Meet others like you, and get good advice
When you are told what is wrong with you, and when you come into hospital, it can be very worrying, and you and your parents will have lots of questions.
The doctors and nurses will be able to answer most of your queries, and you can find out more by visiting our Child and Family Information Centre, but it can still be very reassuring to talk to other children who have similar things wrong with them, and for your parents to talk to other parents who have been through a similarly anxious time.
Support groups offer advice on what you may be going through, and sometimes have meetings you or your parents can go to, to meet others who have experienced the same thing.
Many support groups visit the hospital on a regular basis. These are some of the support groups that currently visit:
- Little Hearts Matter (for children who have only half a heart, and their parents).
- Max Appeal (for DiGeorge syndrome)
- Children's Heart Federation (for all heart conditions)
- Society for Parents of Children with Cancer (SPOCC)
- Sargent Cancer Care (CLIC Sargent; the CLIC Sargent nurses also work in the hospital)
- Children's Liver Disease Foundation
- Kidney Research UK (for advice on kidney disease)
- Ichthyosis Support Group (ichthyosis is a skin disease)
- Headlines (Craniofacial; you can also see a story about Callum, someone with this condition, here on our website)
- Cleft Lip And Palate Association (CLAPA)
- Changing Faces (for facial disfigurement)
If you or your parents have any questions about what is wrong with you or your time in hospital, please ask the doctors or nurses on your ward or when you come into the hospital for an appointment. They will be happy to answer them or will tell you where you can find more information and support.