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.

Labels: , , ,