Together for Short Lives
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There are 1,000 children in Wales with life-limiting or life-threatening conditions.

The National Institute for Health and Care Excellence (NICE) has published a clinical guideline ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’. NICE calculates that if the Welsh Government invested £690,000 in implementing the guidance, non-cash savings worth £1.9million would be released back into the NHS in Wales.

In Wales, Together for Short Lives welcomes the progress in implementing the Welsh Government’s End of Life Care Delivery Plan. We ask that Welsh ministers now take the following action to realise the ambitions set out in Together for Short Lives’ policy priorities for the Welsh Government, which we set out before the 2015 Assembly election:

  1. Parity for children who need palliative care: put children’s palliative care on an equal footing with the adult specialty, strengthening representation of children’s needs on the End of Life Board by establishing the authority of the Paediatric Palliative Care Implementation Group through effective resourcing and a mandate by the Cabinet Secretary for Health and Sport.
  2. A plan for children’s palliative care: develop a Paediatric Palliative Care Implementation Plan based on the recommendations from ‘The Sugar Report’.
  3. Care today and tomorrow: make sure that there is a sustainable children’s palliative care workforce in Wales, including further support for North Wales.
  4. Giving young people dignity and respect – bridging the cliff edge in care between children’s and adult services: support joint working between children’s and adult services so that both are actively involved in developing plans for children transitioning into adult services and plans for end of life care in the home.
  5. Better communication: promote collaboration and improved communication within the children’s palliative care sector.
  6. Measuring impact: measure the extent to which outcomes improve for children and young people with life-limiting and life-threatening conditions as well as those for older adults. We would like the Welsh Government to form a taskforce with professionals from the children’s palliative care sector, which will identify a meaningful set of outcome measures, including the proportion of children with life-shortening conditions that use the all-Wales Paediatric Advance Care Plan. We would like Welsh ministers to collect and publish data for specific age groups.
  7. Care around the clock: strengthen the 24/7 specialist telephone advice service so that timely and readily accessible advice can be provided to healthcare professionals for symptom control.
  8. Invest in short lives: make sure that local health boards and local authorities fund children’s palliative care fairly and sustainably.
Policy and influencing