Wales

Much progress has been made implementing the Welsh Government’s End of Life Care Delivery Plan for children, young people and their families, including the Welsh Government’s proposed £888,000 per year increase in funding for Wales’ children’s hospices, Tŷ Hafan and Tŷ Gobaith. However, 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 Welsh Government takes action to address these challenges.

In June 2023, Tŷ Hafan and Tŷ Gobaith launched a ground-breaking new report which explores trends within the population of children with life-limiting conditions in Wales in the decade from 2009 to 2019.

The Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019 Report is the first piece of published research ever undertaken to look specifically at the trends within the population of children with life-limiting conditions in Wales.

Key findings of the report include:

• 1 in every 172 under 18s living in Wales has a life-limiting condition.
• The number of children living with life-limiting conditions in Wales rose by almost 25% between 2009 and 2019.
• The number of young people aged between 0 and 26-years-old living with life-limiting conditions in Wales between 2009 and 2019 rose by almost 33%.
• More than 50% of all deaths of children in Wales between 2009 and 2019 were deaths of children with life-limiting conditions.

Ahead of the 2021 Senedd elections, we joined 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 proposed to move towards a sustainable model of funding that is more aligned with Children’s Hospice charities in other UK nations.

We therefore joined Tŷ Hafan and Tŷ Gobaith in welcoming the Welsh Government’s proposed £888,000 per year increase in funding for Wales’ children’s hospices. This is the first time additional statutory funding has been made available to Wales’ two children’s hospices since 2007. The children’s hospices will receive around 21 per cent of the costs of providing palliative care to children and families in Wales.

The good news was announced by Minister for Health and Social Services, Eluned Morgan MS, during an oral statement in the Senedd on Tuesday 25 January. The hospices have also welcomed the decision to distribute this additional funding via the NHS Collaborative, ensuring that they have discretion over how such additional funding will be spent to benefit of Wales’ most vulnerable children and their families whom they support.

This is the first time additional statutory funding has been made available to Wales’ two children’s hospices since 2007. It is an important step in building towards a sustainable future for the two hospices and will allow them to:

• recruit more nurses and to build more resilience into their services in the hospices and in the community
• extend the breadth and depth of their services and to provide more respite care for those families who so desperately need it
• reduce the burden of unplanned and crisis admissions on the NHS.

There is, however, much more to do to make sure that seriously ill children in Wales and their families can access the palliative care they need, when and where they need it.

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. 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.
2. 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.