Parents who appreciate the emotional impact of the illness on the child and on other members of the family are much better placed to spot problems early and do something about them. Making sure that there is enough help and support is very important. In addition to support from family and friends, social services and other professionals may need to help. Social services will be able to offer advice on practical support, including benefits and respite care. Your family doctor, as well as medical and nursing staff at the hospital, can offer help and advice.
Voluntary organisations can be very supportive for many families.
The school may need to make special arrangements for your child. When a child has complex needs, it may be helpful for the professional team to meet occasionally and make sure that everyone is clear about the treatment plan and who is doing what. If there are signs that your child is developing emotional or behavioural problems, you may wish to seek advice from your family doctor. If necessary, they can make a referral to the local child and adolescent mental health service for specialist advice. They may suggest that some family work could be helpful.