Parents repeat request for CHI board to be stood down in 'constructive' meeting with minister

Claire Cahill, of the Scoliosis Advocacy Network, with Amanda Coughlan and Una Keightley, the co-founders of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group, all met with the health minister on Monday. File Picture: Conor Ó Mearáin/Collins Photo Agency

The health minister has been urged to further investigate problems with spinal care at Children’s Health Ireland (CHI) hospitals by families who met her on Monday.

Parents whose children rely on the hospitals for care and surgery said they had a “constructive” meeting with Jennifer Carroll MacNeill for over an hour.

Amanda Coughlan Santry and Una Keightley, the co-founders of the Spina Bifida Hydrocephalus Paediatric Advocacy Group, were among those attending the meeting.

“We’d a very constructive meeting, we went in with the aim of full disclosure and that’s exactly what happened,” Ms Coughlan Santry said afterwards.

She added: “We again requested that the board should be stood down, and we highlighted why the board should be stood down.” 

The board — which has oversight of care at children’s hospitals at Crumlin, Temple St, and Tallaght — came under fire after publication of a damning report by health watchdog Hiqa this month.

The chairman of the board, Dr Jim Browne, has stepped down.

The families feel more resignations are warranted based on “historical failures for the last 10 years”, Ms Coughlan Santry said.

Nayagam report

The families also shared concerns a separate review by Selvadurai Nayagam of spinal surgery care is not yet complete, having started in October 2023.

An interim report had been promised when this was set up, but so far nothing has been published.

“We also asked her about the Nayagam report. We know that is outstanding and the hip dysplasia audit report is outstanding,” she said.

We asked for the minister to have all reports expeditated and delivered as quickly as possible. She said they are independent, but she would ask

They highlighted, Ms Coughlan Santry said, “how poor communication is” with the young patients’ families.

“I don’t think asking for an interim report is unreasonable, considering Hiqa has come in and come out and done its report in a timely manner,” she said.

The audit of hip dysplasia procedures is continuing according to CHI. It previously said families are already bring called back for further check-ups.

Ms Keightley said the meeting was over an hour, and they had time to raise a number of issues which the minister pledged to “reflect” upon.

They were relieved to have the chance to discuss the problems openly with the minister for the first time since she took office earlier this year.

'Grave' concerns

“We also highlighted other concerns,” she said, describing these as “grave” and saying they asked the minister to look into these new claims and come back to them within two weeks.

Parents in the Scoliosis Advocacy Network, including Claire Cahill, also met the health minister on Monday in Dublin. 

A spokesman for Ms Carroll MacNeill said she will meet with a number of scoliosis and spina bifida groups this week.

“The minister restated her commitment to drive further improvements in access, capacity, and patient communication within our spinal services,” he said of Monday’s meeting.

She also repeated her commitment to “reduce waiting times for children and adolescents awaiting surgery for conditions such as spina bifida and scoliosis," he said. 

Health watchdog Hiqa raised concerns about governance and clinical oversight across hospitals in the CHI group in its report.

It said controls over use of medical devices "did not provide the necessary adequate safeguard". 

It also found children were not protected from the risk of harm in a report that caused distress to families affected and others.