East of England Regional Advice and Facilitation Team

The East of England 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.

RAaFT is spearheaded by Cambridge University Hospitals NHS Foundation Trust (CUH) and delivers a regional service working in partnership with East Anglia’s Children’s Hospices (EACH), Keech Hospice Care and Little Havens Hospice.

The highly specialist multi-disciplinary team consists of:

• Part time Consultant in Paediatric Palliative Medicine
• Part time Consultant Paediatrician with special interest in Paediatric Palliative and End of Life Care
• Part time Consultant Nurse in Paediatric Paediatric Palliative and End of Life Care
• Part time Consultant Clinical Psychologist
• Part time Senior Paediatric Pharmacist
• Full time Clinical Nurse Specialists x2
• an Administrator
• Part time Specialist Play

This Regional service supports improved symptom management, advance care planning and end of life care for BCYP and their families needing support 24 hours a day seven days a week by working in partnership with those organisations and professionals operating in the East of England Children and Young People’s Palliative and End of Life Care Managed Clinical Network (MCN). In addition, the Consultant Clinical Psychologist provides consultation, supervision and teaching for professionals to ensure their needs are met. The Children’s Hospice Services provide 24/7 specialist nursing care face to face for all who need it with specialist clinical oversight and support coming from RAaFT during office hours and specialist telephone support from the MCN consultants out of hours.

The team supports those with a range of conditions, including:

• cancer
• those with extreme prematurity
• severe congenital heart disease
• Life-limiting metabolic conditions
• cerebral palsy
• neuromuscular

The team offers support wherever babies, children and young people are being cared for, in hospital, hospice or at home. It also offers dedicated support for women and partners making difficult decisions about their unborn, and acutely unwell, babies.

The RAaFT service provides a critical component of the MCN which extends across hospitals, children’s hospices and community services in Cambridgeshire, Peterborough, Norfolk, Suffolk, and Essex and reaching into Bedfordshire, Hertfordshire Luton and Milton Keynes.

RAaFT also has an educational and research role. Learning and development opportunities are regularly delivered by RAaFT Clinicians to the many and varied teams across the region at universal, targeted and specialist levels of palliative and end of life care according to need.

Support for children and young people’s palliative and end of life care research is also provided with the Children’s Palliative Outcome Scale Study (CPOS) an important opportunity to develop robust mechanisms to pursue a validated outcome measure and to capture BCYP and their families experiences of care.

Point prevalence surveys were carried out in 2022 and 2023 to provide information about the known number of children and young people who need palliative and end of life care in the region at any one time. During 2024 the MCN hopes this survey will continue to inform both service developments and local commissioning.

Collectively the Network is beginning to standardise its clinical data across the Region in terms of caseload and outcomes. Based on data from one of the children’s hospice services, in 2022/23, their clinical nurse specialists received 467 calls from families and professionals when ‘on call’ outside of normal working hours. Furthermore, their work across the 24/7 period led to 147 hospital admissions being avoided and 503 GP contacts avoided.