Information for families in England and Wales
If your child has a very complex or very rare condition, they might be referred onto what are called specialised services. These are usually provided at large hospitals called regional 'centres of excellence' such as Great Ormond Street, Alder Hey, and Bristol Children's hospital.
Children have to be seen in these centres for certain conditions and treatments, for example cystic fibrosis, congenital heart disorders, complex neurological disorders, metabolic disorders, and some rare conditions.
As specialised services are only provided in a few centres, it can involve families having to travel long distances to access them.
Your child might receive all their treatment at the regional hospital or arrangements might be put in place so your local hospital provides some of the care with advice from the specialised centre. This is sometimes called 'shared care'. Attending the local hospital for routine check ups and treatments can be much less disruptive to family life than having to always travel to the tertiary centre.
In some areas, teams from the specialised service come out and run clinics at the local hospital, so families do not have to travel so far. This is not always possible as it will depend on the number of children in the area accessing the service as well as equipment needed.
Information for families in Northern Ireland and Scotland
We also support Northern Ireland and Scotland. Give our helpline a call on 0808 808 3555 for information and advice on any aspect of raising a disabled child, or call your local contact. Find out our details in the In your area section.