ACT - The Association for Children's Palliative Care

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.

The ACT Transition Care Pathway project aims to help an estimated 6,000 to 10,000 young people who live with a life-limiting or life-threatening condition.

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.

ACT says that there are very still few services available to support life-limited children as they become young adults, and planning for transition is poor. What’s more, adult services typically do not have the specialist knowledge of conditions that have traditionally been dealt with by paediatric consultants, and many don’t have the tools, staff skills or resources to support transition.

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’.”

This funding will support 12 new transition posts 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.

The transition care pathway approach to care was developed by UK charity ACT, and provides a template that enables the needs of young people and their families to be taken as the central framework around which paediatric and adult services can be planned.  The pathway focuses on three key sections: recognising young people’s need to move on to adult services; moving on and end-of-life.   

For many young people, transition into adult services often coincides with a rapid decline of their condition and eventual death so the pathway concludes with an “end-of-life” stage, to help young people, carers and professionals to prepare for the young person’s death.  It aims to help young people prepare to die with dignity and for the family to have a positive memory of their life, dying and death.

Lizzie Chambers, added: “We hope that our transition care pathway project will be a real catalyst for change and will help all young people and their families get the support and help they desperately need as they plan for their future.”