Sunday, 4 January 2015

ClinicSpeak: reconnecting MSers and the medical profession

How do we prevent and treat social isolation in MSers? #ClinicSpeak #MSBlog #MSResearch

"Yesterday I did a post on the disconnect between what the medical profession require medical students to know about MS and what MSers would like doctors to know. It set me off thinking is there something that we can do to change this. I came across this article on using personal narratives or autobiographies to teach medical students about MS. This is good way to explain to them the impact that having MS can have on an individual living in modern society."

"It reminds me of someone in our neighbourhood who has MS. I have been living in this area for 13 years and when I first met him he as mobile and fully functional. He is not aware that I am an MS expert and is managed by a very good MS unit locally. I have gradually watched him go from being independently mobile to needing a walking stick, then two sticks, a walking frame and now a wheelchair. I have seen him fall many times and have helped him up on several occasions; I have bought him drinks and generally being very friendly to him; but not friendly enough. In the beginning I would frequently see him in one of our village eateries with friends and family, laughing and having a good time. The only person I see him with now is one of his carers who take him out for daily walks. His carers always seem to change; I wonder how this affects the quality of his care? Carer churn is a big problem in the UK; carers in London tend to be poorly paid and are often foreigners on short-term contracts from a local agency."

"This short narrative highlights one of the biggest blights in modern society; the social isolation that frequently awaits people with chronic disabling disease. How do we prevent it? I think history judges successful societies on how they look after their elderly and infirm; we are not doing very well in this domain. Sociologists lament at the demise of the extended family; the claim the nuclear family and now on-demand technology is breaking down our social capital further. The question I have is what can we do as a community to teach medical students about social isolation, social capital and how important the latter is as part of the holistic management of someone with MS."

"Next time I give my MS lecture to our medical students I plan to use a series of personal MSer narratives to illustrate the personal impact this disease has on people. I will then layer the necessary facts about the disease around the individual. If you are willing we could potentially use this blog to test run and fine tune these narratives to make sure they get the point across from the MSer and medical/neurology perspective?"

"Do you think the terms social isolation and social capital need to be added to my holistic management of MS tube map; i.e. are they important enough to warrant their own page in the future?"

"What is social capital? Social capital is the expected collective or economic benefits derived from the preferential treatment and cooperation between individuals and groups. Although different social sciences emphasize different aspects of social capital, they tend to share the core idea "that social networks have value".

Ian Robinson. Personal narratives, social careers and medical courses: Analysing life trajectories in autobiographies of people with multiple sclerosis. Social Science & Medicine Volume 30, Issue 11, 1990, Pages 1173–1186. 

Personal accounts of illness have always proved difficult to analyse. Using the distinction between personal narratives of illness, social careers of sickness and physical courses of disease this paper argues that such narratives provide an important and complementary means of understanding changes in health status. In developing a broad typology of such narratives it is argued that they can be considered as thematically organised life stories. Personal accounts of the lives of people with multiple sclerosis are subject to narrative analysis, and the value of such perspectives is stressed in giving access to the personal world of illness.


  1. A very good idea. Dx had a devastating emotional effect on me. The reason I chose not to declare the MS to all and sundry was (now I can see this clearly) because I knew I would be forever categorised as 'the woman who got MS'. I knew this would happen, because, shamefully, I have been guilty of this myself. MS is an enormous, 'dread-ful' label, particularly for older generations. It spells hopelessness and helplessness. The attitude of health professionals can make the difference between coping and not coping, I don't just mean being given DMDs. It's about putting all their efforts into helping the patient live as normally as possible. And they can't do this if they don't have the sense of what it actually feels like to be unable to put one foot in front of another. How many GPs are pro-active enough? They need to be on the case of (e.g.) referring us to physios, orthotists, pain clinics, counselling etc. I would have thought that a lot of this is possible without the specialist knowledge of the neuro teams - but how many bother? Happily, mine does. One example of how good she is: without too much persuasion she had me tested for vitD and said she'd be happy to prescribe any dose recommended by the consultant. Empathetic, realistic and with a can-do approach.

