The avoidable death of a baby girl was covered up by NHS staff and organisations over 20 years, a major inquiry has found, with facts “wilfully ignored, and alternatives fabricated” to deny her parents the truth.
In a damning report published today, Dr Bill Kirkup, who led the investigation, said the death of baby Elizabeth Dixon in December 2001 when her breathing tube was blocked could have been avoided, concluding: “There were failures of care by every organisation that looked after her, none of which was admitted at the time, nor properly investigated then or later.” He wrote: “A cover-up began on the day that she died.”
It added that after her death, Elizabeth’s “parents were met with indifference, rejection and outright deception instead of openness and honesty”.
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Baby Elizabeth was left brain-damaged after doctors and nurses at Frimley Park Hospital, in Surrey failed to treat her dangerously high blood pressure for 15 days after she was born eight weeks premature in December 2000. Her blood pressure was caused by a tumour in her adrenal glands.
She was left severely brain damaged as a result and needing ongoing round-the-clock care. Almost a year later she suffocated during the night when an agency nurse, Joyce Aburime, who did not have experience of looking after babies with a tracheostomy tube to help them breathe, failed to keep the tube clear.
Her parents rushed her to hospital, but in a highly unusual act they were were later driven home with Elizabeth’s body by the doctor responsible for Elizabeth’s care, Dr Michael Tettenborn. No postmortem or inquest was held at the time.
A planned investigation collapsed in 2014 after NHS England’s chief executive, Simon Stevens, personally pulled NHS England out of taking part in the inquiry. The health service Ombudsman then refused to investigate the case, sparking critcism of a regulatory gap for “historic cases”. The then health secretary, Jeremy Hunt, commissioned the inquiry, saying that Elizabeth’s parents had been “passed around the system for too long”.
Dr Kirkup’s report found evidence that “some individuals have been persistently dishonest, both by omission and by commission, and that this extended to formal statements to police and regulatory bodies”.
The investigation’s report makes 12 recommendations, including eight about how safety incidents are managed and reviewed, and it calls for a referral to the Independent Office for Police Conduct over a poor investigation by Hampshire Police.
Dr Kirkup said: “Our findings raise very significant concerns over the conduct and veracity of individuals, some of whom have occupied senior positions, which would have emerged if police had examined the events after Elizabeth’s death, but they closed their investigation without doing so. This should now be the subject of a statutory referral to the Independent Office for Police Conduct.”
He said: “Elizabeth was one child, but the failures that affected her care at every stage are not unique. Had she lived, she would be almost 20 years old, but the same attitudes and behaviours as were evident then may still be found in places today.
“As a result of the concealment of key facts about her death from the outset, her parents have been left for far too long without a complete, true account of what happened. This was a needless and cruel burden for a mother and father already grieving the loss of their child.
“That a cover-up so rapidly and simply instigated could be so influential and persistent has significant implications for all of us, and for how public services react when things go wrong.”
He added: “Clinical error, openly disclosed, investigated and learned from, should not result in blame or censure; equally, conscious choices to cover up or to be dishonest should not be tolerated. A full response will require some deep-seated changes in organisational and professional culture as well as better recognition of clinical problems and response to safety incidents.”
Speaking to The Independent today, Elizabeth’s parents thanked Dr Kirkup for his work and called for a new body to investigate NHS cover ups.
Elizabeth’s mother, Anne Dixon, said: “There needs to be an organisation with the powers to do a full investigation. All the existing organisations have different roles and remits and even Dr Kirkup’s inquiry wasn’t able to compel NHS staff or non-NHS organisations to cooperate.”
She said: “This is not just a culture 20 years ago, this is a culture we have experienced throughout all the investigations and it’s a culture that other families experience today.”
When Elizabeth was born, doctors gave an instruction in her medical notes for her blood pressure to be checked every four hours, but the instruction was ignored, and it wasn’t measured again until the fourth day. Again it was found to be high but was not treated. Measured 10 days later, it was dangerously high again.
Her parents noticed that Elizabeth became “floppy” days after being born – the first signs of severe brain damage.
