A FORMER law student with a rare genetic condition which causes his knees to dislocate 30 to 40 times a day says he is now so desperate he would prefer have his legs amputated to ease his ordeal.
But 30-year-old Robert Wilson, from Fife, says he and other disabled people are being "discriminated against" by "farcical" self-isolation rules which make preparing for surgery impossible.
NHS Fife insist that concessions "can be made" for patients, but Mr Wilson's MP is now raising his case with the Scottish Government after reaching a “dead end” try to broker a solution for him with the health board.
Mr Wilson has been on prescription opioids since he was 15 to cope with the pain caused by his Ehlers-Danlos syndrome, but says the condition - which weakens connective tissue such as ligaments - has robbed him of the ability to hold down jobs or enjoy a social life.
"It's not possible for you to exist in any human sense if you're having 40 dislocations a day," said Mr Wilson, who lives with his mother and her partner in St Monans.
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Mr Wilson favours a double amputation of both legs above the knee, though this would be a high-risk procedure due to his Ehlors-Danlos which complicates how patients respond to anaesthetic and recover from surgery.
"I'm acutely aware that I'd probably spend the rest of my life in a wheelchair and leave me with a life that was little better than an existence, but at the moment my existence is just to suffer.
"I'm trapped in this situation where my family have basically become unpaid carers and there is no way for me to progress with my life in any shape or form."
His orthopaedic consultant has suggesting "fusing" the joint instead, which would leave his lower legs permanently at an angle and immobile - something Mr Wilson describes as a "fate worse than death".
He has been offered an "exploratory" procedure by NHS Fife to evaluate his options, but cannot proceed due to requirements to self-isolate for two weeks prior to being admitted to hospital.
"I've got no doubt that the current isolation process for operations is designed the way it is so that it gets a lot of people like myself off the waiting lists," said Mr Wilson.
"If you have a disability where you need people around you to support you with your day to day activities, which ashamed as I am to admit it, I do, you're not actually able to isolate under their definition of isolation and you're therefore not eligible to have an operation.
"The information I was given is that I would be expected to isolate myself within a room in the property, and if I needed to call out paramedics to reduce a particularly difficult dislocation or I needed to go to the Victoria Hospital A&E for assistance then that would immediately breach the terms of the isolation, and the operation would have to be stopped.
"I was under the impression that healthcare workers were among the first to get fully vaccinated.
"I've had my first one and I don't leave the house other than for medical reasons. The two people I live with have had both of their jabs and only go out for food shopping, so I'm struggling to see how we're any risk whatsoever."
Mr Wilson's condition deteriorated during lockdown last year when he spent months alone caring for his terminally ill father, who had Multiple Sclerosis, and needed help being lifted and hoisted.
He now uses crowbars or wrenches on a daily basis to force his stuck kneecaps back into place rather than wait hours for paramedics.
"On an average day, if I have 40 dislocations I would say about five of them are stuck ones," he said.
"I'd fight for an hour or two to get it back in before calling an ambulance, but even a month or two ago I'd still be waiting an hour.
"Now, because the ambulance service is getting busier, and A&E is getting busier, I've waited five or six hours for an ambulance."
Mr Wilson, who studied at chemistry and nanotechnology at Hull University before transferring to Dundee University to read law, has lost a string of jobs due to sickness absence and is desperate to be able to work.
His predicament is also taking a toll on his mother, who he says is losing her hair due to stress and regularly bursts into tears.
He said: "I've had so many preferred career crushed over the years as a result of my knee situation, that I don't care what job I have as long as I have something gainful to do.
"My family shouldn't have to go through this. I feel an immense amount of shame.
"I'm not asking for the NHS to turn me into the Bionic Man - I'm merely asking for the ability to have a manageable health situation, and I don't think that should be too much to ask."
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Mr Wilson added: "My consultant has made it abundantly clear to me that I'm certainly not the only one of his patients who is, in his words, a 'critical orthopaedic situation'.
"As awful as my situation is, I can't help but wonder quite how many people there are out there who, as a result of not actually being treated for nearly two years, have been left far more disabled than was ever needed.
"They're the quiet casualties of Covid."
North East Fife MP Wendy Chamberlain said: "The daily struggle and pain that Robert has to endure is unimaginable for most of us but despite that he always has shown remarkable fortitude and understanding.
"Now he just wants to get on with his life and contribute to society like everyone else.
"What makes Robert's situation so frustrating is that there is a solution in sight which everyone agrees is the best initial way forward, but procedural issues are preventing the operation from going ahead.
"Discussions with NHS Fife have unfortunately reached a dead end, so I have now written to the Scottish Health Secretary in the hope that an answer can be found quickly."
NHS Fife said it cannot comment on individual patients due to confidentiality.
Medical Director, Dr Christopher McKenna, said: “While patients are routinely asked to self-isolate prior to surgery, it is not uncommon that some individuals are unable to for medical reasons.
"In such cases, concessions can be made where it is safe and appropriate to do so.”
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