  2. I feel that's a great idea. I'm a professional writer, designer and editor, but having relapse at moment that's affecting fine motor movement of my right hand, I can use my tablet to write short comments using one finger but not anything more. Getting UL occupational therapy from next week but not hopeful that this will sort things out quickly or at all. Otherwise I'd be happy to write up how MS is affecting me in terms of social capital (not quite zero at moment but not particularly great) and social isolation (pretty bad presently)

  3. Don Giovannoni , what’s all this holistic nonsense? I thought that we were all about going in with our DMT guns blazing? Were you by any chance visited by three ghosts over the holidays, the latter of which showed you a glimpse of the future where expensive neo-DMTs failed to deliver on the promises you’d made?

    Man, it’s kind of out of order of you not to share with your neighbourhood Mser your true superhero identity. But then again, if the kid went from two functioning legs to none, I too would keep hush-hush about my inability to adequately understand his disease.

    Good luck trying to push your latest agenda. Our NHS hasn’t got the wherewithal nor will to care for chronically poorly people. The Tory scum in power have sabotaged our health services. They promised not to engage in top-to-bottom reforms, yet that’s exactly what they’ve done. Now they’re talking crap about withholding treatments from certain members of society because of their lack of future potential money-earning prospects (old folks, disabled folks, poor folks). What the Conservatives fail to recognise is that saving lives, in of itself, is a loss making exercise, but that doesn’t mean it‘s not our duty to try. Blimey, Britain’s got enough cash to afford an unelected Royal Family and to give the richest in the land a 5% tax cut, but we somehow cannot afford to fund the care of old, disabled and ill people. It makes me winch in disgust.

    I saw that the UK’s most famous MSer, Debbie Purdy, died last week. Yup, that’s right, someone who cost the state more money to look after than she paid into the system, this week helped sell lots of papers and kept freelance journalists employed. She also stoked a debate that has left this nation rocking with shame. How’s that for cultural value?

    1. While I agree with your sentiments about scum-bag sadistic Tory government and the parlous state of the NHS, but I don't believe no one in the NHS cares or is not trying to help. Regardless of how successful this has been to date, at least they keep trying. I agree that it's a shameful indictment on our society, but it seems to me you are conflating the issues. As for Debbie, please don't forget before MS she worked and paid into the system that supports the NHS, so surely she had the right to expect care, dignity and treatment. Perhaps you'd suggest people with MS should collectively kill themselves like a Jim Jones style cult as it costs too much money to find treatments?. Now that sounds like the worst of possible Tory thinking? Are you really Iain Duncan Smith by any chance?

    2. I think you've missed the fact that Dre's comments are dripping in irony. The comment on Purdy seems pretty tongue-in-cheek to me.

      You must be new to this blog. Dre is a professional cynic.

    3. Debbie Purdy was a sports journalist but had to resign due to ill health.

    4. Oh, Dre, you and your wit seem wasted here.

      One gets the feeling that in the run up to the election, the Dre Machine will be in overdrive.

      I look forward to your contributions, Dre.

    5. Debbie Purdy was a music journalist whose courage is leading to a much needed rethink in legislation. She will be much missed.

  4. Another upsetting post for the newly diagnosed - great little story to let us know what's in store for us. Surely the best way to reconnect with patients is to do what other specialisms do - provide effective treatments that get the patient well again. I don't need blogs, leaflets, infographics etc etc. These are just smoke and mirrors. A polypill which stops relapses, protects nerves and encourages repair would be a great start. Isn't it time neuros started acting as doctors i.e giving some of their patients a chance of getting better? Your recent posts are starving us of hope.

  5. Sadly too many people are unaware of MS, the effects of MS, how the sufferer feels and wants to be treated. Increase public awareness and clinical isolation will drop. Until more people understand MS and how it affects people then clinical isolation will continue. Not only people in the medical profession need to be educated but the general public.

