Northern Ireland

Hyponatraemia Inquiry: Grieving parents feel health department has done nothing

In 1996 doctors told a young Belfast couple that "everything possible" had been done for their nine-year-old daughter who died after being admitted to hospital with a tummy bug 48 hours earlier. A public inquiry however revealed a "cover up" of catastrophic medical failings and that her death could have been prevented. Seven weeks on from those findings, Alan and Jennifer Roberts speak to The Irish News about their devastating loss and continuing pursuit for justice.

Alan and Jennifer Roberts, who lost their nine-year-old daughter Claire in 1996. Her death at the Royal Victoria Hospital for Sick Children in Belfast and is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.
Alan and Jennifer Roberts, who lost their nine-year-old daughter Claire in 1996. Her death at the Royal Victoria Hospital for Sick Children in Belfast and is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Pic Alan and Jennifer Roberts, who lost their nine-year-old daughter Claire in 1996. Her death at the Royal Victoria Hospital for Sick Children in Belfast and is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.

"You look at doctors in the eye and you think they are telling the truth, you accept what they are telling you. They said unfortunately Claire had a brain virus, it caused her brain to swell…we now know that was total fabrication and that was a lie." - Alan Roberts, who lost his only daughter to hospital failings in 1996.

In the front porch of the east Belfast home where little Claire Roberts grew up, a small plaque hangs with the words of the 1930s classic You Are My Sunshine.

It was her grandfather's favourite which he sung to her as a baby.

The "very, very happy" nine-year-old girl went to school on a Monday morning 21 years ago and sat singing as she watched her classmates at swimming lessons. She was excused from the weekly session as she felt a little unwell.

Within 48 hours Claire was pronounced dead at the Royal Belfast Hospital for Sick Children. She had been admitted with a vomiting bug and was dehydrated.

While diagnosed with epilepsy as a baby, she had not suffered a seizure for years and no longer required medication - she was in fact "thriving".

In a packed Belfast hotel room seven weeks ago, her devoted parents, Alan (59) and Jennifer (58), listened to a high court judge describe how two consultants attempted a "cover up" into the failings around their youngest child's care. Crucially, he found her death could have been prevented.

The Tor Bank pupil, who loved trampolining, was one of five children whose hospital deaths were investigated by Sir John O'Hara as part of a 14-year public inquiry into whether they were given lethal doses of intravenous fluids.

The Roberts attended every day of the two-year public hearings in Banbridge, listening to evidence not just for Claire but all the children.

It emerged doctors had misdiagnosed the little girl, heavily sedated her with the wrong drugs and then overdosed her with IVfluids.

"In effect Claire was put to sleep by the sedatives and then the fluids caused the brain swelling," said Mr Roberts, whose "telling" research on the level of his child's overdosing was singled out by Mr Justice O'Hara in his report.

In one of the most devastating assessments of the Northern Ireland health service, the inquiry found there was an "indefensible culture" in which doctors and NHS managers were more concerned with protecting their own reputations and "avoiding scrutiny" than learning lessons. It concluded that four of the deaths were "avoidable".

Mr Justice O'Hara pointed to how the truth had to "dragged" from some of the medics who gave evidence.

For the Roberts, their only daughter's passing and pursuit of the truth has "dominated their lives" and that of their two sons, Gareth and Stuart.

"It's been the most horrendous journey," said Mrs Roberts.

"It has had a massive impact on my two sons, they were only 11 and 13 when it happened. We tried to protect them they but they struggled into their adolescence and university years."

Sitting in the living room of their pristine family home, three hefty volumes of the inquiry report along with bundles of well-thumbed emails and correspondence going back over a decade rest on a table near framed family photographs.

Nine-year-old Claire Roberts died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. A public inquiry found her death could have been avoided. Picture by Mal McCann.
Nine-year-old Claire Roberts died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. A public inquiry found her death could have been avoided. Picture by Mal McCann. Nine-year-old Claire Roberts died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. A public inquiry found her death could have been avoided. Picture by Mal McCann.

"You can't switch off from it. You don't," said Mr Roberts who left his job as a design engineer when the oral hearings started in 2012.

