Scoliosis: 'Children let down' by long wait for spinal surgery
By Ciara Colhoun
BBC News NI
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- Published
Children are waiting more than a year for urgent surgery to treat scoliosis, a condition where the spine curves abnormally to one side.
Some are waiting almost two years for routine surgery.
Belfast Health and Social Care Trust (BHSCT) said waiting times will likely increase further due to Covid-19.
Scoliosis affects three to four children out of every 1,000 in the UK.
The Belfast Trust runs the regional service for children's scoliosis surgery.
Olivia McMahon, from Lisburn, County Antrim, is one of 31 children in Northern Ireland currently on the waiting list.
She was diagnosed with scoliosis when she was five years old, but her condition deteriorated over the summer.
Spine curvature has to measure at least 50 degrees before surgery is considered.
In the past few months, Olivia's mother said her curvature has increased to more than 70 degrees.
Aundrea McMahon said she was shocked to learn Olivia would have to wait more than a year for spinal surgery despite it being considered urgent.
She said they had previously been advised there would be a six-month wait.
"When we were told it's over a year, possibly longer, especially with the new Covid regulations that's a shock. I'm disappointed.
"It is getting worse every week, she is in pain daily."
Olivia said she can no longer play netball or basketball, and has missed school because of pain and breathlessness.
"I wear baggy clothing to hide it, because I don't really like it. I don't think it should take this long," she told BBC News NI.
Aundrea said Olivia's worsening condition has affected her self-esteem.
"She is more withdrawn, she used to be a lot more outgoing," she said.
"She was a very active little girl, always running about and she just can't do it any more.
"It affects her organs as well, she would be out of breath, she gets a lot of tummy pain on top of her back pain."
'It's not like scoliosis stops'
Aundrea believes children "are being let down".
"Those waiting lists, from the time of being referred until even your first appointment, they get worse.
"As Olivia is growing she is getting worse, it is not like the scoliosis stops."
Belfast Health Trust has apologised to Olivia and explained spinal surgery was among many services cancelled or postponed due to the pandemic.
In a statement, the trust said it recognised how difficult this was for patients. but added that waiting times were expected to rise further as Covid cases rise.
"We are extremely sorry that Olivia and her family have to endure such a long wait for surgery," the statement said.
"Belfast Trust regrets that any patient has to wait an extended period of time, however whilst actions have been taken to resume elective services, including scoliosis clinics over the last few months, with priority being given to the patients assessed to be in the most urgent need, there is a current understanding that based on the rising figures of Covid-19 affected patients that there will be a further need to reduce elective services in the coming weeks."
Because of the delays, Olivia's family are among a number of families across the UK planning to take their children to Turkey for private surgery, which costs approximately £40,000.
"Taking your daughter to Turkey is daunting, but I can't imagine waiting a year for her, my heart would be broken," said Aundrea.
'I want to be free again'
Olivia said planning for Turkey gives her hope.
"I really want to get this surgery done and be free again," she said.
Karen Fleming, from Carrickfergus, County Antrim, took her daughter to Turkey for scoliosis surgery three years ago.
She has since set up Megan's Wish charity to support other families affected by scoliosis.
"We were surprised with the long waiting time for our first appointment and it hasn't changed in three years," she says.
Karen said her daughter's condition was severe by the time of surgery.
"She had a lung capacity of 52% and other issues with her heart because of the spine pressing in the internal organs.
"In Northern Ireland, it is a very sad service we are getting at the minute, seeing nurses and surgeons wanting to change things and not being able to."
BHSCT said it was aware of patients travelling to Turkey for surgery and would "advise of the slight risk associated with travelling following complex surgery".
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