Give feedback on this pageRegister for Children/Young People with Chronic ill Health or Disability
What is the Register?
The Register is created and maintained as a joint project between Social Services, Education, Health, Voluntary Organisations and parents/carers of disabled children and young people (0-19) who have a chronic illness or disability to enable planning and coordination of services.
Benefits of registration
- regular newsletters - providing up-to-date information around disability issues.
- a Directory of Services - a comprehensive guide to services in your county.
- Family Partnership Group - (parents group) giving you a voice in service delivery.
- My Orange Book - a family held record which helps to avoid repetition of your child's history and informs those providing care at school and respite of your child's current needs and preferences.
Who sees the Register?
The Register is held on computer by Conwy & Denbighshire NHS Trust. Only the Register Coordinator and those professionals from Health, Education and Social Services who work with the child or young person have access to individuals information, otherwise, information is confidential and is not given to anyone else. General information, such as the number of children or young people on the register (but not their names and addresses and other personal details), is seen by the Joint Planning Group for Children with health needs and disabilities and may be included in the local authorities Children's Services Plan.
How do I change or remove details from the Register?
You can ask to see the information about your child at any time and change any details that are incorrect. You can also ask for your child's details to be taken off the Register at any time.
My Orange Book
Parents often find themselves repeating the child's medical history to a host of different professionals. The Orange Book provides a hand-held record filled in by the family, which provides an at-a-glance summary of all the information that is needed.
The idea is that the book will accompany the child at school, respite/shared care and hospital providing immediate up-to-date information about the child.
Further information
If you have any questions about the Register or 'My Orange Book', you can talk to your child's Specialist Nurse, Paediatrician, Social Worker, School Nurse or Education Statementing Officer or alternatively contact the Disability Register Coordinator:
Jonathan Kendrick
Disability Register Coordinator
Cyfle, Barnardo's Cymru
Henllan Centre
Henllan
Denbighshire
LL16 5YA
Tel: 01745 817216 / 443129