Parents say little has changed, a year since CHI spinal care controversy erupted

Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group co-founder Amanda Coughlan Santry. Picture: Ray Ryan

One year after “a huge scandal” erupted over spinal care at Children’s Health Ireland, parents say little has changed with children still facing long delays.

It had emerged non-medical devices — springs — were placed in three children along with broader concerns around waiting lists and safety. 

Up to July, 287 children were waiting for some form of spinal surgery with 258 surgeries done so far this year.

Co-founder of Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group (SBHPAG) Amanda Coughlan Santry said: “It was a huge scandal last year, and we are no further closer to having an answer.” 

The delays affect families around Ireland even though only some such as mother Gillian Sherratt, go public, she said.

“Even though one child is one child too many, you are talking about hundreds of children, and is the state really willing to stand over that?” she asked.

She said their families are frustrated describing how one family sent for out-sourced care at a London hospital was placed in a hotel where the lift was too narrow for a wheelchair. 

They therefore had to re-locate.

An ongoing audit by the HSE of a €19m package given to CHI for spinal care is another concern for the famiilies. 

Health Minister Stephen Donnelly has said this money was used more broadly across CHI.

A number of other reviews continue, including an external review by Liverpool-based surgeon Selvadurai Nayagam.

“Let’s have full accountability, full transparency,” said Ms Coughlan Santry. 

Allow the chips to fall where they are, publish all the reports, don’t redact them, apologise and put the right people in place to put this right. 

Ms Coughlan Santy, co-founder Una Keightley and founders of the Scoliosis Advocacy Network will meet with politicians at Leinster House on Wednesday.

A CHI spokeswoman said “all options” for out-sourcing care for children on waiting lists are now being considered due to the high demand.

Some children have been deemed suitable for surgery at one of two hospitals in London and another in New York as well as the Blackrock Clinic in Dublin.