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By BBC Disclosure
BBC Scotland
Nursing shortages are contributing to children waiting up to three times longer for spinal surgery than pre-pandemic, a top surgeon has claimed.
Chris Adams says up to one in four operations are cancelled at NHS Lothian, with staffing the main reason.
Mr Adams also claims that some children are not being put on waiting lists as early as they should be.
NHS Lothian disputes some of Mr Adams' statements but says "significant pressures" are affecting waiting times.
Mr Adams is a consultant with the Scottish National Spinal Service (SNSS) and operates at the Edinburgh Royal Hospital for Children and Young People (RHCYP).
The senior clinician, one of Scotland's three paediatric spinal surgeons, said he was speaking out of behalf of spinal patients and their families
- Some children are waiting up to three times longer than pre-pandemic for spinal surgery, with some waiting more than a year
- At least 51 out of a possible 190 planned spinal surgeries at RHCYP were cancelled at short notice in 2022, with nursing shortages understood to be the main cause
- Some children with "complex" needs are facing further assessments and delay before being added to waiting lists
- Discrepancies between NHS Lothian data and reports from frontline medics on the number of cancelled operations
Mr Adams said one patient's spinal operation had been cancelled six times in the last year - and that four of those occasions were because of staffing shortages.
The surgeon said the main reason that operations were cancelled was "a lack of nurse-staffed capacity for a bed" after the procedure.
He said: "It makes you sad, makes you very angry. It's the fact that that the patient is not treated and is getting worse.
"It's the parents or carer, there's where the absolute distress is because they've got nowhere to go.
"And the distress when you've seen enough families cry - I'm done with that."
Mr Adams said that pre-pandemic the wait for an operation was typically between four and six months, but now it can take a year.
BBC Scotland understands that some of Mr Adams' colleagues have raised concerns within NHS Lothian about the number of operations being cancelled due to staffing shortages.
'When are they going to fix me?'
Nathan Kelly had two spinal operations at the Sick Kids hospital in Edinburgh postponed in December last year, which his mum Ann says was because of staff shortages.
Ann, from Denny near Falkirk, said the experience was "incredibly draining" for everyone, with one of the cancellations coming on the morning of the planned surgery.
"It was such a huge disappointment, we had planned everything around it. I'd cried for weeks leading up to it, I knew he had to have the operation but I was worried."
Nathan, who has cerebral palsy and was first told he would need spinal surgery in early 2020, was given another date in December for the operation but this was postponed five days before.
"You can't blame the surgeons or the nurses, they are doing such an amazing job and are flat out, but it can't be right that children's operations can get cancelled like that," Ann said.
"We try to protect him as much as possible, but when the second one was cancelled, he just said: 'When are they going to fix me mum'?"
Nathan had his spinal surgery on 3 February. He remains in a lot of pain with a hip problem that could not be addressed until he had the operation.
Mr Adams told Disclosure that spinal surgery candidates with disabilities and other complex needs had to undergo further assessments before being added to waiting lists for their operation.
He said these extra assessments created a delay that can mean "the risks of death, paralysis and other complications is greater".
There are currently 88 children on the official RHCYP waiting list but the BBC understands that at least 11 more children deemed by Mr Adams to be suitable for surgery are not on this list, categorised as "NOWL" (Not On Waiting List).
He added: "It is almost certain that in that clinic we've made a good call that the patient is actually allowed to have the surgery that they wish - I don't quite understand as a clinician why that patient should wait yet longer."
Mr Adams said that he believed that "the rules and system games the waiting list".
Dr Tracey Gillies, medical director of NHS Lothian, apologised to families affected by delays.
She said: "We have been open and honest about the significant pressures being experienced across our entire healthcare system and their negative impact."
Ms Gillies said it was "absolutely correct" that some patients were not immediately listed for surgery.
She added: "This happens when the patient is not able to undergo surgery until further diagnostics are completed and a final decision to progress with surgery can be made.
"As soon as the decision to progress to surgery is made, the patient is added to the waiting list."
NHS Lothian said only three patients were categorised as NOWL and that the average waiting time for surgery was 25 weeks at the end of December.
It said it had investigated previous claims about waiting list delays made by Mr Adams, and these were found to be "without foundation".
'My jaw was on the floor with shock'
Scarlett Sharp has been on a NHS waiting list for surgery to address the curvature of her spine since September last year.
The 12-year-old from Motherwell has been moving up the priority list as the problem has worsened, with a stark increase in the condition known as Scoliosis since it was first identified last June.
"The first X-ray I saw I was pretty shocked," said Scarlett.
"When I walked into the room and saw the X-ray my jaw was on the floor and the other X-rays they've increased more, so I'm worrying about just in case leading up to the surgery it might grow a bit more and get worse over time."
Scarlett can find school challenging due to the pain in her back and her mum Dawn, 38, is desperate for the procedure to go ahead.
She said: "As far as we know it's going to be brought forward to about May time.
"It's nearly a full year in terms of them predicting May, of her having the same issue [and] it progressively getting worse. But nothing in terms of them fixing it has progressed."
BBC Disclosure also identified issues over how NHS Lothian reports delayed operations.
The board initially told BBC Scotland that just one operation across all paediatric specialties at RHCYP was cancelled in April 2022 due to a lack of capacity.
However, BBC Scotland saw documents suggesting otherwise. NHS Lothian has since confirmed that there were three cancellations that month.
Mr Adams said it was not clear if the public data on cancellations reflected that some patients had their operations cancelled multiple times.
BBC Disclosure asked every mainland health board for filming access to facilities and all declined.
Senior clinicians from four health boards, including NHS Lothian and Greater Glasgow and Clyde, were denied permission by their employers to participate in the documentary.
Health Secretary Humza Yousaf told BBC Disclosure that the Scottish government would listen to concerns being raised by medics speaking in the programme, adding: "I guarantee that they shouldn't have any repercussions."