Are assisted reproduction health professionals still letting down their patients?

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  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  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  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  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 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  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.