Family Companion
Together for Short Lives publishes A Family Companion to help parents and carers of children who have been diagnosed with life-limiting and life-threatening conditions.
It works as a step-by-step guide, helping you to navigate what can often be a complex and confusing process. You can order a copy or download a pdf straight from the TfSL website.
Family Factsheets
Together for Short Lives produces an excellent range of factsheets for families covering topics including:
Emotional support and counselling
Care planning in advance
Aids and equipment
Understanding siblings' needs
They are designed to give key information in easy to understand chunks. You can buy or download them from the TfSL website.
Symptom Control
Basic Symptom Control in Paediatric Palliative Care is a key clinical tool used by children’s palliative care doctors and nurses across the world. It is the only resource of its kind that provides comprehensive guidelines for treating a wide range of symptoms experienced by children with life-limiting or complex health conditions.
It’s been designed to provide both practical support and hands on clinical information in the acute setting. It’s also been written in language that parents can easily understand, as doctors and nursing staff who care for children in the community often leave a copy in the family home so it is on hand for reference.
Download a free copy of the new edition (2022) from the Together for Short Lives website.
CEN Resources
The Scottish CEN (Children with Exceptional Healthcare Needs) Network has produced a range of DVD resources, all available online. These include:
How Does it Feel? Acknowledging the Emotional Impact of Tube Feeding
Books to read to siblings
Here is a list of books that some of our SOFT families have suggested to help talk to your children about expecting and losing a baby with a life limiting condition, as well as living with a child with special needs:
“Our Baby Will Be Different” by Beverly Jacobson
“JamJam Can” by Serena Pascall
"We were gonna have a baby, but we had an angel instead" by Pat Schwiebert
"Always and Forever" by Debi Gliori and Alan Durant
"Tell me about Heaven Grandpa Rabbit!" by Jenny Album
"The Invisible String" by Patrice Karst
"A Travel Guide to Heaven for Kids" by Anthony DeStefano