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Creative writing & Patient Support Groups

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Medical writer and poet Caroline Hawkridge talks on her experiences of creating & running patient support groups, writing medical books and the uses & ideas of & for creative writing in support groups

Publicado en: Salud y medicina, Educación
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Creative writing & Patient Support Groups

  2. 2. Asper – what? Caroline Hawkridge 2
  3. 3. I am here to share ideas • How I helped set up a patient support group and became a writer• What we learnt from sharing patients’ stories• Some questions about writing and publishing• Other creative projects, e.g. poems in the waiting room 3
  4. 4. Endo-what? Surgery, aged 3 Surgery & drugs, aged 22 Working in NHS Helped start national charity BOOKS 1 & 2 Surgery & drugs, aged 36 BOOK 3 MA in Creative Writing Writer, poet & tutor 4
  5. 5. Book 1 (1989, 1993)Foreword: Dr. Stephen Kennedy 5
  6. 6. 6
  7. 7. Book 2 (new edition,1996) 7
  8. 8. Reviews‘excellent book... since it is... about how women with endometriosis feel, thedoctors who treat them might also learn a thing or two’ The Lancet‘of great value to doctors, as well as their patients…’ New Scientist‘a really first class job and achieved the difficult task of presenting complexissues in a balanced way in plain English which is easy and enjoyable to read...I can tell you that this GP at least has learn a lot’ A local GP‘I must admit I read it with great interest... a very fair and open discussion’ Consultant Gynaecologist 8
  9. 9. Support Group• Saw Good Housekeeping article• Joined a small group in London, 1981• Became Trustee of The Endometriosis Society, registered charity, 1982-89• Book stayed in print 18 years• Charity still going strong as Endometriosis UK 9
  10. 10. My role: patient info & publicity1. Sharing info/stories among ourselves2. Sharing with NHS staff & researchers3. Giving stories to the press4. Finding celebrity stories5. Getting patients’ stories into dramas/soaps 10
  11. 11. 1. Sharing among ourselves“I thought that there was only me that suffered from thisas no one had ever heard of it before. No one reallyknows what we go through.”“My family and friends have been very helpful but thereis still that lonely feeling of ‘no one understands’. Now Iknow that lots of women do – only too well.”“The leaflet read like a diary of my thoughts and feelings.” 11
  12. 12. “They know how you feel, and will joke or offeradvice from their own experience, or just railalong with you against the injustice of it all.But a note of caution – there is a wide spectrumof views and on a couple of occasions somerather off-the-wall advice has been given. Whenthat happens, there is usually a cascade of othermessages giving other points of view.” 12
  13. 13. Sharing storiesQuestions we ended up asking• Has our meeting or online group got understood/agreed levels of privacy and confidentiality?• Will stories made public beyond the group reflect the range of experience of the disease(s) and the treatments?• Will stories made public represent the range of patients (e.g. age, background)? (1 of 2) 13
  14. 14. Sharing stories• Will people mind if only extracts are used from their stories?• Are the individuals concerned and the group clear about how copyright works and the implications of publication in different settings?• How will we include stories from people who may be put off by fears about spelling, dyslexia or English not being their first language?• Will translations be made available? (2 of 2) 14
  15. 15. 2. Sharing stories with staff• Patients volunteered stories for newsletter, etc• After listening to many patients and staff, I asked 800 members to fill in a questionnaire• Presented at first World Congress on Endometriosis, France, 1987• Met Dr Stephen Kennedy and other key researchers• I used this material in the book 15
  16. 16. 3. Giving stories to the press 16
  17. 17. Sharing stories with the press (1) Beware - You may be misquoted! 17
  18. 18. Sharing stories with the press (2) Beware: of headlines! (Daily Express, 1989) 18
  19. 19. 4. Finding celebrity stories 19
  20. 20. Hilary Mantel 20
  21. 21. 5. Getting into soaps 21
  22. 22. ‘Shula Hebden Lloyd’ played by Judy Bennett 22
  23. 23. 23
  24. 24. Sharing StoriesWhy?• To help each other feel less alone• To learn from our experiences of ill-health• Reach new members• Raise awareness among NHS staff & researchers• Raise public awareness 24
  25. 25. Book 3 (Penguin, 1997) Foreword: Dr. Gerry Conway 25
  26. 26. 26
  27. 27. Asper-what? 27
  28. 28. ‘The Lady with the Aspergillus’ by Julie Michael 28
  29. 29. ‘A Fly on the Ward’ by Michael K. Chapman 29
