What lessons can be learned from Hayley Fullerton’s death?

Hayley Fullerton had just turned one when she died from heart failure after undergoing corrective surgery for a condition she had been born with.

According to the family’s solicitor Birmingham Children’s Hospital have now admitted full liability after her parents and grandparents repeatedly warned staff that her condition was deteriorating.

It is a tragedy that has been compounded – yet again – by a system that prevails in the National Health Service, in which families have to fight until they are beyond exhaustion to be listened to.

Paula Stevenson – Hayley’s mother – and her family fought for three years for answers. Still it is not over for them

While the hospital has admitted mistakes were made, the coroner has today returned a narrative verdict only finding “serious failures but not amounting to neglect”.

Hayley was born in Belfast at the Royal Victoria. Her serious heart condition had been detected 22 weeks into the pregnancy. Shortly after birth she underwent surgery but her parents were warned she would need more.

Her condition meant blood could not get from her heart to her lungs.

So on 12 October 2009 she was admitted to Birmingham Children’s Hospital – a centre of excellence and one of the few centres worldwide capable of performing the complex operation.

The operation went well and 17 days later she was transferred from intensive care to a general ward – ward 12. Her mother says that while she had been apprehensive, Hayley appeared to be improving.

But she was then moved to ward 11 and from then on, the family says, problems emerged. She was placed in cubicle one, furthest away from the nursing station. Ms Stevenson said she believed she was being punished because she had been reluctant for Hayley to be moved.

This has been denied by the hospital.

About five days later, though, the family felt Hayley’s condition was deteriorating. She developed breathing complications but these were not treated. And it is at this point the story becomes all too familiar.

Hayley’s mother says she was accused of crying wolf when she pleaded with staff to help. She says she even became so desperate she tried “bribing” a nurse with a £100 shopping voucher to pay her daughter more attention.

She said that over a period of seven days nurses ignored her pleas and that she was made to feel like a paranoid parent.

The coroner for Birmingham and Solihull, Aidan Cotter, did not entirely support this in his findings but he did find a series of failures:

Nobody asked why she still needed oxygen so long after her surgery, why a chest x-ray was not ordered earlier and when it was, why it took so long to review, why physiotherapy was not started as soon as a doctor ordered it?

He also said there was a failure to fill in the medical charts properly and accurately and consultants did not check these. Nor was it explained to the family why Hayley was put into isolation after concerns about swine flu.

Crucially, he asked why Hayley was not referred back to paediatric intensive care on 9 November. While he says nobody knows if she would have recovered or even if she would have been admitted – but that chance to know was denied and Hayley died from heart failure on 11 November 2009 .

He found 10 failures but he decided that none of them was a “gross'” failure. To the amazement of the family.

The hospital held its own inquiry and among other things found that there was a hierarchical culture amongst staff and a misunderstanding about when a patient could be referred back to intensive care.

The trust said today in a statement: “When Hayley died , we recognised that some of our care fell below our usual high standards and for this we offer a heartfelt apology for the distress caused.

“We have taken all the steps possible to learn from this. We have gone beyond the recommendations of our investigation and improved the way we do things to ensure that no children or families experience anything like this again.”

They do not say what these improvements are. But the family are sceptical. However, they have some ideas themselves on how to stop another family being ignored.

They call it Hayley’s Early Warning System (Heal). It’s a website they’ve set up to help parents ask for a second opinion and, quite frankly, be listened to.

Today Hayley’s mother said she had not had time to grieve for Hayley. She said the hospital needed to show more humanity and compassion.

Hayley’s grandfather Edward Stevenson, who was there throughout Hayley’s time in hospital and has been through the entire inquest, said today that with all the evidence put in front of him, the coroner should have reached a far stronger verdict.

“We will carry on as far as we can to secure that no other family has to come through what we have had to endure.”

But, sadly – again – the same story has been heard from Mid-Staffordshire Trust and, indeed, from numerous other stories I have covered.

Families do not go to the law because they want money. They go because they want changes made.

It grieves me but not anywhere near as much as it grieves the families of those involved.