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Together for Short Lives Statement on the Decision by Helen & Douglas House to close Douglas House leading to the removal of service for 19-35 years but the continuation of service for children through Helen House.

The closure of Douglas House is terrible news for the many seriously ill young people and families who depend on their services. Transition to adulthood is an extremely difficult time for young people with life-limiting conditions, who not only have to navigate the move from children’s to adult services, but do so at a time when their health is often deteriorating. The loss of Douglas House will leave families extremely anxious about where they will now be able to access short breaks, ongoing symptom management and end of life care that, for many, was keeping them from breaking point.

The news is also difficult for the staff at Douglas House, who are committed to providing the vital care and support they need.  We recognise that the decision to close Douglas House was a desperately difficult one for the trustees of Helen & Douglas House but one which was necessary without the commitment of long term funding.

We now urge local commissioners to work with Helen House to develop a coherent plan for support and funding of this remaining service for children to help ensure its long-term sustainability. Children’s hospices are vital but they cannot rely on the generosity of the public alone to fund the services they provide to meet the complex needs of children with life limiting and life threatening conditions.  National and local commissioners must acknowledge and adhere to the Government’s commitment to choice in end of life care which states: “To support high quality personalised care for children and young people, commissioners and providers of services must prioritise children’s palliative care in their strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.”  It is clear in this case that this national commitment is being ignored locally.

Commissioners have no excuse not to plan and fund children’s palliative care in their areas; it is an outrage that Oxfordshire CCG do not provide any funding to Helen House. By commissioning children’s palliative care locally, CCGs can help deliver the best quality of life and death for seriously ill children, As the National Institute for Health and Care Excellence (NICE) have shown, it will also save them money by taking the pressure away from already overstretched acute NHS services.

Sadly we do not believe that this will be an isolated incident.  Together for Short Lives’ #fundnotfail campaign has highlighted how funding cuts and a failure of local commissioners to deliver against the government’s choice at end of life commitment is leaving many vital life line services understaffed, underfunded and under pressure to meet the need for support.  Ultimately it is the most vulnerable children, young people and families that suffer.

The news of the closure of Douglas House coincides with a call today from Together for Short Lives’ and five other national charities, for Government to commit to developing a funded and integrated national children’s palliative care strategy for England that reflects the child and families palliative care journey across health, social care and education.  The strategy must fully recognise the role of families, those working in NHS and local authority-run services, in children’s hospices and other palliative care charities.  It should ensure that established guidance, including that set out by NICE, is implemented in every community across England.

Shaun Walsh | Executive Director of External Relations