Parents angry over 'drip feed' of information from Children’s Health Ireland, says advocacy group

Vivienne Clarke

The co-leader of Spina Bifida and Hydrocephalus Paediatric Advocacy group, Una Keightley said TDs will be in the Dáil on Wednesday talking about the Temple Street review.

“They will all be there with their sad little faces and the shoulders dropping, but that’s no good to the children,” she told RTÉ radio’s Morning Ireland.

Parents were terrified and very angry with the “drip feed” of communication from Children’s Health Ireland over the last few days, they still did not have a “clear story” and there appeared to have been a “mismatch of information.”

It comes as the HSE announced an external review into spinal surgery at Temple Street Hospital following a number of poor outcomes including the death of a child.

It follows the publication of a Children’s Health Ireland (CHI) report on spinal surgery for spina bifida patients at the hospital.

Ms Keightley said parents had not been consulted during the last external review, she said despite their “lived experience” as carers and advocates for their children.

“The devil's in the details, listen to us when we're telling you who needs to be included in this review and what needs to be in the review, Listen to us, the national clinical guidelines state that the patient voice should be front and centre. The last external report did not interview one parent, not one

“How can we be expected to put our signature on a dotted line for consent to hand over our children if we have no idea what is going on? Every stone needs to be overturned in this. People deserve answers. Parents deserve answers.”

Ms Keightley said that parents already had enough hats to wear. “We’re parents, we’re carers, we shouldn't have to be advocates.”

Many of the children awaiting surgery were in “a dire state”, they were in pain, they did not fit their wheelchairs, they could not sit in car seats.

“You cannot fathom how difficult this is for parents trying to navigate this, while at the same time trying to protect their child.”

When asked about the possibility of children being sent abroad for surgery, she said that it was difficult for children with such complex needs to travel. They had to bring medication, battery packs if they are on a ventilator. This would be fine if medical support was given for travel on their return

“It is an option that we're willing to discuss, but we're not going to be sent abroad to outsource your problem and then arrive back in Dublin Airport with broken wheelchairs that don’t fit our children and just being left. Okay, surgery’s done, off you go home and best of luck.”