"We were in our thirties when Claire died and then we spent all of those years asking for the truth - and then the for the truth to be denied and having to be dragged out of doctors at the inquiry.

"When you lose a child your mind doesn't think straight, your body goes into shock. Your emotions take over. You're dependent on people that you can trust to be open and honest with you... In many ways when you look at it, the doctors exploited our grief. They used that as a mechanism to cover up Claire's death, which is sinister. It goes against their values of openness and transparency."

The couple say they welcome the findings of the report and wrote to Mr Justice O'Hara who they had "every faith" in.

However, they are concerned about the lack of progress - given that a "dedicated team" and "action plan" announced by the Department of Health to roll out its recommendations have yet to appear.

They are also demanding answers as to what action will be taken against those health professionals involved in their daughter's care who "covered up" their mistakes for almost 20 years.

"For us the next stage should be criminal prosecutions. There are no ambiguities in the language used, there was a cover up," added Mr Roberts.

Since the release of the inquiry there has been "silence" from health service officials, with no contact made with the family.

This inaction led to Mr Roberts requesting a meeting with Richard Pengelly, the most senior civil servant at the Department who is overseeing the action team. The meeting took place just over a fortnight ago and was also attended by the other families.

Read more: Landmark inquiry into children's hospital deaths exposed "extraordinary failures"

However, the couple said they came away more frustrated as they "couldn't get a direct answer" on any planned action against the health professionals named in the report.

"We're now seven weeks down the line and nothing that we can see of any weight has been done. They're trying to set up teams and committees," said Mr Roberts.

"Within days or within weeks we feel the doctors linked to the cover up should have been suspended. The fact that hasn't happened directly has been very frustrating. It brings more anguish and turmoil back into our lives again.

"We thought that maybe the Belfast trust or the Department of Health would get in touch after the report's release. We thought there might be something from the Attorney-General because there will have to be a fresh inquest into Claire's death.

"But nothing happened, there was no approach from anyone. I decided to approach Mr Pengelly as he is the most senior person in the health service."

Alan and Jennifer Roberts, parents of Claire Roberts (nine) who died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.
Alan and Jennifer Roberts, parents of Claire Roberts (nine) who died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Alan and Jennifer Roberts, parents of Claire Roberts (nine) who died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.

The central recommendation by Mr Justice O'Hara is the introduction of a duty of candour, which would compel all health professionals to admit patient failings and may be open to criminal sanctions if they do not.

However, Mr Roberts said he has "real concerns" as to whether this law will be introduced given the powerful influence of the medical profession.

"This act will be the legacy of the inquiry but I have a feeling it will be diluted and the duty of candour will be imposed on an organisation, not an individual and with no criminal sanction. This falls way short of what Mr O'Hara requires."

He added that anyone he talks to "simply can't believe" there's no legal responsibility on a doctor in Northern Ireland "to tell you they've caused harm".

The couple say they are aware that many of the doctors and nurses most heavily criticised continue to work in Northern Ireland hospitals.

"The evidence is so clear cut in the report. There are doctors and management who are heavily implicated in what we feel is the biggest scandal ever to hit the Northern Ireland health service," Mr Roberts said.

"It is an insult that we're still having to ask what is ask what action is going to be taken against these individuals...but we're more than determined to keep asking and keep going for Claire."

In the tidy room there is one corner where bundles of toy helicopters and blue lego are stacked. They belong to Adam, the couple's only grandchild.

"The one wee light that keeps us going is our three-year-old grandson. Unknown to him, he is our distraction. He doesn't know any of this and comes here to fly his helicopters. We are very lucky to have him," says Jennifer.

A spokesperson for the Department of Health said on Friday: "The department intends to release further information next week on its ongoing work in response to the inquiry into Hyponatraemia-related deaths."

Claire Roberts was nine-years-old when she died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.
Claire Roberts was nine-years-old when she died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann. Claire Roberts was nine-years-old when she died in 1996 at the Royal Victoria Hospital for Sick Children in Belfast. Her death is one of the five child deaths between 1995 and 2003 investigated by the Hyponatraemia Inquiry. Picture by Mal McCann.