runs a confidential helpline and publishes useful leaflets and reading lists. It maintains close links with professional and user organisations, and campaigns for media coverage and open discussion to encourage people to seek professional help. It maintains a national database of helpful products , advisers and educational resources. The Enuresis Resource and Information Centre (ERIC) provides information and confidential, practical advice to children, parents, adults and professionals on the problem of enuresis: bed-wetting and daytime wetting. Tel: 0117 960 3060 Incontact works with and for people with bladder and bowel problems. It provides information, support and advice, publishes a quarterly newsletter and can put you in touch with local services or enable you to share your experiences with others. To reach Incontact, call the Continence Foundation Helpline. (see above) |
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