Video report by ITV News Correspondent Emily Morgan
The family of a 14-year-old girl who died weeks after suffering complications following an "uneventful" operation at Great Ormond Street Hospital (GOSH) have called for a full inquiry into the world famous institution.
An inquest into the death of Amy Allan concluded that no one took control of her care while in GOSH.
Coroner Edwyn Buckett, sitting at St Pancras Coroner's Court, criticised the hospital for having no proper plan for the teenager's recovery, post-surgery.
Amy's family had argued basic errors in communication meant specialists were not on hand to deal with an emergency situation that occurred in the minutes after Amy reacted badly to back surgery.
Her mother, Leigh Allan, said the family had been given the runaround by GOSH administrators into what happened exactly a year ago this week.
Mrs Allan, speaking after the inquest alongside husband Richard, said Amy's death was wholly avoidable.
She said the family was disappointed that GOSH had not undertaken a full review but has chosen to dismiss their concerns "at every turn".
She said: "We do not want an apology - the time to be open, honest and transparent has passed; any apologies received now are hollow.
"We want accountability, nothing less is acceptable."
Mrs Allan also called for an inquiry by the Care Quality Commission.
"We are appalled to see the lack of openness and honesty in the hospital's response," she said in the statement.
"We still feel that Amy's death is senseless and unnecessary contributed by carelessness and neglect."
She said that while they were pleased with the criticism GOSH had come in for, the family still believed the lack of planning, the mistakes, and carelessness added up to, for them, neglect.
Amy, from Dalry, Ayrshire, was born with Noonan Syndrome, a genetic disorder that affects the body’s normal development in a wide variety of ways.
This was identified during Mrs Allan’s pregnancy and they were advised she may not survive until birth or, if she did, that she may not reach childhood.
Amy underwent heart surgery at nine weeks and suffered various ailments as she grew into a teenager, including on-going heart issues and scoliosis - a curvature of the spine.
But, speaking in the run up to the inquest, her mother said: "She could do everything everyone else could - she would be slower, she might be a bit out of puff, but she'd just get on in her own time."
Doctors in Scotland determined Amy needed surgery on her spine and it was felt that should be carried out at Great Ormond Street as it had access to specialist cardiac back-up care, including ECMO (extracorporeal life support, similar to heart bypass).
However, according to her family, a breakdown in communication meant that the ECMO team was unaware Amy was even in the hospital, let alone on standby.
It meant that when she suffered a severe reaction when her ventilation tube was removed after surgery, it took far too long to raise the specialists.
"By then, she was on her way to a cardiac arrest," said Mrs Allan.
"The length of time it took for the cardiac team let alone the ECMO specialists was what I would say was the main problem.
"The deterioration Amy suffered by the time she went to ECMO was phenomenal."
Speaking ahead of the inquest, she said they had gone to Great Ormond Street "because ECMO [heart specialists] was to be on standby and it wasn't".
Mrs Allan added: "It took hours and hours for her to get on to ECMO, and what she had suffered, the damage to everything by that point was so severe.
"She put up a three-and-a-half week fight.
"It was avoidable if they had just done a proper cardiac review, extubated her when she was stable and if she had to have gone on ECMO, had them on standby like we were told."
Timetable of confusion - September 4-5 2018
11.20pm: The extubation procedure was carried out and Amy immediately showed signs of distress.
12.30am: A consultant was called at home, again at 1.05am, to discuss treatment.
3am: The Cardiac Intensive Care Unit (CICU) was contacted and made aware she may need ECMO treatment.
3.30am: ECMO team called at home.
4.20am: Decision taken to re-intubate Amy.
7.15am: ECMO begins and flow established at 8.23am.
By this time, Amy was critically ill. She fought for life for more than three weeks before dying from sepsis on September 28.
Her family complained to GOSH about the standard of care and claimed they saw 18 different responses to their complaint.
In a statement, Great Ormond Street Hospital said: “We would like to offer our sincere condolences to Amy’s family.
“We are very sorry Amy’s care fell short of the high standards we should always be meeting.
“We have reviewed her care and we have already made changes to the way we work in order to better support children with these complex conditions.
"This includes improving the way clinical information is shared between teams and enhancing multi-disciplinary assessments to make sure staff have as comprehensive a picture as possible when making complex decisions on a patient’s treatment.
“We will look closely at the Coroner’s findings to consider if any additional action is needed.
“Our thoughts remain with Amy's family during this extremely difficult time.”
Lynda Reynolds, a clinical negligence specialist at law firm Hugh James representing the Allan family, said the complexity of this case "brings into sharp focus" that if the government introduce fixed recoverable fees for clinical negligence claims, as proposed, there will be no ability for solicitors to act for these families at inquests in the future.
“Without specialist legal representation it is unlikely there would have been the same level of accountability at the inquest – something not only important for the Allan family but for the future patients of GOSH," she said.
“There is no public funding for this type of inquest despite the fact that GOSH have been legally represented at the public purses’ expense.”