ACT - The Association for Children's Palliative Care

An estimated 6,000 to 10,000 young people live with a terminal illness or life-threatening condition[1], and many know that they will face a premature death during their teenage years.  Their journey through adolescence into adulthood is compounded by facing a complex and often bewildering transition from children’s palliative care to adult services.

To support this difficult and complex process known as “transition”, ACT, the national charity for children’s palliative care, has developed a groundbreaking resource to guide and support young people, families and professionals through the transition maze and help services to better support young people to adjust to, prepare for, and move-on to adult services.

The new resource, The Transition Care Pathway, also emphasises the importance of empowering young people to take control of their lives as they enter their teenage years, and calls for an early collaboration of paediatric and adult services to improve the transition process.

Endorsed by the Department of Health and Royal College of Nursing, The Transition Care Pathway, is launched by Ivan Lewis, MP, Parliamentary Under Secretary of State for Health in London on Tuesday, 17^th April 2007, at ACT's national conference: Transition: Onwards and Upwards.

Ivan Lewis, MP, Parliamentary Under Secretary of State for Health said: “I applaud ACT's pioneering work in developing this essential resource and am delighted to offer my endorsement, and urge service providers across children's and adult palliative care, and all other statutory and voluntary agencies involved, to adopt this essential transition framework.”

ACT’s Transition Care Pathway has been developed in consultation with a diverse group of children and young people who shared their experiences of transition, as well as and the challenges they face as they become young adults.
 

The Transition Care Pathway provides an easy to use, clear framework for young people, families and professionals to help them plan for and move on from children’s palliative care services to adult services, and guides the reader through each stage of the process, providing a clear template modelled around six standards. It focuses on three key sections: recognising the 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.  The Transition Care Pathway concludes with an “end-of-life” pathway, 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, Chief Executive of ACT added:

“Sadly too many young people with life-limiting conditions still have a negative experience of making the break from children’s to adult services. Many tell us that there is virtually nothing just for them; they say, “you’re either a child or an adult, teenagers don’t count.” And that their experience of transition is often unplanned. More alarmingly, as more children with life-limiting conditions are living longer, many teenagers feel that they are not supported, and there are few specialist services for them as they are not “meant to be alive.”

“ACT hopes that this transition care pathway 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.”

The ACT conference will also launch a trailer for a groundbreaking DVD resource -  “Talk about change”, made by young people living with life-limiting conditions, and developed by award-winning filmmakers, The Kosh, in partnership with ACT.  “Talk about change” is funded by BBC Children in Need.

“Talk about change”  is designed to raise awareness of the challenges young people face as they approach transition and become young adults. Young people speak out about their hopes and fears as they begin their journey into independence and adulthood and talk openly about both the excitement and new challenges that lay ahead, as well as their frustrations and fears. You can download a trailer by visiting www.talkaboutchange.co.uk

The Transition Care Pathway: A Framework for the Development of Integrated Multi-Agency Care Pathways for Young People with Life-threatening and Life-limiting Conditions is published by ACT and funded by the True Colours Trust. You can purchase a copy, price £10.00  by  calling ACT on 0117 922 1556. You can also download a PDF here.

The Transition Care Pathway:  Executive Summary

ACT estimates that between 6,000 and 10,000 young people live with life-limiting or life-threatening conditions. As they approach adulthood these young people will need to make the complex and often bewildering transition from children’s palliative care to adult services.
  
ACT’s new Transition Care Pathway  provides an easy to use, clear framework to help young people, families and professionals adjust to, prepare for and move-on to adult services. It emphasises the importance of empowering young people to take control of their lives, and calls for an early collaboration of paediatric and adult services to improve transition.  The Transition Care Pathway includes a clear template; modelled around six standards, each with key goals to guide you through the transition process.

As many young people's journey to adult services will also coincide with a decline in their condition, ACT’s Transition Care Pathway concludes with an “end-of-life” pathway, 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.
 

