Government must 'step in' and help young people with curvature of the spine who have had vital surgery delayed
The parents of a 14-year-old boy waiting for more than 20 months for surgery to deal with worsening curvature of the spine have gone "from frustration to anger" in the fight to get the health authorities to act to ease their son’s now excruciating pain.
Ronan Foley from Killorglin is among around 200 children from infants to the age of 16 waiting for essential surgery, the Scoliosis Advocacy Network has estimated. Covid-19 has worsened matters, the network said.
It is calling on the Government "to step in" with an immediate plan, including the use of private hospital theatre facilities, to ease the terrible pain of the children and their distressed parents, saying this is a children's rights issue.
In October 2018 Ronan had to have surgery within three months, his family was told. Ronan's father, Tony Foley, said his son is still waiting and despite letters from his pediatrician and intervention from politicians there is no date for surgery.
“It’s gone from frustration to anger now," he said at the launch of a campaign to go out on social media next week.
We don’t want to put our private lives out there, but we are being forced.
The Foleys are keen to stress that any fault is not with Crumlin Children’s hospital, which has minimum facilities, or the medical team there, but most likely with the Department of Health and HSE.
“There’s a lot of other Ronan Foleys in the country,” Mr Foley said.
For the family including mother Caroline and older brother Gavin, it is terribly upsetting to see how the once happy-go-lucky child is deteriorating, Mr Foley said.
The hard-won skills of being able to sit up and going from a lying to a sitting position are diminishing.
He is distracted by his pain. He finds it hard now to balance himself and this is impacting on his chest too.
"He got a bad flu at Christmas,” Mr Foley said.
A very sociable young man, Ronan repeated sixth class and sacrificed going to secondary school with his friends because he expected to undergo surgery last year.
By March of this year even before Covid lockdown he was in too much pain to attend school.
Mr Foley paid tribute to Josephine Doncel, Ronan’s teachers at St Oliver’s School, Balycasheen, and Noel O’Sullivan, who have joined the campaign.
Working online with him during the lockdown, Ms Doncel has been devastated to see at first hand his deterioration.
Full of fun normally, it now causes him too much pain to laugh, she has noticed.
“What does it take to fix this?” Ms Doncel asked.
Claire Cahill of the Scoliosis Advocacy Network said the Government needs to step in and should explore using private hospitals for extra capacity and bringing in clinical teams from abroad. Children scheduled for so-called “elective surgery” will be pushed back even further because acute cases will have to be dealt with, she said.
“The language around surgery for children with curvature of the spine needs to change. This is essential surgery,” Ms Cahill said.
The lack of capacity which was there before Covid-19 has now worsened.
“The number of surgeries completed has completely decreased. There has been no surgery and no outpatients so first appointments have not gone ahead.”
In six months time there will be a huge back-up, she said.
“A plan has to be put in place for all children on waiting lists at the moment,” Ms Cahill said.
“The kernel of it all is a children’s rights issue. Children do not have access to timely medical care in Ireland,” she said.
The last number of weeks had seen record contacts by distressed parents to the network.
“We need a plan for all children on the waiting list for scoliosis surgery right now and there needs to be funding of the plan,” Ms Cahill said.
The Kerry TDs Michael and Danny Healy-Rae have raised Ronan’s plight in the Dail and asked for intervention. New Minister for Education Norma Foley, also a Kerry TD, has now rung the family to say she will also work on his behalf.