  30. 30. ‘Fungal Friends’ by Chris HarrisThings have been wrong for quite some timeSome days I struggle, some days I’m fineI’m breathless, tired and ask for testsTo see what is happening with my chestThey tell me I have some fungal sporesBut do not understand the causeSo I ask around and make a fussAnd discover a fungus called Aspergillus(1 of 5) 30
  31. 31. I use the clever search engine to find out the factsWhich directs me to experts at a place called “NAC”I ask my doc if he will send me thereThough still want him to share my careHe agrees it would be nice to be helpedTo unravel the mystery that has developedSo he sends me off to visit the teamAnd asks me to tell him what knowledge I glean(2 of 5) 31
  32. 32. I meet the doc and tell my taleOf how my strength continues to failFit as a fiddle I used to beNow I have trouble making teaMy chest is tight and I cough a lotThe nurse then tells me to spit in a potFor some special test to see what it growsFunny named fungus that few of us knows(3 of 5) 32
  33. 33. What did I do in my fitter days?Cos now they are spent having frequent x-raysBlood tests are taken for more special testsWhich leaves my arm in need of a restBut although I feel like I want to curseI would be lost without my specialist nurseThe doc keeps an eye on my CT scanTo check and see if my cavity has goneHe sends me away with a cocktail of medicineAnd they ask me to fill their questionnaire in(4 of 5) 33
  34. 34. At the start of the month I can meet others like meTo share our experiences over a nice cup of teaSpeakers and staff tells us the latest newsAnd our friends on the web are asked their viewsIt’s good to know that fungus is widely debatedAnd makes my family and me feel less isolatedSo while I know I have to keep coming backI’m so glad to be part of the place called “NAC” Chris Harris, May 2012 34
  35. 35. 35
  36. 36. ‘Foetal Scan’ by Denise Bundred Used with kind permission of Denise Bundred for this occasionThey’re laughing at a private joke. Her blouse glidesa pattern of tiny flowers across her rounded belly.He should be at school, not sitting here in holey jeans,stretched brown T-shirt, love-bite purple on his neck.She reclines gracefully. Cold gel spreads under probe.You turn, show me your heart beating beneath my hand.I see the twisted valve, the missing chamber. Yourheart, the same size as the tiny fist gesturing me away.Leave me alone. Don’t tell my parents yet.When you breathe, after that perilous journeyinto light, your heart will falter and fail. Nowfor a few minutes more, they think you are perfect. 36
  37. 37. ‘Echo’ by Rebecca Goss First published by Shadowtrain, Used with kind permission of Rebecca Goss for this occasion. Rebecca Goss, the one that starts in your mouth, bounces back,rolls down your throat, vowels collecting like balls in a net.I mean an echocardiogram. The doctors probe playsslim keys of your ribs, draws the murmur of musicthat beats in you. Your baby heart dances on the screen,if only it was lucky to see this secret cave. A deformedvalve leaps between chambers like a March hare,marking the spring day you were born. Diverted on its travels,your blood is a mystery trail, leaving me lost.I distract you with bubbles. Keep clear spherescoming around your head, wanting them to last,each pop a small, inexplicable loss. 37
  38. 38. Rebecca Goss says…"My poems are my armour, my beekeeper suit,to enable me to talk about my daughter Ella.Without my poems, I would find it muchharder.” 38
  39. 39. 39
  40. 40. 40
  41. 41. Poems booklets and book marks 41
  42. 42. ‘The Worm Book’ by Andrew Rudd,Cheshire Poet Laureate 2006 42
  43. 43. ‘food-for-thought.234’ 43
  44. 44. Yeast Just add flour, sugar, salt, water. Punch the dough. Let it raise the seeded roof, sing carbon dioxide, before the oven’s fungal cull.Then slide curls of butter off your blade onto this line of hot bread, spoon jewels of jam. Caroline Hawkridge 1, 1, 2, 3, 5, 8, 13, 21 44
  45. 45. Try this recipe! HOSPITAL CAR PARK• What does it SEE?• What does it HEAR?• What does it FEEL?• What does it REMEMBER?• What does it DREAM OF? 45
  46. 46. Try this recipe! HOSPITAL CAR PARK• What does it SEE?• What does it HEAR?• What does it FEEL?• What does it REMEMBER?• What does it DREAM OF? 46
  47. 47. Try this recipe! HOSPITAL CAR PARK• What does it SEE?• What does it HEAR?• What does it FEEL?• What does it REMEMBER?• What does it DREAM OF? 47
  48. 48. “Someone somewhere understands and cares” Thank you for listening. 48
  49. 49. Group poem• To see poem, go to http// ouppoem.html• To participate in further work, check our patients support groups at http// 49
  50. 50. Group poem• To see poem, go to http// ouppoem.html• To participate in further work, check our patients support groups at http// 50
  51. 51. Group poem• To see poem, go to http// ouppoem.html• To participate in further work, check our patients support groups at http// 51
  52. 52. Group poem• To see poem, go to http// ouppoem.html• To participate in further work, check our patients support groups at http// 52