Parents of children with scoliosis will not cooperate with a further review or the sharing of their children’s data unless the review is widened and the Taoiseach meets with them to discuss the terms of reference.
Michelle Long told RTÉ radio’s Morning Ireland that they did not share the confidence of the head of the HSE Bernard Gloster about the review.
“The review is far wider than medical issues. It needs to encompass licensing concerns, legal concerns, delays of waitlists, management of waitlists. It's far more than medical. Therefore, we don't believe that the objectives that are set out in the current terms of reference and with the review being conducted by just one medic is going to be adequate.
“In terms of the terms of reference of the report, who we need to meet is the Taoiseach. We're very happy to meet with Bernard and to give him the parent and patient perspective and maybe some information that he appears to be missing, judging by the interview that he gave yesterday.
"But when it comes to the report and an external review that needs to be carried out, it's the Taoiseach that we need to sit in the room with to discuss this. We really believe this is now a governmental issue. This is not just a medical issue.
“We've had no response at all to our requests for a meeting with the Taoiseach. We've seen quotes in the media saying that the Minister for Health will meet with us, but he himself hasn't got back to us or to our requests for a meeting. But as I said, this is what needs to happen. It's a governmental issue. I would call on the Taoiseach to listen to us and meet with us and ask why would he not meet with us? And that's the question we have. Why not meet with parents who are really worried about the care that their children are receiving.
“The Minister for Health has offered a 30-minute meeting on Friday, the 29th, in Dublin, which to be honest is offensive to us as a group of parents to travel a week after the event for 30 minutes. That's tokenism, and it's not what we're looking for. The Minister is the one that's heading up this scandal. if he can extend that meeting and bring the patient on board, then we'd be happy to meet."
If this isn't enough to meet with families, I don't know what is.
Ms Long added: “Our members do not want to cooperate with another review that essentially, if you look at the terms of reference is to review the previous three reviews. That is not what's needed here. So we won't be giving consent for data sharing of patients in the group for this current review at this time. And then the review will be very limited in what it can do. So essentially, we will not be engaging with the review or with sharing our patients, our children's data until we've met with the Taoieach to redefine the terms of reference.
“We'd implore the Taoiseach. He said when he took office, he was going to put children at the heart of government. He created the Department of Children within his department to the Taoiseach. If this isn't enough to meet with families, I don't know what is. This is a national scandal. We can't move forward until that happens. “
Ms Long said that families were out of their minds with worry. “Mums and dads, we’re just living a nightmare.” The issue went far beyond the 19 children whose cases had been reviewed, she said. There were hundreds of children with scoliosis and spinal issues. They and their parents were now worried if they could trust the system.
Ms Long also asked if there were safeguards in place.
The halting of surgery in Temple Street was going to put more pressure on Crumlin hospital, which was already “saturated and bursting at the seams” with its waiting lists, she said.
“It's going to impact everybody. It's a lot of concern. And their biggest issue is this drip feeding of information. No proper communication, and parents are left in the dark with what's happening with their own children.”
