I was kindly asked to give an update to members of the Redbridge Branch of the UK MS Society, at their annual general meeting, which was held at the Marjorie Collins Day Centre, in Chadwell Heath, yesterday (Saturday, 17th March, 2012). The members were very appreciative.
I do these types of talks often; they allow me to connect with MSers in the community and to see the type of day-to-day battles MSers have to fight to maintain local MS services. These battles are very different to one we fight in hospital-based practice. For example, they are particularly concerned with the closing down of their local MS clinic and the loss of their local MS clinical nurse specialist who has moved to the regional centre. As a result of this MSers now have to travel a long way to receive neurological care. I now know why delivering care in the community is so important for MSers.
I started my talk by highlighting the unmet need in MS and spent most of the time updating the audience about the emerging DMTs (both oral and parenteral). I soon realised that the audience was mainly made up of MSers with progressive disease who would not have access to these treatments as all the trials were being done in relapsing disease. The only good news I could give them was about the fingolimod and ocrelizumab PPMS trials.
I also spoke to them about the need for better trial designs for progressive MS and described the study design we are promoting using frequent lumbar punctures and neurofilament levels as an outcome measure. They were very interested in this and several MSers wanted to volunteer for the trial if it gets funded. This is reassuring; I am convinced we will not have problems recruiting for a trial that has multiple lumbar punctures as part of the trial design.
Finally, I concluded with symptomatic treatments focusing on Sativex (oral cannabis spray), for spasticity, and Fampridine, to improve walking speed. I showed them two examples of MSers who had responded well to Fampridine. The bad news is that the Redbridge PCT or funding Commissioners recently turned down our application to use Fampridine in MS. The panel were unconvinced with the primary outcome, which is the timed 25-foot walk. They don’t think an improvement in walking speed over 25 feet is clinically meaningful. How does an improvement in the 25-foot walking speed translate into improved quality of life for MSers? They are particularly interested in knowing whether or not Fampridine prevents MS-related falls. We simply don’t have this data at present.
At the end of the meeting one MSer, who was particularly cynical about MS researchers, wanted to know why we hadn’t cured MS with all the money that had been spent on research over the last 30 years. A difficult question that I had a go at answering. The meeting made me realise how few MSers, are aware of developments in MS research, and how few read this blog.We clearly need other means of communicating MS research. Any ideas? For example, should we take the most popular posts and edit them into a concise booklet for distribution via local MS Society branches? Should we launch an advertising or marketing campaign to get more MSers to read the blog? Or should we do nothing?