Together for Short Lives
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Together for Short Lives is an active member of the strategic planning group, the Scottish Children’s and Young People’s Palliative Care Executive (SCYPPEx). SCYPPEx draws together individuals and organisations who can influence how children’s palliative care is planned and provided in Scotland.

Its members include:

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. Implementing the framework would lead to a better, more integrated and responsive experience for children with life-threatening and life-limiting conditions and their families. Therefore, it is a vital step, and we are keen for NHS Boards to prioritise its implementation.

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 has committed £30 million funding for CHAS as part of increased investment in children’s palliative care over the next five years. The funding, which will commence in 2017/18, will provide approximately half of the agreed running costs of running CHAS.

The additional funding announcement followed research that showed a 50% increase in the number of babies, children and young people who could benefit from palliative care in the past 10 years. This funding will enable CHAS to develop their outstanding services and to reach more of the children and families identified through the research that could benefit from their care and support.

This followed the publication in 2015 of research funded by the Scottish Government and commissioned by CHAS which identified the number of babies, children and young people with life shortening conditions in Scotland. This research, ‘Children in Scotland with Palliative Care Needs’ (ChiSP), showed that there are 15,404 babies, children and young people in Scotland with palliative care needs, much higher than previously thought. The study also showed that two thirds of babies, children and young people who die each year in Scotland do so without access to specialist palliative support.

Following the release of the study, CHAS successfully secured cross-party support for parity of funding between children’s and adult palliative care services and this resulted in the Scottish Government’s commitment of £30 million over the next five years.

CHAS is now working with the Scottish Government to agree the framework that will deliver the increased funding over the next five years. CHAS is also developing its new CHAS Plan, its strategy for 2017-2020, and the statutory funding will allow CHAS to deliver many of the commitments set out in the plan.

The increased statutory funding will help CHAS achieve its goal of reaching every family in Scotland who needs its care, as set out in the CHAS Plan. CHAS will continue to work in partnership with the Scottish Government, health and social care colleagues and other key stakeholders across Scotland to support and promote the further development of holistic palliative care for the 0–25 age group.

Policy and influencing