John Young shows me a photo of himself in the summer of 1977. In the picture he’s standing on a bridge wearing a blue vest and flared jeans, holding his two year old son John in his arms. His other two children – Lesley, aged 9, and Jill, 7, are standing either side of him looking at the camera.
It was a family day out to cherish in Inverness, the best of times, Young says, who is with his wife, Margaret, at their Livingston home talking about the past. A former gunsmith who repaired high-end sporting guns for the royal family and heads of state, he enjoyed hunting and fishing and precious family holidays, such as the trip to Inverness.
Young looked fit and healthy that day, but less than three months later his life was ruined at the age of 32 after a routine procedure at the Western General Hospital, Edinburgh, left the father of three paraplegic.
For 44 years Young has been fighting for justice and he is speaking to The Ferret about a life-changing, devastating experience – alleging there has been “medical negligence, lies and cover-ups”.
During what was supposed to be a straightforward diagnostic procedure, Young was injected with a dye called Myodil prior to getting an X-ray to identify the cause of back pain he’d been suffering. It was a routine procedure called a myelogram which thousands of people had undergone since 1944. But a nurse failed to remove the Myodil later, despite official guidance from its manufacturer, Glaxo, that the dye should be removed. The failure to do so caused catastrophic damage.
Four days later during an operation to remove a tumour from his back the Myodil, still present in Young’s spinal fluid, mixed with his blood. This, Young says, left him paraplegic. He was later diagnosed with a condition called arachnoiditis, which causes debilitating pain and a range of neurological problems.
“When the dye (Myodil) mixed with blood it caused a huge reaction and that’s what paralysed me,” says the 76 year old. “I didn’t know Myodil had been used – they wouldn’t tell me. It took me until 1997 to get my medical records, with the help of the late Robin Cook MP. The Western blamed a blood clot. What I’ve found out is that if people in authority are wrong, it’s dangerous to be right. That’s where I am – that is how bad it is.”
Young alleges the Western General wrongly let him believe for 20 years that a blood clot caused his paralysis, and attempted to cover up its mistakes. The Ferret has seen a copy of the surgeon’s report following the operation to remove the tumour and there is no mention of a blood clot. Young also says his GP was misinformed by the hospital about what happened but despite decades of battling for justice he has not received a penny in compensation. In Scotland 73 people in Scotland were affected by Myodil and Young believes he is the only one not to have accepted money from Glaxo.
The use of Myodil, manufactured by Glaxo, caused problems worldwide. In Scotland, hundreds of patients were injected with the dye at the Western General between 1944 and the mid-1980s when it was discontinued. The dye was injected into the spongy tissue that surrounds the spine – the arachnoid layer – before an X-ray took place. It emerged in the 1990s though that thousands of people later developed arachnoiditis.
Glaxo withdrew Myodil from hospitals in 1987 on the grounds there was no longer a need for it. In 1995, however, the firm awarded 426 people in England and Wales £7m in total, while not accepting liability. Health boards were protected from legal action, which Young says was wrong. In Scotland a group of 73 people had also taken legal action and 72 of them later accepted £15,000 each in compensation from Glaxo. Young viewed that offer as derisory and rejected it, branding the Scottish litigation a “travesty of justice” .
He shows The Ferret a copy of a letter about Myodil litigation which was sent by a lawyer in 1996. It reveals there was an “arrangement reached with health authorities back in December 1991/January 1992” so that proceedings would not be commenced against health boards. The letter states: “It was clear that we were going to receive no co-operation whatsoever from health authorities if their doctors were at risk (of legal action).”
Young also managed to get hold of court papers from English cases and claims that people were denied information about hospitals allegedly misusing myodil. He argues that compensation payouts would have been higher if lawyers had focused on medical negligence by doctors instead of just the product liability of Myodil. “This way the final pay out would have been a fraction of the medical negligence claims,” he says.
The pain in Young’s back began in early 1976 but it kept coming and going so he wasn’t admitted to the Western General for a myelogram and X-ray until 1977. He knew nothing of the risks of Myodil and said he simply put his “trust in the people doing it”.
Young will never forgot the events of 24 October 1977. “I was taken down to the department where two women were – a younger woman and an older one. The older one took spinal fluid, the younger one then started injecting my spine. Unknown to me it was Myodil. They were looking for a spinal block but in the event the girl kept hurting me with the needles – she overdosed me with 12ml. It (the dye) was left in. The man in the next room gave her a row for taking too long…she became more and more flustered. She was younger than I was. She eventually gave up and ran back to the doorway. ‘I can’t get the dye out,’ she said. I was then put back into the ward lying flat. I suffered horrendous headaches and pain and they gave me tablets.”
Four days later, Young was operated on because the X-ray revealed a tumour in his back, which turned out to be benign. Problems started that evening, however, and Young told his wife Margaret he couldn’t feel my legs. The next day he collapsed in a hospital corridor after going to the toilet assisted by a nurse. “I remember sliding down the wall,” he said. On Sunday 30 October at 3am he was put on a trolley and taken to an operating theatre again. A surgeon came in “shouting that he should have been called in earlier”, Young added, and he was opened up under a local anaesthetic. “I was opened up awake…they were panicking,” he said.