Background to developing the Transition Care Pathway

• This transition pathway was developed in response to the growing evidence of the unmet needs and growing numbers of young people living with a life-limiting condition into adult years.    There is growing evidence of the poor outcomes for young people with complex and life-limiting conditions.

• ACT published a Multi-Agency Care Pathway for Life-limited Children in 2004, which set out a template for those working with all life-limited or life-threatened children in all settings.   This transition pathway has been developed to complement this original pathway for children and can be used to link young people and families with all services in one joined up planning process.

• The process used in developing this pathway was similar to that used in the creation of the first care pathway.  A working party was set up of representatives from both adult and children’s services to develop the structure of the pathway and provide the content material.   The pathway was divided into three sections:  recognition of the need to move on; moving on; and end-of-life.    Three chairs were appointed for each of these sections; working group members were allocated to one of these sections and there was an overall chair of the whole working group.   A first draft of the transition pathway was developed and this was sent out for consultation to a wide group of experts, parents and young people for comment.  

• It was felt very important to involve young people in the development of this pathway and a series of focus groups were facilitated.   At these focus groups issues were raised and personal experiences were described of growing up with a life-limiting condition.    This pathway contains many of the quotes and ideas that arose from these focus groups.

• Along with this pathway document a DVD called “talk about change” is being produced, in conjunction with the Kosh (a film production company), to provide first-hand real stories from young people of the issues that matter to them.

The Transition Care Pathway 

• The document provides a template to develop local care pathways based on local need and local service capacity.   The planning of local pathways can be effectively undertaken by local strategic level networks as the process will inevitably involve close co-operation and co-ordination between professionals from both adult and children’s services.

• The document provides a template to develop local care pathways based on local need and local service capacity.   The planning of local pathways can be effectively undertaken by local strategic level networks as the process will inevitably involve close co-operation and co-ordination between professionals from both adult and children’s services.

• The template sets out six sentinel standards that should be developed as a minimum, with the aim of achieving equity for all young people and families, wherever they live.  The template should also be helpful to young people and families so that they can clearly identify the stages along their journey and the points at which this care could be better planned or co-ordinated.

• A series of key goals have been set out within each of the six sentinel standards.   These goals can be used across agencies within paediatric and adult services to work towards achieving them.

• It is acknowledged that there is wide variation in the availability of services across the country.   In particular access to short break care that is appropriate for young people and to 24-hour hour cover in the home is patchy.   The pathway and its standards aim to facilitate better planning for improving provision of these services.

• There is a key shift in the approach that is recommended in the pathway, from family-centred care to young person-centred care.   The needs and wishes of young people should be central to the planning process, whilst also acknowledging the support and emotional needs of families.  Young people should be empowered to take part in the planning of their care.

• A vital component of the transition pathway is to ensure that there is good co-ordination of the transition process between paediatric and adult services.   This pathway recommends a new key worker designate role within adult services to gradually take over the child’s key worker role so to ensure smooth transition.

• In the past ACT has recommended good co-ordination between professionals through multi-disciplinary/inter-disciplinary working.   Within adult services, the term “inter-disciplinary” is frequently used.  Inter-disciplinarity is typical of palliative care which has a holistic approach with different disciplines cross-working and professionals willing to hand over to a colleague for their particular expertise.  This pathway recommends that multi-disciplinary as well as an inter-disciplinary approaches are taken at different points in the pathway.

• ACT’s report Palliative Care for Young People, aged 13-24 estimated that there were between 6,000 and10, 000 young people living with life-limiting or life-threatening conditions.  This figure had been extrapolated all major research studies that had been undertaken at that time.   At the time of going to press, new statistics were being produced by the Department of Health that indicated a significant increase in the numbers of children with life-limiting or life-threatening conditions, with the prevalence figure rising from 1.2 per 10,000 to 1.6 per 10,000 that has been suggested by ACT.  It has yet to be identified how many of these will be in the 13-24 age group.