David Rees AM shows support for major report published to help further improve palliative care of children in Wales

A major new report into the future needs of families in Wales whose children are expected to die in childhood is being launched by Wales’ Minister for Health and Social Services, Mark Drakeford, today.

David Rees AM who supported the event today in the Senedd said; “I welcome the report, launched her today in the Senedd, and it is important that all sectors work in collaboration to take forward its recommendations.  Strategic leadership is now required to ensure we make further progress in providing children’s palliative care and the transition to adult palliative services”.

The report, published by the University of South Wales’ Welsh Institute for Health and Social Care and commissioned by Tŷ Hafan, is a system-wide review of the services available for children who need specialist care throughout their lives, highlighting the strides that have already been taken in Wales, and providing recommendations for improving the support available.

The report describes how the services required for children expected to die in childhood, and the support required by their families, differ considerably from adult end-of-life care. The report suggests that at any one time, and excluding new-born babies, there are 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 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. It highlights the significant commitment across the NHS and from specialist clinicians, and describes how the system of care is built around a small number of highly committed individuals working across complex structures, and as such is fragmented and fragile. The recommendations include developing a Paediatric Palliative Care Implementation Plan to run alongside the End of Life Implementation Plan, to better take account of the specific needs of children.

Authored by Professor Marcus Longley, Mr Jon Skone and Dr Cerilan Rogers, it draws on the full and active involvement of key stakeholders from the Welsh Government, NHS Wales, Local Health Boards, academia and the charity sector, notably Tŷ Hafan, Hope House Children’s Hospices and Together for Short Lives.

Today’s event, hosted by David Rees AM, Chair of the National Assembly for Wales Health and Social Care Committee, will witness presentations by Health Minister Professor Mark Drakeford, Jeremy Jackson, Deputy Chief Executive of Tŷ Hafan, Professor Longley and Maria Timon-Samra, Chair of Tŷ Hafan.

Tŷ Hafan has cared for over 650 life-limited children and provided support to their families since its launch in 1999. Tŷ Hafan commissioned the report to gain insight into future needs and by furthering its partnership with the NHS and others hopes to continue to evolve world-class paediatric palliative care provision in Wales.

Professor Drakeford said; “I welcome Tŷ Hafan’s commitment to working in partnership with the End-of-Life Care Implementation Board and the Welsh Government to drive forward key improvements to end-of-life care for children and young people in Wales.”

Professor Marcus Longley, co-author of the report, Director of the Welsh Institute for Health and 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.

Tŷ Hafan’s Deputy Chief Executive Jeremy Jackson said: “Tŷ Hafan is committed to identifying all children in Wales who are expected to die in childhood and 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.

“Tŷ 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.”

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Note to Editors:

Tŷ Hafan is the hospice for children in Wales. Its services are available throughout Wales and are free to any family that needs them.

• Life-limited means that the child or young person is not expected to live beyond 18 years old.  We do not use the words “terminal”, “sick” or “ill”.
• Tŷ Hafan provides specialist palliative care addressing the physical, emotional, social and spiritual needs of each member of the family.
• The majority of Tŷ Hafan’s work is about “quality of life” rather than “end of life”. It is focused on “making the most of short and precious lives.”
• Tŷ Hafan provides care for the whole family – from diagnosis we journey with them and are there for as long as they need us. Tŷ Hafan never stops caring for the bereaved.
• Tŷ Hafan is not a hospital and is very different from an adult hospice.  A child and his/her family can be referred at the time of diagnosis with care and support being provided throughout the course of the child’s condition which can be for many years.
• Tŷ Hafan provides support to the whole family almost anywhere, whether it is at the hospice, their own home or in hospital.
• The children and young people who access Tŷ Hafan’s services suffer from a broad range of conditions, including rare genetic disorders, congenital abnormalities, progressive neurological conditions or even clusters of symptoms as yet undiagnosed. For example, it cares for children with irreversible organ failure; Cystic Fibrosis, Duchenne Muscular Dystrophy, Battens Disease, Mucopolysoccaridosis, severe Cerebral Palsy and children with multiple disabilities.
• Apart from short break care, Tŷ Hafan provides services such as Family Support, Complementary Therapy, Music Therapy and Outreach Play both within the hospice and in the family home.
• It costs more £3.7 million every year to provide Tŷ Hafan’s services to those families that need them.  Tŷ Hafan’s income is generated by public donations, fundraising and its commercial activities, principally its lottery and shops. For more information visit www.tyhafan.org