'Misery' of children affected by spinal surgery must be turning point for reform, says advocate

Spina Bifida Hydrocephalus Ireland chief executive Gerry Maguire: 'We’ve got to take this opportunity and look at it as a turning point, so that we can never go back to these times again.'

The misery of children affected by spinal surgery concerns in CHI at Temple Street Hospital must be a turning point leading to reform, an advocate, who is meeting an external reviewer appointed by the HSE on Tuesday, said.

A HSE-commissioned external review of surgery for children with spina bifida in Temple Street, led by a consultant from the Royal Liverpool Children’s Hospital, was criticised by two parents’ groups. 

Focus too narrow

They said the focus was too narrow and declined to meet the reviewer.

However Gerry Maguire, Spina Bifida Hydrocephalus Ireland chief executive, said: “It’s terrible we have to use this time when these poor children have been put through misery, and their parents likewise. 

“But we’ve got to take this opportunity and look at it as a turning point, so that we can never go back to these times again.” 

He met Dr Selvadurai Nayagam in an virtual meeting last week and will meet him in person on Tuesday.

He said of the first meeting: “I asked him when he met Minister Donnelly or Bernard Gloster, was he given instructions on how to go about doing the review, and what they wanted to see out of it. And he said under no circumstances was I.” 

Mr Maguire, whose organisation, part-funded by the HSE, represents 2,000 people, shares the parents’ groups desire to see the review expanded outside of surgery.

“I think [the reviewer] was genuinely surprised at some of the issues that I raised with him,” he said. 

The children’s surgeries have been very well spoken about over the last few weeks, and rightly so. But something like the transition from childhood services to adult services for spina bifida is non-existent in this country.” 

He added: “My view is the terms of reference will germinate as the review goes on, or they should if the review is to be effective in any way.” 

'Non-existent communication'

Formerly special adviser to former disabilities minister Finian McGrath, he has been disappointed at “non-existent communication” from CHI in the past.

“Children who have had surgery in Temple Street and haven’t had follow-up physiotherapy,” he said. 

“Anybody who has a surgery, especially orthopaedic surgery will always have a follow-up physiotherapy appointment. But it’s as if children with spina bifida don’t really matter. All that does then is the benefit of the surgery isn’t seen to its fullest extent then.” 

He added: “Communication is improving now, it’s been really good but we’ve been crying out for this.” 

He also recently met Health Minister Stephen Donnelly and Taoiseach Leo Varadkar on this.