Tullamore mother's urgent healthcare reform call

By Rebekah O'Reilly

Tullamore mum Amanda Coughlan Santry recently met with politicians to demand that the Government take immediate action on long-promised reforms to Ireland's healthcare system for children with disabilities.

Amanda is co-lead of the Spina Bifida & Hydrocephalus Paediatric Advocacy Group, and her call for reform comes after years of frustration with chronic delays in treatment for her son, TJ Coughlan, who was born with spina bifida and later diagnosed with scoliosis.

TJ, who is now 20, was diagnosed with scoliosis at the age of 9, but his health journey had been marked by lengthy delays and a lack of timely intervention.

His case has been highlighted in the Dáil by Sinn Féin leader Mary Lou McDonald.

"There was a 21-month wait to see the spinal consultant, and a further two-year wait to be seen again by the surgeon," Amanda said. "By the time he was 13, it was too late. The surgery he needed was no longer an option. It was catastrophic for his life."

Amanda’s story is far from unique. For children like TJ, the journey from childhood to adulthood in the healthcare system can be filled with obstacles. As of 2023, 234 children are on the spinal surgery waiting list, and despite additional resources and a dedicated Spinal Management Unit, this list remains static.

Children’s Disability Network Teams support young patients with disabilities until they reach adulthood, at which point they are transferred to Primary Care teams. However, these primary care teams sometimes lack the resources to properly support individuals with complex medical needs.

For Amanda, this transition has been devastating. Despite working full-time at a residential care centre for children with disabilities, Amanda is also TJ’s full-time carer.

"There are absolutely no services in Offaly," she said. "TJ hasn’t received physiotherapy for over a year, and there are only two part-time physiotherapists available. He’ll never be seen."

The lack of adequate care, particularly for adults transitioning from pediatric services, has reached crisis point in Offaly, she said.

"We are left to navigate this system with no help," Amanda said. "There is no funding, no support, and no services for TJ. I have to pay for physiotherapy and other treatments out of pocket, but finding specialists who can work with him privately is incredibly difficult."

Amanda’s fight has gained significant political attention. Mary Lou McDonald has used her platform in the Dáil to highlight the devastating impact of healthcare delays on children like TJ.

"TJ Coughlan from Tullamore in Offaly is a great young man. He is 20 and was told at the age of nine that he needed surgery," the Sinn Féin leader told the Dáil last month.

"He was left waiting until he was 13 and when he turned 13, it was too late. He is now inoperable and is wheelchair bound. That was catastrophic for that young man’s life."

Amanda’s advocacy has been instrumental in raising awareness about the failures within Children’s Health Ireland (CHI) and the need for urgent reform. In addition to lobbying for better services for children with scoliosis and spina bifida, Amanda is calling for a statutory inquiry into CHI to investigate how millions of euros in funding was mismanaged and why children’s care has been allowed to deteriorate to the point where children like TJ are being left without treatment.

"The time for empty promises is over," she said. "We need urgent action to address the crisis in children’s healthcare, particularly for those with complex conditions like spina bifida and scoliosis. No child should have to wait years for life-changing treatment."

Amanda’s message will resonate with countless families across Ireland. The issue is not just about long waiting lists but the devastating consequences of delayed or denied care.

"We are not just fighting for TJ," Amanda added. "We are fighting for every child who is facing this system. We want change, and we want it now."

In attendance at a presentation to politicians on October 14 was Offaly TD Tony McCormack, who said he commended Amanda for organising the Spina Bifida & Hydrocephalus Paediatric Advocacy Group.

"Her son has suffered greatly as a result of CHI, and there are a lot of similar cases where children weren’t treated on time," Deputy McCormack said.

"It’s something that is being taken very seriously, and an extra 20% has been allocated for disability care in the budget."

As the pressure mounts on the Government to take action, Amanda’s advocacy is a reminder that reform is not just a political issue, it can have life-altering consequences for young people like TJ.