She was taken to Great Ormond Street Hospital where her blood pressure was “reduced precipitately”, causing further brain damage, the report found. This mirrors failings in care identified by experts in the case of Jasmine Hughes, who died in 2011. Earlier this month, Great Ormond Street were accused of covering up what happened to Jasmine after evidence went missing and key information was neither shared with a coroner nor included in her medical notes.
Months later, as Elizabeth was ready to be discharged, the NHS said it could not provide the level of care she would need at home, but a private company was commissioned, without proper scrutiny of its ability to care for Elizabeth, under a contract the inquiry said was “entirely inadequate”.
On the night she died, Paul Collins, a senior manager for the company, allocated Joyce Aburime to look after Lizzie despite knowing the nurse had no experience of tracheostomy care for a small child, and was not qualified in children’s nursing.
During the night, Elizabeth’s breathing tube became blocked. The inquiry said: “The most likely explanation is that [Aburime] had fallen asleep after a long journey and perhaps a preceding shift in Coventry. Whether or not this is what happened, her lack of action represents a clear failure of nursing care.”
When she was rushed to hospital, Dr Michael Tettenborn, who was responsible for Elizabeth’s community care, was called and he told doctors that her death was expected and her death was natural causes.
Dr Kirkup’s report said: “This note was wrong in almost every significant respect”. It added that the note appeared designed to play down what may have happened. Dr Tettenborn also directed a junior doctor to fill out a death certificate incorrectly.
Dr Tettenborn then drove the Dixons home with Elizabeth’s body, accompanied by Ms Aburime in what the report said was an “unusual and irregular” action. It added thst this also “ended the possibility of Elizabeth’s parents saying something at Frimley Park Hospital that would have challenged Dr Tettenborn’s account of an expected death … When they arrived at the house, Dr Tettenborn simply let all of the passengers out on the drive, Mrs Dixon carrying Elizabeth, and left them there.”
The report said the coroner’s office carried out a “sham” of an investigation that denied the family a postmortem after Dr Tettenborn misled the coroner’s officer about what happened to Elizabeth.
A police investigation and Crown Prosecution Service decision not to prosecute was “seriously flawed”, the report found, and was made with a lack of independent advice and evidence combined with a “pervasive” view that Elizabeth was terminally ill and that her death was the result of a tragic one-off accident instead of care failings.
In a statement to the House of Commons, the minister for patient safety, Nadine Dorries, said: “This report describes a harrowing and shocking series of mistakes associated with the care received by Elizabeth, and a response to her death that was completely inadequate and at times inhumane.
“Elizabeth and her family were let down by a failure to diagnose or respond to her underlying condition, to put in place the care she required, to acknowledge the circumstances of her death or provide her parents with an honest account of these failings.”
She added: “On behalf of government and the health system, I would like to say I am truly sorry for the devastating impact this must have had upon the Dixon family.
“I hope this report is the beginning of a process that will bring some closure for the family. They should not have had to wait for so long.
“Elizabeth’s legacy should be that other families will always be told the truth.”
She said the NHS and national bodies should “reflect carefully” on the report, adding: “There is no room for complacency. The continual appearance of shocking reports about patient safety – historic or more recent – implies there is much for the NHS to focus on. My department will therefore have oversight of their responses and report back to the house. There needs to be learning and implementation, but above all I want to be assured that we are doing all we can to make sure such events cannot happen again.
“No other family should ever again have to go through the heartache and frustration experienced by the Dixons.”
Professor Stephen Powis, NHS England’s national medical director, said: “While NHS England is not and has never been an investigatory body, so was not able itself to conduct a review into this tragic case from nearly 20 years ago, we fully supported an independent investigation throughout so that the family could get the facts they deserve, which must now be acted on.”
Dr Timothy Ho, medical director at Frimley Health NHS Foundation Trust, said: “We welcome the publication of this report and would like once again to offer our sincere and heartfelt apologies to Elizabeth's family.
“Our care for neonatal infants, our support for bereaved parents and how we investigate concerns have changed beyond recognition over the past 19 years, but we will carefully consider the report and its recommendations with a commitment to taking any action that is needed.”
A spokesperson for Great Ormond Street Hospital said it was working to “identify the actions we need to take to learn from this case”.
“It is clear that Elizabeth and her family have been let down at so many points during her life and following her death and we are very sorry for our role in this,” the spokesperson added.
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