LUCY Clarke was facing a “downhill spiral” when she flew to Russia to undergo a cutting edge stem cell transplant.
Two years on she says the procedure not only halted her illness in its tracks, but reversed much of the damage inflicted by multiple sclerosis.
The 41-year-old from Inverness is now backing crowdfunding efforts so that her friend and neighbour, Rona Tynan, can receive the same life-changing operation in Mexico before she becomes too ill to qualify.
Mrs Tynan, 50, has until the end of August to raise the £60,000 needed.
However, both are angry at a cross-border divide which means that a small number of MS patients in England can undergo the treatment for free on the NHS, while in Scotland – despite having some of the highest rates of MS in the world – the health service has refused patients' funding and no clinical trials are planned.
Mrs Clarke, a chemistry graduate and acupuncturist, began investigating AHSCT (autologous haematopoietic stem cell transplantation) in 2014 after her condition progressed from relapsing-remitting to secondary progressive MS. At the time her son was three and she feared ending up in a wheelchair.
Although the treatment has been available overseas for decades, it has never been routinely available on the NHS and is considered unproven by many neurologists.
It is also a highly aggressive therapy, using intensive chemotherapy to strip out sufferers’ faulty immune systems before replenishing it with stem cells harvested from their own bone marrow – or donor tissue. Despite the risks, many patients – including Mrs Clarke – credit it with transforming their lives.
She underwent the procedure in Moscow over a period of four weeks in April and May 2015. She said: “From when my son was three to when I had the transplant, my walking had deteriorated, I needed to use a walking stick all the time, I had very poor balance, debilitating fatigue, I had brain fog, I used to slur my words.
"I’m left-handed and my left hand was really weak so my writing was bad. Other things would come and go – numbness in my legs, tingling, cramps in my calves, sore and painful legs. The majority of them have gone since the transplant.
“I noticed quite quick improvements in things like balance. The biggest thing is not really having fatigue, and the brain fog completely went. I stopped slurring my words quite quickly after treatment. I was more alert. I had more concentration, more focus. Within six months the shaking in my left arm had gone. I’ve still got drop foot in my right leg and I still use a walking stick, but once you’ve got to the stage of secondary progressive it all gets a bit scary. Things are going downhill and you’re told there’s nothing that can be done, so really my goal from treatment was just to halt the progression – to know I wasn’t getting any worse. Thankfully, and luckily, I have seen lots of benefits.”
Eighteen months on, MRI brain scans show no signs of disease progression and while Mrs Clarke stresses that the treatment is neither a “magic bullet” nor “a walk in the park”, she is supporting Rona Tynan’s bid to undergo the same surgery in October.
Mrs Tynan, a retired Metropolitan police sergeant and mother-of-two from Inverness, also has secondary progressive MS. She is already in a wheelchair and fears that unless she undergoes the treatment soon she will become too ill. She said: “I’m a 7.5 out of 10 on the disease progression scale, where 10 is death. Most clinics stop taking you at seven, but Mexico just raised it to 8.5. That’s brilliant for people like myself, but I can’t afford to get any more ill.”
So far, Mrs Tynan’s fundraising page on JustGiving has raised nearly £4000, but she is frustrated that more is not being done to help Scottish patients. In England, clinical trials are ongoing in London and Sheffield but a small number of patients with relapsing-remitting MS can be referred for the treatment “off-trial”, for free, on the NHS. In Scotland, however, eligible patients have been turned down for NHS funding.
Mrs Tynan said: “It seems crazy to me that Brits are going to Chicago and Mexico and Russia for a treatment that in the long-run could save the NHS loads of money. Scotland is one of the worst places in the world for MS yet in England you can get this treatment for free. Why aren’t we fighting in Scotland to get this?”
Mrs Clarke added: “It’s very unfair. It just seems a no brainer to me why they wouldn’t make it available – not for all patients but for some.” The Scottish Government said referral decisions were "for clinicians".
A spokesman said: "Whilst the vast majority of healthcare provided by NHS Scotland is delivered in Scotland, NHS boards can commission treatment in other countries on an ad hoc basis, particularly where highly specialised treatment is involved. Decisions to refer patients are for clinicians, based on agreed guidelines, which ensure best practice, equity of access and consistency of treatment for all patients.
"HSCT is not currently widely available anywhere on the NHS, but people from Scotland can participate in trials held in other centres across the UK, where clinically determined appropriate and beneficial."
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereLast Updated:
Report this comment Cancel