A patient perspective

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