Recommendations on how government, the NHS and professionals can improve care and support for these young people were presented to MPs and Peers at the All-Party Parliamentary Group (APPG) for Hospice and Palliative Care on Tuesday (27 November 2012).
The recommendations, aimed at making smoother the transfer of care from children’s to adult services, were part of a briefing paper on key initial findings from the STEPP Project.
The recommendations include a call for professionals to identify and work with young adults’ preferred ways of involving their parents in decision-making, and improving experiences of inpatient hospital care.
The 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.
Lizzie Chambers, development director at Together for Short Lives, said: “Today’s recommendations point the way to joined-up services which support young adults, 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.”
Heather Richardson, national clinical lead at Help the Hospices, said: “Our focus must now be on helping [young people] 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.”
Key issues identified by the study
- The work done in paediatrics to prepare the young person for the move to adult healthcare needs to be accompanied by appropriate, ‘young adult’ friendly services and practice within adult healthcare.
- Adult wards can be frightening and isolating environments for young people.
- The process of transferring from paediatrics to adult healthcare can delay advance care planning and planning for the management of medical crises or emergencies.
- Practitioners may not recognise or acknowledge that young adults 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 adults and their families.
- Adult services are concerned about the support needs of bereaved parents but are unsure how to address this need.
More information on the project, and the briefing paper, can be found on the Together for Short Lives website.