Children with a serious condition or special needs

Find out what support is available, and how to get it, if your child has a serious condition or special needs.

Learning that your child has a disability or illness is bound to be stressful and upsetting. It's a good idea to get as much information as possible, so you're well informed.

Ask your GP or specialist about any concerns you have. For example, you could ask the following:

  • Is there a name for my child's problem? 
  • Does my child need more tests to get a clear diagnosis?
  • Is the condition likely to get better or worse?
  • Where is the best place to go for medical help?
  • What help is available for my child?
  • What help is available for me?
  • How can I get in touch with other parents who have children with a similar problem?
  • What can I do to help my child?

You may find it difficult to understand and absorb everything that's said to you at first. Ask for the information again if you feel you need to.

If you can, get a friend or relative to come with you, or take a pen and paper so that you can make some notes.

Child development centres

In most areas, teams made up of health and care professionals will help children with special needs and their families. These teams include:

  • children's doctors (paediatricians)
  • therapists
  • health visitors
  • social workers

The teams are usually based in child development centres. You can ask your GP, health visitor or hospital paediatrician to refer your child to one of these teams.

Further information and support

Ask your GP, health visitor or specialist about other sources of support in your area.

You can also contact these organisations and services directly:

  • Contact a Family is a charity that provides information, advice and support to families with a disabled child. You can phone the free helpline on 0800 808 3555. They also have extensive information on their website about different medical conditions, knowing your rights and the benefits you may be entitled to.
  • Other parents who have been through similar experiences can be a valuable source of support. Contact a Family can put you in touch with other families.
  • There are many specialist charities for specific conditions ask your health team or search online for your child's condition. 
  • Your local Family Information Service provides information on all services available to parents, including parents of disabled children.
  • Sure Start Children's Centres provide a range of early childhood services. Find your nearest Sure Start Children's Centre and check what they offer.
  • The charity Family Fund provides grants for families raising disabled or seriously ill children and young people. Find out more on the Family Fund website.

Children with special educational needs

If you're concerned that your child has special educational needs (that is, you think they might need extra help at nursery or school), talk to your child's nursery or school in the first instance.

If you child isn't at nursery or school, you can discuss your concerns with a health professional who already knows you and your child, such as your health visitor or GP.

Your child will be able to access different types of extra help, although what this is depends on their specific educational needs. Children with complex needs may need an education, health and care (EHC) plan.

Find out more here:

Benefits for children with disabilities

If your child has a disability, you may be able to claim benefits such as Disability Living Allowance (DLA) or Carers Allowance.

The Money Advice Service has more information on the financial support available for parents or carers of a disabled child

Article provided by NHS Choices

See original on NHS Choices

Record managed by Oxfordshire Family Information Service

Page last reviewed: 17/08/2016

Skip back to top of page