Alastair Whitington, Consultant Editor for Specialised Commissioning, examines why the new children’s cancer specification is so controversial
In June 2019, the proposed future model of care for children’s cancer was published in a service specification. What should have been a routine, un-newsworthy event became a minor crisis for NHS England following a backlash from the children’s cancer clinical community when it was discovered that the recommendations around clinical service interdependencies and co‑location of services, which are central to patient safety, had been watered down in the final version without clinical justification.
Clinical Reference Groups (CRGs) lead on the development of clinical commissioning policies, service specifications, and quality standards. Service specifications define the standards of care expected from organisations funded by NHS England to provide specialised care. CRGs are the vehicle through which clinicians working in specialised services engage with NHS England as commissioner, have their voice heard, shape future service delivery, and correct deficiencies. Clinicians accept that, ultimately, NHS England will decide what is affordable, but hold dear the principle that services should be evidence based, high quality, and clinically safe.
In 2017, the Children and Young Adult Services CRG, in conjunction with NHS England, worked with the children’s cancer clinical community to develop the future model of children’s cancer services as part of the National Cancer Transformation Programme strategy for 2015–2020.1 The future model would be set out in a draft service specification and, following a short consultation period, signed off by the Independent Cancer Taskforce, which is chaired by Cally Palmer, National Cancer Director and Chief Executive of The Royal Marsden NHS Foundation Trust.
In June 2018, the draft specification, which was produced following what was widely seen as an open, transparent, and rigorous process, was circulated for consultation. At the end of a few weeks’ consultation period, the specification would normally be published. However, it took until June 2019 before the final specification appeared.
The co-location of children’s principal treatment centres (PTCs) with Level 3 paediatric intensive care units (PICUs) has been considered for many years by the majority of the paediatric cancer community as a core requirement, and has been a key recommendation in a number of previous reports on children’s cancer services aimed at improving patient safety and experience. It was therefore unsurprising that the June 2018 draft specification for children’s cancer services stated that ‘critical co-dependencies and mandatory co‑location’ with other clinical services must be delivered on-site at every PTC (see Box 1).
Box 1: Critical co-dependencies for delivery in every PTC in the 2018 draft specification
- Paediatric oncology services
- Paediatric cancer pharmacy services
- Paediatric haematology services
- Paediatric radiology services
- Paediatric critical care (Level 3)
- Paediatric surgery, to include management of emergencies, central lines, and biopsy services (where these are not provided by interventional radiology or anaesthetics)
- Paediatric anaesthetics and pain management
- Therapy services (such as psychology, physiotherapy)
- Neurosurgery (for centres treating children with neuro-oncological diseases).
PTC=principal treatment centre
The 2018 draft went on to state in bold type that: ‘It is important to note that Level 3 critical care is required to be co-located with PTCs delivering either paediatric oncology or blood and marrow services, as set out within Commissioning Safe and Sustainable Specialised Paediatric Services: A Framework of Critical Inter‑Dependencies (Department of Health, 2008).’2 However, in the proposed final specification, published in June 2019, the wording had changed to say only that the critical co‑dependencies ‘should’ be delivered on-site at every PTC, indicating that some PTC functions are shared across more than one site.
Significantly, the previously ‘important’ statement regarding Level 3 intensive care had been erased: neurosurgery was no longer considered a critical co‑dependency, despite the fact that 25% of all children’s cancers relate to the brain or central nervous system.3
There now appears to be double standards regarding patient safety. While the importance of rapid access to emergency care through the co‑location of every Paediatric Oncology Shared Care Unit with a Children’s Accident and Emergency Unit is a requirement, the co-location of the children’s PTC with paediatric intensive care is apparently not.
