Further Information

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 9th edition (2013) 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 Do You Want Me To Talk To You? Recognising the Challenges in Communicating with Children with Exceptional Healthcare Needs

How Does it Feel? Acknowledging the Emotional Impact of Tube Feeding

Early support and early expectations when your child has complex needs