Later that day Margaret was called to the hospital and told her husband was paralysed. She says: “He (a doctor) told me, ‘Do you want the good news or the bad news? The bad news was it was a blood clot, and if it had gone up over his brain he would have died. The good news was it went down the way – but he’s now paralysed from the waist down’.”
The family was shattered by the news and for the next 20 years they were left believing a blood clot had caused Young’s paralysis – until media reports about problems with Myodil emerged around 1990. He started making inquiries and in 1997 was diagnosed with arachnoiditis by a spinal neurosurgeon at the Cromwell Hospital in London. The doctor, called M C Crock, wrote: “He (Young) has gone on to develop one of the rarer complications of Myodil myelography which in his case takes the form of arachnoiditis ossificans of the cauda equina.”
Other medical experts provided letters of support for Young to back his claim that the Western General was at fault. Dr Clifford Rose, of the London Neurological Centre, wrote a letter in 1999, saying “attempts should be made to remove as much of the myodil as possible after the test is done.” He said that failure to do so “means that treatment has fallen below an acceptable level of care”. In 2011, a neurologist consultant with the Western General Hospital called Dr Ernest Jellinek, sent a letter to Young’s lawyer stating “there has been a failure of justice”.
There was also a damning report in 2002 prepared for Young’s lawyer by a consultant radiologist from Leeds called Dr John Lamb, who had represented Myodil victims in England. He wrote: “Surprisingly, since this hospital is a neurosciences centre, Myodil was employed as the chosen contrast medium in spite of its widely known and well documented liability to cause problems, in particular to cause arachnoiditis.”
Dr Lamb described the 12ml dose of Myodil dose as “excessive” and noted it wasn’t removed from Young’s back. He said Young was not informed about the myelogram procedure nor told of the risks. He also pointed out that Glaxo had advised removing Myodil in 1973, official guidance which was extant in 1977. Referring to the operation after the myelogram when the tumour was removed, he wrote: “Inevitably blood would have found its way into the subarachnoid fluid (spinal fluid) and would have mixed with the large amount of Myodil present”.
He concluded: “Had the Myodil been removed or even partially removed after the myelogram and at least before surgery, Mr Young would probably have escaped neurological damage. The decision to abandon attempts to remove the large volume of Myodil was a serious error of judgment. Mr Young has suffered and has been permanently incapacitated due to the Myodil employed for his diagnostic examination. Failure to remove the Myodil was unacceptable practice.”
After the Myodil scandal first emerged around 1990 Young had been following legal events down south. He claims people in England were denied facts and wrongly advised to accept compensation from Glaxo, arguing they should have pursued claims against health boards. He said “Glaxo was willing to take the blame to protect all the hospitals around the country” for staff negligence.
Glaxo initially offered John £11,000 as compensation but he refused to accept it. A few weeks later he was offered £15,750 but declined that offer too.
Young says lawyers have failed him despite all the evidence he’s obtained over past decades. His legal route has stalled because legal aid stopped funding and tried to time bar his claim.
The family has suffered terribly. Young’s daughter Jill, aged seven when her father was left paralysed, says his life was ruined forever on 24 October 1977. “Our 32-year-old dad was in the prime of his life,” she told The Ferret: “My mum, sister, brother and myself will always remain devastated. My dad gave all the information to legal aid as well as lawyers. Glaxo issued disclaimers on their own product and yet allowed themselves to be sued while they took the blame to protect the health boards.”
To Margaret Young, the injustice of what happened to her husband has been life defining. She said: “It’s my life and the kids’ lives. I mean, it’s shocking. They blamed a blood clot, and I accepted it and thought ‘right, we’ll have to get on and do our best’. And I went back to work to do a job, to keep us going. There have been lies and cover-ups. We’ve been fighting the whole system – it’s rotten to the core.”
Glaxo – now GlaxosmithKline – did not respond to The Ferret’s questions and request for a comment. NHS Lothian did though. Dr Tracey Gillies, its medical director, said: “I would like to express our sympathies to Mr Young and his family and I would always urge anyone with any complaint to contact us directly. We are unable to discuss the details of individual patients without their consent.”
Young – who suffered a stroke at Christmas – remains angry and says he won’t give up the fight. He says it’s not about the money – he just wants people to know the truth. Housebound, he has flashbacks to 1977 when he was operated on under local anaesthetic while wide awake. “I’m still stuck in the dark room. It’s like post traumatic stress, my own doctor said that’s probably what it is. I see it all the time…lying on the operating table, with them working on my back. The rest of the room is dark and the lamp is on me, without the anaesthetic…the Sunday, 3am in the morning…30 October.”
Photography by Angela Catlin. This story was published in tandem with The Herald.