£350,000 awarded to improve services for young people facing premature death

National children’s palliative care charity ACT (Association for Children’s Palliative Care) has been awarded over £350,000 to help children and young people, whose lives are shortened by complex health conditions, to prepare for the transition from children’s to adult’s palliative care services.

This three-year funding, awarded by The True Colours Trust, will enable ACT, along with partner organisations: ACH (Association of Children’s Hospices), Help the Hospices and the National Council for Palliative Care, to roll out a ‘Transition Care Pathway’ to all statutory health authority areas across the UK. It’s hoped that this Transition Care Pathway project will encourage agencies to prepare and plan for young people’s transition to adult palliative care services, lead to the development of more dedicated services for young people, and improve their experience of and their journey through the transition maze.

Advancements in the understanding and treatment of children with these conditions means that more young people are living longer, and there is a growing need for more dedicated and specialist services to support them. For example life expectancy for Cystic Fibrosis has doubled in the last 20 years, and life expectancy for Duchenne Muscular Dystrophy has increased from 14.4 years in the 1960s to over 25 years. Lizzie Chambers, Chief Executive of ACT said:

“Young people tell us that transition feels like falling off a cliff, and many suddenly feel abandoned, and plunged into a very alien adult world with little preparation or support.

They say, ‘you’re either a child or an adult, teenagers don’t count.’  More alarmingly, as some of these children are living longer, many teenagers say that there’s nothing for them as they are not ‘meant to be alive’.”

New Consultant Transition Co-ordinators

This funding will support 12 new transition workers across England, Scotland, Wales and Northern Ireland who will work with both children’s and adult palliative care networks, encouraging them to sign-up to the Transition Care Pathway, and helping services to develop the skills, networks and resources to improve young people’s experiences. ACT has now launched the recruitment process for these posts, and it’s anticipated that the project will go live in April when people are in post.

Details of how to apply for these Consultant Transition Co-ordinator jobs can be found on the ACT website – www.act.org.uk/content/blogsection/7/131/

or you can call 0117 922 1556 and request a job pack.
ACT has a UK website www.act.org.uk, and manages the International Children’s Palliative Care Network website www.icpcn.org.uk