Great Ormond Street has been accused of a “cover up” in a scandal over controversial treatments that may have been used on hundreds of children.
The world famous children’s hospital may have subjected up to 463 children with a rare gut disease to unnecessary and potentially risky treatment.
Under the “aggressive” treatment, some children were needlessly banned from eating for years – instead getting food via a tube through their stomachs.
Other patients were also unnecessarily given a powerful drug with potentially serious side effects - including an increased risk of cancer.
One boy, Sammy Bentwood, was put on a medicine for such a long time that when he needed it to treat a subsequent condition later on, it was no longer effective.
When his case was later reviewed by doctors at another hospital, they said that the drug had been unnecessary and likened it to “cracking a walnut with a sledgehammer”.
The hospital has repeatedly defended the controversial measures it took with patients who have the rare condition, an autoimmune disease of the gut which causes vomiting, pain and inflammation.
Whilst GOSH has admitted that some of the treatment was unnecessary, it said in a statement in 2016 that “there is no evidence of any long term consequences to these patients”.
However, a Telegraph investigation has found that a draft report into the controversy by the Royal College of Paediatrics and Child Health (RCPCH) raised doubts about this claim – and was significantly watered down before being published in December 2017.
The draft report said that staff had concerns that the hospital’s 2016 statement had been “misleading” – but this line was deleted in the finalised version.
It also failed to mention staff concerns that GOSH had not embraced a “truly open reporting culture” and that some of the improvement measures it had put in place might not last “once…the spotlight is off”.
GOSH then fought for more than a year to prevent the draft report from being released under freedom of information laws.
Today’s disclosures will raise concerns about whether the renowned hospital is being transparent about its history of treating children with the rare gut disease.
Last night, Norman Lamb MP, the former Minister for Health, said the changes appeared to be an attempt to “keep things undercover and limit the damage”. He also called for an inquiry to look at both the controversial treatment and the fact that GOSH tried to stop the draft report from being published.
“We really can’t tolerate secrecy and cover ups in medical practice. I think this does call into question the whole culture of the organisation,” he said.
Another child, Evie Gormley, who was diagnosed with the rare gut disease in 2007 spent more than a year on an immunosuppressant recommended by a GOSH consultant.
The 15 year-old was taken off the drug “without an explanation”.
The draft report referred to as many as 463 patients with the gut condition, Eosinophilic Gastrointestinal Disease, shedding light on the number of children that may have been affected by unnecessary and potentially risky treatment.
But by the time the document was made available to the public, this figure had been removed. Gosh has said it “does not recognise” it.
Elsewhere, the draft report noted that “there was recognition that moderate harm had occurred for some” patients - but the phrase “moderate harm” was removed before publication.
Peter Walsh, from charity Action against Medical Accidents, said GOSH’s handling of the matter had been “unacceptable”.
Concerns about GOSH’s gastroenterology ward were first raised in 2011 and the hospital called in outside experts twice to evaluate the department.
Then, in 2015, it asked the RCPCH to conduct a probe, where reviewers heard concerns that GOSH’s treatment of the rare gut disease “maybe causing avoidable harm”. It recommended GOSH reassess its treatment.
In a leaked memo from 2016, GOSH’s own medical director admitted that “some of the approaches” it uses to manage the gut condition “were at the aggressive end of the spectrum” and that children were exposed to unnecessary “food exclusion diets and drugs with potentially serious side-effects”.
In spring 2017, the RCPCH conducted a follow-up review to assess how GOSH had responded to its concerns. It submitted a draft report of its findings to Gosh, asking it to respond with comments on its “factual accuracy”.
A spokesperson for GOSH said it was “asked to respond to a first draft of the report … to allow fact-checking, improve clarity and ensure that it was an accurate representation of the service” and that its decision not to release the draft report was because it "incorrectly interpreted the FOI Act".
It added: “All our patients are now supported by a multi-disciplinary team… [and] we have also reviewed all our gastroenterology patients and are assured that they are receiving appropriate treatment.
The hospital has previously said it was “not responsible” for Evie’s care because her local doctors wrote her prescriptions.
A spokesperson for the RCHCP said the review service “includes an opportunity … to review and respond to a first draft of the report. It is normal to receive feedback and comments at this stage, but ultimately it is an independent report.”