Why we need children’s hospices

Why we need children’s hospices

David Strudley CBE FRSA makes the case for a major expansion of children’s hospice services.

David Strudley CBE FRSA makes the case for a major expansion of children’s hospice services.

The idea of children’s hospices stemmed from a growing realisation that there were no facilities specifically designed for children with life-limiting conditions.

More than anybody else, Dame Cecily Saunders was responsible for establishing the discipline and culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion and respect, as well as rigorous scientific methodology in the testing of treatments. She abolished the prevailing ethic that patients should be cured, that those who could not be cured were a sign of failure, and that it was acceptable, even desirable, to lie to them about their prognosis.

At the centre of hospice and palliative care is the belief that each of us has the right to a pain-free dignified death and our families will be supported to allow us to do so. However, this approach to the provision of palliative care has so far been largely confined to adults. When it comes to the treatment of children with life-limiting conditions, other factors also apply. Palliative care of children is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person, and support for the whole family.

According to recent studies, 49,000 children have life-limiting conditions in the UK. For the majority, their conditions mean that they and their families will be in need of care and support for many years. This is where children’s hospices play their crucial part and why they are increasingly necessary. Yet they are funded mainly by voluntary donations and the vital services they offer only reach a small proportion of those needing support. The first children’s hospice opened in 1982 – in seeking to understand the structure and operation of children’s hospices, it has been particularly useful to apply Tavistock concepts of organisation. Given their relative newness as care organisations, this has presented an interesting challenge and indeed a new task for this approach.

Having spent the last three years closely associated with this approach, encountering a number of obstacles along the way, David Strudley CBE FRSA now seeks to make the case for a major expansion of children’s hospice services. This will not be an easy undertaking because of the issues and difficulties with which the children’s hospice movement is currently grappling…

Recording of the talk

Speaker’s bio

David Strudley CBE FRSA: After a successful military career in the British Army spanning thirty years, David left Northern Ireland in 2003 to join the children’s hospice movement. Initially, fulfilling the role of CEO of Naomi House in Hampshire, David moved to become the CEO of Acorns Children’s Hospice in 2006. Working closely with the NHS in Birmingham, the Black Country and the Three Counties, the team at Acorns developed and expanded specialist palliative care services for life-limited and life-threatened children across the West Midlands and support for their families, including those that were bereaved. He stood down from this role at the end of 2016 intending to write a book on children’s hospices. However, in February 2017 he was asked to provide consultancy support to Rainbows Hospice for Children and Young People in the East Midlands, a task that soon led to his becoming the full-time Interim CEO for the next 18 months. Having stood down from his role at Rainbows he has recently been appointed Vice President at Acorns in recognition of his services to the Charity.

Meanwhile, in 2012, David was appointed Chair of the Together for Short Lives UK Transition Taskforce to support older children in moving from children’s to adult services. The Taskforce brought together organisations and professionals from health and social care, education and vocational development, housing and employment in the private and public sectors, as well as voluntary organisations to provide guidance, training and coordinated support. The Taskforce vision was that all these young people should be able to lead their lives as independently as possible, according to their wishes, while receiving the appropriate level of health and social care.

David is once again working on the book on children’s hospices under the auspices of the Tavistock and Portman Trust. Recently, he was appointed as Associate Lecturer in early years inclusion for children with complex health issues at the University of Worcester. He is a trustee at Lifelites, a charity providing assistive technologies for children and young people with complex needs. He is also a Consultant at Forum Education in Nottinghamshire, where he is providing coaching and mentoring to CEOs of Multi-Academy Trusts across the Midlands.

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