Report calls for more improvement to children’s palliative care in Wales

Palliative care for children deserves to be given the same emphasis as that for adults according to a report published by the University of South Wales Welsh Institute for Health and Social Care. 

Acknowledging the strides that have already been taken in Wales, the report, commissioned by T? Hafan highlights the services required for life-limited children are very different from adult end of life care and the needs of children that are expected to die in childhood, and the support required by their families, have received in sufficient national strategic attention, in part because the numbers are, thankfully, relatively small.

The report suggests that at any one time and excluding neo-natals there exist about 1050 children in Wales that would benefit from specialist paediatric palliative care, around 10% of which will die in any one year. The relatively small numbers in need of care has, the report suggests, resulted in their needs becoming subsumed within a wider approach to palliative, and end of life, care.

The report recommends a move to grant children’s palliative care its own governing body, by either strengthening the membership of the current End of Life Implementation Board or establishing a separate implementation panel which would be mandated by the Minister for Health and Social Services.

This recommendation is one of seven contained in the report released today by T? Hafan, the Welsh Institute for Health and Social Care and the University of South Wales. The report, authored by Professor Marcus Longley, Mr Jon Skone and Dr Cerilan Rogers, offers a holistic view of paediatric palliative care in Wales and has drawn on the full and active involvement of key stakeholders from the Welsh Government, the NHS in Wales, Local Health Boards, academia and the charity sector, notably T? Hafan, Hope House Children’s Hospices and Together for Short Lives.

The report praises the efforts of the Welsh Government and commends the Sugar Report of 2008, which is stated as being fundamental to moving children’s end of life care forward.

Launching the report, Member of the Welsh Assembly David Rees said: “The Assembly is committed to meeting the palliative care needs of children and young adults across Wales and I welcome T? Hafan’s initiative and leadership in commissioning the Welsh Institute of Health and Social Care to undertake the research.” 

T? Hafan has supported over 600 life-limited children and their families since its launch in 1999.  The charity is keen to continue to fulfil a leadership role and work in partnership with key stakeholders similarly disposed to continually improving the services available to care for children and support their families.

Professor Marcus Longley, co-author of the report, Director of the Welsh Institute for Health & Social Care and the Professor of Applied Health Policy at the University of South Wales said: “Policy focus has moved towards end of life care in recent years but our report clearly demonstrates that the needs of children have changed and policy should now be focused on wellbeing.” 

Advances in medical treatments and technology have meant that children with conditions where premature death was inevitable now have a much greater chance of living through transition into adulthood, thus delaying the requirement for end of life care. 

Out of the estimated population of 1,054 children requiring palliative care in Wales, only around 105 will require end of life care during each given year, leaving a question mark over what support and service is currently being offered to the remaining 90% of children with palliative care needs. 

Speaking about the report, T? Hafan’s Deputy Chief Executive Jeremy Jackson said: “T? Hafan is committed to identifying all children in Wales that are expected to die in childhood and to offer them, and their families, a comprehensive package of high quality, free care and support. We cannot do this alone, we can do so in partnership and we welcome the collaboration and cooperation of all stakeholders that has made this report possible.

The numbers of families affected might be modest but the impact of the services and the care we all provide to those in unimaginable circumstances is enormous. Developing a better understanding of how paediatric palliative care in Wales must evolve to meet future needs is essential to maintain the quality of care, extend the service and maximise its impact.

T? Hafan is anxious to keep a spotlight on the needs of families whose children are expected to die in childhood, encouraged by the support our initiative has received from all parties, delighted to have the Minister himself launch the report and confident that the report will act as a catalyst for further engagement. This is a good day for Wales.”