Published Tue, 2011-03-15 11:55; updated 1 year ago.

Some children are born with or develop medical conditions that are serious, long-term or limit their life expectancy.

If this happens to your child, you and your family will need help and support to learn to live with their condition.

Talking to your GP or specialist can help. Ask them about any concerns you have. Some questions you might like to ask include:

  • Is there a name for my child's problem? If so, what is it?
  • Does my child need more tests to get a clear diagnosis?
  • Is the condition likely to get better or worse, or will it stay the same?
  • Where is the best place to go for medical help?
  • Can I get any help or support?
  • How can I get in touch with other parents who have children with a similar problem?
  • How can I help my child?

You may find it difficult to understand and absorb everything that's said to you at first. You may also find that not all health professionals communicate well with parents. If you feel you need to, go and ask for the information again. If you can, get a friend or relative to come with you, or take a pen and paper so you can make some notes.

Special educational needs

If you're concerned that your child has special educational needs (that is, you think they might need extra help at school) talk to a health professional who already knows you and your child, such as your health visitor.

You or any of the professionals involved in caring for your child can ask your local authority to carry out a statutory assessment of your child. After this the local authority will decide whether to issue a statement. This will describe any extra support your child will need at school.

The Advisory Centre for Education offers advice on education and produces a handbook on special education. See Useful links.

Child development centres

In most areas, teams made up of children's doctors (known as paediatricians), therapists, health visitors and social workers will help support children with special needs and their families. These teams are usually based in child development centres (CDCs). Your GP, health visitor or hospital paediatrician can refer your child to one of these teams. If you have any concerns or need further support, ask for a referral.

Getting information, advice and support

Finding out that your child has a disability or illness can be a stressful and upsetting experience. You'll be trying to cope with your own feelings at the same time as making difficult decisions.

Your GP, health visitor, social worker or a counsellor can all help. So can other parents who have been through similar experiences. Even with help it'll take time to adjust.

Contact a Family brings together the families of children with special needs and gives information and advice. You can phone the free helpline on 0800 808 3556 or go to www.cafamily.org.uk.

The Early Support programme, backed by Sure Start, provides information and support for very young children with disabilities or special needs. Go to www.earlysupport.org.uk.

To find out what's available in your area speak to your health visitor, GP, local Sure Start Children's Centre, children's services department or the area special educational needs co-ordinator (SENCO) at your local education department or Early Years service.

Benefits

If you have a child with disabilities you may be able to claim Disability Living Allowance (DLA) or Carers Allowance (CA). If you're already getting benefits or tax credits you may be entitled to more. See Parental rights and benefits in Useful links.

NHS Choices