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
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Creative writing & Patient Support Groups
- 1. Support Meeting for Aspergillosis Patients LED BY GRAHAM ATHERTON SUPPORTED BY MARIE KIRWAN, GEORGINA POWELL & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS CREATIVE WRITING, CAROLINE HAWKRIDGE NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Fungal Research Trust
- 2. Asper – what? Caroline Hawkridge 2
- 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. 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. Book 1 (1989, 1993) Foreword: Dr. Stephen Kennedy 5
- 6. 6
- 7. Book 2 (new edition,1996) 7
- 8. Reviews ‘excellent book... since it is... about how women with endometriosis feel, the doctors 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 complex issues 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. 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. My role: patient info & publicity 1. Sharing info/stories among ourselves 2. Sharing with NHS staff & researchers 3. Giving stories to the press 4. Finding celebrity stories 5. Getting patients’ stories into dramas/soaps 10
- 11. 1. Sharing among ourselves “I thought that there was only me that suffered from this as no one had ever heard of it before. No one really knows what we go through.” “My family and friends have been very helpful but there is still that lonely feeling of ‘no one understands’. Now I know that lots of women do – only too well.” “The leaflet read like a diary of my thoughts and feelings.” 11
- 12. “They know how you feel, and will joke or offer advice from their own experience, or just rail along with you against the injustice of it all. But a note of caution – there is a wide spectrum of views and on a couple of occasions some rather off-the-wall advice has been given. When that happens, there is usually a cascade of other messages giving other points of view.” 12
- 13. Sharing stories Questions 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. 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. 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. 3. Giving stories to the press 16
- 17. Sharing stories with the press (1) Beware - You may be misquoted! 17
- 18. Sharing stories with the press (2) Beware: of headlines! (Daily Express, 1989) 18
- 19. 4. Finding celebrity stories 19
- 20. Hilary Mantel 20
- 21. 5. Getting into soaps 21
- 22. ‘Shula Hebden Lloyd’ played by Judy Bennett 22
- 23. 23
- 24. Sharing Stories Why? • 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. Book 3 (Penguin, 1997) Foreword: Dr. Gerry Conway 25
- 26. 26
- 27. Asper-what? 27
- 28. ‘The Lady with the Aspergillus’ by Julie Michael 28
- 29. ‘A Fly on the Ward’ by Michael K. Chapman 29
- 30. ‘Fungal Friends’ by Chris Harris Things have been wrong for quite some time Some days I struggle, some days I’m fine I’m breathless, tired and ask for tests To see what is happening with my chest They tell me I have some fungal spores But do not understand the cause So I ask around and make a fuss And discover a fungus called Aspergillus (1 of 5) 30
- 31. I use the clever search engine to find out the facts Which directs me to experts at a place called “NAC” I ask my doc if he will send me there Though still want him to share my care He agrees it would be nice to be helped To unravel the mystery that has developed So he sends me off to visit the team And asks me to tell him what knowledge I glean (2 of 5) 31
- 32. I meet the doc and tell my tale Of how my strength continues to fail Fit as a fiddle I used to be Now I have trouble making tea My chest is tight and I cough a lot The nurse then tells me to spit in a pot For some special test to see what it grows Funny named fungus that few of us knows (3 of 5) 32
- 33. What did I do in my fitter days? Cos now they are spent having frequent x-rays Blood tests are taken for more special tests Which leaves my arm in need of a rest But although I feel like I want to curse I would be lost without my specialist nurse The doc keeps an eye on my CT scan To check and see if my cavity has gone He sends me away with a cocktail of medicine And they ask me to fill their questionnaire in (4 of 5) 33
- 34. At the start of the month I can meet others like me To share our experiences over a nice cup of tea Speakers and staff tells us the latest news And our friends on the web are asked their views It’s good to know that fungus is widely debated And makes my family and me feel less isolated So while I know I have to keep coming back I’m so glad to be part of the place called “NAC” Chris Harris, May 2012 34
- 35. 35
- 36. ‘Foetal Scan’ by Denise Bundred Used with kind permission of Denise Bundred for this occasion They’re laughing at a private joke. Her blouse glides a 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. Your heart, 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 journey into light, your heart will falter and fail. Now for a few minutes more, they think you are perfect. 36
- 37. ‘Echo’ by Rebecca Goss First published by Shadowtrain, www.shadowtrain.com Used with kind permission of Rebecca Goss for this occasion. Rebecca Goss, www.flambardpress.co.uk/books/show.php?book=1171&author=rebecca.goss Not 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 doctor's probe plays slim keys of your ribs, draws the murmur of music that beats in you. Your baby heart dances on the screen, if only it was lucky to see this secret cave. A deformed valve 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 spheres coming around your head, wanting them to last, each pop a small, inexplicable loss. 37
- 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 much harder.” www.dyingmatters.org/page/final-chapters-winners-announced 38
- 39. 39
- 40. 40
- 41. Poems booklets and book marks 41
- 42. ‘The Worm Book’ by Andrew Rudd, Cheshire Poet Laureate 2006 http://freespace.virgin.net/sound.houses/ 42
- 43. ‘food-for-thought.234’ 43
