Monday, 28 April 2014

Initial reflections from the MS Life 2014 meeting in Manchester

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.



CoI: multiple

2 comments:

  1. I think the situation on the ground is even worse - the people at MS life are the "highly engaged" tip of the iceberg. They might not be on a DMT but are accessing MS experts at the conference.

    Anecdotally I know two people who have been diagnosed in the last three years and are under the care of generalist neurologists rather than MS specialists. They have been told they don't need DMTs and, while I point them towards websites like this, the MS Society and MS Trust , they are sticking their heads in the sand and don't feel confident about being assertive and informed. It's a real shame as both have young families and I fear that by the time they get onto a DMT a lot of brain damage will have occurred.

    Sadly, I think there are lots of people like that out there. How do we change that ? What needs to happen with regulators (NICE in the UK), compulsory continuing professional development for all neurologists and MS nurses. How can the relevant charities and patient groups get the message out there ?

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  2. I attended MS Life 2014. It was a fantastic experience for me but at the same time it revealed so many things that need to be done. People need to be made more aware of both their rights and what is available. You talk about DMT, the skills of the neurologist. The show did not put enough emphasis on the day to day things that can make life easier. No stands for rollators, only 1 stand for mobility scooters, no reference to the NAIDEX disability show.

    As well as education, education and education there needs to be some joined up thinking

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