Darren Fields will never forget the day his consultant told him he had the wrong illness. “What he actually meant was that multiple sclerosis (MS) was the wrong illness to have in the UK, because it is not a priority,” says Darren, who discovered later that a treatment feted for halting the disease was out of reach, because he had to trial other treatments first.
Darren, 48, always knew that developing MS was a possibility as his mother and sister are sufferers. Because of his awareness of the condition, he was immediately able to identify the signs others would miss – so, when he woke up one morning to find his legs had gone hard, he knew what was happening.
MS is an autoimmune condition that causes faulty immune cells to attack the nerves in the brain and/or spinal cord. It causes symptoms that include problems with vision, balance and co-ordination, as well as muscle stiffness, and there is currently no cure.
Once diagnosed with MS, Darren was treated with disease modifying therapies (DMT), but the side effect of one caused liver problems, and another made him vulnerable to a deadly brain infection. This drug was also prescribed for a two-year period by doctors who told him taking it was at his own risk.
Unfortunately, Darren’s symptoms were progressing – he was getting a tight feeling around his chest known as the MS ‘hug’, tingling down his left side, and random symptoms, such as discomfort in his eyes and pain down his leg. Being in constant pain made it difficult to concentrate and function properly.
All the while, Darren, a member of Radlett United Synagogue, was researching MS and its different treatments. He had discovered that haematopoietic stem cell transplantation (HSCT), normally a treatment for people with cancer, was also producing good results for MS sufferers.
When he told his doctors he wanted to pursue this treatment at a Russian clinic, they dismissed the idea. “They said no, it’s too extreme, you’re not bad enough, it’ll kill you,” he recalls.
“It’s not right – I look at those I know with MS who are now in a wheelchair or use walking sticks. They could have been in a better place having had this treatment.
HSCT is a complex treatment involving high doses of chemotherapy followed by a bone marrow stem cell transplant to ‘reset’ the immune system. It does not regenerate damaged nerves, but aims to kill off the abnormal cells attacking the nervous system, thereby reducing inflammatory damage.
Darren knew that this treatment carried its own risks, notably death as a result of the immune system being wiped out.
“But it had got to the point where I had done sufficient research and followed enough people who had got through this treatment to decide that the science of it made sense,” says Darren.
“I told my neurologist I was going to do it privately, and he said, ‘I’m not going to talk to you out of it – it’s the best treatment for MS’.”
At the time, HSCT treatment in the UK was undergoing clinical trials for which Darren did not qualify, as his doctors did not consider his condition to be sufficiently advanced.
“But the symptoms I had clearly showed my MS was progressing,” he insists. “I had also read enough to know that the earlier treatment is received – when there’s less damage – the better. Drugs will hold it at bay, but they don’t destroy it.”
Darren’s belief was confirmed in March with the findings of the first ever international large scale randomised trial into HSCT in relapsing remitting MS. It showed that the treatment stopped the disease and significantly improved disability.
The results have been described as a “game-changer”, although the trial co-investigators pointed out that longer-term evaluation is necessary and that the treatment is not suitable for every person with MS.
But Darren wasn’t prepared to wait around and, in October 2016, flew to Moscow’s Pirogov Centre where, over four weeks, he underwent the gruelling HSCT treatment, spending 10 days in isolation at a private cost of £40,000.
A year later, he returned to Russia to be told his lesions had shrunk and there was no sign of MS. Doctors also believe he has a 95 percent chance of staying MS free.
Overjoyed by his own recovery, Darren is disappointed others with MS aren’t given the option of HSCT treatment. “It’s not right – I look at those I know with MS who are now in a wheelchair or use walking sticks. They could have been in a better place having had this treatment.
“UK doctors did not identify any new or active lesions, but in Russia they said my MS was highly active. Had I not gone there, I’d have had a major relapse and who knows what would have happened?”
Darren also believes the cost of HSCT should be seen in the context of the long-term impact to the NHS to support an MS sufferer.
“The treatment costs £40,000, but the drug I was taking costs the NHS £5,000 per month, which is £180,000 over three years. Add to that the risk of progression with no ability to work, benefits claimed, and care providers and you can see the cost to the NHS is millions per patient – but it doesn’t have to be.”
Jodi Jackson is another success story. The mother-of-three was diagnosed in March last year with an aggressive form
of MS. Doctors told her she would be wheelchair-bound within 12 months and palliatively looked after within five to
The diagnosis, after waking up one night feeling strange with numbness in her leg, came as a complete shock; Jodi had been a six-days-a-week gym-goer. By the time she was diagnosed with MS a few weeks later, she was suffering spasms in her arms and legs and couldn’t walk.
“In hospital, I started manically researching HSCT from legitimate sources such as The Lancet. But all the consultants were saying, ‘Don’t do it, you’ll die’.”
“It was a bit of a ‘Sophie’s Choice’ situation for me – do nothing, take the drugs and end up in a wheelchair on the sidelines of my children’s lives, or take a risk but possibly halt the disease forever,” she admits.
Jodi, who lives in Arkley, talked to specialists about HSCT, one of whom told her she was a perfect candidate.
However, she did not fit the criteria to have it on the NHS so opted to go private and was treated last October at London Bridge Hospital (part of HCA Healthcare UK) under specialist Dr Majid Kazmi.
It wasn’t easy. “My kids went to live with my brother, and I only saw them twice. I lost all my hair and I was very weak from the chemo,” she recalls.
But she hasn’t looked back. The severe aches and pains, fatigue, pins and needles, ‘head fog’ and problems walking have all gone, while the lesions have shrunk.
“They don’t call it a cure – they call it a halting of the disease,” she explains. “I’m out every day and back in the gym – it’s like it never happened.
“MS is a very cruel disease: it can hit you at any time. Once there’s permanent damage, there’s no reversing it. I realise the treatment is not for everyone, but if everyone knew about it, at least they’d have the option.”
Dr Kazmi explained that patients need to meet the criteria drawn up by the pan-London MS multi-disciplinary team to be suitable for a transplant under the NHS.
“This is a pragmatic consensus, based on where the strongest evidence base lies alongside what would be acceptable to UK neurologists when considering HSCT against other licensed therapies.
“It can be considered a little conservative and, with the early results of the MIST study, the need to fail at least one highly active DMT may be criticised.
“In the private setting, we have a little more flexibility around the criteria, but would still need to be sure that HSCT offers an appropriate risk/ benefit ratio for the individual patient.”
Dr David Schley of the MS Society says: “HSCT is an important development in MS treatment and we’ve seen life-changing results for some people. “It can help prevent MS symptoms from progressing and, in some cases, even improve them.
“However, results are varied and, unfortunately, HSCT doesn’t seem to be effective for all types of MS, which affects 100,000 people in the UK.
“We strongly encourage anyone considering HSCT to discuss this carefully with their GP or neurologist, who can help you weigh up the risks and potential benefits.”
For further information about MS and HSTC treatment: