If you rely on carers/ Personal Assistants and are often too ill to explain what you want them to do, develop a system so that you can leave instructions when you do have the energy. Some people use index cards, with each card having instructions about a particular job. Having detailed instructions written out also makes it easier when there is a new carer/ PA. Another possibility is to leave a recorded message on a dictaphone or tape recorder. Having a routine can also help. Local authorities now have the option (although not the duty) to make Direct Payments to people with disabilities as an alternative to the client using social services own care provision. This gives the client more options to enable them to purchase suitable care, although it also involves taking on extra responsibilities. RADAR has a pack of information about Direct Payments Tel: 020 7250 3222. There is also an article about Direct Payments on our website.
- INDEPENDENT LIVING ALTERNATIVES, TRAFALGAR HOUSE, GRENVILLE PLACE, MILL HILL, LONDON, NW7 3SA Tel/ Fax: 020 8906 9265 Wed/ Fri 10.30-4.00 Website: www.ILA.mcmail.com Provides support and information and personal assistants, including advice about Direct Payments.
- ACTION FOR M.E. has information about holidays and respite care, send an SAE plus 50p to Action for M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY.
- MEACH TRUST, 25 TURNPIKE WAY, ASHINGTON, WEST SUSSEX, RH20 3QG Website: www.meach.org Raising money with the primary aim of setting up care homes specifically for people with severe M.E.
- CARING FOR CARERS HELPLINE Freephone: 0800 100 000 can give information on benefits and support networks.
- CROSSROADS-CARING FOR CARERS, 10 REGENT PLACE, RUGBY, WARWICKSHIRE, CV21 2PN Tel: 01788 573653 Website: www.crossroads.org.uk Provides trained care attendants for the benefit of the carer.
- THE KILORAN TRUST, 157 BLYTHE ROAD, LONDON, W14 0HL Tel: 020 7602 7404 E-mail: email@example.com Website: www.kilorantrust.org.uk Provides supportive breaks for carers.
- THE CARERS NATIONAL ASSOCIATION, 20-25 GLASSHOUSE YARD, LONDON, EC1A 4JT. Carers Line Freephone: 0808 808 7777 Mon-Fri 10am-noon and 2-4pm.
- DOGS FOR THE DISABLED, THE FRANCES HAY CENTRE, BLACKLOCKS HILL, BANBURY, OXON, OX17 2BS Tel: 01295 252 600 E-mail: firstname.lastname@example.org Website: www.dogsforthedisabled.org supply trained dogs to help disabled people
- CARELINK Tel: 0845 762 6536 have a database of organisations and counsellors. They arrange short-term respite care with volunteer families.
: Young People
InterAction 33; 2000; pages 22-23 Caring for carers;
Is Direct Payments for M.E.