Resources and useful links
Care Pathway for the Unborn Child, Neonate or Infant Diagnosed with potentially Life-limiting or Life-threatening Conditions
National Children’s Bureau
The National Council for Palliative Care
Support and information to parents caring for a child with any disability or special need.
Provide 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.
The leading charity supporting hospice care throughout the UK.
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, and their families, who are not expected to reach adulthood.
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.