Parents of children with scoliosis are losing faith in the government due to lengthy delays in vital spinal surgery, the Dáil has heard.
Last week, families protested outside Leinster House because of severe delays in surgery for scoliosis and other complex orthopaedic conditions.
Among the group was ten-year-old Kylie Ann Stewart from Kilmacrenan and her mum Catherine.
Kylie Ann’s parents were first told she needed scoliosis surgery when she was four years old. Her spinal curvature has worsened as the years go by. Her back is now curved at 138°. She has been told that if her spine curves by a further 10°, it will not be possible to operate on her.
Kylie Ann’s operation has been cancelled twice in the past year, but her parents have been told that it will be happening in the months to come.
“Her condition is acute, her pain is great and her parents are heartbroken,” Deputy Pearse Doherty told the Dáil yesterday.
Kylie Ann lives with a severe spinal curve
The Sinn Féin TD told former Minister for Health Simon Harris that there are many children like Kylie Ann out there.
“This is life for the 288 children across our State who languish on waiting lists for critical scoliosis surgery,” he said.
In 2017, the then Minister for Health Simon Harris said that no child would be waiting longer than four months for scoliosis-related surgery.
Deputy Doherty pointed out that Kylie Ann is waiting for her operation for more than half her life.
“After years of broken promises, how could these children and their parents have any faith in the system?”
Last week’s Dáil demonstration by members of Spina Bifida Hydrocephalus Ireland (SBHI)
Advocates for children with scoliosis and spina bifida have been calling for an independent taskforce to manage the waiting lists.
In response to Deputy Doherty, Minister Harris said the government believes a taskforce is a “sensible suggestion” and work is now progressing on addressing the terms of reference.
Minister Harris said: “A task force will be established and it will include all stakeholders, including patient representatives and clinicians, whose inclusion is also important.”
“The task force will have an independent chair and, contrary to some of the misinformation that is out there, it will not report to Children’s Health Ireland.”
When asked specifically about what is going to be done for urgent cases on the waiting list, Minister Harris said: “What we will do for Kylie Ann, children right across the country, parents and families is get this back on track. We saw the progress that could be made in 2017. We saw the fall in wait times, the extra children getting their services and the Ombudsman for Children’s report welcoming some of that. We now have an extra €19 million. There are additional staff. I am very clear on that. There are 193 more staff and a new theatre due to open. New diagnostic equipment, an MRI, is due to come on stream in Our Lady’s Hospital in Crumlin.”
