Parents of children with undescended testes not told of cancer risks

Parents of children who were placed at a “real and known risk for cancer” due to delayed treatment for undescended testicles were not told about a report into the concerns, the health committee has been told.

Lucy Nugent, the chief executive of Children’s Health Ireland (CHI), told the Oireachtas Committee on Health that the parents did not meet the threshold for open disclosure.

Executive and senior clinicians from CHI appeared before the committee on Thursday to update politicians on spinal surgeries, a review of hip surgeries and other governance issues at CHI.

The committee was told that concerns about orchidopexy – a surgical procedure to correct undescended testes – were raised in an unpublished report.

Sinn Fein TD David Cullinane said that despite young patients being put at a real risk of fertility issues and cancer later in life due to delayed treatment, parents and families were not told about the risks, nor a report into the concerns.

Mr Cullinane said: “(The report) says, despite an existing alternative options being available for quicker treatment, patients with undescended testes who require this procedure are waiting far in excess of the recommended time frame for treatment, placing those patients at real and known risk for fertility issues and or cancer in later life.

“I mean, that’s shocking that that can happen.”

Asked why the report was not published, Ms Nugent said the anonymised report made no sense.

Mr Cullinane said “the patients were placed at real and known risk for cancer” but parents were not told about the report.

It was also confirmed that families were not made aware of a report about concerns relating to the care of children under CHI, and other parents were not told about a separate report about concerns raised regarding oncology, which was completed in August 2021.

Mr Cullinane said that was “profoundly shocking”.

Mr Cullinane said that the full breadth of crises and scandals that have hit the CHI has left it “almost impossible” to give any justice to the families.

“We had the Boston review, we had the HIQA review into the use of non-medical grade springs. We have a waiting list still for children with spina bifida and scoliosis. We had an audit into hip dysplasia, potentially hundreds of procedures that were carried out unnecessarily.

“We have this unpublished report, which cites concerns in relation to oncology, urology, orthopaedics, a lot of different issues. It’s frightening what was happening in CHI and families, I have to say, feel very let down.”

The committee was also told that the CHI does not accept that a report on waiting list irregularities and a “toxic” work culture at a hospital run by the CHI met the threshold to be referred to gardai.

The report, which has not been published, has been reported in some media outlets.

Kate Killeen White, the regional executive officer for the Dublin and Midlands health region, confirmed that the HSE referred the report to gardai.

She told the committee that CHI has since verbalised an opinion that it doesn’t believe it meets the threshold for referring it to gardai.

Mr Cullinane said he found that “extraordinary”.

He added that he could not accept that there has been a cultural shift within the CHI following the revelations.

Earlier, Ms Nugent apologised to children and families affected by practices and governance issues at CHI.

Ms Nugent, who joined as chief five months ago, said she was sorry on behalf of the management of CHI and “I am sorry on behalf of the entire organisation”.

A clinical audit of surgeries for dysplasia of the hips in children found that a lower threshold for operations was used at CHI Temple Street hospital and the National Orthopaedic Hospital Cappagh (NOHC) than the threshold used at CHI Crumlin.

The review discovered that in the period 2021 to 2023, almost 80% of children operated on at the NOHC, and 60% of those at Temple Street, did not meet the threshold for surgery.

Around 2,200 families whose children had surgery since 2010 have been written to and told they will be offered a medical review.

Dr Martin Daly, a Fianna Fail TD and health spokesman for the party, said there is “zero confidence” in the board of the CHI.

Dr Daly, who has been a doctor for 40 years, said the “sense of gravity” of what happened to the children was not reflected in Ms Nugent’s statement to the committee.

He added that what happened to the children was “scandalous”.

“This is about the whole system failure, and when you talk about moving into CHI, the new hospital, 2.5 billion, it’s like having top-of-the-range hardware for your computer and the software is rotten,” he said.

“There’s no other way to put it, and I don’t think you imparted the sense of realisation of the anger.

“There is a whole generation of children who have been operated on who shouldn’t have been operated on, on spurious evidence without proper audit and without proper governance.”

He said that it all happened under the watch of Eilish Hardiman, the former chief executive of the CHI, who attended the committee hearing.

Ms Hardiman is now CHI’s strategic programme director.

“Miss Hardiman, you were there, it looks like under your regime, you were rewarded for substandard management of the hospital, and I am saying that strongly, because all of this happened under your watch,” Dr Daly added.

“I have to say there is absolutely zero confidence in the CHI board, zero confidence in the management, notwithstanding the changes you’ve outlined Ms Nugent, but there is zero confidence.”

Becoming emotional, Ms Nugent said it keeps her awake at night.

“If I in any way did not convey the gravity of the situation, I apologise. It keeps me awake,” she added.

Taoiseach Micheal Martin said that the Minister for Health, Jennifer Carroll MacNeill, has strengthened the governance around CHI.

He told RTE Radio 1: “There’s a huge task to restore confidence in CHI as we move to the new (children’s) hospital and that transition work has been underway for some time.

“What has happened is absolutely unacceptable and very, very worrying.

“The Oireachtas committee today is correct when you insert springs, for example, into a child, or medical devices that didn’t have any quality approval from approved quality procedures. That’s extremely serious.

“The dysplasia issue is extremely serious and the other authorities, you know, the Medical Council, really have to take on board what has happened here.”