London vs Russia

One of the biggest challenges that Russia suffers from is that the clinic is in… Russia. People the world over have biases against places like Russia: are the hospitals falling apart, is the paint peeling off the walls, arestaff good enough, is it still in the Cold War era…?

Seeking HSCT as treatment involves hitting Facebook hard. There are so many excellent, so many wonderful Facebook groups that deal with different aspects of HSCT on that social media that the information available to potential candidates is almost overwhelming. There are files and photos, this and that information sheets and everything that you can ask for. Literally, everything you could ask for. You can ask a questions to one of these forums and have a host of answers within half an hour completely satisfying requirements.

What soon became abundantly clear was that the Russian clinic was and is the foremost clinic in the world. Not only is it completely up together, efficient, well run, caring and so on, but it also has the best results in the world from the best team in the world.

This puts it against NHS provision in the UK. The problem with trying to get it on the NHS is that the time span is not something that works in your favour. As far as I can work out, it would have taken about a year or so to even get on the system and the eligibility criteria to being accepted for HSCT in London is very tough and doesn't particularly profit PPMS sufferers.

To make matters worse, the infection and mortality rates are slightly worse in the UK than they are in Russia.

I could go on with a few more details, but the reality was this: save £40,000 and wait perhaps a year to be told that I wasn't eligible for HSCT in the UK. This would mean that I would save a lot of money but my disability might have progressed to be much worse, such as being in a wheelchair, before being given a treatment, but  only if I was very lucky, to halt my progression where it was (which would have been a much later stage of disability).

On the other hand, I could pay £40,000 to get the treatment almost straight away from the best clinic in a world with the hope of halting progression of my disability pretty much where it was at that point. The team is arguably the best team in the world (Dr Federenko is superb), The facilities are amazing, the place is exceptionally clean, the machinery is better, the staff are incredibly efficient, the infection rates are better, the mortality rates are better, and I think the success rates in general are better.

To Russia with love.

Well, a ton of hope, anyway.