• Great Ormond Street Hospital removed criticism from patients over its gastrointestinal treatment scandal
  • Appendices into report from Royal College of Paediatric and Child Health removed from version shared with regulators
  • Trust says its new leaders are unable “to establish the rationale for this decision”
  • CQC has expressed concerns about “defensive approach when challenged on performance and secrecy”

A world-famous hospital withheld information from regulators over a scandal in which children were needlessly given potentially dangerous drugs and invasive tests, it can be revealed.

Great Ormond Street Hospital for Children Foundation Trust is today admitting an incomplete version of an external report it commissioned into gastroenterology services was sent to regulators.

The report, delivered in 2017, contained multiple damning criticisms of the service. The version presented to the trust’s board, Care Quality Commission and NHS England and NHS Improvement included these, but appendices containing patients’ complaints were removed. 

These complaints (see box below) illustrated how GOSH had handled the important and difficult task of managing patients and their families in the wake of the scandal emerging in 2015.

The report was a second into the FT by the Royal College of Paediatrics and Child Health. The first in 2015 set out the problems while the follow-up was intended to assess how the trust’s attempts to improve were going.

Referrals into the hospital significantly reduced after 2015 as the trust worked to improve processes and establish whether patients had come to harm.

In a paper going to the FT’s board today, the trust said it only became aware last month that an incomplete version of the second report had been sent to regulators and made public in March 2018.

The paper said: “In the absence of reference to the removal of the appendices in the cover sheet that accompanied the report, and the fact that many of the leadership team have since changed, it has not been possible to establish the rationale for this decision.”

The RCPCH report was presented to the board in March 2018 by the interim medical director Andrew Long. His profile on Linkedin indicates he is still deputy medical director at the trust.

In his report to the board last year, which accompanied the RCPCH report, Dr Long said he was “disappointed that some anecdotal information has been included which is unsubstantiated and not adequately triangulated”.

He added: “While it is important to reflect feelings that individuals may have about the service and the review process, it is also imperative that the progress the department has made over the past two years detailed in the review is not undermined by unverified information.”

It did not clarify which sections he meant. Deputy chief executive Nicola Grinstead was recorded as accountable for the paper in March 2018. She left in January.

A trust spokesman said: “We recognise we could have been more transparent. To reflect this, the full report and all appendixes are now available in our public board papers on our website.”

The trust had not answered HSJ’s questions as to why the appendices were omitted as the article went to press. It has always refused to release the first RCPCH report from 2015.

In one of the omitted sections, patients expressed significant criticism of the trust since the initial report was presented, and restrictions put on referrals, in 2015.

Their comments included:

“Don’t continue to abandon these complex children and their families, doing nothing is ‘doing harm’. Lead the way for the UK, be the best that you can, do what it says on the tin ‘the child first and always’.”

“A shiny new ward or better administration are pointless without a doctor that can treat your child, acknowledge their symptoms and discuss a condition that had been diagnosed at GOSH.”

“Putting patients first. Stop trying to offload the blame for the recent poor review onto parents. Start LISTENING to parents, stop making assumptions, stop putting ‘diagnoses’ on research papers which haven’t been given, communicate with local healthcare (God forbid….. GOSH are known as God’s Own Service Here because of their self-inflated opinion) and offer appropriate support to patients they previously claimed to care about instead of rubbishing past diagnoses to get themselves out of a sticky situation. Also – never get clinic letters typed in India again, apart from the time lag a year’s worth of ours went to Australia!”

“Also stop the internal private referrals. We were even asked if we wanted to travel to Belgium for oesophageal manometry if we could pay and told how easy it was. Private and NHS gets meshed to together and the children are the biggest losers with parents purely the victims of consultants desire to further their research and/or free up waiting list space.”

“Acknowledge and treat eosinophilic disorders / gut allergy using international guidelines. Be honest and open, Carry out your duty of care as a quatinery (sic) hospital do not turn the clock back on 15 years of speciality knowledge by playing it safe and discarding your patients. Listen to patients and parents if you support them and believe in them they will be your biggest advocates. Work with patient advocacy groups/ charities, government and scientists etc in a positive manor. (sic)”

“Shockingly bad admin.”

“Dr X” being “very rude about my children and said there was nothing wrong with them, when clearly biopsies and test proved otherwise.”

The main part of the 2017 report said investigators had spoken to staff and said: “In some areas they still perceived a culture that suppressed challenge from colleagues which made them fearful of speaking out.

“Several indicated that there appeared not to have been any organisational learning or remorse from the situation or focus on actually what happened to those children and families.”

A CQC spokeswoman said it had concerns about “defensive approach when challenged on performance and secrecy”, which it reported early last year.

She said: “As a result the trust was rated as requires improvement for ‘well led’ and we made clear where action was required to address these issues. We continue to monitor the trust closely and will be re-inspecting later this year which will include a review of well led at trust level.”