As promised, following publication of our editorial about Jane Everywoman’s article in the July issue of this journal concerning her disappointing experience of fertility treat- ment (Johnson and Franklin, 2013), we sent our editorial to- gether with Jane’s article (Everywoman, 2013), plus the six commentaries on it (Boivin et al.,2013; Dixon, 2013; Khalaf,
2013; Marteau, 2013; Norcross, 2013; Theodosiou, 2013) to several of the UK’s leading sources of guidanceon fertility treatment, including the Human Fertilisation and Embryol- ogy Authority (HFEA), the British Medical Association (BMA), the Family Planning Association (FPA), the Royal Col- lege of Obstetricians andGynaecologists (RCOG), the Royal College of General Practitioners (RCGP) and the Chief Med- ical Officer (CMO) at the UK Department of Health. We asked for responses to the questions raised in our editorial, and/or in the article and the commentaries on it.
Disappointingly, and despite repeated requests, we only elicited written responses from two of these sixorganiza- tions (see Appendix A for details), thus confirming one of Jane’s core points about the lack of amore robust and open conversation between professionals and the public about the pitfalls andshortcomings of current fertility guidelines, advice and treatment. This deficit unfortunately appears to be asintransigent as it is regrettable. It was one of Jane’s, and our, hopes that her challenge to the professionalcom- munity of fertility specialists, including the leaders of regu- latory and advisory bodies, in both the public and private sectors, would be met by an equally sincere commitment to take these issues on board. Clearly Jane’s suspicion – that part of the problem for women such as herself is that even fertilityexperts find it difficult to engage publicly with the problems she describes – seems to be worryingly con- firmed by the anaemic response to our repeated requests. Given the increasing emphasis on open dialoguein the con- text of biomedicine, the failure by two thirds of the bodies we contacted to provide any commenton such an important set of issues appears not only unprofessional, but tone-deaf. The aspired goal to be ‘open’ seems to have become an ‘own goal’!
All the more credit is due to the two bodies whose repre- sentatives not only responded to the many urgentproblems
described in Jane’s article, but did so with great care and diligence. The BMA (English and Nathanson, 2013)and RCOG (Davies, 2013) have responded, and their comments are published as letters in this issue. TheBMA response is aspi- rational, as might be anticipated from a medical trade un- ion, and points sensitively to laudable goals. Veronica English and Vivienne Nathanson rightly begin their reply by acknowledging that Jane’s experiences are far from unu- sual, and that her distress is all too common.They admit that fertility advice can be a delicate area for GPs, who do not want to be overly intrusive,and who by definition are not specialists in reproductive health. English and Nathanson find some encouragement in the results of a re- cent study by Infertility Network UK (INUK, 2013) confirming that 78% ofthe respondents reported that their physicians provided sympathetic and helpful fertility advice. But this statistic also reveals that nearly a quarter of the partici- pants in the INUK study felt otherwise. There isclearly room for improvement, despite the fact that, as English and Nathanson note, adequate information isonly one part of the fertility question: the experience of regret, and even of anguished disappointment, over what might have been, is not always the result of inadequate advice. We appreciate this attempt to set out clearly for their members, and for the wider community, the expectations that both the BMA and the public have of those members.
The RCOG response, from Dr Melanie Davies, sets out its policies and records evidence of their currentimplementa- tion, and both are laudably progressive and practical. As the body representing almost all seniordoctors in obstetrics and gynaecology in the UK, as well as an international member- ship numbering severalthousands, the RCOG is a key player in the fields of fertility medicine and women’s reproductive health, in terms of both education and treatment. Dr Davies, like her BMA counterparts, clearly recognizes the familiar themes raised by Jane Everywoman’s story, and she helpfully summarises these under four headings: lack of awareness and information concerning biological ageing, inappropriate reassurance,delayed referral, and a misleading emphasis on success stories in the media. So what is to be done? Dr Davies prescribes a helpful, if somewhat predictable, agenda for progress, prioritizing bettereducation of health professionals, prompter access to specialized fertility services, and improved access to accurate information to assist women in reproductive deci- sion-making.
At the core of the RCOG response is the maxim that ac- cess to accurate knowledge improves both healthand healthcare, and this assumption is undoubtedly accurate. It is, however, also partial, and part of Jane’s message was that information by itself is not enough. After all, it is the difference between accurateinformation and meaning- ful dialogue that has motivated a sea change in the attitudes of many medical andscientific professionals toward a more two-way conversation with the general public about every- thing from health behaviours to nanotechnology (Burchell et al., 2009). As we noted in our original editorial, the pro- vision of many ways to access up-to-date and accurate information is vital, but attention to how peopleprocess this information, and to the social values and context in which the information is given, is equally necessary. Dr Da- vies’s suggestion, for example, that the RCOG might link their website to INUK, and othersimilar organizations, is a good one. Her concern about the extent to which Internet search engines are dominated by commercial IVF services, and her point that many women in Jane’s situation are strongly influenced by the media emphasis on celebrity pregnancies and IVF success stories (e.g. Twenge, 2013) is important.
We appreciate these points, as well as the many others made by both the RCOG and the BMA, and we doubt the other bodies who did not respond to the issues raised by Jane’s article would disagree with any of the observations and suggestions contained in these responses. What is clearly needed is a more joined-up dialogue, both within the professional communities responsible for fertility treat- ment and its regulation, and between these communities and the various public and professional constituencies they serve. Such a dialogue is equally clearly overdue. No one is in any doubt, it would appear, that Jane Everywoman has pointed to a well known, familiar, and complex problem in urgent need of wider professional/public engagement. As the helpful responses from the BMA and RCOG confirm, there iseverything to be gained from ensuring that this dia- logue includes as many participants as possible.