When I started out in health librarianship, I am sure there was a book called "At the end of all our work is a patient". I can't find it at the moment, but I can find an article by Shane Godbolt with that title (1). And as she was my first boss, that is an excellent thing to find, and perhaps that is what I was thinking of. That fact attracted me to this field of work, and still does.
Watching the excellent History Boys recently (excellent, and to some extent familiar, as I was at school then, though not in Sheffield and not looking to go to Oxbridge or do history), I was reminded of Alan Bennett's memoir Untold stories (included in a volume with the same name) (2). In it he writes about his mother's experience of mental health problems, and his discovery that his grandfather had also had them and had in fact committed suicide.
Perhaps there is material in that memoir that didn't make it into textbooks or research papers, perhaps, I am tempted to say, particularly at the time. And so this sort of literature adds something to the evidence that informs practice and research.
I was recently in hospital for a week following an accident. I remember what I was doing in the moments before but not what actually happened at the moment of the accident, as I had a head injury. I don't remember anything till the end of the following day, when some family members came to visit me. I remember them being there, but not what we talked about - apparently I repeated myself and was not able to sustain any sort of conversation. I remember my wife coming back to visit me the following day with a friend, and remember realising that this was not a dream, but again I don't remember what we talked about. On one visit, family members brought a photo album and apparently I couldn't remember the holiday (in one of my favourite places). I actually don't remember the photo album being brought, either. My younger son remembers me talking to him on the phone, but I don't.
My experience as a patient is surely valuable to practitioners, although I cannot know if it is typical (surely it is not as we are all individuals), so therefore the experience of other patients is valuable too. But so is the experience of families and loved ones. My family remember things about the visits that I don't, and of course my wife had the dreaded phone call from the paramedics to say what had happened, and would she get there as soon as she could. They have feelings about the whole thing that I do not, and could not have. I don't remember ever wondering how I ended up in hospital, or whether I would be ok, although I know my wife wondered that last thing, particularly after that phone call. Also, I came to realise that it could have been so very much worse.
So, do I as a health librarian buy (or buy access to) biography and autobiography? I read Untold stories while off work recovering. And fiction, like Ian McEwan's Enduring Love (3), which I read then too (elder son doing it at A level) - plenty of mental health related issues in there. Do you as a health practitioner or student read (auto)biography and fiction to inform your work or studies? What can we do with this sort of material as evidence? Does it end up in reviews? Patient experience of head injury as related in biography and fiction, that sort of thing.
Let me say that I had the most excellent care at the Northern General Hospital, Sheffield. And very good follow up care - for an accident that took minutes, I have had a week as an inpatient, and five outpatient visits (two for physiotherapy, two to the fracture clinic and one to the maxillofacial clinic), and one more outpatient visit (to the head injury rehabilitation clinic) to come. And two GP visits (I chose to have those, although one was for symptoms). What a lot of health service time for one short accident, and I am grateful it is there.
References (well, I am a librarian)
(1) Godbolt S. At the end of all our work is a patient. LA Record, 79(2): 86-9, quoted in Carmel M. (1986). Impact and image: improving the library's contribution. Health Libraries Review, 3: 94-10. Available from http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2532.1986.320094.x/pdf (Accessed 9th January 2015).
(2) Bennett, A. (2005). Untold stories, in Untold stories. London: Profile Books, p.1-125
(3) McEwan, I. (1998). Enduring love. London: Vintage.
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