Exclusive: NHS England attempted to alter independent report on child cancer care

The independent organisation NCEPOD, or National Confidential Enquiry into Patient Outcome and Death, has confirmed it was asked to remove a recommendation from a report published in December.

The charity’s chair Ian Martin told HSJ the body was concerned about the request “as it has never happened before” and he said it put the “independent clinical voice, on which we rely, at risk”.

It is the latest example of NHS England’s attempts to limit wider exposure of clinical concerns around co-location of intensive care services with child cancer units.

The issue is central to claims NHS England has “buried” concerns about the model of care at the Royal Marsden Foundation Trust, whose chief executive Cally Palmer is also NHS England’s national cancer director.

Multiple sources contacted HSJ to describe the interference in the NCEPOD report following revelations last week that NHS England’s cancer team had also put pressure on clinicians to soften draft recommendations on co-location of intensive care services.

NCEPOD carries out research into the management of patients to improve standards of care. It is commissioned by the Health Quality Improvement Partnership on behalf of a range of national bodies including NHS England.

It published a report in December 2018 into the care provided to children and young adults admitted to critical care within 60 days of receiving treatment for cancer.

Multiple sources contacted HSJ accusing NHS England of interfering in the report. HSJ has learned the first draft included a recommendation that there should be “on-site paediatric intensive care available in all principal treatment centres”.

Following an initial review of the draft report this recommendation was re-worded after concerns from HQIP that NCEPOD did not have specific enough data to support the recommendation.

NCEPOD chair Ian Martin told HSJ: “Following the second review NHS England responded with concerns, via HQIP, about the new recommendation. At this stage it was suggested it should be removed, as they felt the data in the report still did not support it. We declined to do so, but were content to review the wording further and ultimately the published recommendation was one supported by the data we had, and was accepted by NHSE.”

He added that NCEPOD was happy to engage in discussion about its recommendations with stakeholders but added: “We were concerned that we were asked to remove a recommendation as it has not happened before to an NCEPOD report. Any such request by any stakeholder puts the independent clinical voice, on which we rely, at risk.

”The strength of the programmes we are commissioned to undertake is the clinical engagement that helps us deliver reports and make recommendations that will drive improvement in patient care.”

In the final report, from a sample of approximately 150 patients, 22 per cent died as a direct result of their anti-cancer therapy while another 25 per cent suffered substantial toxicity from the treatment.

The study found a lack of frank discussions with patients and families about risks, consent forms missing key information and a lack of discussion within multi-disciplinary teams.

The final report said robust clinical protocols and pathways must be in place for units without critical care services but added: “It is essential that all organisations recognise the advantage of access to on-site age-appropriate care.”

Following allegations NHS England and its national cancer team had covered up reports or put pressure on clinicians to soften recommendations on intensive care, NHS England chief executive Simon Stevens has asked Professor Sir Mike Richards to carry out a review and report to the NHS England board in public on the way forward.

Royal Marsden’s chief executive Cally Palmer will also “play no part” in future decisions on child cancer services.

Professor Stephen Powis, NHS national medical director, said: “It is completely legitimate for NHS England and NHS Improvement clinicians and policy experts as part of the peer review process to ask questions of audit providers or challenge recommendations where the evidence does not support them.

“Equally, we are clear that having posed those questions the authors are free to form their own view which is precisely what happened in this case.”