Scottish rugby legend Doddie Weir has described the NHS’s treatment of motor neurone disease sufferers as “cut-throat” and “dreadful” as he spoke of his determination to live for as long as possible to see his children grow up.
The former internationalist broke down on stage at the Edinburgh International Book Festival has he recalled how having MND had impacted on his family.
Edinburgh-born Weir, 49, who was diagnosed almost three years ago, suggested he had been abandoned and left to die since his original diagnoses, and told how he had refused to give in to the disease.
Weir, hinted he was working on a follow-up to his best-selling autobiography, told a sell-out crowd at the book festival how MND was treated like a “chest infection” by the NHS, recalling how he was effectively told to go “into a corner and die.”
The former internationalist, whose charitable foundation has raised more than £3 million to help fund research projects across the UK and investigate possible cures, said the lack of drugs available to treat the condition across the country was “disgraceful.”
Weir, who was given a standing ovation after his book festival appearance, revealed he was now unable to touch his head and needed both hands to drink a pint.
Recalling the impact of his diagnosis in 2016, Weir said: "The professor basically said to me: ‘You’ve for MND, get yourself a care nurse, get yourself into a corner, you are going to die. That is it, we can’t do anything for you.'
"It’s basically a muscle wasting disease, so if I’d done more weight training I might have another 30 years still to live. I should have stuck in more. But eventually your leg muscles disappear, your arm muscles disappear, I can’t touch my head now, but I can drink a pint, not with one hand but with two. You’ve got to adapt. Eventually you can’t speak, can’t swallow, it’s horrific in every sort of manner.
"Every patient has to go home and self care, by look at the computer and see what is going to help. It’s like going to the doctor with a chest infection. The doctor will say: ‘Yeah, you have a chest infection, off you go.’ Nine times of 10 you will get a prescription to try to help you.
“But with MND there is no advice, there is no prescription, there is nothing. I thought it was dreadful. That’s how cut-throat it is. The medical service don’t help you at all. I’ve not spoken to my professor for two and half years to try and help me.
I found a chiropractor, I go swimming, I do deep sports massage.
"There was not even anything about doing some exercise, eating some asparagus, or drinking red wine and Guinness, which has been absolutely brilliant for me.
"When I was told I had MND I was told I wouldn't be here in a year's time it gave me a bit of a fright. It kind of spurs you on. It gave me a bit of fright being a professional sportsman and being quite active. I've got three young kids, so I really want to grow up with them and see what they're up to. They spur me on quite a bit as well.
"When you're in this situation you've nothing to lose. I go back to rugby and the lovely education it has given me. If you're willing to give up your jersey you will sit back and do nothing. My goal is to try to make a difference."
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Earlier this year Weir revealed he had been forced to seek private treatment in the United States after being denied an experimental drug in the UK.
He told the book festival audience: "There's been one drug that came out 25 years ago that is supposed to extend your life by three months, but otherwise there is nothing else. I think that's disgraceful."
Craig Stockton, chief executive of the charity MND Scotland, said “MND is a progressive neurological illness which stop signals from the brain reaching the muscles, causing them to weaken and eventually stop working.
“There is yet no known cause for MND, and unfortunately no cure or effective treatments. We empathise with Doddie’s frustration to find therapies which will slow the progression of this devastating disease, and share his passion to find a cure.
“MND Scotland is committed to funding vital research into MND, and has pledged £1.5 million into bringing MND drug trials to Scotland.
"Last year we part-funded the first MND drug trial in Scotland in over 20 years, however we still have much to do. We are working hard, with researchers and health professionals across the UK, to make our vision of a world without MND a reality.
“People with MND are at the heart of everything of we do, and until we find a cure we’re here to support families in Scotland who are affected by the this cruel disease.”
Scottish Conservative shadow health secretary Miles Briggs said:“Motor neurone disease shouldn’t be a mystery to the NHS any longer.
“By the time of Doddie Weir’s diagnosis there had been many other high-profile cases in Scotland, and awareness was very much on the rise.
“But these revelations suggests that’s simply not being the case, and far more needs to be done.
“The Scottish Government needs to lead from the front on this, and ensure care for MND patients improves immediately.”
The Scottish Government said the then Health Secretary Shona Robison had met Weir last year to discuss his concerns.
A spokeswoman added: "Doddie Weir deserves enormous admiration for the courage and dignity he has shown in fighting motor neurone disease.
“We want to ensure that people living with neurological conditions, such as MND, have access to the best possible care and support across the country. We invest £2.4 million annually in a specialist nursing and care fund which, since 2015, has more than doubled the number of MND nurses across Scotland.
“Working closely with the neurological community, people with lived experience, third sector organisations and health and social care professionals, we are developing Scotland’s first national action plan on neurological conditions, which will be launched later this year. The vision is for everyone to be able to access the treatment, care and support they need to live well on their own terms.
“For a medicine to be made routinely available in the UK, manufacturers need to obtain regulatory approval. This process tests the safety, quality and efficacy of the medicines. Unfortunately, most of the medicines to treat MND are still in development and therefore do not have the necessary regulatory approval for use in the UK.
"Whilst we wish to see any new and ground-breaking medicines made available as quickly as possible, safety must remain paramount.”