Parents urge release of 'unpublished reports' on CHI spinal care scandal

'For any inquiry to be whole, families cannot be asked to engaged while being denied access to the same reports held by the State,' says advocacy group

Claire Cahill, of the Scoliosis Advocacy Network, with Amanda Coughlan and Una Keightley, of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group. Picture: Conor Ó Mearáin/Collins Photo Agency

Parents of scoliosis patients have urged the Government to show them expert reviews, which they claim are being kept from them, ahead of the terms of reference for a statutory inquiry being drawn up.

One advocate told the Irish Examiner that if they are not aware of all the information surrounding the scoliosis scandal, they cannot ensure that justice is delivered for children.

The Government confirmed last year it would launch a statutory inquiry into scoliosis and spina bifida care at Children’s Health Ireland (CHI), following meetings between Tánaiste Simon Harris, health minister Jennifer Carroll MacNeill, and the parents of the late Harvey Morrison Sherratt.

As part of those discussions, it was agreed that the Government’s appointed facilitator, Remy Farrell SC, would engage with stakeholders “on scoping the content of potential terms of reference for an inquiry”.

However, Claire Cahill, co-founder of The Scoliosis Advocacy Network, has now called on the Government, Ms Carroll MacNeill, and Mr Farrell to ensure all unpublished reports on the recent spinal scandals are provided to the families so that they can be fully informed while drafting terms of reference.

This includes a report by Selvadurai Nayagam reviewing elements of the paediatric orthopaedic surgical service at CHI and the National Orthopaedic Hospital, Cappagh.

The first phase of the review was completed in February and saw the recall of 62 children for spinal care at CHI following a review of the care of 91 children who underwent surgery performed by a named consultant.

Knowledge gap

Ms Cahill expressed fears that this knowledge gap would prevent the establishment of the best possible inquiry for their children.

She said: “For any inquiry to be whole and to bring back good results for our children, families cannot be asked to engage in the inquiry while being denied access to the same reports held by the State.

“There are lots of unpublished reports that the State and the facilitator for this inquiry have access to. Yet they expect us as families to sit at the table and formulate terms of reference without access to the information.”

To have a fair process, families should be able to access the same information, she said, adding: “We have written to the minister and also to the facilitator, Mr Remy Farrell, asking for these reports to be issued for us to do justice for the children who have suffered hugely for more than a decade.

“We need to have access to this information so that we can sit down and, from the start, make it from the start a good process.

“Otherwise, we may end up with an inquiry that doesn’t really serve the needs of our children.

These unpublished reports belong to the children. They are the children’s data. In order for us as advocates and groups to do justice for the families we represent, we must have access to all of the data held by the State.

“We could actually all miss really important issues because we’re not aware of them.”

A Department of Health spokesperson said that work on this scoping exercise commenced on March 3 and will run for up to 16 weeks.

They said: “[On Tuesday] both Houses of the Oireachtas approved data protection regulations for this scoping exercise, which will allow the facilitator to process personal data and meaningfully engage with all stakeholders.”“The minister is in engagement with the facilitator on the necessary material required for his scoping exercise.”