Pair whose child was at centre of life support dispute criticise hospital specialists

Two doctors whose six-year-old daughter died while at the centre of a High Court life support treatment dispute have criticised specialists and hospital bosses involved.

They say they are making complaints about the care their daughter received at a hospital run by the Newcastle upon Tyne Hospitals NHS Foundation Trust and about the way they were treated.

The girl’s mother says her middle-aged husband was at one stage barred from the hospital after complaints about his behaviour.

She says he was also at one stage arrested by police and handcuffed at the hospital.

The couple say security guards wearing stab vests were nearby when their daughter was dying.

They say the way they were treated was “cruel”.

Trust bosses have offered their “heartfelt sympathies” to the couple.

They say their priority is to always act in patients’ best interests.

Detail of the case emerged in September when a judge based in the Family Division of the High Court in London was asked to make decisions about the girl’s future.

Trust bosses asked for a ruling after doctors said the girl should stop receiving life support treatment and move to a palliative care regime.

Her parents disagreed.

A number of judges considered issues at preliminary hearings but the girl died before a trial could be staged.

They were told that the girl had a “severe and progressive life-limiting neuro-degenerative disorder” and was in a terminal condition.

Barrister Sophia Roper, who led the couple’s legal team, told one judge that relations between them and specialists had “irretrievably broken down”.

The couple do not want their daughter to be named in media reports of the case.

Judges have made a reporting restriction order which prevents the girl being identified.

That order had also prevented the trust being named while litigation was ongoing.

The case had echoes of other high-profile treatment disputes involving children, including Charlie Gard, Alfie Evans, Isaiah Haastrup and Tafida Raqeeb.

Judges ruled that Charlie, Alfie and Isaiah should be allowed to die.

In October, Tafida’s parents were given the go-ahead to move her from a London hospital to one in Genoa, Italy.

“My daughter definitely did not get the care she deserved,” said the girl’s mother.

“We are in the process of writing a formal complaint about the way my daughter was medically treated but also in terms of the way management behaved towards us.”

She said she and her husband were treated “far from fairly”.

“The culture was one of gaslighting and deliberately exaggerating the nature of interactions with medical staff in order to discredit us,” she said.

“This started when we raised concerns about the poor standard of care our daughter was receiving.”

She added: “We were told we did not want to be ‘those parents’.”

The girl’s mother said her husband, a doctor for more than 30 years, was barred from the hospital where their daughter was being treated for a period of time after complaints about his behaviour.

She said at one stage police were called and he was arrested and handcuffed.

“That happened at a time when we thought life support was being withdrawn and our daughter might be dying,” she said.

“The way we were treated was cruel.

“My husband wasn’t being aggressive and he didn’t assault anyone.

“No charges were brought, but being arrested made him ill. He ended up in hospital himself.

“Calling the police and having parents excluded is completely absurd when their child is critically ill.”

She added: “On the day our daughter died, security guards wearing stab vests were posted in the vicinity.”

A trust spokeswoman said in a statement: “We would like to offer our heartfelt sympathies and condolences to the family at this extremely distressing time.

“Our first priority is always to act in the best interests of our patients.

“Our clinical teams work hard with young patients and their families to provide optimal care for their individual needs and to reach mutual agreement on the best treatment.

“In circumstances when agreement is not possible, we do everything we can to provide support during what can be a very difficult and sensitive time.

“This can include offering discussion with independent managers and clinicians, consideration with our medical ethics team, and also obtaining second and third opinions from independent expert clinicians from other trusts.

“When these routes have been exhausted, the High Court process exists to provide an independent judgment by a specialist judge who will hear evidence from everyone involved, including experts, and the system requires and arranges separate representation for the child.

“We fully support and respect that legal process and only invoke it after serious consideration where it becomes clear that it is the appropriate and necessary option.”

The spokeswoman said on “very rare occasions”, when there was a risk to patients, relatives, visitors or staff, it was necessary to “seek help” from hospital security staff or police.

She added: “Regardless of other circumstances, our staff go to strenuous lengths to ensure that families’ wishes are respected throughout their lives, and as they approach the end of their child’s life.

“We make all possible efforts to ensure that this is as peaceful and dignified as possible.

“It is essential to maintain a safe and secure environment for our other patients and families and ensure that our clinical and nursing staff are able to continue to care for their very sick patients.”

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