Monday, 2 October 2017

#ClinicSpeak: Does PPI increase social capital?

The impact of reducing social isolation cannot be under-estimated. It may prevent the need for assisted suicide. #ClinicSpeak

My wife was travelling back from a conference in Bath yesterday and she listened to the following programme about a man with PPMS who had made a decision to end his life at a clinic in Switzerland, I assume Dignitas. However, a fellow MSer decided to befriend him and try and help. As a result of her intervention, Colin went from being socially isolated to having a friend and being welcomed into her family. In short, he had someone who cared about him. As a result of their friendship, he has postponed suicide as an option to dealing with his life with primary progressive MS. 


This is social capital at work. If you increase your social capital, i.e your network of friends and family, then your life becomes worthwhile. 

It has recently come to my attention that our patients with MS who engage with our patient and public involvement initiatives (PPI) seem to be doing much better than those who don't. Engagers are better informed, have improved quality of life and seem to have a renewed purpose. They get more out of meeting other people with MS and sharing experiences than they do out of the actual PPI activity. This could all be an association, i.e. the kind of pwMS who engage with PPI projects are self-selecting and will do better than those who don't engage. 

I hypothesise that it is causal, i.e. PPI is acting as a catalyst and is increasing their social capital and hence their outcomes. I am not sure if anyone has studied or documented this observation, but it would be great to have the evidence at hand. 


BBC RADIO 4. Hardeep's Sunday Lunch, Series 6. Sunday 1st October 2017 - 13:30.

In the first programme of this series, Hardeep is in his native Scotland to cook lunch for Inverness based friends Colin Campbell and Rona Tynan. Colin has lived with primary progressive multiple sclerosis since his 30s and at the age of 56 made the decision to end his life at a Swiss Clinic rather than face an unbearable, lonely decline. Hearing his plight, fellow MS patient Rona Tynan felt compelled to get in touch with him. The former London Met police officer has lived with MS for 12 years and she felt distressed that Colin wanted to end his life, especially when he was more able than her. In June this year, when Hardeep turned up at Rona's door to make the pair of them a haggis curry, Colin still had an appointment for the Swiss Clinic in his diary.

Producer: Helen Lee.

10 comments:

  1. How sad! Not a good post to start the week off.

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  2. I wish you'd stop poking your noses in other people's decisions. If I get to a point where I am bed bound, incontinent etc. death for me is a good way out. It's my choice based on my view of what life should be. There's also an issue called dignity. Having a new friend pop round for an hour a week won't change my choice. Rather than dream up phrases like Social Capital and PPI (you might want to chance the letters for this one) come up with a treatment to stop patients from getting worse - then you will see Dignitas go out of business. i wonder how brave you would actually be at EDSS 8.5 or 9. Would a friend with a piece of cake really improve your life?

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    1. Mr/Mrs angry why are you venting your frustrations at Prof G. This is not his patient. All he is doing is relaying a story about two people with PPMS who live in Scotland.

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    2. Because Prof G posts this fluffy rubbish and the underlying message is that a friend with a curry should override the devastating effects of progressive MS. I find these sorts of posts patronising. There was a post last week about an MSer with locked-in syndrome, but Prof G noted that the patient could still communicate with a twitchy finger (that's death in any other name). I'm more that happy to vent my anger as (i) the doctors (neuros) failed me and (ii) the researchers have failed me (and the patient highlighted above).

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    3. No problem I have a thick skin.

      Social capital is a very old term with the concept dating back almost a 100 years. PPI is probably quite new and only entered the NHS lexicon about 10 years ago. These are not neologisms (new words) or my terms they were created outside the MS space .

      I would just like to reiterate that the two people who are interviewed on BBC live in Scotland and have nothing to do with Barts-MS.

      As for stopping people getting worse that is our day job; we have a large research programme in more advanced MS. But unfortunately, science happens slowly and the adoption of science even slower.

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  3. Haggis Curry - yuk. Enough to make anyone suicidal. Perhaps Mouse Doctor could inject it into his little beasties to see if their EAE symptoms improve. I do agree with anon above. If the researchers could stabilise MS i.e.patient stops getting worse, then patients would have hope for the future and the suicide rate would fall. It's shocking and shameful that in 2017 those with worsening MS have no treatments. I do wonder what researchers have been up to for the last 50 years. The priority of e ery MSer is not to become disabled / not to become more disabled, but the MS research community just don't get it. Where are the neuro-protection therapies? They can't be available as we wouldn't be seeing stories like the one above. I repeat - it's 2017!

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  4. Prof G, the obvious rejoinder to your hypothesis is that - it could be reverse causal

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    1. Yes, that is why I state:

      "This could all be an association, i.e. the kind of pwMS who engage with PPI projects are self-selecting and will do better than those who don't engage."

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  5. Prof G are you on a downer?

    https://medium.com/@gavin_24211/revival-e9df093b6e48

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    1. No just trying to use fiction to describe the impact of MS on people and how we manage MS in the modern era.

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