General (Not Condition Specific)
Fussy Eaters and Long Term Conditions Booklet
This site was created for young people, carers and professionals to pool together lots of helpful resources from across the internet that are available to help support mental health and well-being.
The Sick Children's Trust
The Sick Children's Trust Website
The Sick Children's Trust help to give families one less thing to worry about by giving them a place to stay, free of charge just minutes from their child’s bedside.
Tree of Hope
Tree of Hope Website
Tree of Hope is the crowdfunding charity that helps children and young people with a disability or illness by supporting their families to raise the money they need to pay for specialist care that is not freely available through the UK healthcare system.
Make A Wish
Make A Wish Website
A child living with a critical illnesses can be referred to Make-A-Wish by healthcare professionals, their family, social workers or they can even refer themselves – that’s when their Wish Journey begins.
Starlight Children's Foundation
Starlight Children's Foundation Website
Dedicated to supporting children with a chronic illness with the medical and emotional challenges they face on a daily basis. They have developed resources for kids with diabetes, asthma, and cystic fibrosis and other conditions, and their families. They also run a social networking site for teens with chronic and life-threatening illnesses and their siblings.
Book - Extreme parenting: parenting your child with a chronic illness by Sharon Dempsey
The book provides an in depth understanding of the path through chronic illness, illustrating the obvious effects on the child, but also the parents, siblings and the family as a whole across the spectrum from the psychological and social to the physical.
Book - Helping your child with A Physical Health Condition by Mandy Bryon & Penny Titman
Written by experts in childhood illness, this step-by-step guide is for any parent who feels isolated or lacking in support. This book can help with Emotional support for managing difference and dealing with difficult behaviour, practical suggestions for easing hospital anxiety or navigating feeding problems, Advice on what to say and when to your child about their illness and how to ensure you don't neglect yourself or the rest of your family.