We have been failed by every agency possible

Anne and Graeme Dixon, from Church Crookham near Fleet in Hampshire, have been fully vindicated by an inquiry which found that their baby daughter’s avoidable death was covered up by NHS staff and organisations.

Elizabeth Dixon would be a young woman now, studying for a degree at university or starting a career. For her parents, the two decades since her death have been one long painful battle for answers.

The inquiry was only commissioned after criticisms of every major regulator. Speaking to The Independent following the publication of the report, the Dixons said they believed there was a need for a new body with the power to investigate cases.

Lizzie’s mother, Anne, 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 added: “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.”

“Along our 19-year journey to find the truth, we have been failed by every agency possible.  We have had to spend many years working tirelessly ourselves to gather and piece together the evidence of what happened to Lizzie and the 19-year cover-up that ensued. It is inconceivable to us that not one of these earlier agencies knew, or suspected, the truth. The evidence was there. We have been treated appallingly.

“Over the years, we have unearthed a significant amount of evidence about the circumstances which led to Lizzie’s painful and needless death; some of this was not used by the inquiry. While we are pleased to see the recommendations put forward and that some of the blatant lies, deception and cover-ups of mistakes and incompetence have been called out, we are disappointed that certain aspects of Lizzie’s care and the cover-up have not been addressed.

“We hope that in due course we will be given the remaining answers. We cling to the hope Dr Kirkup’s report will do enough to ensure that lessons are genuinely learnt and that these are put into practice and that there is an honest and robust commitment, set out in law, that there is no longer a place for deception or dishonesty by the professionals and organisations we all place our trust in.”

Elizabeth was left with permanent brain damage after doctors and nurses at both Frimley Park Hospital in Surrey and Great Ormond Street Hospital failed to manage her dangerously high blood pressure.

The Dixons hope that Dr Kirkup’s inquiry will help to highlight the dangers of high blood pressure in children. High blood pressure was also a factor in the death of Jasmine Hughes at Great Ormond Street Hospital 10 years after Elizabeth’s. It has also been alleged that Jasmine’s death was subject of a cover-up.

In a joint statement, the Dixons added: “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, and we want to ensure safer hospital and community healthcare for very vulnerable, disabled people, so that no other patients suffer in the way Lizzie did from inadequate and inappropriate care during her short life.

“No other families should have to witness such horrific events and lose cherished loved ones in this way, nor should they have to suffer the hell we’ve been through to learn the truth. Cover-ups must stop now.”

Mary Smith, associate legal director at Novum Law, who have supported the family for the past six years, said Dr Kirkup’s report “publicly exposes the deeply shocking events that led to Elizabeth Dixon’s brain injury, her death and the almost 20-year cover-up that ensued”.

She added: “Any attempts by individuals or organisations to cover up events, whitewash the truth or attempt to bury or conceal facts is utterly abhorrent and wholly unacceptable. The secondary harm caused to families by these cover-ups is immense.

“What we need to do now is threefold.  Firstly, we must urgently roll out national guidelines and training for the monitoring and management of blood pressure in babies and children, so that preventable brain injuries like Elizabeth’s no longer occur.  Elizabeth is not the only child to have suffered in this way, nor is she the last. Changes must be made.

“Secondly, we need to ensure that the commissioning of continuing care packages is done safely and that commissioners and managers are held to account and not absolved of responsibility when things go wrong. Very sadly, the failures in Elizabeth’s care package are not an isolated incident and today there are vulnerable babies, children and adults with community care packages that are inadequate and do not meet their complex needs. This must change.

“Finally, where healthcare or poorly commissioned or managed care packages lead to harm, a full and frank independent investigation must be carried out at the outset. This is essential if we are to ensure that cover-ups like this are exposed at the earliest opportunity. This must stop. These measures are vital if we are to ensure that when things go wrong, lessons are truly learnt and the risk of future harm is prevented.”

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