The father of a girl so profoundly disabled that she can only communicate with her eyes has written to the health minister asking him for a meeting to discuss the growing scoliosis waiting lists.
Aaron Daly travelled to Leinster House for 7am yesterday in an effort to hand-deliver to Health Minister Simon Harris a letter outlining the worsening plight of his 12-year-old daughter Sophia, as well as the plight of 188 other children in need of spinal surgery.
While official figures from Our Lady’s Children’s Hospital Crumlin show that 152 children awaiting spinal procedures, as of August 24, Mr Daly says the actual figure is 188 as children whose surgery has been suspended are not counted.
The hospital attributes suspensions to clinical or family reasons.
Mr Daly said the letter was taken on board by Sinn Féin health spokeswoman Louise O’Reilly, Fianna Fáil health spokesman Stephen Donnelly, and People before Profit TD Bríd Smith.
In the letter, he outlines how Sophia has been on an urgent waiting list since April 2017, even though the minister made a statement in May 2017 that no child would be waiting longer than four months for spinal surgery by the end of 2017.
Mr Daly says this commitment “has clearly failed and is causing untold suffering for children like Sophia, who are now developing additional complications”.
“Early intervention is practically non-existent in the HSE,” he writes.
Mr Daly calls on Mr Harris to extend the opening hours of a theatre in Crumlin from three days to five days and to allocate additional paediatric ICU beds to children with scoliosis.
Mr Daly writes that elective surgery is at the mercy of the availability of paediatric ICU beds.
“We can’t take Sophia in if she is not guaranteed an ICU bed for a week,” he says.
Mr Daly is also critical of a promise to treat 60 children overseas under the National Treatment Purchase Fund. He said the Scoliosis Advocacy Network is only aware of six children being treated abroad.
At the launch of a scoliosis 10-point action plan in July, a series of initiatives were mooted, such as the appointment of 20 new people to posts to support paediatric orthopaedic services, and the recruitment, by year end, of two general paediatric orthopaedic surgeons to allow spinal surgeons to focus on scoliosis cases.
Mr Daly was unable to reach Mr Harris yesterday. He gave a copy of the letter to Tánaiste Simon Coveney.
A spokesperson for the Department of Health said Mr Harris was “aware of the case mentioned and is very sorry to hear of the long time that Sophia has been waiting”.
Mr Daly said the family is due to meet with a multidisciplinary team in Crumlin tomorrow and they are hopeful of a date for Sophia’s surgery.
Sophia has cerebral palsy, arthrogryposis (limited movement of joints) and scoliosis.