A Regional Advice and Facilitation Team

Project overview

In the East of England, an estimated 8,969 children live with life-limiting conditions. 

To help make specialist palliative care for children more cohesive across the area, a Managed Clinical Network (MCN) has been operating for over 10 years. Covering six Integrated Care Systems (ICSs), it includes: 

• 1 tertiary centre (Cambridge University Hospital’s Paediatric Intensive Care Unit) 
• 1 children’s hospital (Norwich) 
• 3 Level 3 Neonatal Intensive Care Units (in Cambridge, Luton and Norwich) 
• 15 district general hospitals 
• 7 community nursing services 
• 5 children’s hospices. 

The MCN provides clinical leadership for children’s palliative and end of life care (PEOLC) and provides a 24/7 specialist advice service. 

The tertiary centre employed one half-time palliative care consultant who contributed to the 24/7 on call provision, which was not enough to cope with the increasing demand on services. When the consultant retired, the organisations in the MCN worked together to approach NHS England for the funding needed to employ more staff. 

Outcomes

The MCN worked together to write a business case for more support. As a result, NHS England (NHSE) agreed to fund a new Regional Advice and Facilitation Team (RAaFT) for children’s palliative care.  

RAaFT is based at Cambridge University Hospital and was launched in September 2022. It is a 24/7 service that provides multi-disciplinary, specialist PEOLC support for babies, children, young people and their families. 

The funding for the service  includes: 

• 2.5 full time equivalent (FTE) consultants 
• 0.5 FTE psychologist 
• 0.5 FTE pharmacy input 
• 0.2 FTE play input 
• 2 WTE nurses 
• data support. 

Key facilitators

Presenting the business case as a collective helped emphasise the need for the RAaFT service. By working together, the individual organisations had far more influence than if they had worked alone. 

The MCN focused on improving access to services across the 24/7 period. This aligned its work with the national service specification for Specialist PEOLC services: Children and young people (January 2023*) and the national PEOLC agenda to improve sustainability and enhance quality. 

Challenges

Each service receives varying funding from their ICS. This means provision varies and it can be challenging for families to find the support they need. This may mean they need to travel a long way to access services, and in some cases the nearest services are in a different county. 

By working together as a MCN, and with the regional service (RAaFT), children and young people’s PEOLC services have made provision more co-ordinated. This gives families more choice about when and where they access support, for example their place of care and place of death. 

*To access this document you will need to register for an account on the Future NHS platform and join the national PEoLC workspace 

The MCN East has carried out a point prevalence study, over the last two years, to identify the number of children with palliative care needs on one day across the East of England. This has given them valuable data they can share with providers and commissioners to help plan future service developments. This will be further enhanced by ongoing annual data collection. 

There is currently no palliative care register for children and young people. An identified area of need within the MCN is developing a way of using SystmOne records to flag if a child has a palliative care need, so that professionals in services such as Accident and Emergency can be alerted as necessary.  

The MCN is also working towards improving advance care planning (ACP) for young adults. When young people  transition into adult services, they need support to make their own decisions about ACP where possible, with parents/carers needing additional input to understand the implications.