Family Companion to the ACT care pathway
ACT has developed this resource especially for family members of children who have been diagnosed with a health condition that means they may not live to reach adulthood
The ACT Family Companion provides you with clear, accessible information to help you understand what should happen at each stage along your child’s care journey – what you can expect from professionals, what you are entitled to and what choices you have. It mirrors the care pathway that professionals will be working through, and addresses the issues that matter to you as parents and family members, from your point of view.
Although each child’s care journey is unique, there are key stages that most children and families will experience, and each of these stages is set out and explained in a colour coded chapter, for ease of use. These common stages of a care pathway are:
• breaking the news
• planning for going home
• assessment of your family’s needs
• care plan for your child and family
• end of life plan.
As well as explaining what should happen at each of these stages, this resource makes it clear what support should be made available to you at each stage, and where that support can be found.
The Family Companion has interactive elements such as check lists and spaces to write down thoughts and ideas, as well as coloured boxes containing bite sized chunks of information and points to consider, to help you reflect and think about what you might want to happen at different points throughout the care pathway.
At the back, there’s also a directory of useful organisations, a list of professionals who may be involved with the care of your child, and a glossary of terms which can act as a handy reference tool when something has been mentioned you don’t quite understand, or when you’re looking for a source of advice or support on a certain subject.
The ACT Family Companion will help you understand what’s going on and what you are entitled to, allowing you to stay in control of your child’s care.
Virginia Prifti, whose son died in 2007 said, “I wish we had been given a Family Companion when Lawrence was diagnosed with his condition. It would have shown us who we could have expected to be involved in our case, and what their roles were. It would have given us a better idea of what to expect along the way, and would have given us the confidence to ask questions if we weren’t getting the level of care outlined in the booklet”.
Email: Susannah Woodhead
Tel: 0117 916 6422
ACT Helpline 0845 108 2201