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?
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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.
Creative writing & Patient Support Groups
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 MANCHESTERFungal Research Trust
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
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
Book 1 (1989, 1993)Foreword: Dr. Stephen Kennedy 5
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
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
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
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
“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
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
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
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
‘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
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
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
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
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
‘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
‘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.gossNot 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
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.” www.dyingmatters.org/page/final-chapters-winners-announced 38
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
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
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
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
“Someone somewhere understands and cares” Thank you for listening. www.carolinehawkridge.co.uk 48
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
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
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
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