Elizabeth Dixon: Baby death guidelines 'never drawn up by NHS'

National guidelines that were recommended following the avoidable death of a premature baby have never been drawn up, the BBC has learned.

A 2016 review into the death of Elizabeth Dixon urged NHS England to develop rules around the treatment of high blood pressure in babies.

A BBC investigation has discovered these rules were never set up, despite campaigning by the baby's parents.

NHS England failed to confirm whether it had written any guidelines or not.

But a spokesperson added: "The NHS is currently developing a paediatric early warning system which will require nurses to measure blood pressure as part of their normal observations rounds."

Elizabeth, known as Lizzie, was born prematurely in 2000 but suffered brain damage as a result of missed high blood pressure by medical staff at Frimley Park Hospital in Surrey, the Care Quality Commission (CQC) reported in 2016.

She later died from asphyxiation after suffering a blockage in her tracheostomy tube while under the care of a private nursing agency at home.

The findings of an independent inquiry released on Thursday concluded her death had led to a "20-year cover-up" of mistakes by health workers.

Anne and Graeme Dixon have refused to give up in their pursuit of answers over their daughter's death

In its 2016 report, one of the CQC's key findings was that there was a need for "national guidance on which babies require blood pressure monitoring and the frequency of observations".

The report recommended that NHS England ask the National Institute for Health and Care Excellence (NICE) to draw up the guidelines as the vast majority of trusts were only focused on managing low blood pressure in babies.

But the BBC has learned that NHS England never asked NICE to write the instructions.

Dr Malcolm Coulthard, a retired paediatric consultant who examined Lizzie's care and that of another brain-damaged toddler whose high blood pressure was mismanaged, said it had been "a big mistake" not to draw up the guidelines.

"I suspect it [poor high blood pressure care in babies] is a lot bigger issue in the NHS than we know about," he said.

• Baby death inquiry 'exposes 20-year cover-up'

• Elizabeth Dixon: The 20-year battle for answers

Lizzie's parents Anne and Graeme Dixon, from Church Crookham in Hampshire, are continuing to campaign for these instructions to be drawn up.

"We want to push for real change in the healthcare service when it comes to the monitoring and management of blood pressure in babies and children," they said.

"We want to ensure safer hospital and community healthcare for very vulnerable, disabled patients, so that no other patients suffer in the way Lizzie did from inadequate and inappropriate care during her short life."