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Call for better support for seriously ill young people

News and comment

Today the All Party Parliamentary Group (APPG) for Hospice and Palliative Care heard how Government, the NHS and professionals can improve care and support to young people with life-limiting and life-threatening conditions. The recommendations put to the group were drawn from the findings of a major study, the STEPP Project (Supporting health transitions for young people with life-limiting conditions: researching Evidence of Positive Practice) into health transitions for this group of young people. Funded by the Big Lottery Fund, the STEPP Project was carried out by a research team based at the Social Policy Research Unit at the University of York. The APPG heard that, despite examples of good practice around the country, the care and support of young people with life-limiting conditions and their families can be compromised.

Advances in the treatments of many life-limiting conditions mean that children are living longer and many now survive into adulthood – the number of 16 to 19 year olds with life-limiting and life-threatening conditions has nearly doubled in the last decade. Managing the transfer of their health and other care needs to adult services is challenging. Adult services can also struggle to provide appropriate services for young people with life-limiting conditions.

These findings emerged as Together for Short Lives, in partnership with Help the Hospices and The National Council for Palliative Care, briefed MPs and Peers at Westminster on the evidence from the STEPP Project and the wider evidence base on young people with life-limiting conditions and transitions. A briefing paper, drawing on findings of the STEPP Project, makes a number of recommendations aimed at bringing about smoother transitions for young people. These include a call for professionals to identify and work with young people’s preferred ways of involving their parents in decision making, and improving experiences of in-patient hospital care. The briefing paper also highlights the need for the Government to ensure that its reforms to the NHS and social care in England do not further fragment transitions for young people.

Young Adult with carer

Issues identified by the study, and highlighted to the APPG, include:

  • The work done in paediatrics to prepare the young person for the move to adult health care needs to be accompanied by appropriate, ‘young adult’ friendly services and practice within adult health care
  • Adult wards can be frightening and isolating environments for young people
  • The process of transferring from paediatrics to adult health care can delay advance care planning and planning for the management of medical crises or emergencies
  • Practitioners may not recognise or acknowledge that young people may still want to involve their parents in decision making
  • Adult palliative care teams can be unwilling to take on young adult patients
  • Adult practitioners working in non-cancer specialisms may not be aware of the potential value of hospice services in supporting young people and their families
  • Adult services are concerned about the support needs of bereaved parents but are unsure how to address this need.

Children who need palliative care and their families will welcome the findings of this important study. Reaching adulthood should be a time for celebration, yet it is a milestone feared by many families of young people with life-threatening and life-limiting conditions. Today’s recommendations point the way to joined-up services which support young people, and those who care for and love them, to make the most of their lives. This study provides clear recommendations for Government and the NHS to embed good transitions for young people with palliative care needs in its reform of the health and social care system.

Lizzie Chambers, Development Director at Together for Short Lives

Simon Chapman, Director of Policy and Parliamentary Affairs for the National Council for Palliative Care commented:

“It is a cause for celebration that many young people with life-limiting conditions are now able to live for longer and are progressing into adulthood. However, this brings with it the challenge to ensure that their transition from children’s services to adult services is well co-ordinated and smooth, and that it is not left until they are approaching their 18th birthday before they are involved in discussions about plans for their care as an adult.” 

Heather Richardson, National Clinical Lead at Help the Hospices, said:

“The transition from teenage years into adulthood is often a difficult time, but a life-limiting illness will undoubtedly complicate the normal challenges that young people face, such as gaining independence, starting and maintaining relationships, and accessing education and employment.

“Our focus must now be on helping them to live well by providing care and support that addresses their individual wishes and needs, and hospice care can help make this happen. However as today’s recommendations show, this will only be achieved if there is more innovation, joined up working between commissioners and providers, and engagement with a variety of other services.”

Download the APPG key findings paper

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