Jeremy Miles MS, Cabinet Secretary for Health and Social Care
Good palliative and end-of-life care can make a real difference to the quality of life for people with a life-limiting illness. It is why we invest more than £11m every year in these services and why improving palliative and end-of-life care is a Programme for Government commitment.
Person-centred care is at the heart of our vision for palliative and end-of-life care – we believe that everyone who needs it, should have access to the best possible care in Wales.
The national palliative and end-of-Life care programme provides national leadership and acts as a forum to drive change and improvement in services across Wales. The quality statement for palliative and end-of-life care sets the strategic direction and the ambitious standards needed to deliver the outcomes and experiences we expect for everyone accessing such care.
We have achieved a lot since May 2021. The national programme’s core team has been expanded to include additional medical, nursing and allied health profession expertise; a strategic programme lead has been appointed and a series of stakeholder advisory groups have been set up to support the ambitious work programme. This includes representation from people with lived experience and our voluntary hospices in Wales.
We recognise the significant financial challenges hospices are facing and are committed to working with them and the national programme board to find a sustainable funding settlement. This includes developing a hospice commissioning framework for Wales. This work is being taken forward by the national programme board with support from the NHS Wales Joint Commissiong Committee.
We have delivered on the first phase of our commitment to review voluntary hospice funding and provided an additional £2.2m for hospices on a recurrent basis from April 2022. Phase two recommendations to increase the capacity of district nursing out of hours and community clinical nurse specialists at weekend and on bank holidays are being implemented through our Further Faster programme.
The interim phase three recommendations were received in February; as part of our response, we provided the 12 NHS-commissioned hospices with a £4m cost-of-living grant to support delivery of their vital services.
Under the guidance of the advance and future care planning group, we have strengthened the DNACPR and advance care planning resources. We review and update Sharing and Involving – the DNACPR policy for adults in Wales – every two years to reflect evidence-based practice and have developed an all-Wales DNACPR competency framework for nurses and allied health professionals and an information leaflet for individuals and carers to help make decisions about CPR clearer.
We have made significant investments in bereavement services and have undertaken work to improve bereavement care. This includes the publication of our national bereavement framework in October 2021 and the launch of a specific bereavement pathway to support people affected by the sudden or traumatic death of a young person up to 25. Bereavement pathways for children and young people and pregnancy and baby loss are progressing well. We have extended the £3m bereavement support grant to third sector organisations for a further three years to 2028 and have provided an extra £420k to health boards to strengthen bereavement co-ordination.
Our ambition is to recruit and retain a motivated and skilled palliative and end-of-life care workforce. Modelling and data analysis work is ongoing to predict future costs and workforce need and the national programme team is working with Health Education and Improvement Wales to develop a palliative and end-of-life care competency framework.
Work is ongoing to develop a national service specification for palliative and end-of-life care to provide guidance on achieving the highest standard of care in Wales. This will define the out-of-hours service, the specialist palliative care service and scope the referral criteria across the different sectors and health boards. Work is also underway to develop a medium-term plan for palliative and end-of-life care that will focus in part on the wider education and support for unpaid carers.
While significant progress has been made, we know that challenges remain including disparities in the availability and quality of palliative care services in parts of Wales; workforce shortages and the lack of comprehensive data about patient outcomes and experience.
Under the leadership of the national programme board, we will continue focus on person-centred care as we to continue to improve palliative and end-of-life care.