Hospital accused of cover-up over ‘risky’ treatment
Draft report raised doubts over Great Ormond Street claims of ‘no long-term consequences’ for children
GREAT Ormond Street Hospital has been accused of a “cover-up” over controversial treatments that may have been used on hundreds of children.
The famous children’s hospital, known as GOSH, may have subjected up to 463 patients with a rare gut disease to unnecessary and potentially risky treatment.
Under the “aggressive” treatment, some children were needlessly banned from eating for years and fed instead through a tube into their stomachs.
Other patients were unnecessarily given a powerful drug with potentially serious side-effects – including an increased risk of cancer.
One boy, Sammy Bentwood, was on a medicine for such a long time that when he needed it to treat another condition, it was no longer effective.
When his case was later reviewed by doctors at another hospital, they said the drug had been unnecessary and likened it to “cracking a walnut with a sledgehammer”.
The hospital has defended measures it took with patients who have eosinophilic gastrointestinal disease (EGID) – an autoimmune disease which causes vomiting, pain and inflammation.
While admitting some of the treatment was unnecessary, it said in 2016: “There is no evidence of any long-term consequences to these patients.”
However, a Daily 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 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 fought for more than a year to prevent the draft from being released under freedom of information laws.
Today’s disclosures will raise concerns about whether the hospital is being transparent about its history of treating children with the rare disease.
Norman Lamb MP, the former health minister, said the changes appeared to be an attempt to “keep things undercover and limit the damage”.
He 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, diagnosed with the 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 condition, shedding light on the number who may have been affected by unnecessary and potentially risky treatment. But by the time the document was made public, this figure had been removed. GOSH has said it “does not recognise” it.
Elsewhere, the draft report noted “there was recognition that moderate harm had occurred for some” patients – but the phrase “moderate harm” was removed before publication.
Concerns about GOSH’S gastroenterology ward were first raised in 2011 and the hospital called in outside experts twice. In 2015, it asked the RCPCH to conduct a probe, during which concerns were raised that GOSH’S treatment “may be causing avoidable harm”. It was recommended GOSH reassess its treatment.
In a leaked memo from 2016, GOSH’S own medical director admitted “some of the approaches” it uses exposed children to unnecessary “food exclusion diets and drugs with potentially serious side-effects”. In 2017, the RCPCH conducted a follow-up review and submitted its draft report to GOSH, asking it to comment 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 patients are now supported by a multidisciplinary 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
‘We really can’t tolerate cover-ups in medical practice. This calls into question the whole culture’
was “not responsible” for Evie’s care because her local doctors wrote her prescriptions.
The RCPCH 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.”