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leading children’s charities encourage continued focus on the palliative care needs of children and young people in Wales

Leading UK children’s charity Together for Short Lives has partnered with children’s palliative care professionals and providers including Tŷ Hafan and Hope House to call for the next Welsh Government to maintain the momentum already achieved in improving the provision of palliative care to children with life-shortening conditions in Wales.

In Wales, there are currently estimated to be over 1,050 children and young people living with conditions that mean they may not survive into adulthood. Many of these children have extremely complex and unpredictable conditions, requiring round the clock care, seven days a week.

Leading children's charities

Together for Short Lives, Tŷ Hafan, Hope House (Tŷ Gobaith in North Wales) and a range of children’s palliative care professionals are working together on behalf of children and families by reaching out to the parties contesting the Welsh Assembly elections in May to set out the challenges facing children with life-shortening conditions in Wales.

They are hosting a cross-party roundtable discussion with Assembly Members at the Senedd today to launch their new document ‘Transforming the lives of children with life-shortening conditions: policy priorities for the next Welsh Government’ which highlights manifesto commitments that each party could make to support these children.

Children’s palliative care services like Tŷ Hafan and Hope House offer a lifeline for families caring for children with life-shortening conditions but these families still sometimes have difficulty accessing the volume and frequency of care they require and the support they need.

Among the commitments called for in the new document are:

  • a stronger children’s palliative care workforce.

  • fair and sustainable funding for children’s palliative care services.

  • improved joint working between children’s and adult’s services for young people who are transitioning into adult care.

Dr Richard Hain, the Consultant and Clinical Lead of the Wales Managed Clinical Network, helped to produce the new manifesto asks and has written a blog explaining why the commitments called for in this document are vital to securing improved palliative care for children in Wales. His blog is available here: http://bit.ly/HainCPC

Commenting on the new manifesto asks, Together for Short Lives’ Chief Executive Barbara Gelb OBE, said: “The next Welsh Government has the opportunity to transform the lives of the 1,000 children and young people with life-shortening conditions across Wales. These children have complex and unpredictable conditions and rely on tailored care and support. 24/7 children’s palliative care is provided by the family and supported by regular short breaks and specialist care. It is vital that the next Welsh Government makes sure there is sustainable funding for children’s palliative care and investment in the workforce to make sure there are enough highly-trained specialises to care for these children.”

Andy Goldsmith, Chief Executive of Hope House, said: “The commitments that we ask for in ‘Transforming the lives of children with life-shortening conditions’ will transform children’s palliative care in Wales. We are asking the parties contesting the election to work with us to ensure that children and their families can access high-quality services that receive fair funding and are accessible when and where they need them. We would like the Welsh Government to put children’s palliative care on an equal footing with adults’ and to support this with resources and a strong workforce.”

Jeremy Jackson, Deputy Chief Executive of Tŷ Hafan, said: “Our eight manifesto asks set-out the steps that the next Welsh Government can take to significantly improve the life of children with life-shortening conditions and their families. We would like parties to commit not just to additional funding and investment in the sector, but also to promote collaboration within Wales and with the rest of the UK to make sure that we learn from best practice. Great strides have been made since the publication in September of the Tŷ Hafan commissioned Wales Institute for Health and Social Care report into the future palliative care needs of children in Wales and we are anxious to maintain the momentum following the election.”

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