York report recommends enhanced care for under 25s with life-limiting conditions

Posted on 4 November 2015

The number of babies, children and young people in Scotland with life-limiting conditions is rising and an increase in palliative care services is required to meet their needs, according to a new study by University of York researchers.

Dr Lorna Fraser, of the Department of Health Sciences, and Professor Bryony Beresford, of the Social Policy Research Unit at York, led the research which assessed the numbers of children and young people with life-limiting conditions in Scotland and their families’ psychosocial care and support needs.

Shona Robison, Cabinet Secretary for Health, Wellbeing and Sport, launched the report Children in Scotland requiring Palliative Care (ChiSP). It was funded by the Managed Service Network for Children and Young People with Cancer and Children's Hospice Association Scotland (CHAS).

The report shows that in Scotland in 2013/14 there were 6,661 under 25s with a life-shortening condition, compared with 4,334 in 2003/4. The increase is due to a range of factors including medical advances with many children now living longer than previously. The study also highlights the need for improved awareness, and availability of palliative care services for under 25s.

The report recommends where further improvements are needed across the healthcare and social care sectors, including:

The highest prevalence is in the under ones and that they should be a priority group for improved palliative care provision
Future development of palliative care services should ensure that services for babies, children and young people from areas of deprivation are prioritised, as there is a higher prevalence of life-shortening conditions for those living in the most deprived areas
Age specific palliative services should be developed for the 16-25 age group, as their needs are different from children and older adults with a life-shortening condition
Specialist psychological and emotional care for all family members.

Dr Fraser said: “On the basis of the findings of this study, we have made ten high level recommendations. We hope this report, and its recommendations, will prove a useful resource for Children’s Hospice Association Scotland, and other palliative care services in Scotland, as they seek to build on and develop the provision and practices already in place.”

Notes to editors:

The ChiSP report www.chas.org.uk was undertaken by Dr Lorna Fraser and Professor Bryony Beresford from the University of York.
The findings were drawn from healthcare and administrative data, as well as a review of existing research from children, young people, parents and siblings.
The research also shows that there are approximately 200 deaths each year among 0-25 year olds who have a life-shortening condition, with CHAS offering services to approximately 60 of these.
The evidence also highlights that families benefit when they are supported by healthcare staff to have choices at the end of their child’s life, including whether they should die at home, hospital, or in a hospice.
For more information about the Department of Health Sciences, please visit http://www.york.ac.uk/healthsciences/
For more information about the Social Policy Research Unit, please visit http://york.ac.uk/spru.