Together for Short Lives
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There are 1,000 children in Wales with life-limiting or life-threatening conditions. Much progress has been made implementing the Welsh Government’s End of Life Care Delivery Plan for children, young people and their families. However, the way in which children’s hospices in Wales are funded by the state is patchy and unsustainable. The extent to which seriously ill children and young people can choose to receive palliative care at home, including at the end of their lives, depends on where they live. It’s vital that the next Welsh Government takes action to address these challenges.

The organisations that provide hospice care to children and young people in Wales and their families are funded neither equitably nor sustainably. Tŷ Hafan and Tŷ Gobaith children’s hospices receive a total of £700,000 per year from local health boards in Wales. This represents under 10% of the combined charitable expenditure they incur in proving hospice care to children and families in Wales. This funding means that children’s hospices in Wales currently receive the poorest levels of statutory funding across the UK. Children’s hospices in England receive 21% of their funding from the UK Government – more than double the amount of government funding received by children’s hospices in Wales. In addition, Northern Ireland’s children’s hospices receive 25% of their funding from the government.

Ahead of the 2021 Senedd elections, we join Tŷ Hafan and Tŷ Gobaith in calling for a new sustainable ‘Lifeline Fund’ for children’s hospices in Wales and for funding parity with the rest of the UK. Tŷ Hafan and Tŷ Gobaith’s propose to move towards a sustainable model of funding that is more aligned with Children’s Hospice charities in other UK nations. This funding would give the children’s hospices in Wales confidence to sustain and expand our services to better meet the need of all.

The extent to which seriously ill children and young people can choose to receive palliative care at home, including at the end of their lives, depends in large part on whether they can access community children’s nursing 24 hours a day, seven days a week. Community children’s nursing can be provided by the NHS, children’s hospice at home teams, hospital outreach teams or a combination.

Worryingly, there are too few community children’s nurses (CCNs) in Wales with the skills and experience needed to provide palliative care to children and young people. In 2021 we calculated that the current shortfall in CCNs stands at 240. This means that too many children and families are missing out on the care and support they need, when and where they need it. It also means that too many seriously ill children need unplanned, prolonged emergency hospital admissions, when their needs could potentially have been met at home. As a result, the NHS is failing to achieve non-cash savings in the resources it spends on these children and their families.

In 2018, the Cross-Party Group for Hospices and Palliative Care published a report following its inquiry into the inequalities in access to hospice and palliative care in Wales. The report highlighted the shortage of CCNs in Wales and the variation in the number and skills of CCNs across local areas. It recommended that the End of Life Care Implementation Board should develop a robust action plan to address shortages in community nursing for both children and young people, and adults with palliative care need. The report found that children and young people with life-limiting conditions should have the same choices about preferred place of care and/or death as adults at the end of life. For this to happen, the variation in numbers and skills of CCNs would need to be addressed to enable the delivery of end of life care for children in their own homes.

Together for Short Lives estimates that 240 additional community children’s nurses (CCNs) are needed to provide a holistic community children’s nursing service in Wales. This has been calculated using the current number of CCNs (43) and the number estimated to be needed using recommendations from the Royal College of Nursing. In an area with a child population of 50,000, a minimum of 20 Whole Time Equivalent (WTE) community children’s nurses are required to provide a holistic community children’s nursing service (283 CCNs needed in total across Wales).

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.

We ask that the Welsh Government:

  1. Provides equitable and sustainable funding to the organisations that provide hospice care to children and young people in Wales and their families.
  2. Takes steps to ensure that all children in Wales who need palliative care, including babies, can access community children’s nurses 24/7. These services can be provided by NHS children’s community nursing teams, hospice at home teams, hospital outreach teams, or a combination. To do this, these services would need to be sustainably planned and funded by local health boards.
  3. Act to make sure that there are enough children’s nurses with the skills, knowledge and experience needed to provide palliative care to children in the community.
Policy and influencing