Sleeping

A common problem facing children with arthritis, especially those who wear night-time splints, is getting to sleep and staying asleep. It can help to establish a firm bedtime routine to get the reluctant child to bed. In busy homes, and where medicines and splints upset the child, bedtimes can become stressful for everybody. Try to keep to the routine you choose whoever puts the child to bed.

The children may become more aware of their symptoms during the evening and often have fevers at night. Many families have found that using crepe bandages over splints at night is more comfortable for children, particularly if the joints swell overnight. Most children are more comfortable using cotton pyjamas/night clothes and bedding. Using leg splints at night does help the child to walk more quickly in the morning.

Try using a manufactured (natural fibre) ‘sheepskin’ bottom sheet which may be more comfortable for your child. These can be purchased or alternatively borrowed from community nursing services so ask at your doctor’s surgery about who to telephone.

Daily Living Centres

Most areas have a Daily Living Centre where you can get impartial information, advice and carers and children have an opportunity to test out different equipment for independent living. The centres do not sell the equipment but they will tell you the cost and supplier’s details. The Red Cross sometimes run their medical equipment loan from the same site. You can also arrange for an appointment with an occupational therapist.

Look in your telephone directory for the address and telephone contact for your nearest Daily Living centre.

Assessment of carers’ needs

In order to maintain the quality of life for the young person in your care, you must take care of yourself. Asking for help can be very difficult for carers who have always had to cope, but alongside the young person’s needs are those of the carer. In our experience, if the young person is to be helped tomorrow, then the carer must be helped today. The quality of life for the young person is also going to be better if the carer is looked after too.

The Carers (Recognition & Services) Act 1995 and the Carers and Disabled Children Act 2000 give you the right to ask for an assessment of your needs, for some services to be organised to take care of the carer, and to request Direct Payments.

This is still a new approach and you will have to be persistent in asking for your ‘carer’s assessment’. Contact the local health and social care team (from the telephone directory) and request a carer’s assessment.