Report highlights increased numbers of children and young people with life-limiting conditions in Scotland

Categories: Research.

The major report from the University of York, commissioned by the Managed Service Network for Children and Young People with Cancer (MSNCYPC) and Children’s Hospice Association Scotland (CHAS), was launched yesterday by Shona Robison, Cabinet Secretary for Health, Wellbeing and Sport.

In 2013/14 there were 6,661 under 25s in Scotland with a life-limiting condition, compared to 4,334 an decade earlier.

The increase is attributed to a number of factors, including advances in medicine which have enabled many children to live longer than would have previously been expected.

In addition to quantifying the need for palliative care in Scotland, the report – which is entitled ‘Children in Scotland requiring palliative care: identifying numbers and needs’ (ChiSP) – makes 10 recommendations for improving palliative care for children and young people in the country.

Recommendations for improvement

Among these are calls for children under one year of age to be seen as a priority group and for age-specific palliative care services to be developed for 16-25 year olds with a life-limiting condition.

Enabling greater access to palliative care services is a recurring theme throughout the report, with the provision of culturally competent care to children and young people from all ethnic groups and to those in deprived areas being specific places where improvements could be made.

Other recommendations focused on “a detailed review of existing international evidence on children and young people’s, parents’ and siblings’ accounts of living with a life-limiting or life-threatening condition, and their perceived psychosocial support needs.”

These included making psychological and emotional care available to all family members and encouraging service providers to examine current practices regarding parents’ psychosocial needs at the end of their child’s life.

Dr Pat Carragher, medical director at Children’s Hospice Association Scotland (CHAS), welcomed the report.

CHAS is the only charity providing hospice services to children and young people and their families in Scotland; it runs two children’s hospices – at Rachel House in Kinross and Robin House in Balloch – and a hospice at home service.

“Scotland is recognised as providing world-leading palliative care and this report gives us much-needed evidence on the numbers of babies, children and young people in Scotland who need to access that support,” Carragher said.

“It includes vital information on where they live, their ages and underlying conditions, and that the number has increased by 50% in the last 10 years.

“We know the difference palliative care can make to families who are facing the most challenging of times, but clearly not every family is accessing this care.

“Nonetheless, the overall numbers of the under 25s with life-shortening conditions continue to increase, and this report helps us to identify how care can be offered to families where and when they need it, in terms of identifying their numbers, ages, underlying conditions, and by health board area.

“We remain committed to working with the Scottish Government, NHS and other care professionals in further developing exemplar palliative care services for this age group.”

A society is measured by how it treats its most vulnerable members

Carragher’s sentiments were shared by Barbara Gelb, chief executive of Together for Short Lives, which advocates on behalf of children with life-limiting and life-threatening illnesses across the UK.

“The figures in the report indicate that the number of children and young people with life-shortening conditions is much higher than previously understood,” she said.

“This has significant implications for those planning, funding and delivering services across the UK and for governments in making sure that the palliative care needs of these children, and their families, is met.

“A society is measured by how it treats its most vulnerable members; we therefore call on the chancellor to take the opportunity to make sure the needs of children and young people are recognised in the comprehensive spending review and for government to work with the children’s palliative care sector to ensure the best quality of life and the best quality of death for those children with life-shortening conditions.”

Shona Robison MSP added: “We are absolutely committed to ensuring the best standard of treatment and care is available for all children and young people with palliative care needs. We will use these findings to inform the Scottish Government’s strategic framework for palliative and end of life care which is due to be published by the end of the year.”

The full report is available on the CHAS website.