• CQC investigation reveals inconsistent practice and lack of guidance across NHS in caring for high risk babies
  • Review was prompted by case of baby Elizabeth Dixon who died in 2001
  • NICE will produce new guidelines aimed at improving care which CQC believes will save lives

There is a significant risk to hundreds of babies and children because of inconsistent practice and a lack of clear guidance on treatment, an investigation by the Care Quality Commission has found.

The watchdog uncovered concerns about the way the NHS identifies and manages clinical risk in unborn and newborn babies, in the first report of its kind, published today. It also raises fears that key information might not be shared between clinical teams and says there needs to be more consistent support for families with children requiring long term ventilation at home.

Among its recommendations for improvement the CQC says every unborn fetus should be assigned a unique identification number to ensure important information from a mother’s clinical notes is properly transferred to the baby’s records after birth. 

The report authors have also secured agreement from the National Institute for Health and Care Excellence, or NICE, to develop new guidelines on identifying and managing fetal anomalies, both before and after birth, as well as guidelines on assessing blood pressure in babies and children.

The investigation was prompted by the case of baby Elizabeth Dixon who was born at Frimley Park Hospital in 2000 and was left with permanent brain damage after hospital staff failed to monitor or treat her high blood pressure. She suffocated to death a year later when a newly qualified nurse failed to keep her breathing tube clear. The cause of her brain damage was only revealed in 2013.

The CQC and NHS England were due to carry out an independent investigation into Elizabeth’s care in 2014, but NHS England chief executive Simon Stevens pulled out at the last minute. As a result the CQC agreed to examine the wider themes raised by Elizabeth’s case to identify any gaps in current practice.

It examined practise at 19 acute hospitals and took evidence from commissioners, and from families whose children require ventilation support at home.

It considered three areas of care including the detection of health problems during pregnancy through screening; the diagnosis and management of newborn babies with a focus on high blood pressure; and the management of infants requiring long term ventilation in the community. It also considered blood pressure among children more generally, in response to concerns raised by Elizabeth’s parents.

CQC deputy chief inspector of hospitals Edward Baker told HSJ: “We found inconsistent practice and a lack of good guidance to help providers deliver really consistent care. I think there is a significant risk to children in this pathway that the lack of guidance and consistent practice will bring.” He said it was likely the issues affected hundreds of children.

He said: “When should you take the blood pressure of a baby? It’s a very clear question but no one can give you an answer to that.

“This is a gap in evidence based medicine. There isn’t hard evidence, and guidelines tend to follow the evidence. What we are saying is that providers need to be consistent in their approach so that everyone is doing what is considered best practice.”

He said the CQC would assess providers compliance with the new guidelines and added: “I think this will make a big difference to many individual children. I am confident it will save lives.”

Professor Baker praised Elizabeth’s parents. “Their persistence gave us the opportunity to do something really important that is going to help a lot of children,” he said. “They were the driving force behind getting us to a position where we could see the potential of doing this. I hope they do see that lessons will be learnt from Lizzie’s story.”

It is the first time the CQC has done a report on specific areas of clinical care, and Professor Baker said he believed the model could be used in future to identify other areas needing improvement.

The Royal College of Nursing, Royal College of Paediatrics and Child Health, the Royal College of Midwives and the British Association of Perinatal Medicine have agreed to work to ensure practice in the areas of care reviewed is more consistent.

Health Minister Ben Gummer today said the recommendations needed to be considered as “a matter of urgency” adding: ”There are unacceptable variations in neonatal care and ensuring the very best and safest care for sick babies is essential.”

Elizabeth’s parents Anne and Graeme Dixon told HSJ they were pleased the CQC had listened to their concerns. They said: “We are alarmed that the potential for harm and death is still there in 2016 and that no organisation or person has until now, done anything positive to learn from the failures in Lizzie’s care or to tell us the truth.

“It was a relief to have the CQC take some of our concerns on board and we are moved by their efforts to ensure that some learning comes from Lizzie’s suffering and we are particularly appreciative that they haven’t just published a report on their review, they have taken steps to ensure that organisations who can take forward suggestions and transform these into guidelines for healthcare professionals, are willing to and have already started to do this.”

The Dixons criticised NHS England for its failure to investigate what happened to their daughter first in 2013 when they were referred to the NHS Litigation Authority instead and again when plans for an inquiry were dropped without warning in 2014.

They said: “NHS England and other NHS staff have, regrettably, treated us with contempt. There is a culture of indifference or defensiveness and reputation management. We should all be working together in an open and honest manner and all aiming for safe care and NHS England need to recognise that this entails acknowledging and learning from what has gone wrong.”

After HSJ last year highlighted the failure of national organisations to investigate Elizabeth’s death, health secretary Jeremy Hunt intervened and ordered an independent inquiry. This will be led by former Mid Staffs Inquiry adviser Peter Hutton.

NHS England has been contacted for a response.