Scoliosis and spina bifida: Families 'clear' about what they want from inquiry

A 2021 file photo of Amanda Coughlan Santry with her son TJ who suffers from spina bifida at home in Tullamore, Co Offaly. The support group she co-founded had a 'very positive, very constructive' meeting in recent days. Picture: Ray Ryan

Dozens of families have travelled from all over the country to band together ahead of an inquiry into care for children with spina bifida and scoliosis.

A facilitator has yet to be appointed for the inquiry, which will focus on spinal care at Children’s Health Ireland (CHI), in order to scope out potential terms of reference with families and other parties involved.

The meeting was co-hosted by the Spina Bifida and Hydrocephalus Paediatric Advocacy Group.

Co-founder Amanda Coughlan Santry said: “It was very positive, very constructive, people engaged very well.

Families were very clear about what they would like to see included. People were very organised and very clear in their thoughts.

"They came from everywhere. We had parents come from as far as Cork, from Donegal, they came from Galway, Clare, Tipperary.”

CHI is a specialist centre of care, which means that children are referred there from all over Ireland.

'Ageing out' of children's care

Some people in their 20s also attended.

Ms Coughlan Santry said: “They had aged out of children’s care to nothing, to no supports, or they had struggled to access services while they were children.

“They wanted to ensure those things are going to be investigated.”

The gathering also included a number of bereaved families, she added.

It was in many ways a sad meeting, she said, but it meant “people are standing up for themselves now”.

Ms Coughlan Santry is hopeful the process can get going soon: “We still have no facilitator appointed; the work between the advocacy groups and a facilitator has not commenced.

“We haven’t been given a reason as to why this hasn’t started.”

The meeting also heard questions, she said, about why these children face so many gaps in care compared to thousands of other patients at CHI hospitals. She asked: 

CHI say they prioritise children based on need, but why is it always our children in the middle of scandals?

The meeting was co-hosted by the Scoliosis Advocacy Network. 

Co-founder Claire Cahill said it was an “important meeting” for families.

“The focus was on accountability, governance and patient safety,” she said.

“Children’s voices must be central, not symbolic, in any inquiry. Children must be heard. Their experiences matter. Their outcomes matter.”

The groups will raise concerns from the meeting with health minister Jennifer Carroll MacNeill.