    So ncrease awareness among trainee doctors is essential but the same must be done across the general public especially the GPs and employers.

    1. Completely agree! An example, even though I told my employers I had MS, when I had a relapse affecting my hand, they couldn't believe this and even asked if I was 'officially diagnosed' as if I'd been lying to them for 9 years. So I sent them a couple of my medical reports as well as a GP 'fit' note stating MS relapse. I was incredibly shocked that my colleagues who I'd worked with for so long didn't believe I could have MS because I wasn't in a wheelchair. Who the hell would lie about having MS!!

    2. Anon 8:08 That's because unless we wear a neon sign that tells people what symptoms we're suffering that day they have no idea. The times colleagues asked me what had happened to me was amazing, every time I had a relapse. Getting my boss to give me a lift to work when I lost my eyesight helped.

  6. Absolutely – social isolation is a real problem. As MS diminishes your capacities in a variety of ways participating in social activities becomes so much harder. I am single, have a limited circle of friends (through circumstance not choice or my own actions), no family who give a damn, and already my MS is restricting me, despite me still being fairly mobile, and cognitively quite OK. I am reluctant to “stray” too far from home – travelling any distance can be difficult and I I feel unsafe if I stay overnight in an unfamiliar place, so I avoid this unless I have no choice (e.g. work requirements).

    Objectively I know I should try to get “out and about” and need to try and meet new people, but the physical and emotional effort required is usually more than I can muster. I am reluctant to avail myself of the “support” and social groups run by the local MS society – I did go once but found it a little too confronting about what my future most likely holds to be in a room with others whose MS has them in motorised wheelchairs (yes – this can be seen by some as “prejudicial” against those people, but I’m talking about how this made me feel on the day). I also don’t want to just spend time with people where our only real common denominator is MS, as while this can create bonds from a common understanding of what life with MS can be like, MS is still the unavoidable elephant in the room, and mine reminds me quite enough on a daily basis that I have it and can’t get rid of it.

    In social situations it can be embarrassing to have to ask someone to open a bottle of juice on a day when your hands are not doing what you ask them to do. How do you explain that you can’t go somewhere because the gaps between public toilets en route from Point A to Point B are greater than your MS affected bladder can cope with? Or that you can’t travel more than X distance, because travel sickness caused by your MS balance problems means that the whole excursion ends up being a miserable experience (BYO vomit bags). My chances of meeting a new partner who will accept me with my MS and all that that means now and in the future are virtually non-existent – this is an aspect which seems to be completely overlooked, even amongst the social work fraternity – the absence of a “significant other” (for those who would like one) can mean even greater isolation and increased dependence on paid caregivers.

    The internet is a boon for building links with people outside your geographic location, but is not a real substitute for face to face contact with real people, and I don’t want a sense of “belonging” to come only from cyber contact with people I will never meet, especially as most of these people will also be MSers – which is generally why you ended up having contact with them in the first place.

    Despite any conscious efforts I may make, I fear that my world will shrink to the point where my only social contact will be with those who are caregivers of one sort or another. I saw this happen with my mother, who in her early 70s became very frail and disabled through a different illness. Nearly everyone one of her friends stopped visiting or contacting her – they just didn’t know how to cope with her lack of physical ability, even though her mind was still as sharp as a whole box of tacks. The last few years of her life were miserably isolated, and I dread ending up in the same situation, but I just don’t know how much power I have to stop this happening.

    Yes, Prof G – it can only be of benefit to include these aspects in teaching of trainee doctors. We MSers are people first, even if our hopes, future plans, and desires have been kicked in the teeth by MS. So bring on as many “test runs” on this blog as you want – I’ll certainly be happy to chip in with my ten quid’s worth (this post is way too long to only be worth two bob!). And let us not forget that MS is not the only chronic/disabling condition where social isolation etc is a significant problem – if you get it right you may be able to set a standard that others can aspire to.


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