Palliative Care in Neurology Conference
Colin Fellows, Surrey Support Group Leader, and diagnosed with MSA himself, was recently invited to the Optcare Neuro “Palliative Care in Neurology Conference” to talk about his views on future priorities for research.
As part of the day people with neurological conditions and representatives from different charities got the chance to share how they thought future research should be directed.
Here’s Colin’s speech from the day, which went down very well, highlighting some of the concerns and obstacles that people with a rare disease like MSA, can face…
“Good morning
My name is Colin Fellows, and I have MSA – Multiple System Atrophy.
I have been asked to speak for a couple of minutes about where fellow sufferers would like to see research funds applied. I will be embarrassingly unscientific – I’ll leave that to the extraordinarily big brains in the room. I will be unashamedly biased – for obvious reasons.
I’m sure you all know that MSA is incurable, progressive, untreatable and terminal. There are around 3,300 sufferers in the UK and 66 new sufferers registered with the MSA Trust in the first quarter of 2016. Approximately 650 cases are diagnosed each year in the UK.
It is a very rare condition which is difficult to diagnose. Few GPs have heard of it, and the symptoms generally are initially diagnosed as being those of Parkinson’s.
As Professor John Hardy, Head of Neuroscience at UCLH, so eloquently points out in the MSA video, patients will often have been suffering for years – perhaps decades – knowing they don’t feel quite right, but looking OK.
I was finally diagnosed in 2011. My GP was great – she sent me for exhaustive tests, and admitted to her frustration at being unable to explain the symptoms that I had been experiencing for many years. Finally, a friend, who happens to be a urologist, suggested I see a neurologist who was able to make the diagnosis, which was devastating both personally and to my family. Our lives and plans have had to change in order to accommodate the condition.
Current treatment is inevitably to take more and more medication to alleviate the symptoms – I am prescribed 8 formulations a day at present.
My future is certain and likely to be most unpleasant. I am so far confounding science with the slowness of my deterioration – for which I am grateful – so I am using my situation to help by volunteering as a lab rat for various clinical trials and projects, running the Surrey MSA Support Group, sitting on the OptCareNeuro PPI panel and standing here today, on behalf of all my fellow sufferers, asking for your help:
- My MSA colleagues feel that rare conditions aren’t prioritised for research. Is it because drug companies won’t be able to recoup the costs of development as there are simply too few sufferers? Or is it because researchers don’t want to limit themselves to “niche” research? Either way, what can be done about this?
- Each neurological condition seems to have its own research silo – is it possible to work across the conditions and share findings?
- People living with conditions often don’t know about the research being carried into their disease, they don’t know how to get involved, their support group isn’t informed, and they aren’t put forward for trials by their GPs and consultants.
- It seems to take too long for research to be applied to sufferers. Why isn’t it possible to fast-track potential treatments as happens with some cancer drugs at the end of life?
I’m sure you have heard all this before. But we can always do more, and we have some “stellar researchers on board” to quote Professor Fowler, MSA Chairman. But research costs money. Please spend your funds wisely.”
The MSA Trust will always try our upmost to keep members informed of research projects or clinical trials that people could become involved with. It’s also worthwhile letting your neurologist know if you would be willing to take part in any research so they can put you forward for anything suitable. Please let us know if you are currently involved in anything that others may join in with or which may benefit others.
Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.
If I can do anything please ask I have been given a digaision in 2013 with m s a . My name is Teresa