Monday morning, 9.34am. I’m with an interviewee between the consent forms and our list of questions and I’m just about to turn my mobile off and Dictaphone on… and my mobile is beeping. It’s Claire*. Claire has been able to get up and out this morning, and would I be free to meet her for a camomile tea somewhere across town any time before 10? I’m so pleased to get her text that I’m tempted to abandon the interview and just leg it to meet her. It’s such a rarity these days that Claire is well enough to get out for camomile or for anything much at all.
Public health generally aligns its priorities along utilitarian grounds: that is, we seek to deploy our resources to do as much as possible to improve the health of as many people as possible. Mortality rates are easier to quantify than morbidity rates and certainly, this leads to inevitable and perhaps perennial debates around how we define and measure health, challenges to health and health improvement. In the broadest terms, however, this means that we tend to prioritise the illnesses, lifestyle factors and ecological challenges which cause the most death and ill health to the greatest number of people: in terms of illnesses, this means coronary heart disease, cancer, diabetes, stroke and chronic lung disease; in terms of lifestyle factors, this means smoking, alcohol, obesity and physical activity; and in terms of ecological challenges, this means socioeconomic, political and environmental inequalities. This means that public health is very good, for example, at designing evidence-based cardiac rehab programmes to teach older people who have had a heart attack how to use the gym. This also means that public health is less able to address the needs of people with rarer illnesses and more unusual lifestyles. People like Claire, for instance.
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| Broken hug, by JuggleGlass |
Claire has been a friend for many years; she is a lawyer, a cellist, a socialist, a lover of horses, and is deeply committed to her Roman Catholic faith. Claire has also lived with severe anorexia nervosa since her teens and though she is now too ill to maintain her professional role as a solicitor in family law, she manages through mindboggling determination nevertheless to use her legal experience as a specialist advisor to a local community advocacy group, giving more to society than most healthy and employed people. Most women who develop anorexia in their teens will recover by their mid-20s and most women who don’t recover by their mid-30s will die before they reach Claire’s age. Therefore, Claire does not 'fit' into any of the accepted categories or pathways within healthcare systems, and health improvement doesn’t feature in any of the care she does receive. Claire is an anomaly to public health systems, a mystery to doctors and an awkwardness to social workers. As Claire’s health needs move from the psychiatric to the palliative and from the medical to the social, her difficulties in finding the care she needs continue; she cannot secure funding for the hospice respite which might help yet has been offered the short-term meals-on-wheels service which... well, the pathos of it all made her laugh, at least. And so, by both her friendship and the tenacity with which she holds to life, Claire demonstrates and encourages me never to lose sight of the tiniest hidden minorities who slip between the gaps of all public health statistics and services. Claire has taught me that, although we may always prioritise the many, we should never forget the few.
I’d imagine that I’m not the only one here to have, or to have had, a ‘Claire’ in their lives; someone who has inspired or challenged their way of thinking about public health. Would anyone like to blog about their ‘Claire’?
* Claire is not her real name. However, this post was written with her permission.
I’d imagine that I’m not the only one here to have, or to have had, a ‘Claire’ in their lives; someone who has inspired or challenged their way of thinking about public health. Would anyone like to blog about their ‘Claire’?
* Claire is not her real name. However, this post was written with her permission.
I don't have a Claire, but I do see datasets containing thousands of pregnancies affected by 'rare' but tragic events. Over the years, my work has taught me that once you magnify a 'rare' event over a population; you will find many people, many lives, and many families who have all been affected. It is largely left to charities to support them and provide what little funding is available for research.
ReplyDeletesadly though - more often than not, these cases end up falling through the net
ReplyDelete