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Dr Bill Kirkup’s long-awaited Dixon Inquiry report into the tragic death of 11-month old Elizabeth Dixon in December 2001 is set to lift the lid on hospital and community care failings and is due to be published soon.

In this blog, Associate Legal Director of Novum Law and patient safety expert Mary Smith, who has supported the Dixon family for six years, summarises the background to the Dixon Inquiry report.

The publication of Kirkup’s Dixon Inquiry will be the culmination of a long and arduous, almost two-decade battle by Elizabeth’s loving parents, Anne and Graeme Dixon, to find out the truth behind the events which led to the death of their beloved, firstborn daughter.

Elizabeth was born prematurely on 14 December 2000 at Frimley Park Hospital to Anne and Graeme Dixon from Church Crookham, near Fleet in Hampshire.

Anne’s pregnancy had been beset with worries when three consecutive ultrasound scans revealed the baby had an unidentified abdominal mass, but this was never followed up.

Hospital failings

After Elizabeth was born, Anne and Graeme continually expressed concerns that she appeared in great distress. At four days old, Elizabeth became ‘floppy’, but doctors insisted she was fine. Anne was accused of being an over-anxious mother and referred to a psychiatrist.

However, when she was two weeks old, Elizabeth was transferred to Great Ormond Street Hospital (GOSH) in London after an ultrasound was finally carried out. A week later, she was diagnosed with a non-fatal form of neuroblastoma in her abdomen, rare cancer which affects around 100 children in the UK each year.

Unbeknown to Anne and Graeme at the time, neuroblastoma can cause hypertension (high blood pressure) in babies and young children. Elizabeth’s blood pressure should have been monitored and treated immediately after her birth at Frimley Park Hospital, but this did not occur and hospital staff failed to diagnose or provide medical treatment for her hypertension over 15 days.

© Dixon Family

Sadly, this resulted in Elizabeth suffering permanent brain damage, leaving her profoundly neurologically disabled and having a tracheostomy tube inserted.

Community care issues

After 10 months at GOSH, Elizabeth was finally discharged to Naomi House, a children’s hospice near Winchester, in preparation for her transition to an around-the-clock package of home care.

While at Naomi house, the North and Mid Hampshire Health Authority agreed and made arrangement for Elizabeth’s comprehensive care package to be delivered by Primecare, a then national care provider.

Anne and Graeme were assured Elizabeth would be cared for by experienced, specialist nurses trained in paediatrics and tracheostomy. However, this was not the case.

Anne was alarmed by the lack of experience of the nurses who seemed to be agency nurses provided by Primecare. She insisted a training session on paediatric tracheostomy care was provided but was shocked to see one of the nurses, Joyce Aburime, not paying any attention and doing a crossword during the training talk given by a nurse from GOSH.

Elizabeth’s death

On the 4th of December 2001, the very first night Joyce Aburime cared for Elizabeth, Anne and Graeme were woken in the morning with Aburime on the landing, holding Elizabeth and shouting “Oh my God, Lizzie. Oh my God.”

Anne took Elizabeth from Aburime, placed her on oxygen and prepared to suction her but she was unable to because the tracheostomy tube was blocked. Anne changed the tube, but nothing happened, and Elizabeth was unresponsive.

Anne called 999 for an ambulance and paramedics arrived on the scene. Their records show Elizabeth was asystolic (no heartbeat) and her pupils were dilated throughout the journey to Frimley Park Hospital’s A&E department. Tragically, Elizabeth was dead, just 10 days before her first birthday.

In a highly unusual and inappropriate sequence of events, a consultant responsible for Elizabeth’s care drove Anne and Graeme home in his car, with Elizabeth’s body in their arms, leaving them on their driveway. To the Dixons’ great distress, accompanying them in the car was Joyce Aburime, the nurse who they held responsible for Elizabeth’s death.

The same doctor who had driven them home from the hospital insisted Elizabeth had died peacefully of natural causes and there was no need for a post-mortem, but things just did not add up.

Only after the initial shock had subsided, did the couple begin questioning how Elizabeth’s death had happened.

Trying to get answers

However, it seemed no one would answer the couple’s questions or address their significant concerns about the circumstances surrounding Elizabeth’s death. Instead, their phone calls were not returned, and they felt abandoned by all the agencies involved in Elizabeth’s care.

Elizabeth was cremated on the 11th of December 2001. There was no post-mortem and no inquest, despite the fact the Dixons knew the cause of death was suffocation due to a blocked tracheostomy tube. They expected an investigation but none was forthcoming. Instead, the family’s health visitor took Elizabeth’s drug charts and Primecare took all the nursing notes away.

The Dixons went to Hampshire Police for help in 2005. The force considered manslaughter charges against Aburime and a Primecare manager but in July 2007, the Crown Prosecution Service ruled there was no realistic prospect of a conviction because an unnamed independent expert claimed natural causes could not be ruled out.

An inquest was eventually held in December 2008, but not one of the nurses Primecare sent to look after Elizabeth was called as witnesses. No Primecare managers or anyone involved in commissioning Elizabeth’s care or planning her discharge from GOSH were called either.

Relevant aspects of Elizabeth’s case appear to have been missed out or glossed over and the couple started to think there had been a cover-up. They began their own investigation in earnest, facing hostility and intimidation at every turn.

In August 2011, while Anne was investigating the cause of Elizabeth’s death, she was unlawfully arrested, strip-searched and locked in a cell by Hampshire Police.

Dixon Inquiry: In search of the truth

In 2014, a joint investigation by NHS England and the Care Quality Commission (CQC) was announced but NHS England pulled out. The CQC then undertook its first-ever thematic review, using Elizabeth’s case as the basis.

Among other findings, the CQC found all but one of the hospitals reviewed did not have policies in place to manage high blood pressure in children.

The Parliamentary and Health Service Ombudsman (PHSO) then said it would investigate, including looking into any criminality surrounding Elizabeth’s care and death. It pulled out after drawing up the terms of reference.

In September 2015, Jeremy Hunt, the then Secretary of State for Health and Social Care, ordered an independent inquiry saying the Dixons had been “passed around the system for far too long.”

In February 2017, Jeremy Hunt asked Dr Bill Kirkup, who led the investigation into poor care at Morecambe Bay and who is heading up the investigation into the East Kent maternity scandal, to examine Elizabeth’s case.

It is hoped that after nearly 19 years of fighting for the truth, Anne and Graeme will finally get some answers when Bill Kirkup publishes his Dixon Inquiry report later this year.

Anne and Graeme want to know the truth about what happened to Elizabeth. They want Elizabeth’s legacy to be a positive one to ensure other families are told the truth.

When investigations occur they want them to be open, honest and transparent and want changes to be made to prevent other babies and young children being brain-damaged or fatally harmed so that all patients who need it receive safe care. Above all, they want to ensure no other child suffers in the way Elizabeth did and that no other family has to battle to be told the truth.

If you would like more information on how Novum Law’s specialist legal team can help if you have concerns about you or a loved one’s treatment, call Freephone 0800 884 0777 or email info@novumlaw.com.