Amongst the mass of official published data on assisted reproduction treatment (ART) outcomes, there isone noticeable omission: the cumulative pregnancy/birth rate (often inappropriately called ‘success rate’) ofwomen undergoing serial IVF/ICSI treatments. Thus, no recent pub- lications from the UK Human Fertilisationand Embryology Authority (HFEA, 2012), National Institute for Health and Care Excellence (NICE, 2013) orthe US Centers for Disease Control and Prevention (CDC, 2012) provide such data for IVF (although datafor donor insemination are presented; NICE, 2013, pp. 56–57). The corollary of this omission is of course the absence of data on the cumulative non-preg- nancy rate (so-called ‘failure rate’). So it is not possible to do more than guess at the number of women who find themselves in the position of Jane Everywoman,who writes in this issue about her experience of infertility treatment in the UK and who shares some of her learning conclusions from this experience. In one sense, Jane Everywoman’s experience is of course uniquely hers, but as she says herself she wishes to use her experience to suggest more generally
‘‘modified public health messages and new approaches to sex education and health screening that mayconsequently help to truly empower tomorrow’s women (and men) to fi- nally take full control over their reproductive lives.. .’’ We have invited six contributors to comment on Jane’s sugges- tions, each from adistinct perspective (Boivin et al., 2013; Dixon, 2013; Khalaf, 2013; Marteau, 2013; Norcross, 2013; Theodosiou, 2013). Here we offer some reflections of our own on the content of this ‘patient-led mini-symposium’. Although Jane’s experiences were entirely within the UK, and our respondents all reflect UKexperiences, we feel that there is much of international interest to be learned from these papers, and we lookforward to comments and inter- national comparisons, which you can submit, either through letters submittedfor publication or via our web pages on the online Forum at http://edwards.elsevierre- source.com/resource-center.
The pain felt by Jane pervades her text, although it is written dispassionately and constructively. It is our hope that the writing of this text was in part therapeutic and helped Jane to manage the transition from pain to accep- tance. It is our fear that on reading her account in this
journal, and the commentaries on and reactions to it, that the pain may be reawakened – for evidenceshows that rarely does the sense of loss that can come from trying with- out issue to have child go awaycompletely (Franklin, 1997).
So what to make of Jane’s situation? Two aspects shine through her account for us: first her isolation, whichseemed to stem in part from a sense of ‘shame’. This shame appears to have been experienced becauseher expectations from her ‘sex education’ had led her to feel she was not a ‘prop- er’ woman (i.e. one whogets pregnant at the first time of unprotected sex) – and so that her body had ‘failed’ her. Nowadays, weare so used to being told that if we put in en- ough effort we will be rewarded with the desired outcome thateven when things are beyond our control we can feel blamed for them. Whatever the underlying basis of this shame, that she felt unable to share her pain with anyone but health professionals led, unfortunately, to the second striking feature of her account: namely her unswerving faith in doctors. Whichbrings us to the crux of the issue. Did her doctors let her down and if so how and why, and what can bedone about it?
In her account (and it is her perception alone that we have to go on) they clearly did. Moreover, we canrecognize in their answers the ring of truth about what she reports that they said. Thus, ‘‘[endocrine disorders]corrected by a preg- nancy’’, ‘‘wait two years’’, ‘‘have patience’’ and ‘‘go home and relax’’ are all phrasesused for many couples experienc- ing fertility problems. Likewise the prevailing atmosphere of positivity thatshe describes is common in fertility clinics with their pictures of babies and emphasis upon the benefits ofIVF. While the staff of assisted conception units are understandably keen to help, and may rightly seek to encourage patients to remain optimistic in the face of the daunting challenges of treatment, these challenges are nonetheless considerable, and their outcomes highly uncer- tain. What is particularlyunfortunate in Jane’s case is that the advice she received seems to have been offered without due regard forher personal, individual situation, and on the basis of a missed diagnosis of early menopause. Jane’s faith indoctors and health professionals thus does seem to have been misplaced. Through ignorance or lack of awareness her doctors let her down, and through insensitivity and lack of empathy she was similarly misled by health workers. But perhaps she was most let down by the UK Government and the National Health Service (NHS) by their failure to provide comprehensive infertility services?
So are there general lessons to be learnt from Jane’s ac- count and do we share her prescription? It is withsome trep- idation that we question whether Jane’s suggestions that the better provision of information toyounger women/girls and men/boys is what is required, or will be effective (see also Dixon, 2013; Khalaf, 2013; Marteau, 2013)? Why do we say this? First, there is already a lot of information avail- able, a point made by both Khalaf (2013) and Boivin et al. (2013), as well as sources of advice there to be heard and support to be had, as pointed out by Norcross (2013). Sec- ond, there is abundant evidence that public health mes- sages that focus on information giving are not generally effective at changing behaviour(Marteau, 2013). For exam- ple, many health professionals and medical students are overweight or obese (Department of Health, 2009; Frank and Segura, 2009; Miller et al., 2008), persist in drinking alcohol to excess (Brooks et al., 2011; Brotons et al.,
2005; Rosta and Aasland, 2013) and even in smoking (Bat- eman, 2013; Saulle et al., 2013; Vanderhoek et al., 2013), whilst confronted on a daily basis with the evidence of dam- age. Indeed, as Theodosiou (2013)says ‘‘Recent data indi- cate that female doctors have children significantly later than women in the generalpopulation’’, yet they are well placed to know the likely consequences of deferral. Perhaps the finding that,despite this delay, they then do not suffer lower fertility is because they have preferential access to ART or tosources of reliable advice and information should problems emerge? As Marteau et al. (2012) have shown, itis not information processed rationally and consciously that governs much of our routine behaviour but non-conscious influences from our surroundings. That is why the enforced wearing of seat belts reducesmortality among car occu- pants and the banning of smoking in public places has re- duced respiratorydisease. As Jane herself says ‘‘No-one in my wide and international social and professional circle hadgiven birth before about 33. In media reports, numerous celebrities were also getting pregnant for the first