Families affected by spinal surgery delays call on Simon Harris to make good on promises he made

Co-founder of the Spina Bifida & Hydrocephalus Paediatric Advocacy Group Amanda Coughlan Santry called on Mr Harris to act on families' concerns when he becomes Taoiseach, as is almost certain. Picture: Ray Ryan

Families affected by delays in spinal surgery have called on Simon Harris to do right by their children in light of promises made when he was health minister in 2017.

It comes as barrister Mark Connaughton SC was announced on Friday as chair of a new Paediatric Spinal Taskforce that is expected to drive improvements in care.

Amanda Couglan-Santry, co-founder of the Spina Bifida & Hydrocephalus Paediatric Advocacy Group, called on Mr Harris to act on families' concerns when he becomes Taoiseach, as is almost certain.

“He has let us down already [in 2017] so we had broken promises from him, then more broken promises from Stephen Donnelly, and now Simon Harris is coming back,” she said.

Is he going to be the man now to stand up and do right by these families, do right by these children?

The group expects to meet with Mr Connaughton to hear his plans. 

Health minister Stephen Donnelly welcomed the taskforce as a next step in improving care.

He said it meant key stakeholders could work together towards “long-lasting improvements to these services and the lives of these children".

Meanwhile, a separate review of spinal care at Temple Street Children's Hospital continues under Dr Selvadurai Nayagam.

His first interim report is now not expected before the end of April or possibly later, HSE chief clinical officer Dr Colm Henry said. 

A number of key advocacy groups including Spina Bifida & Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network have opted not to meet with him due to concerns about the terms of reference of the review.

A HSE spokeswoman said chief executive Bernard Gloster “remains available to meet the advocacy groups if they wish”.

“Working with Mr Nayagam would not in any way prejudice any future position someone might adopt after the review by engaging with it now,” she added.

Mr Donnelly has asked the HSE to start an audit of how €19m in funding allocated to Children's Health Ireland in 2022 for spinal care was being spent.

The HSE said this process “has now commenced”.

The Spina Bifida & Hydrocephalus Paediatric Advocacy Group has previously raised concerns about whether this funding was being spent in a way which directly benefited their children.

However, in one move towards addressing families' concerns, the HSE said an appliances and liaison officer had now been appointed for each of the nine HSE regions.

This person will give information and support to families who need it, with contact details supplied to advocacy groups and others already.