Transition

A growing number of children and young adults with life-limiting and life-threatening conditions are now living into adulthood. These individuals and their families often find themselves caught between children’s and adult palliative care services. While there are examples of excellent practice, there is still limited availability of appropriate services for young people.

NCPC, Together for Short Lives and Help the Hospices set up a Transition Partnership. Together we are looking at the specific challenges of transition between children’s and adult services. The partnership is working to improve understanding of transition and development of services.

We are:

• Overseeing the STEPP project, Supporting Health Transitions for Young People with Life-limiting Conditions: Researching Positive Practice. The project aims to develop an evidence-based resource which will support the implementation and embedding of good practice for young people and young adults with life-limiting conditions within health services and is being carried out by the Social Policy Research Unit at the University of York. It is funded by the Big Lottery Research Programme.
• Supporting the rollout of ACT’s Transition Care Pathway across the SHAs. This pathway focuses on three key sections: recognising young people’s need to move on to adult services; moving on and end-of-life.
• Providing a forum for informing and influencing policy and practice.

The Partnership held a national conference in 2009 to consider some of the challenges of transition between services. More information about the conference and copies of the presentations are available on Help the Hospices’ website here.

For more background information, you may like to read the newsletters:

Issue 1 | Issue 2 | Issue 3 

June 2012 transitions event

We were delighted to join with Marie Curie Cancer Care, Together for Short Lives and Help the Hospices to host an innovative event on transition of young people from children’s to adult palliative care services, facilitated by Public Service Works.

The event, which took place on 28^th June at the Oval cricket ground, was an opportunity to reflect on the progress made to date on improving transition through health, social care, education and other services, and identify ways of better supporting younger people going forward.

The Care Services Minister Paul Burstow MP welcomed the new report Don’t Let Me Down launched by Marie Curie Cancer Care and supported by NCPC, Together for Short Lives and Help the Hospices, which makes a number of local and national recommendations.

The event also was an opportunity for young people, their families and professionals to talk about end of life care and dying.

Initial key findings from STEPP Project launched at November 2012 meeting of the All Party Parliamentary Group on Hospice & Palliative Care

The All Party Parliamentary Group (APPG) on Hospice & Palliative Care met on the 27^th November for a lively discussion of the journey of young people with palliative care needs from children’s to adult’s health and care services.

The discussion was framed and informed by the initial headline findings from the STEPP project. NCPC, Together for Short Lives and Help the Hospices put together a  briefing paper, drawing on findings of the STEPP Project, to make 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 highlighted 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. 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.

There was a consensus at the meeting that urgent action by decision-makers and providers alike was needed to support the growing number of young people living longer with life-limiting/threatening conditions and, as a result, transitioning from childrens to adult services.

To read more about this meeting, please click here.

To view a copy of the brieding on the STEPP project findings, please click here.