Of all the money raised for medical research in the UK, only 6% will go towards disease management or quality of life issues, the rest towards funding work to find cures.
A cure for MS is of course the holy grail but with 100,000 people currently living with MS here in the UK, is it time we demanded a larger slice of the funding pie to research the problems and finding solutions for living with MS day-to-day?
Simon Denegri recently wrote a brilliant blog post about this subject (click here to read more), suggesting that our medical research economy seems to be fuelled by ‘test-tosterone’.
He raises dementia as a case in point, ‘we admonish ourselves for the lack of progress in discovering viable treatments over the last 20 years, but…just as troublesome is that there has not been the step change in how we care for people with dementia in that time either. Too many people continue to end their days institutionalised, pumped full of anti-psychotics and ‘taken care of’ by poorly trained staff.’
How does this translate to the MS community? Without a doubt, we are living in times of enormous strides in our understanding and treatment of MS which have greatly enhanced our quality of life. Yet we are also living through a period of great upheaval and fear, with Disability Living Allowance being replaced by the Personal Independence Payment and a growing media backlash against anyone with a disability.
Disease modifying treatment is wonderful. If you have relapsing remitting MS. For those with primary progressive or secondary progressive MS, treatment options are limited. Should more funds be diverted to research how we can live to the best of our abilities with MS? How we can keep more people with MS in employment for longer? How we could offer everyone with MS the opportunity to receive counselling to adjust to a life with MS, if needed?
A cure for MS would of course obliterate these problems, but how many of us would be cured? How far back can we hope to reverse the damage? In the meantime, we live with the symptoms, the stigma, the reduced life opportunities. As Simon Denegri states, ‘Fact is, you can have a hard time living with disease in the UK. You can also have a hard time dying from it too. Such is our obsession – our hyped-up expectation – that we will be able to treat ourselves out of existence.’
I believe that research is far too ‘cure’ driven and that resources are rarely channeled into developing structured solutions for living and coping with illness.
I have been living with MS for the past decade or so and have found the most effective way of helping fellow sufferers has been through working with a local MS Society branch. Here we can react quickly and effectively to provide help with everyday problems, whilst also providing a social outlet for anyone touched by this disease. Of course we contribute to drug research, but our main role is to deal with the more mundane ‘everyday’ issues of living with a chronic condition or caring for someone who does.
Unfortunately, social care, isolation and fear cannot be quantitatively measured, nor are they glamorous. Yet the bald facts are that medical research has not yet succeeded in a cure, and may not for some time. I would like to see a larger proportion of research funding directed towards building a reliable and coherent care framework.
You’ve hit the nail bang on the head, James. As long as no cure exists, surely there is a duty to research daily living issues for those of us who already have MS.
And yes, social care is not a cutting-edge, glamorous side of research. Not much kudos in it! Would be interesting if we were asked what we wanted research to look in to.
I just read this morning that research had been conducted into the science of applause. I kid you not. Apparently it is a ‘social contagion’. Words fail. Why is this important to anyone??
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Hello,
The development of drugs for MS is progressing incredibly fast. There are now drugs out there that stop relapses if you have RRMS. Are these a cure, well how long do you have to be relapse free to say that the DMT is a cure. For cancer its 5 years, MS it could be 10 or 15 years.
Re SPMS & PPMS there are drug trials in progress. I’m on a stage3 test of Tysabri but another 5 years before it could come to market. Its a very long, slow and hideously expensive process.
Care of people who are nearing the end of their lives is a different matter and must not be confused with development of drugs. Believe me there is an enormous push to develop drugs for MSers. Can I suggest you read the blog http://multiple-sclerosis-research.blogspot.co.uk/. Its put together by the research team from Royal London. They genuinely want to see a drug developed to people who have MS that stops our lives being destroyed. Also check out the MS website.
Repairing the damage caused by MS is another matter, that is the holy grail.
Regards,
Patrick
Thank you for that Patrick and I do agree with you.
I have been lucky enough to have had Campth (and I thank god every day). However, I will always have the same symptoms I had before the treatment – fatigue, heat intolerance, stumbling, etc. Not only that, I still face discrimination in work, I am still technically disabled.
So yes, I am hopeful I will be relapse free for over a decade but I am not cured.
My point was that I wish there was more research into living with MS day to day alongside the search for a cure.
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For me the scariest part about having ms is the thought of being ‘cared for’ in a home by individuals who have no conscience and are cruel and uncaring. I am horrified by stories I have seen in the media. There are many conditions that render people incapable of looking after themselves and what I would most like to see is money going into improving care including a more thorough screening of potential staff and rigorous training with exams that have to be passed. An awful lot needs to be done to improve care, rules/laws/standards/monitoring.
This is where funds desperately need to go.
It is wrong to neglect the quality of the lives of those living now for the potential cure of those in the future.
Hi julie,
I love your last sentence – it completely sums up what I wanted to write!
Your comment about care is really interesting. Having worked in the sector myself (and will never ever work in it again), I know from first hand experience just what goes on. The problem with the care sector is that the majority of staff (the carers) have very little (or no) training, but also that there is no career progression, it is a dead end job. Very few will hope to become a ‘senior’ carer (which means virtually nothing) and after that, there is nothing else to aim for. So it attracts unqualified staff. Turnover is high and the pressures great, with very little travelling time between calls. Corners are cut.
Anyway, this issue really should concern us all!
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I don’t know about these things but I wander if part of the problem is that no one is going to make a mint from demanding a care shake up, but someone will most definitely make a packet out of coming up with a cure, whether it’s for ms or any other debilitating condition, leaving those already suffering out in the cold.
it’s most definitely a Cinderella policy area. It’s not glamorous, it’s not exciting. I think social care has always been a poor relation to healthcare, even though the two most definitely go hand in hand!
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Oh, my. This is my fear too. I agree: funds need to be spent on more than just a cure (which would be amazing, of course). The cynic in me says there’s too much money to be made in treatments, though. God knows someone’s making a bundle off me…
Absolutely. Where would the medical companies be if MS were curable?? Too scary to consider that they would withhold cures.
Anyway, if they do find a cure, maybe they will market it so high that none of us could afford it?
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