MS Life; MSers deserve better services. #MSBlog #MSResearch
"As in years past MS Life has re-opened my eyes to what a massive unmet need there is in relation to MS. It is quite clear from discussions I had MSers at MS Life that there is a real disconnect between what I think is the ideal management of MS and what is being provided on the ground. MS services and treatment is simply under resourced. For example, I spoke to three MSers who need FES (functional electrical nerve stimulation) but can't access it as their local commissioners are not prepared to fund it. We don't have a problem with this in London. Why has the postcode lottery resurfaced?"
"What about DMTs? A large number of MSers I spoke should be on DMTs, but have no access to the necessary services or have been incorrectly told that they were not eligible. So when I got up and gave a talk on DMTs and our strategy of treating-2-target it was pretty ivory tower stuff."
"It is clear that the community needs as much education as possible and we need a grass roots revolution so that MSers drive local service development. MSers need to start ask their MS nurse specialists and neurologists probing questions so that they can start a quite revolution."
"MS Life is a very positive experience; however, holding it biannually is not enough. We need a focused programme of activity in between this national meeting to make sure change happen."
"As promised the following is my presentation from MS Life.
Labels: DMT, Manchester, MS Life, NEDA, t2t