AIMS Mission Statement
To preserve and protect the health and wellbeing of UK patients suffering from Multiple Sclerosis and Autoimmune disease, in the provision of signposting, support and grants.
AIMS – The Story So Far…
A Bit About Us
In 2011, James Coates was diagnosed with Multiple Sclerosis. What began as an annoying sensation in his leg (foot drop), rapidly progressed to a whole host of limiting symptoms. Over the course of the next 5 years, James tried several different things to slow down or halt his progression. As a person with Secondary Progressive Multiple Sclerosis, the number of options was limited
In 2014, we came across something called a Haematopoietic Stem Cell Transplant. On querying the treatment with neurologists, we received two reactions – the first “can you spell that for me? I’ll look into it.” and the second “I’m afraid I’d only recommend HSCT to someone with six months to live – it’s extremely dangerous and experimental.” This was to be an introduction to the general misinformation offered by (some) neurologists in respect of HSCT, and it has become a recurring theme as we at AIMS have spoken to many hundreds of MS patients on the journey to halt their progression.
We were not deterred, and continued to research HSCT which, far from being an experimental treatment for MS, has been performed for the condition for over 20 years now. Autologous HSCT for MS has a mortality rate of around 0.3% (according to Dr Richard Burt, speaking at the 2016 International HSCT Symposium in Sheffield). To put this into context, a 2006 study from the Royal Marsden Hospital (“Mortality within 30 days of Chemotherapy: a clinical governance benchmarking issue for oncology patients”: M E R O’Brien, A Borthwick and I E Smith - published by Cancer Research UK) found that there was a mortality rate of 1.5% in patients who were receiving potentially curative chemotherapy for gastrointestinal malignancy – that is, five times the mortality rate of HSCT for MS.
James was fortunate enough to be referred to King’s College Hospital, London, and was accepted for transplant in January 2016 – right before the BBC TV Panorama episode ‘Can You Stop My MS’ aired. Immediately after this, more and more patients asked their doctors for referrals for this supposed ‘miracle cure’. Many of the neurologists simply didn’t know how to respond, as HSCT is often out of their field of experience. Others seemed annoyed at having their professional opinion challenged, and refused to refer. Many, many patients – a lot of them with a stronger case for acceptance than James had ever had – were being turned away on the basis that their neurologist said they would not meet the criteria. We began to see a huge influx of members in the UK HSCT forums, as people desperately searched for answers and support. We found that a lot of misinformation was being given to MS patients (“HSCT will kill you”, “HSCT doesn’t work on your type of MS”, “HSCT can only be used if you’re under 40” and many variations on the same theme). It became clear that of the estimated 120,000 people in the UK with MS, most them were not being given accurate information about HSCT.
James had a successful transplant on July 25th 2016. Over the coming weeks and months, he discovered that he was seeing improvement in many of his other symptoms. James’ mobility remains the same, as the damage causing his foot drop was permanent in SPMS, but his overall quality of life has improved enormously. As he began his recovery, James and his wife Alison felt very strongly that they wanted to help others on this same journey to halt their MS. It quickly became apparent that there were other like-minded individuals who felt the same way – and thus AIMS was born.
Our trustees have either had HSCT themselves (like James, Becky and Mark), or they are the partner of someone who has had HSCT (Paddy and Alison ). All of them are fully committed to supporting people seeking HSCT for MS.