ACT’s new Family Companion for parents who care for a life-limited child
CT has launched a new updated version of its popular booklet, A Family Companion to the ACT Care Pathway, which is now available free to family members of children with life-limiting and life-threatening conditions, and children’s palliative care professionals. To make this resource as accessible and as widely available as possible, ACT has produced the Family Companion in a range of different formats.
A Family Companion to the ACT Care Pathway is designed especially for family members of children with life-limiting and life-threatening conditions, to help guide them through the stages of their child’s care following diagnosis. It gives them useful information about what should happen, and what they are entitled to; empowering them to make decisions regarding their child’s care.
Funding from the Department of Health has enabled ACT to develop this resource and to offer a limited number of free printed copies to families and professionals*. Additionally anyone can now download a copy from the ACT website – www.act.org.uk/familycompanion
The resource has been updated for 2011, making it broader and relevant to more families, wherever they live. The new version also includes a more extensive ‘useful organisations’ section, building on the previous list of organisations that families can turn to for more specific support or advice.
The funding has also meant that A Family Companion is now available in various formats, to help ensure as many families as possible get a chance to access it:
Hard copy booklet
This is free to all family members. Children’s palliative care professionals can order a free copy to use with families, to help guide them through their child’s care journey. Organisations can now order up to ten copies at a time to have in stock to hand out to families, without the families having to order from ACT.
To order a free copy, email This email address is being protected from spambots. You need JavaScript enabled to view it., call ACT on 0117 916 6422 or download an order form from www.act.org.uk/familycompanion
Downloadable interactive PDF of full booklet
An interactive PDF of the booklet with linked contents page for ease of use, is now available to download from the ACT website www.act.org.uk/familycompanion
Separate downloadable PDFs for each stage of the ACT care pathway
Sometimes, families of children who have just been diagnosed may feel they are not ready to think about later stages of their child’s care, such as end of life planning. For this reason, we have also made A Family Companion available as five separate sections: Sharing significant news; planning for going home; a multi-agency assessment and care plan; an end of life care plan; and a separate directory including a glossary of terms, a list of professionals, and a list of useful organisations.
This will enable parents to digest information at their own pace, without feeling overwhelmed by what might happen in the future. Professionals can also download separate sections to give to parents if they feel the parents are not ready to start using the full version. Download all the sections separately at www.act.org.uk/familycompanion
