What progress has the Welsh Government made towards ensuring that all of the 3655 children identified in the Welsh Government-funded Trends in Prevalence and Complexity report have the choice to access palliative and end-of-life care should they need it?
We are committed to working with hospices and the national programme board for Palliative and End-of-Life Care (PEoLC) to improve access to children's palliative and end-of-life care.
The Quality Statement for Palliative and End-of-Life Care published on 7 October 2022 sets out expectations for the service for children, young people and adults. The national programme board has developed a work programme to drive forward the commitments in the quality statement and both adult and children’s hospices are represented on it and help to inform policy.
Providing accessible and equitable care is a central workstream for the children and young people’s advisory group within the national programme; key findings from the paediatric palliative care prevalence study are being used to inform this work. Progress has been made in understanding the necessary wrap-around care to maximise outcomes and the geographical challenges in accessing services. Additionally, we are collaborating with the specialist palliative and end-of-life care paediatric group to define a high-quality service. This will be detailed in the final phase three end-of-life care funding review, due in early 2025, and in the new national service specification, which is being developed.
As part of our Programme for Government commitment to review palliative and end-of-life care funding, we have provided an additional £2.2m for hospices on a recurrent basis from April 2022, including an additional £900,000 for children’s hospices.
In addition, earlier this year we provided an additional £4m one-off hospice cost-of-living grant to help ensure hospices can continue to provide vital services and keep on providing high-quality care across Wales. This included £775,000 for children’s hospices.
Looking forward, we have agreed to the development of a hospice commissioning framework for Wales. This work is being taken forward by the national programme board for palliative and end-of-life care with support from the NHS Wales Joint Commissiong Committee. The framework will be developed in conjunction with Welsh hospices, and it is intended that it will meet the needs of both adult and children’s hospices to improve funding opportunities and equity. It is hoped it will address many of the challenges hospices face in relation to inflationary uplifts, length of service level agreements and Agenda for Change issues.