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East of England children’s palliative care service launched

A new palliative care service for babies, children and young people, including support for families, launched today at Cambridge University Hospitals NHS Foundation Trust (CUH).

The Regional Advice and Facilitation Team (RAaFT) was set up in response to growing numbers of babies, children and young people in the East of England with life-limiting and life-threatening conditions, following additional funding by NHS England.

Penny and Andrew Rivett with son Sam
Penny and Andrew Revitt with son Sam

Among those addressing the launch was parent speaker Penny Revitt from Ipswich who gave a moving account of how her son Sam, ten, received end of life support to February this year following a rare, lifelong form of epilepsy, called Dravet’s Syndrom (DS). He was transferred from Addenbrooke’s to the Treehouse hospice in Ipswich.

Erin Saddler and mum Helen
Erin Saddler and mum Helen

Guests also saw a touching film about how eight-year-old Erin Sadler, from Colchester, came up with a name and new logo for the service helped by mum, Helen. Erin, who also receives support at the Treehouse, has a number of complex issues that affect her heart kidneys and liver.

RAaFT is spearheaded by CUH in partnership with East Anglia’s Children’s Hospices (EACH), Keech Hospice Care and Little Havens Hospice.

The new multi-disciplinary team consists of two full-time and one part-time highly specialist doctors in children’s’ palliative medicine, a specialist pharmacist, a clinical psychologist and family therapist, two specialist nurses, an administrator and funding to develop specialist play skills.

This enhanced 24/7 service will support improved symptom management, advanced care planning and end of life care for families needing an extra layer of support 24 hours a day seven days a week. The team will support those with a range of conditions, including cancer and those with extreme prematurity, severe congenital heart disease, errors of metabolism, cerebral palsy, neuromuscular issues and others.

The team will offer support wherever children and young people are being cared for across CUH and the East of England region and, for the first time, offer dedicated support for women and partners making difficult decisions about their unborn, and acutely unwell, babies.

It will remain a critical component of the East of England Children and Young People’s Palliative and End of Life Care Managed Clinical Network (MCN), which extends across hospitals, children’s hospices and community services in Cambridgeshire, Peterborough, Norfolk, Suffolk and Essex and reaching into Bedfordshire and Hertfordshire.

RAaFT, which also has an educational and research role, is an extension of the Children and Young Person’s Care Service (CYPS) established at CUH in 2009 and dovetails with plans for Cambridge Children’s Hospital to better integrate physical and mental health care.

Amanda Cahn - head and shoulders Tracy Rennie - head and shoulders
Amanda Cahn - head and shoulders
Amanda Cahn
Tracy Rennie - head and shoulders
Tracy Rennie

CUH’s associate director of operations women’s and children’s services, Amanda Cahn, said:

We recommended investment in the current palliative care service to ensure the reliable and sustainable provision of quality care to all babies, children and young people that need our specialist care, whether it be in the family home, hospital or hospice.

Amanda Cahn

Tracy Rennie, EACH director of care and deputy CEO, added:

This wonderful achievement is the result of true collaboration between the CUH Specialist Centre and hospice and community partners, sharing our knowledge, skills and resources to benefit families wherever they need us.

Tracy Rennie
Sonya O'Leary - head and shoulders Professor Stephen Barclay - head and shoulders
Sonya O'Leary - head and shoulders
Sonya O'Leary
Professor Stephen Barclay - head and shoulders
Professor Stephen Barclay

Sonya O’Leary, a nurse and associate director of children’s services at Keech Hospice Care said:

We’re delighted to be an important part of this project. Developing a truly integrated network across acute, community and hospice care will give greatest benefit to children with life-limiting illnesses and their families.

Sonya O'Leary

Katie White is head of children and young people’s services at Little Havens in Essex. She said:

This collaborative project will ensure that children and families are put at the centre of their care so we can build a network of support when it is needed most.

Katie White

Professor Stephen Barclay, clinical lead of the NHS England East of England all-age Strategic Clinical Network for Palliative and End of Life Care and professor of palliative care at the University of Cambridge said:

The RAaFT Team will not only provide much-needed care and support where and when it is needed across the East of England, but will also be a great opportunity to work collaboratively with other UK centres in research, informing delivery of optimal evidence-based care.

Professor Stephen Barclay