They should have just told us the truth. Instead, we had to fight tooth and nail Bereaved mother Leigh Allan
The family of inspirational teenager Amy Allan who died after a series of hospital failings yesterday backed calls for a Patients’ Commissioner.
Amy’s mum Leigh, 41, called on families across Scotland to support the campaign for a new champion for patients as she told of her heartbreak over losing Amy two years ago.
Amy, 14, from Dalry, Ayrshire, who had spent years being treated for a genetic illness, was undergoing surgery for curvature of the spine when she was suddenly taken off a ventilator at Great Ormond Street Hospital in London.
Leigh said: “No one had been warned there was no preparation in place to move her to a machine, called ECMO, which is designed to do her breathing for her, and could have saved her life.
“We’ve had to live not only with the dreadful loss of a wonderful girl who had overcome so much in her life and was growing into a confident teenager, but we’ve spent ever since grappling with a complaints procedure that is in no way supportive of grieving families.
“We discovered there were 18 different versions of the official hospital report detailing what happened, and all the changes and additions that had been made to it before it was given to us. It made us very angry. So much effort had been put into that report instead of the hospital being open and transparent.
“If they had just told us the
Amy Allan
whole truth immediately and apologised, we would have been heartbroken, but we would have been given the respect of being told the truth and we’d have to accept that mistakes happen. We’ve found ourselves fighting tooth and nail to get the truth.
“We still have no explanation for why Amy’s death was not reported as a ‘serious incident’, but believe that was because it would have been lodged against the hospital’s performance rating. If we’d had a Patients’ Commissioner it would have helped us. It’s something Scotland could do and it would mean so much to families like us.”
Amy, who had been born with a genetic condition called Noonan Syndrome which affected her heart and lungs, had spent years being treated at hospitals in Glasgow and Great Ormond Street. Holes in her heart were repaired and she was then diagnosed with thickening of the heart muscles.
Leigh said: “Despite it all, Amy had a go at everything she could. She loved life and was very active. She was very proud of her First Aid training, and was growing into a beautiful teenager when her life was cut short. Her dad Richard, brother Ryan and myself miss her every single day, we always will.”
The coroner’s court heard Amy was taken off the ventilator at 11.20pm on September 4 2018 but, despite deteriorating rapidly, was not placed on the ECMO system until 8am the next day when her body was already struggling.
Dr Rahit Saxena, an intensive care doctor at the hospital agreed that taking her off the ventilator in the night, when fewer doctors were at the hospital for ECMO, was not ideal. He had not been informed she was being operated on.
The coroner Edwin Buckett was critical of the hospital and said in his ruling that the overall impression was that “no one was in overall control”.
Matthew Shaw, CEO of Great Ormond Street Hospital, said: “We know Amy didn’t get the level of care she needed, and we are deeply sorry for that. We have taken our responsibility to learn from what happened to her very seriously. We have reviewed the events which led to her death. We recognise that we made mistakes, and that we must learn and improve as a result, and are making a number of changes to the way we provide care.”