Advocates say taskforce should take over the management of spinal surgical lists

Procedures for children with scoliosis and spina bifida should be managed by an agency outside the HSE, advocacy groups say

Scoliosis Advocacy Network co-founder Michelle Long said it 'beggars belief' that another review into failures at CHI Temple Street is under the control of the HSE. Picture: Niall Carson/PA

Paediatric spinal advocacy groups have called for a taskforce, outside of the HSE, to take over the management, control and advancement of spinal surgical lists.

The groups which also represent families impacted by the use of unauthorised spinal implants at Children's Health Ireland (CHI) Temple Street said they will not take part in the upcoming review as it stands. They said there is a contradiction both in terms of recollection and detail from CHI, all of which cannot be resolved by a medical practitioner.

The HSE’s external review will be led by Liverpool-based Consultant in Orthopaedics and Trauma Selvadurai Nayagam and may take up to 12 months, according to HSE CEO Bernard Gloster.

The groups said they have lost all confidence in Health Minister Stephen Donnelly and the HSE.

Ahead of a meeting with the Taoiseach, Health Minister Stephen Donnelly and HSE CEO Bernard Gloster, the groups warned that they would not take part nor allow their children’s data to be used for the external review into CHI Temple Street.

They said the review, as it stands, is inadequate, adding it must be independent and more wide-ranging.

Scoliosis Advocacy Network co-founder Michelle Long said it “beggars belief” that the third review is under the control of the HSE, “the entity that is ultimately responsible for the management and the delays that have occurred in terms of surgical intervention”.

The groups outlined that they would require a spinal expert to lead the review, in addition to looking at clinical governance and oversight within CHI and other CHI sites describing the controversy surrounding the use of unauthorised spinal implants as a “systemic failure”.

“CHI has irretrievably damaged its own reputation with a sequence of shocking disclosures that have materialised over the past week. It is an entity now to be subject matter of investigation rather than the entity that determines or has any role in determining the scope of such an investigation,” they said.

Waiting lists 

The families described the lack of timely care as a children’s rights issue, saying many of the 314 children waiting for spinal surgery at CHI sites are living in pain.

Calling for an independent taskforce to oversee spinal surgery lists, the families said there is a complete lack of innovation, motivation or urgency to provide timely access to care for children.

The group have called for an investigation, also independent of any involvement of the HSE, as to how these lists have never been resolved despite significant investment from the Government.

Spina Bifida and Hydrocephalus Paediatric Advocacy Group founder Amanda Coughlan Santry’s son TJ spent four years on the CHI Crumlin list waiting for surgery for his scoliosis, who ultimately became inoperable in 2017.

Ms Coughlan Santry said the lack of timely access has devastating consequences on children’s lives.

Ms Long said the extent of waiting lists far exceeds what would be acceptable in any other first-world country: 

It is necessary that such a taskforce is set up now rather than allow the HSE to respond and fail again.

 She added: “We have lost all confidence in the HSE, CHI and the minister for health to be able to manage or achieve a resolution of this emergency healthcare catastrophe.” 

Taoiseach Leo Varadkar said despite “years and years” of additional investment and increases in the number of surgeries carried out, “we haven't really seen waiting lists improve very much”. 

“I know they must be very frustrated and very angry at the delays that children have to endure to get treatment, I am too,” he said.

He said the main purpose of meeting with families impacted by spinal surgery issues at Temple Street hospital is to “hear from them”.

“Clearly there are issues with the spinal service in CHI, there are issues related to the practice of one consultant, but there are also wider issues,” he said.

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