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.

Coping Strategies : Pacing : Parenting : People : Writing : Young People

InterAction 33; 2000; pages 22-23 Caring for carers; Is Direct Payments for M.E.