In February 2018, The Royal College of Radiologists (RCR) hosted a stakeholder meeting to discuss the future of paediatric conventional (photon) radiotherapy services in England against a background of:
- The ongoing NHS England (NHSE) children and young people’s national cancer service review1
- Two UK NHS proton beam therapy centres (opening 2018 and 2020)
- NHSE adult radiotherapy service specifications (Oct 2017)2
- The publication of the RCR Good practice guide for paediatric radiotherapy (second edition 2018).
The meeting was an opportunity for clinical and paediatric/teenage and young adult (TYA) oncologists, associated healthcare professionals and organisations, and patient and family representatives to establish the key considerations that need to be taken into account in any reorganisation. Every UK Children's Cancer and Leukaemia Group paediatric radiotherapy centre was represented.
Getting the right holistic support for patients and their families would be vital in any reorganisation process. This includes appropriate accommodation and transport, access to social care, key worker support, financial support, concurrent chemotherapy delivery and in-patient resources, given the additional cost burden. Those families that have travelled to the USA for PBT continue to receive a very high standard of care from a well resourced service; the NHS-funded care given to patients and their families travelling within the UK for photons or protons should be able to replicate or even improve upon this. It is possible that charities would be able to provide some additional support but they need to know what the NHS cannot provide.
Families must be consulted and listened to as they will be the ones that make any reorganisation a success. The needs of vulnerable families must be built into any new model of service delivery.
A decision needs to be taken regarding the cut off point for paediatric radiotherapy. Options include 16 years, but this feasibly could extend to become a children and young people’s service including TYA. There is a real risk that TYA patients will fall through the gap between paediatric and adult services if this group are not explicitly considered as part of any reorganisation.
Communication will underpin the success of any reorganisation; communication must be seamless between local centres and specialist centres.
Technology is also an important consideration if remote multidisciplinary team meetings are to take place. There must be significant improvement in the physical data connections between centres and innovative uptake of the virtual meeting software available.
The needs of palliative patients must be considered, and larger, more distant centres must be able to provide a flexible, responsive and timely service, focused on these needs.
The key worker role is vital in a number of respects, including facilitation of smooth transfers of care between centres, communication between families and professionals at different sites and in preparation of children and their families for radiotherapy. The key worker could be a therapeutic radiographer or a clinical nurse specialist. Consideration must be given to how these roles are funded and where they are based; at a local centre or the specialist centre.
A clinical oncologist must remain a key member of all paediatric oncology multidisciplinary teams and there should be cross cover available to ensure continuity of care through periods of leave. Consideration must be given to outreach attendance from the treating centre.
Follow-up for late effects and clinical trial outcomes must be flexible and funded. Models providing non-treating centres with outreach by the treating team should be explored.
The new configuration of centres must be deliverable and should be forward thinking, sophisticated and adaptable. It needs to work for the long term, not just the next few years.
The speed of any reorganisation will also be key. Any centre that takes on more work should be given sufficient time to allow for this, and there must be support for all centres in the transition period.
The two NHS proton centres offer a world leading opportunity to bring together technical excellence with holistic provision to patients and their families, within a framework of clinical trials to improve paediatric proton therapy and define how best to use this technology. This aspirational message needs to be communicated to patients, their families and the wider community.
- www.england.nhs.uk/commissioning/spec-services/npc-crg/group-b/b05/ (last accessed 27 March 2018)
- www.england.nhs.uk/wp-content/uploads/2013/06/b01-radiotherapy.pdf (last accessed 27 March 2018)