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Useful links

Other sources of information for healthcare professionals

National Children’s Bureau:

The National Council for Palliative Care:

Extra help and resources

Support and information to parents caring for a child with any disability or special need.
Lots of information about rare disorders and conditions and organise groups for parents to support each other.

DirectGov – Caring for Someone
A source of further information about public services and guidance for people with carer responsibilities.

Hospice UK
The leading charity supporting hospice care throughout the UK.

NHS Choices
A source of information about illnesses and conditions.

Sibs is the only UK charity representing the needs of siblings of disabled people.

Together for Short Lives
The UK voice for children and young people who are not expected to reach adulthood and their families.

TfSL Personal Budgets
A guide has been published by Together for Short Lives that sets out very clearly the background, descriptions and applications of personal budgets with some poignant examples as supporting evidence.

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