Minister for Health Jennifer Carroll MacNeill has said she would like to see all groups affected by issues at Children’s Health Ireland (CHI) to engage with the independent facilitator, who is trying to scope out issues for a statutory inquiry.
The scoping exercise started in March, at which point the facilitator was appointed.
He initially wrote to various stakeholders introducing himself and inviting them to meet with him, once data protection regulations had been made which would allow him to process personal data and meaningfully engage with them.
The facilitator has made contact with a number of patient advocate groups, CHI, HSE management and the Department of Health.
Since then, two groups have said the process is flawed and that they cannot support it.
The groups say they represent over 900 families affected by the healthcare problems at CHI.
The minister said there are eight advocacy groups and one in particular has not engaged.
She said the independent facilitator Remy Farrell SC is available to engage with all of them and has written to the parties.
Minister MacNeill said the facilitator is looking at what the issues are that would be included in a statutory inquiry, what information is already available such as matters already the subject of different reviews, plus how inquiries might be held in public and how evidence is gathered.
Speaking at an opening of a new surgical hub in Swords, Co Dublin, she said the Government has not committed to any form of inquiry yet, and there are a range of models to examine.
Parents have said there were a number of unpublished internal CHI reports which were not being looked at as part of the inquiry.
Co-lead of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group Úna Keightley said that the group has written many times to the Minister for Health about the inquiry, but have not received a response.
Speaking on RTÉ’s Morning Ireland, she said they have been given “very little information” about it.
She said that most important people in this whole process are the children, and that it was agreed that older teenagers, between the ages of 16-18 could feed in to the inquiry to speak about their lived experience.
Listen: Families write to minister over CHI inquiry concerns
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She added that families were given assurances that the children and the families would be at the centre of that process.
“Unfortunately we feel that that hasn’t happened,” Ms Keightley said.
“Remy Farrell has access to CHI reports that unfortunately the families don’t, and we are being told that they will not be disclosed to us. We have very little information,” she added.
She said that families feel it is very difficult to sign up to a process where one person [the facilitator] has access to much more information than the other, and that there could be data considered non-disclosed in the reports that will possibly not be included in the inquiry.