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Voice, agency and the medical arts
- 1. Voice, agency and the medical arts Vicky Grant December 2016
- 2. AShamed. Stitchcraft work by Kate Smyth at Bitchin’ Stitchin.
- 3. “Angry bowel syndrome” by Anne.
- 4. McCartney, M. (2012) The patient paradox: why sexed up medicine is bad for your health, London: Pinter & Martin. Image reproduced with the permission of Pinter & Martin publishers.
- 6. What the Royal College of Physicians think doctors should say to patients with IBS “I have examined you thoroughly and cannot find anything wrong …” “I am pleased to say that I do not think there is anything terrible going on here” “This is good news …” “You do not have a serious disorder such as cancer” Collier, J. D. ed. (2004) Medical masterclass: Gastroenterology and hepatology, London: Royal College of Physicians of London. Keshav, S. ed. (2008) Medical masterclass: Gastroenterology and hepatology, 2nd ed., London: Royal College of Physicians.
- 7. “Just IBS” by Emily
- 8. ruining my life! By Niamh
- 11. “When I have IBS I am not well. Regardless of what your GP checklist says” Becki
- 12. By Becki and Polina
- 15. Does the hierarchy of clinical evidence silence patients?
Editor's Notes
- I am working with a group of people who have a condition called PERCIVAL syndrome. You might know it better as irritable bowel syndrome. When I started my project this was the image I chose. I didn’t see any irony in this picture, it is typical of the imagery used for PERCIVAL syndrome. For me it represented anonymity and I thought that it was completely understandable and acceptable that patients with PERCIVAL or irritable bowel syndrome, would want to be anonymised. Because that’s how I felt – when I wrote about my experiences I would always use a pen name.
- And as I started to work with participants. they told me that they did indeed feel ahamed
- Here is Anne, an early participant in the project - she said: “it’s fine if you take my photograph But change my name and don’t include my head … “
- I was working as a medical librarian at the time and was teaching medical students and clinicians how to find medical research, and I was teaching them about this – the hierarchy of clinical evidence. This says that the best way of knowing comes from clinical trials –from medical science. Stories are only seen to be useful once they have been tested in trials (and vocalised by ‘experts’) So I thought I’d set up some workshops to teach patients, in the same way I was teaching clinicians. To use filters on search databases such as Medline, and to find this so called best evidence And I started to collect patient stories, because I thought that we could test what patients said, in these clinical trials and find a cure for IBS. So my model was – we’d turn stories into science and test the patients!
- And what emerged led me to question everything I thought I knew about medicine and medical knowledge Because I looked at Angela’s timeline And saw that Angela didn’t say she was ashamed She said she was shamed – there’s a difference That’s something that someone else is doing to her, I thought
- I started looking back at medical knowledge and I found these quotes, written by doctors These are quotes from the Medical Masterclass series and are the sorts of things that would be said to me and I would think, you’re really not getting this Living through childhood incontinence is not good news !
- I started to realise that it wasn’t just medical science that people with PERCIVAL syndrome needed but the opportunity to speak out about their experiences and to challenge those people who cause our shame
- So I started my project again - this time instead of assuming that participants wanted to be anonmymous I gave them a choice – some asked to think about it But, by the end of the workshops (we finished last Friday) only one participant asked to have her name changed
- We formed strong connections and talked and listened to each other We painted portraits of each other - these portraits were created together – every participant had a portrait – none of us are headless
- And we started to talk back Here is Becki writing back to her doctor When I have IBS I am not well. Regardless of what your GP checklist says
- And I asked participants what they wanted to change The group decided they wanted to change the name of our condition “so that we can talk about it easier & on our terms” We decided we would change the name We realised that some syndromes are named after the famous men that discovered them. That’s why we chose Percival But PERCIVAL is actually us – its made from the first letter of all our names
- Stories are very powerful Especially the ones we tell ourselves My project is working to create change with and for people with IBS Through the retelling of stories we are constructing a better future for ourselves Our better future will be based on a world where we are not shamed into silence