Thursday, 30 June 2016

NewsSpeak & MSLondon: London MS Specialist Network

What should we do with the London MS group? #NewsSpeak #MSLondon #MSBlog

"I am one of the founder members of the London MS Group (LMSG), a loose network of London-based MSologists. We started the group just over 10 years ago. The aim of the group was for neurology consultants with a specialist interest in MS to meet 3-4 times a year to discuss issues in relation to the management and treatment of MS. Invitations are sent out to a list of neurologists who see people with MS at 7 regional neuroscience centres in and around London (Imperial College, St Georges Hospital, Kings College, Queen Square, Barts-MS, Royal Free and Queen's Romford) and from the regional feeder hospitals. The turnout of for the LMSG meetings has been highly variable and has becoming increasingly poor. Why? I suspect there are many reasons for this, but increasing numbers of competing commitments and meeting fatigue are the main reasons."

"We had a meeting last night and only 6 neurologists turned up; on one occasion only 3 neurologists attended. We decided last night to rejuvenate the group, change its name, expand its remit and formalise it as a registered organisation. We all agreed that London MS centres are at the vanguard of MS service development, treatment, management and research in the UK and we need a voice and a platform to promote this. As this organisation will impact on the management of close to 25,000 people with MS living in and around London it would be useful if you could tell us what you would want from this organisation. Should we include non-neurologists and other stakeholders? What about people with MS? Should we use the organisation to publish guidelines and set standards? For example, should we include the London MS-AHSCT Collaborative Group under the umbrella?"

13 comments:

  1. How about some consensus on how to treat the disease? I had to change my consultant and move hospitals to be treated with Lemtrada. Why?

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  2. Neurology Specialist RegistrarThursday, June 30, 2016 9:24:00 am

    I loved attending the meetings. Many of my registrar colleagues who are about to finish would love them too. I stopped coming as I'm not yet a consultant and felt a bit of a fraud (even though I always felt welcome).

    Maybe widening the invitation criteria to the registrars who dream of being MSologists one day?

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    Replies
    1. Yes registrars are frontline and at the coalface, would love more registrars there learning more, from my patient point of view.

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  3. I'm a patient trying to get an appointment with a neurologist is impossible. Discharged from hospital with no diagnosis and been offered a follow up appointment six months later seems quite normal. It's now a fact of life that often when we leave clinics the clerical staff have already left. I've even had patient transport call me whilst I'm waiting asking if I'm still at the hospital. Don't blame the doctors, they always look exhausted to me.

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  4. I think you need to think very seriously about what you are trying to achieve with the group and what you realistically can achieve. For example, educating MS registrars would be so, so valuable. I came to London to see my neurologist a little while ago and saw his registrar instead. He was a very nice person but he freely admitted than I probably knew more about the disease than he did. I had made a two and a half hour journey to see him and the information flow was all in the wrong direction (from me to him). So that's one registrar that could do with coming to your group...
    Do you have a mission statement? Could we read it and give views?

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  5. A concerned person with MSThursday, June 30, 2016 11:47:00 am

    I think a London network would be very important in helping setting standards of care and getting neurologists across the country to take the management of MS seriously. In particular the early use of the more effective treatments.

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  6. I live in the US and I feel your site is one of the best ones out there. It would be wonderful if you could get neurologist from all over as well as scientists to share information. It could be as easy as setting up a drop box. I think if you all shared your information a cure and a solution would beifit us those suffering. As far as us the patients the truth is we just want to be healthy and spend our time living, not reading and talking about this %#&*^ disease.Thanks!

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  7. Such a shame last night was poorly attended.
    My thoughts:
    1. Remind people the meeting is happening. I didn't get a reminder for this meeting (I couldn't have made it, but that is not the point!). Publicising the meeting dates and topics beforehand would promote attendance I'm sure
    2. Expand the meetings to SpRs interested in MS - it is easy to feel like a fraud coming along (as above), but the meetings are an invaluable source of information
    3. Yes to developing guidelines - it would be great if these meetings could be used to drive forward and co-ordinate clinical care across the London area. There is so much knowledge and experience to learn from; pooling this would hopefully drive forward care

    ruth

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  8. This is copied from your post from your guest post from Amy Bowen yesterday. Believe in your power even when bureaucracy of managers and nihilism of other neurologists gets you down.

    " clinical microsystems: the concept is that the closely knit front line team, with a shared mission, is actually a really powerful unit of care that can make a massive change in patient experience, safety and outcomes. If they have scope to move beyond bureaucracy, they are able to define and pursue their common objectives, work collaboratively and make changes in their culture and their processes that they know will make a difference. They know this because they are living and breathing the delivery of the service every day and are right up close to the needs of the patients they serve."

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    Replies
    1. 6 neurologists out of how many, possibly 50 with trainees (wishful thinking)? The numbers speak for themselves.

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  9. It would be great to widen to the AHSCT folk who are actively treating people with MS, helps their understanding of the disease, whilst also helping the countless neurologists who seem to be in denial HSCT is even happening on the NHS at all. The more transparent and up-to-date information that can be circulated the better. Patients find it bizarre the differences in treatment options made available to them based on being 4 miles to the east or west.

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  10. lol so out of all the practitioner that didn't attend, 2 commented on this entry. one said she is feeling unwelcome and the other said there was no pre-meeting reminder invite.

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  11. A concerned Londoner with MSSunday, July 03, 2016 1:56:00 pm

    This shows you how elitist and disorganised London MSology is. I suggest you get your act together you are our advocates.

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