Significant care failings at GOSH

A coroner’s investigation into the death of a Scottish teenager has found significant failings in her care at Great Ormond Street Hospital.

Amy Allan, from Dalry, North Ayrshire, was 14 when she died in September 2018 following spine surgery at the London hospital.

The St Pancras coroner, Edwyn Buckett, outlined poor planning and support from the hospital but he said he was not able to make a firm conclusion that the omissions had caused or  “materially contributed” to her death, although he is likely to issue a prevention of future deaths report.

Great Ormond Street Hospital has admitted Ms Allan’s care "fell short of the high standards" it should be meeting and has said it has made changes to how it works.

Amy Allan was born with the genetic condition Noonan Syndrome, which caused a number of heart problems throughout her life.

As she got older her spine started to curve due to scoliosis and it was clear she needed surgery to reduce her pain and prevent it worsening. However, her heart problem - pulmonary hypertension- made the surgery more complicated.

It was decided the operation should be carried out at Great Ormond Street Hospital (GOSH), because it had the necessary heart specialists to treat any complications, specifically a life-support system, known as ECMO, which oxygenates blood outside the body.

However, when Amy's ventilation tube was removed after the operation and she needed support from the back-up cardiac and ECMO teams, they were unavailable.

Announcing a narrative verdict, the coroner found that there was poor planning of Amy's care once she was accepted on the intensive care unit.

Specific points he identified were that there was no ECMO life-support system which “should have been at the forefront" of the team caring for her; no-one was in charge of Amy's post-operative care, including ensuring that ECMO support was in place; her ventilation tube was removed in spite of “worsening vital signs" and without a cardiac assessment having been made.

Mr and Mrs Allan said they were assured that the ECMO back up would be available if anything went wrong.

They said that their daughter was excited about the operation. Her biggest concern was that a ventilation tube would be left in for 24 hours after her operation.

St Pancras Coroner's Court heard that a junior doctor removed her ventilation tube shortly after 23:20, just hours after her surgery, and she rapidly declined. The tube was removed despite several medical readings suggesting she wasn't stable enough.

It was only then that her parents found out that there was no ECMO back up at that time of night and that the cardiac team was unaware of Amy's presence.

Mrs Allan said she was told that the tube was removed because Amy had asked for it. “That's the only justification they gave for taking it out. I can't accept that was even a consideration. Of course, the child was going to wake up and want the tube out. Even an adult would want that."

Her parents were at the bedside as Amy's blood pressure plummeted and her heart rate started racing.

They said Amy had been sedated earlier but was conscious and "terrified" as doctors tried to help her.

At about 03:00 they decided to put her tube back in and her parents were asked to leave.

The ECMO team was assembled at 04:00 but did not begin to work on Amy until 07:15 because they are not routinely available at all hours.

Amy died 23 days later from sepsis on 28 September. Amy's parents said Great Ormond Street had never admitted its mistakes and called for a full inquiry by the Care Quality Commission (CQC).

Mrs Allan added: "We are appalled to see the lack of openness and honesty in the hospital's response. We want GOSH to tell the truth. It is not the 24-hour service they offer, there is a lack of nursing staff, there's a lack of consultants and I don't think it is the service they advertise.

"I would expect the relevant bodies to go in and look at it now because it's not right."

A spokesman for Great Ormond Street Hospital said: "We are very sorry Amy's care fell short of the high standards we should always be meeting. We will look closely at the coroner's findings to consider if any additional action is needed.”

He said changes had already been made to the way they worked to support children with complex conditions. This included improving the way clinical information is shared between teams and enhancing multi-disciplinary assessments.