SuppliedThe family of a young Midlothian dad who died following a 13-hour wait at Edinburgh’s Royal Infirmary believe he may have survived had he been seen earlier.
Dylan Jones, from Loanhead, was born with a rare genetic disorder called Jeune syndrome, which affects around 600 people in the UK.
The condition can impact growth and internal organs. In Dylan’s case, the disorder affected his liver, spleen, and kidneys.
The 28-year-old had cirrhosis of the liver, and his spleen was positioned in front of his ribs instead of behind them.
On December 10, the fibre engineer suddenly started to experience pain in his side whilst at work. He told his mum the pain was “bearable” after returning home and lying down.
SuppliedDylan called his mum while she was at the shop, saying he was unable to move because of the pain, and his stomach had started to swell.
Emergency services were called, and an ambulance arrived two hours later.
Dylan was taken to the A&E at Edinburgh Royal Infirmary, where his family say he lay on a trolley in the corridor for another 13 hours waiting for an MRI scan.
It was later found that his spleen had ruptured and he had been slowly bleeding internally. Emergency surgery was carried out to stop the bleeding before he was placed on a ventilator.
He also required a number of blood transfusions.
Dylan was eventually placed in an induced coma and transferred to the intensive care unit.
His family were told he required a liver transplant as the organ had started to fail. However, this was deemed to be too much of a risk due to his condition.
The fibre engineer died five days before Christmas.
His family believe that if the dad-of-three had been seen just hours earlier, his life could have been saved, and they say that lessons need to be learned from his death
His cousin, Billielea Porter, told STV News: “As soon as Dylan’s spleen ruptured, he became critically ill.
“The whole time he was there, Dylan was fighting to survive, but everything was going against him.
“I think if a person with a rare condition needs emergency treatment, they should be seen as a priority because their life is on the line.
“If he had been seen even just two hours after he arrived, Dylan might have lived.”
SuppliedBillielea described her younger cousin as an “amazing person” who always “lit up a room”.
The hardest part for the family was explaining to Dylan’s three young children that he had passed away.
Billielea added: “It was really difficult because his children didn’t understand.
“We told them to always look at the brightest star and the moon because their dad can see that as well.
“Everywhere they go, their dad will be watching over them.”
Scottish health secretary Neil Gray shared his “heartfelt condolences” with Dylan’s family and said the long wait he faced at Edinburgh Royal Infirmary was “not acceptable”.
He said: “Excessively long waits are not acceptable and I apologise to all patients who are waiting too long.
“We are determined to do more, and we want everyone to receive the best possible care and treatment.
Supplied“We are working closely with NHS Boards to improve patient flow, reduce waiting times for emergency care and diagnostic tests and ensure they have the support needed to manage peaks in demand this winter.”
Medical director for NHS Lothian, Dr Tracey Gillies, has apologised to the family “for the time it took to provide a bed in a specialist ward” after Dylan arrived at A&E.
The health board say the 28-year-old was “clinically assessed, treated and monitored” as he waited for a bed.
A full review regarding Dylan’s treatment is now under way.
Dr Gillies added: “Sadly, Mr Jones suffered a ruptured splenic artery aneurysm the next day and died ten days later.
“There is no evidence at the moment that the delay in obtaining a bed delayed specialist care or had an impact on the sad outcome.
“A full review is under way, and we will discuss directly with the family.”
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