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. We join Children’s Hospices Across Scotland (CHAS) in calling on the next Scottish Government to continue sustainable funding for children’s hospice care over the next five years – and develop a new national plan for palliative care in Scotland that addresses the needs of children.

There are more than 16,700 babies, children and young people (aged 0-21) across Scotland who may die from a life-shortening condition.

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. CHAS highlights 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. In Lothian, CHAS and NHS board provide the Care 24 Lothian service together, enabling children and their families access to specialist end of life care in their own home.

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 highlight 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.

We join CHAS in calling on the next Scottish Government to:

  1. Continue sustainable funding for children’s hospice care in Scotland over the next five years.
  2. Develop a new national plan for palliative care in Scotland that addresses the needs of children.
  3. Introduce more specialist training for health and social care staff, to meet increasingly complex needs.
  4. Provide bespoke support for children living into adulthood.
  5. Provide better financial support for struggling families, including after a child dies.
Policy and influencing