Scoliosis crisis flagged to Minister last June – claims PAG Co-Lead

by Rose Barrett
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Rose Barrett

Amanda Coughlan-Santry, Co-Lead Paediatric Advocacy Group (PAG) for Children with Spina Bifida & Hydrocephalus, stated the group reported to Minister for Health Stephen Donnelly last June, and warned of the impending crisis that occurred recently, when Temple Street announced the cancellations of complex surgeries for children with Scoliosis in September.

PAG, an independent advocacy group, has repeatedly warned of the under resourcing of supports for these children’s surgeries.

“We’ve been trying to engage with the Minister re our concerns where the €19m allocated earlier this year went for the direct provision of services for children with Spina Bifida and/or scoliosis,” said Ms Coughlan-Santry.

“We had genuine concerns that the money had been allocated too thinly across services to have a direct impact on these children’s lives.

“Now looking at this mess, our fears were correct. We’ve had a number of meetings with Children’s Hospital Ireland (CHI) and requested Minister Donnelly or a representative to attend – no response received.

“We sent the Minister an update in June last- we warned him this was coming down the line!”

The mother of 7 children aged from 6 to 19 years, Amanda’s 17-year-old son TJ was confirmed with inoperable scoliosis in 2017 – “because he was left too long on a waiting list with CHI!

“We see frontline staff trying so hard to provide the care to children with complex issues – but the resources simply aren’t there!

“I was contacted by parents of the three children whose surgeries were cancelled in September. We have been in regular contact with the CHI since February last and had a meeting last Monday week but there was no mention of the cancellations.

“I immediately rang the CHI and I had a return phone call from Sharon Ryan, Chief Operations Officer at CHI within 40 minutes.”

Spinal curvature on right owing to scoliosis condition

The CHI stated: “Three complex surgeries have been postponed in Children’s Health Ireland at Temple Street for the next three weeks. All other spinal surgeries will continue during this time. This decision was made collaboratively by clinical staff and management for a number of reasons and we are sincerely sorry to those families and patients affected.”

The statement maintained that the cumulative impact of undertaking a greater volume of these complex surgeries has resulted in pressures on beds, theatre capacity and on the highly specialised staff working within the service.

“Most complex cases require returns to theatre following their first surgery – this can range from 1-3 times usually or unusually, more than 20 times. These follow ups cannot always be planned for.”

CHI stated it remained “on track to deliver on the promise…that by year end, no patient will be waiting longer than 4 months for spinal surgery (if clinically appropriate).”

There are currently 31 children at CHI Temple Street awaiting surgery; 13 are listed as requiring ‘complex spinal surgeries’, 10 of whom have Spina Bifida. 

“The majority fall under the care of Dr Conor Green, Paediatric Orthopaedic Consultant,” said Ms Coughlan-Santry. “He has carried out one complex spinal surgery a week at Temple St since March last. Because children’s conditions have degenerated while they were on waiting lists for over two years and longer, the surgeries are now much more complicated.”

“We understand what happened, it also occurred in 2018 and will happen again. These children should have more timely access to surgeries. They shouldn’t be left on waiting lists; this could avoid post-op complications and prevent more pressure on under-resourced hospital services.”

She concluded the temporary stop on complex surgeries at Temple Street will drastically impact the three children involved, but it will also have a significant knock-on effect on 52* children awaiting other orthopaedic procedures at the hospital.

*ALL 52 are deemed too medically complex to be catered for at Cappagh Kids Initiative; circa 70 children are currently under medical review at Crumlin Children’s Hospital (to assess their needs) whereas there are approximately 550 children attending Temple Street.

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