Together for Short Lives
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We welcome the progress that planners, funders and providers have made in making sure that children, young people and their families in Scotland can access the palliative care they need, where they need it. This includes the Scottish Government’s commitment develop and publish a new national strategy for palliative and end of life care and sustainable funding of at least £7 million per year through Children’s Hospices Across Scotland (CHAS).

There are more than 16,700 babies, children and young people (aged 0-21) across Scotland who may die from a life-shortening condition. In Scotland there is a single-national provider of children’s hospice care, with CHAS working across hospices, hospitals and children’s homes. CHAS funds joint specialist teams in all the children’s hospitals in Scotland (Aberdeen, Glasgow and Edinburgh).

SCYPPEx developed ‘A Framework for the Delivery of Palliative Care for Children and Young People in Scotland’. This was published in November 2012 by the Scottish Government with CEL 37 (2012), a directive to NHS Boards in Scotland.

In 2015, the Scottish Government published a new Strategic Framework for Action for Palliative and End of Life Care. In 2016, Together for Short Lives welcomed the announcement that the Scottish Government committed £30 million funding for CHAS as part of increased investment in children’s palliative care for the period 2016-21. The funding has provided approximately half of the agreed running costs of running CHAS.

Despite this progress, challenges remain. In its manifesto document ahead of the 2022 Scottish Parliamentary elections, CHAS highlighted that not all families in Scotland are equally able to access consistent 24/7 support for end of life care at home, if they choose it. Some NHS boards in Scotland are able to consistently offer this service. In NHS Ayrshire and Arran, the Paediatric Supportive Care Team was put in place specifically to address this issue. The team provides round the clock out of hours medical and nursing support to families in their chosen place of care.

It is not currently possible to train in paediatric palliative medicine Scotland. Those wanting to do so currently have to apply to training programmes in England or Wales. Similarly, it is no longer possible to study for a community children’s nursing (CCN) qualification in Scotland. Some nurses are having to piece together modules from other courses, or are receiving local training which does not carry a qualification.

CHAS also highlighted other challenges facing families in Scotland in:

  • accessing social care
  • managing the financial impact of caring for a seriously ill child
  • accessing toilets that meet their needs
  • ensuring smooth transitions between children’s and adult services – and access to age and developmentally appropriate care
  • access to bereavement support.

Together for Short Lives is pleased that in its programme for 2021/22, the Scottish Government states:

“To provide the very highest standards of care right up to the end of life, we will ensure that everyone who needs it can access seamless, timely and high‑quality palliative care. Over the coming year, we will develop and publish a new national strategy for palliative and end of life care that takes a whole system, public health approach. And we will ensure provision of high‑quality child palliative care, regardless of location, supported by sustainable funding of at least £7 million per year through Children’s Hospices Across Scotland.”

Building on this, we join CHAS in calling on the Scottish Government to:

  1. Make sure that the new national plan for palliative care in Scotland addresses the needs of children and young people.
  2. Introduce more specialist training for health and social care staff, to meet increasingly complex needs.
  3. Provide bespoke support for children living into adulthood.
  4. Provide better financial support for struggling families, including after a child dies.
Policy and influencing