MS patient: £60,000 pioneering stem cell therapy changed my life

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 that, while a small number of MS patients in England can undergo the treatment for free on the NHS, 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

Lucy Clarke and Rona Tynan from Inverness who both have MS.

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. 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

Ms Clarke undergoing the aggressive stem cell treatment in Moscow in May 2015.

Ms Clarke, pictured with Dr Fedorenko, as she undergoes the treatment in the Russian hospital.

sergeant and mother-of-two from Inverness, also has secondary progressive MS. She already uses 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 £4,000, 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. However, the Herald is aware of patients in Scotland approved for the treatment by NHS England only to be refused funding by their health board. The Scottish Government said referral decisions were “for clinicians”.

Mrs Tynan said: “It seems crazy to me that Brits are going to Chicago and Mexico and Russia for a treatment that in the longrun 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.”