- 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. 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. 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. 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. “Someone somewhere understands and cares” Thank you for listening. www.carolinehawkridge.co.uk 48
- 49. Group poem • To see poem, go to http//:www.aspergillus.org.uk/newpatients/gr ouppoem.html • To participate in further work, check our patients support groups at http//:www.aspergillus.org.uk/newpatients/ 49
- 50. Group poem • To see poem, go to http//:www.aspergillus.org.uk/newpatients/gr ouppoem.html • To participate in further work, check our patients support groups at http//:www.aspergillus.org.uk/newpatients/ 50
- 51. Group poem • To see poem, go to http//:www.aspergillus.org.uk/newpatients/gr ouppoem.html • To participate in further work, check our patients support groups at http//:www.aspergillus.org.uk/newpatients/ 51
- 52. Group poem • To see poem, go to http//:www.aspergillus.org.uk/newpatients/gr ouppoem.html • To participate in further work, check our patients support groups at http//:www.aspergillus.org.uk/newpatients/ 52
Editor's Notes
- Please join us to look at ways of sharing patients' stories and other creative projects. You don't to have to be creative to come along and see what might work for your support group! I will look at how my experience of setting up a patient group which became a national charity led me into writing health books and what we learnt from sharing patients’ stories with each other, staff and the media. I will touch on some practical questions about publishing before showing you projects elsewhere such as poems in the waiting room. I am delighted to say that Chris Harris has agreed to read her poem 'Fungal Friends' for us as well. My thanks to Graham Atherton and NAC for inviting me. I look forward to meeting you.
- Title a mouthfulForeword by Dr. Stephen Kennedy, i.e. collaborative approach/dialogue with healthcare staff & researchersCover – think about who gets endometriosis and make sure they are included and have a voice
- Aim in sharing this is to show that my determination to work with both patients and NHS staff to enable better understanding all round paid off when the book came out.
- NB. whether people will write their stories anonymously or not, whether being anonymous is enough to avoid being identified and if the person concerned is not anonymous is that the same as being contactable?
- 5 million listeners
- This book involved patients who had different reasons for their menopause, ranging from natural aging to premature ovarian failure, surgery and cancer treatment to genetic disorders which cause a lack of female hormones. So using extract from stories wasn’t an option because, unlike with the first book, one couldn’t assume that everyone reading would have the same disease. This is probbaly more similar to patients at NAC. Whole stories are used in this book, e.g. it opens with eight stories to set the scene and there are stories at the end of key chapters.
- Julie’s book – in the preview on Amazon she states that she and her husband have tried to write an honest and faithful account and that they have changed the names of patients and staff and don’t mention any hospitals where she was treated. Of course nowadays publishing one’s story is a lot easier thanks to the Internet and online publishing… this is ideal for groups of patients with rarer diseases as print publishers tend to only be interested in common diseases. Also, the Internet means that you can find your readers and they can find you. However, it does mean working without an editor or publicity team.
- A collection of humorous hospital stories and events as witnessed by a frequently incarcerated patient and told from a patient's point of view while secured and gagged in a hospital bed. Stories and tales from a lifetime of hospital admissions, showing that hospital life as a patient is not all doom and gloom. 2 positive reviews on Amazon from people welcoming a good laugh about being a patient.
- Launched 2009, had over 4000 entries from 44 countries. Open International 1st Prize - £5000 NHS category, Winning and commended poems are published in an annual anthology.
- Of course these are no necessarily real patients
- Rebecca’s daughter Ella had Ebstein’s Anomaly
- So far I’ve talked about poetry for fun and Chris has given us a lovely example which touches on the ups and downs of Aspergillosis in an upbeat way. However, sometimes one may want to write – or read - a poem which deals with some of the tough things which patients go through including tests and bad news. Of course, staff are very much part of this story too and I want to show you two poems which are nothing to do with Aspergillossis but instead deal with heart problems in children. The first is written by Rebecca Goss, whose daughter Ella was diagnosed with a fatal heart abnormality. The second poem is by Denise Bundred who is a retired paediatric cardiac surgeon and has often had to break this kind of news to parents. Rebecca and Denise have given me special permission to share these poems with you today. They didn’t know each other in hospital; instead they have met since as poets. Before I read you their poems, I’d just like to draw your attention to what Rebecca has said here about writing poems about her daughter’s short life. I am not suggesting that everyone should write poetry about such difficult subjects or that poetry is the best or only way of dealing with them, but I think that what Rebecca says is very important because for her it made it easier for her to celebrate and talk about Ella, not more difficult. Her poems have also helped raise public awareness of what what parents and children go through and have helped other parents.But of course writing about something so difficult is not the right thing for everyone.
- From Hyphen-21 project which makes poem available for hospitals and other NHS settings, having cleared copyright with the authors and paid them.