Scoliosis: Living in limbo for three years - 'You can’t have kids spending years on waiting lists'
Sixteen-year-old Ella Ryan has endured crippling pain for over three years while languishing on a HSE list for life-changing surgery. Chrissie Russell reports on the scandal
It's hard to imagine it, but Siobhán Ryan's daughter Ella has been waiting for surgery to improve her painful scoliosis condition for more than three years.
Since 2014, the mum-of-three from Gorey, Co Wexford, has watched her teenager battle the painful condition, which causes a curve in the spine. And the pain has gradually worsened since Ella was first diagnosed with progressive severe scoliosis in 2014.
Born with spina bifida and hydrocephalus, Ella (16) has always been in a wheelchair, but both Ella's mum and her primary care team - the dedicated nurses and physiotherapists who see her on a regular basis - believe her untreated scoliosis has caused her additional suffering.
"The scoliosis is our main problem," says Siobhán. "She can't sit properly in her chair, her leg splays out, her hips are affected and her feet are affected. The way her foot is turning is causing her to hit it off the footplate of her wheelchair, causing these horrendous blisters that look like third degree burns. Pressure wounds from the skin rubbing are being caused by the scoliosis and her ribs hurt. I can see her getting worse from the position she's in in her wheelchair. I personally know someone whose son has scoliosis and it's got to the point where it is now inoperable. I'm worried we could end up in the same situation."
She adds: "We're lucky Ella's curve is down low, so her lungs aren't compromised, not yet anyway. But I don't know if her kidneys are being affected or her bladder or bowel - over time, who knows? I do know that organs can be compromised. I know kids whose breathing has been affected."
The Government's Action Plan on Scoliosis pledged that, by the end of 2017, no child would have to wait longer than four months for scoliosis surgery. But today, over 100 children remain on waiting lists for spinal surgery.
At three years, Siobhan has been told Ella's wait is "one of the longest", but she's never been told why. She was advised to put her daughter, who is a patient at Our Lady's Children's Hospital in Crumlin, forward for 'outsourcing' where her surgery might be carried out at the Mater Hospital, in Germany or London. "It took 70 days for us to hear back from the Mater that Ella had been turned down," says Siobhán. "Then we were turned down for Germany last week. They say that because she has complex needs and will need two surgeries - from the back and from the side, which could see her needing three weeks in hospital - her care should remain at Our Lady's Hospital. "But they've known Ella had complex needs from the start so why was outsourcing even suggested for us? When we were waiting to find out if she'd been accepted for Germany last week, Ella was visibly emotional. I could see her welling up at the idea that we might finally be getting an answer.
"It's just so unnecessary. Living in limbo for three years has affected her wellbeing. Ella's a happy child and she rarely complains, but she's fed up. We all are. We're just living on the list. The surgery she needs is major enough without the problem getting worse."
Life at home has been put on hold. Siobhán's husband Liam works as a sales rep and has been left not knowing when to schedule leave. The family can't book a holiday because Ella's waiting list status renders her uninsurable, nor do they want to risk missing a potential surgery date.
"It's just taken over our lives," says Siobhán. "We're trying to get on with everyday life, school, homework, dinners, showers, but it's very mentally draining. And we've hospital appointments every week. Just trying to get on with all the difficulties associated with having a child with extra care needs is made all that more difficult by feeling you have to battle for every little thing."
Gary Farrell from the support organisation Scoliosis Ireland, says it is "absolutely disgraceful" that so many young people are being left waiting years for life-changing surgery. "As a curvature progresses, it can put extra pressure on the heart and lungs of a child, which can cause serious health problems, often making it harder to breathe," he explains. "It makes more sense to do everything we can to reduce scoliosis surgery waiting times and give our children a better chance."
He also fears the emotional impact long waiting times are having on children. "There's a lack of mental health support for these children who are waiting and we're calling for a specialist to be appointed to deal with this," he reveals. "At Scoliosis Ireland we've started mental health workshops to try and help these children in case they need additional support."
It's not known what causes scoliosis, where the spine twists and curves to the side, and it can affect anyone, but most commonly starts in children aged between 10 and 15. Symptoms include one shoulder being higher than the other, one hip higher than the other or the ribcage more prominent on one side. Depending on the severity of the condition, treatment can include wearing a brace or surgery to control or straighten the spine.
Certain conditions, such as spina bifida which Ella suffers from, come with an increased risk of scoliosis because of unstable muscles around the joints and other orthopaedic issues. Not all cases of scoliosis get worse. But in children who are still growing, a scoliosis curve can worsen rapidly during a growth spurt, making time of the essence when it comes to scheduling surgery.
Farrell strongly believes that part of the reason so many young people are on long waiting lists lies in the fact that the new orthopaedic theatre at Crumlin, which cost in the region of €2m, is only open for surgeries three days a week. "We're in contact with the Minister for Health and An Taoiseach to increase this to clear some of the backlog," he explains.
Siobhán, and some 5,000 people who have signed a petition launched last week by the Scoliosis Advocacy Network Ireland, agrees this needs to change. "I was told there was an air ambulance available for us if Germany had worked out," says Siobhán. "It costs a lot of money to send people abroad for surgery - why not just open up the facility we already have? I don't think a lot of people are aware we have this theatre that cost millions and, up until recently, it was only open one day a week. I don't know what the answer is, but they're never going to get through the waiting list on three days a week."
In a happy twist of fate, Siobhán actually received a call on Tuesday
morning telling her that Ella has finally been given a surgery date for next month at Crumlin.
Although delighted, her mum is reluctant to fully believe it until her daughter is being wheeled into the operating room. "It's only a provisional date, but it's something and we're clinging to it," she says. But even when Ella finally gets surgery, Siobhán has vowed to keep campaigning. "It's not over," she says. "There are other parents still waiting. It isn't fair - you can't have kids spending years on waiting lists, everyone deserves to be seen within a timely matter."
A spokesperson for the Children's Hospital Group said: "Reducing waiting times for children with scoliosis is a priority for the HSE and the Children's Hospital Group. We very much regret the waiting times that are being experienced by patients and their families and we are committed to working collaboratively with families of scoliosis patients and advocacy groups to meet their needs.
"Significant and ongoing efforts are being undertaken to improve this service and the OLCHC has submitted a business case to the HSE for 2018 resourcing for additional surgeons, nursing and support staff for paediatric orthopaedic services. This will increase orthopaedic surgery by an additional two days per week."