CHILDREN treated for cancer at a hospital at the centre of a row over infections linked to its ventilation and water supply systems were given antibiotics prophylactically, with their parents falsely told it was part of their treatment, a public inquiry has heard.
In his opening statement to the Scottish Hospitals Inquiry, Steve Love QC said parents were "made to feel stupid" for questioning what was happening as wards were closed at the Queen Elizabeth University Hospital and Royal Hospital for Children in Glasgow, and that some children had been left in pain after accidentally being given over- or under-doses of medicine because staff were "too busy with room moves"
He also urged the inquiry to determine whether there had been a "deliberate cover up" by NHS bosses.
Mr Love represents the families of 54 children admitted to the facility with serious medical problems including leukaemia and other cancers who went on to contract infections during treatment.
He said: "They reasonably expected that the best possible medical care and treatment would be provided for their children in a suitably safe and clean environment.
"What they in fact found was serious infection, life threatening additional illnesses, and a catalogue of other problems as a result of the hospital environment, the hospital water supply, and the conduct of some medical staff."
READ MORE: Boy, 10, was victim of hospital infection linked to pigeon droppings
Mr Love said parents were "frequently kept in the dark about the problems" with the water supply and ventilation at the hospital.
He said: "They were not informed about the cause of infections suffered by their children when it appears that the hospital knew many of the infections were or may have been closely related to the water supply and ventilation system."
In some cases the infections the children developed were "worse than the disease itself", said Mr Love, who described a "lack of candour and failure to obtain informed consent" which "undermined the trust and confidence that parents should have been able to have in the hospital, medical staff and treatment being administered".
Mr Love said: "It seems children were being given antibiotics as a preventative measure without any explanation being given to the parents as to why this was happening...they felt they were talked to in a condescending manner if they asked questions or queried what was happening."
There were examples of parents "being told it was for their child's cancer treatment or for an underlying problem, which is shown to be false," said Mr Love, adding that parents were "made to feel stupid or over-anxious for questioning".
READ MORE: Infection 'probably' linked to Glasgow children's hospital caused death of young cancer patient
Complaints handling had been a recurring source of frustration for families, said Mr Love.
He said: "Complaints made by parents have on many occasions been ignored, gone without response, or been overlooked by the hospital. Parents do not feel their complaints were being listened to or treated seriously.
"The failure of the hospital to properly address the complaints of parents is something that needs to be addressed and answered by this inquiry."
Mr Love said concerns were raised about refusals or delays in providing medical records; lack of appropriately trained staff; and that staffing levels for nursing and cleaning "appeared inadequate".
There was also evidence of "over- and under-dosing of patients as a result of staff being too busy with room moves" which led to "painful consequences for the child patient", he said.
Mr Love stressed that parents who had spoken up in the media or as part of the inquiry process fear the consequences if their child relapses.
He said: "Will they be treated worse? Will their child receive substandard care? How can this fear by allayed?
"There must be transparency as to whether senior members of the NHS board were feeding ambiguous or even false information to junior staff to disseminate to patients and parents with a view to alleviating concerns that were growing.
"Was there a deliberate cover up?"
READ MORE: Lord Brodie says hospitals inquiry will 'dig deep' into what went wrong
The independent public inquiry, before Lord Brodie, is investigating the construction of the Queen Elizabeth University Hospital Campus (QEUH) in Glasgow and the Royal Hospital for Children and Young People and Department of Clinical Neurosciences (RHCYP/DCN) in Edinburgh.
It will determine how issues relating to adequacy of ventilation, water contamination and other matters impacted on patient safety and care and whether these issues could have been prevented.
It will also examine the impact of these issues on patients and their families and whether the buildings provide a suitable environment for the delivery of safe, effective care.
One of the first witnesses, Cameron Gough, told the inquiry he did not expect to be put in a position where "a building almost killed our son".
He told how he had been left "shell shocked" by the sudden deterioration in his son due to a hospital-acquired infection traced to bacterial contamination in the central line supplying medication into his bloodstream.
Mr Gough's 10-year-old son was diagnosed with cancer after he became unwell in July 2018, when he was aged seven, and was found to have a kidney tumour.
In early September 2018 he had an operation to remove the kidney but Mr Gough said there was a subsequent "rapid deterioration" in his son after a blood sample was drawn from the central line for testing.
He said: "As soon as his line was accessed...45 minutes later he was in a state," said Mr Gough, adding: "We kind of steeled ourselves for dealing with cancer and the implications of cancer, what we didn't expect was to be put in a position where a building almost killed our son.
"And that's really to put it brutally, a hospital-acquired infection was the point we came closest to losing our son."
Mr Gough told the inquiry that the same thing happened the following day, and medical staff again managed to stabilise his son.
He was told the problem was a hospital-acquired infection, described as a "poo bug".
Mr Gough said that he was left "shell shocked" by the experience and said "it shot my confidence in the hospital an awful lot".
He praised the Schiehallion unit, the children's cancer unit at the QEUH, but said he was concerned about levels of cleanliness in other areas of the hospital and said that on one occasion he found "brown matter" on the bed in the room that his son was placed in and had to have it changed.
After that experience he started cleaning rooms his son was put in as he was not confident they were clean.
Speaking ahead of the first day of evidence, Lord Brodie said: “No other group has been more affected by these issues than the patients and families from whom we will be hearing in the next few weeks.
“Their experiences will help inform future lines of investigation as we turn our attention to subsequent phases of the Inquiry.
“This first diet of hearings is the culmination of a year of preparation, providing us with a foundation to ensure that the Inquiry is led by the evidence it uncovers during the course of its lifetime.
“Ultimately, our role is to understand what went wrong with the construction of these hospitals so lessons can be learned to prevent the recurrence of such issues in the future.”
Earlier this year, a separate independent review found the deaths of two children at the QEUH were at least in part the result of infections linked to the hospital environment.
The review investigated 118 episodes of serious bacterial infection in 84 children and young people who received treatment for blood disease, cancer or related conditions at the Royal Hospital for Children at the campus.
It found a third of these infections were "most likely" to have been linked to the hospital environment.
Two of 22 deaths were, "at least in part", the result of their infection, it said.
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