On Tuesday this week I drove up to Burton-on-Trent to give a talk at a study event for healthcare professionals who are involved in supporting people living with MND. The event was organised by one of my colleagues Jackie Dornford-May, the regional care development adviser for the area. There were two speakers at the event, myself and the Nottingham care centre co-ordinator Carol Gent – I had agreed to give an update on MND research.
I checked the route before I left the office, however, clearly not quite carefully enough, as I took the ‘scenic route’ through Burton by mistake, going past the Marmite factory as result (I wonder if they make all the spin-off products there too?) Despite my route, I arrived in good time and was lucky enough to hear the end of Carol’s talk on supporting carers of people with MND.
There were maybe 15 or 20 people in the room, after Carol’s talk there was a refreshment break to allow people to do some all-important networking. Then I was on! I gave people an overview of what motor neurones are and how long and physically fragile they are, before moving on to the nitty-gritty of the latest news in research. I had tailored my talk to the audience, so I talked more about our healthcare research programme than I normally would. We are funding four of these projects – ultimately their aim is to improve the quality of life and standards of care for people living with MND. The projects range from understanding how newly emerging technologies and interventions such as NIV and cough assist machines may help people with MND manage the symptoms of the disease to developing more accurate ways of measuring quality of life.
I concluded my presentation by talking about unproven treatments. What are unproven treatments? Well, literally anything where the safety or beneficial effects have not been demonstrated clearly, in an objective and scientifically rigorous way. Our team is often contacted by people who have read something on the internet and would like to get our thoughts on whether the claims are true. We recognise that making decisions on whether to buy or receive these treatments is tricky.
If you have any queries on unproven treatments or any queries on research, you can put a voice to the words (as opposed to a face to name!) and phone us, our number is 01604 611 880 or our email address is research@mndassociation.org.
These educational events keep healthcare professionals up to date with a range of aspects around living with MND. I hope that my update on the latest news in research gives them, and people with MND that they may be in touch with, hope for the future.