The downgrading of PTC co-location with Level 3 intensive care is at odds with the conclusions of a number of major reports produced in the last 14 years, two of which were the direct result of serious concerns about the model of care connected with the Royal Marsden/St George’s PTC. These reports all concluded that there should be immediate access to paediatric intensive care, and that this would be best achieved by co-location of children’s cancer services with a PICU. These reports include:
- Improving outcomes in children and young people with cancer—2005 NICE guidance4
- Commissioning safe and sustainable specialised paediatric services. A framework of critical inter‑dependencies—2008 guidance from the Department of Health2
- South London Paediatric Oncology. NCAT review—a 2011 report by the National Clinical Advisory Team5
- London paediatric oncology review. Report of the independent expert panel—a 2015 report by the NHS London Children and Young People Strategic Clinical Network6
- Improving outcomes in haematological cancers—2016 NICE guidance (NG47).7
The children’s cancer clinical community has been further incensed by NHS England’s failure to publish an expert panel report,6 which NHS England had itself commissioned, to review the model of children’s cancer care in South London and South East England following a number of serious untoward incidents, including child deaths. The 2015 report again concluded that a PTC should be co‑located with a Level 3 PICU and that, as the Royal Marsden could not meet this requirement, its children’s cancer services should transfer elsewhere. This led to the accusation of the report being buried by the highest echelons of NHS England. This has been strenuously denied, although it remains unclear as to why the 2015 report was never published and how and why the service specification was radically changed between its draft and final versions.
Who would benefit from the watering down of the specification?
It may be purely coincidental that every PTC in England, with the exception of the Royal Marsden, is co-located with a Level 3 PICU. It is also understood that the changes to the 2018 specification were made following feedback from the national cancer management team, which reports to the National Cancer Director, who is also Chief Executive of the Royal Marsden. To take the heat out of the crisis, NHS England has taken two actions. First, Cally Palmer will ‘play no part’ in decisions on the new cancer standards for children’s services, and second, Professor Sir Mike Richards (former National Cancer Director and Chief Inspector of Hospitals) has been asked to undertake a comprehensive and independent review of the consultation process and advise on the best way forward.
Damage has been done to the reputation of NHS England and its senior management, and this needs to be urgently restored. The apparent stifling of expert clinical opinion and ignoring, amending, or omitting clinical advice on patient safety risks not only losing the engagement and trust of the clinical community, but also has potentially serious medicolegal consequences should further deaths occur.
Damage has been done to the reputation of NHS England and its senior management …
Perhaps the answer lies in the comment Professor Richards made in 2008 on the publication of what many consider to be the definitive guidance2 on commissioning safe and sustainable specialised children’s services: ‘This framework is a unique piece of work with clinical credibility and I commend it to commissioners. At a time of ever‑increasing clinical specialisation, it gives due focus to the inter‑dependencies between our specialties. It therefore enables us to focus on patients and not just their condition. It also recognises the importance of safety and sustainability, and demonstrates that we cannot continue with “more of the same” if we are to achieve our world-class ambitions.’
If NHS England finally takes the clinical advice offered on numerous occasions over the past two decades, it might just deliver the world-class cancer outcomes it seeks.
- NHS England. Achieving world-class cancer outcomes: a strategy for England 2015–2020. Progress report 2016–17. London: NHS England, 2017. Available at: www.england.nhs.uk/wp-content/uploads/2017/10/national-cancer-transformation-programme-2016-17-progress.pdf
- Department of Health. Commissioning safe and sustainable specialised paediatric services. A framework of critical inter-dependencies. London: DH, 2008. Available at: webarchive.nationalarchives.gov.uk/20130123195020/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_088068
- Cancer Research UK. Children’s cancer survival. www.cancerresearchuk.org/about-cancer/childrens-cancer/about/survival (accessed 16 September 2019).
- NICE. Improving outcomes in children and young people with cancer. Cancer Service Guideline 7. NICE, 2005. Available at: www.nice.org.uk/guidance/csg7/resources/improving-outcomes-in-children-and-young-people-with-cancer-update-pdf-773378893
- National Clinical Advisory Team. South London Paediatric Oncology. NCAT Review. London: NCAT, 2011. Available at: www.hsj.co.uk/download?ac=3041858
- NHS London Children and Young People Strategic Clinical Network. London paediatric oncology review. Report of the independent expert panel. London: NHS London Strategic Clinical Network, 2015. Available at: www.hsj.co.uk/download?ac=3041859
- NICE. Improving outcomes in haematological cancers. NICE Guideline 47. NICE, 2016. Available at: www.nice.org.uk/ng47