Conversations on anonymity and openness at the Fertility Show

I’ve just seen Walter off to do his stint on the DC Network stand at the Fertility Show today.  I can be something of a control freak sometimes so he has strict instructions to keep the stand organised and tidy – something I struggled with yesterday under the pressure of so many people wanting to talk to us and buy books.  But that was really the least of our concerns.  As the day went on we became increasingly worried by the number of people coming to talk with us after they had done the rounds of the foreign clinics where they had had the hard sell of ‘of course we can get you a baby’,  ”why wait two years when we have masses of donors’…and no talk at all about the differences for the child between being conceived abroad and in the UK.  All that is down to us. And we found ourselves not just having to give the child’s perspective on donor information and contact but also to put the case for ‘telling’ in the first place.  It was an eye opener to find ourselves having to do this and a sharp reminder that it is easy when only moving in like-minded circles to forget that many people still do not understand – or have not before been exposed to  – the very positive moral and practical arguments for openness being best for the whole family.  I was shocked to hear from one man that he had been told by two British doctors that the best time to share information with ‘children’ was when they were in their twenties!  His wife actually thought that the best time might be when they were 15.  The doctors had apparently said that the reason you wouldn’t want to tell children when they are very young is because they might go and tell other people.  Well yes they might.  Of course the attitude that fuels this sort of talk is that infertility and donor conception are something to be ashamed of and you wouldn’t want others to know about because of what they would think of you.  Also because of possible discrimination against the child.  The couple I was talking to were Asian and I wonder now if the doctors they were talking to were Asian as well.  Issues of infertility and donor assisted conception seem to be much more complex for minority ethnic families, even if they are well integrated into UK society as this particular couple appeared to be.  He seemed to be very open to thinking about new ideas, but was anxious about older relatives and his wider community.  I had to break it to his wife that 15 was probably the very worst time to share donor conception information but she was adamant that they couldn’t do it when a child was young because of the issue of the child talking with others.  They left their names and email address with us and I’m hoping that they will join the Network so that they can have contact with member Asian families who have embraced openness in defiance of their community – a not inconsiderable thing to do.  Of course not all our conversations about openness took place with people with minority ethnic backgrounds, but some of my most memorable ones did.  I particularly recall a single woman currently living in the UK but from a minority ethnic community in another English speaking country.  She found herself between a rock and a hard place in wanting to return to live in that community but knowing that being a single mother by donor conception would be completely unacceptable there.  If she stayed in the UK she would be isolated from her family but if she returned as a single mum she would be ostracised.  I felt like weeping with her.

I did my usual talk on Donor Conception: Openness and the Family which was well attended and well received but for the first time this year I attended one of the other seminars.  In fact DCN had booked tickets for all the seminars that might remotely be about donation, particularly abroad, so that we could hear what others were saying.  My colleagues returned from their events feeling pretty dissatisfied.  It was clear that if a clinic was involved in a presentation it didn’t matter what the title was, the content was a sales pitch for that particular clinic.  The issue of anonymous donors abroad, if addressed at all, was brushed over lightly and the child didn’t get a mention.  I was lucky enough to hear Nic and Nigel Dawson talk under the title Successful Treatment Abroad’, not only about their experience of going to Barcelona to conceive their now five year old twin daughters by double donation, but more importantly from my perspective, be a wonderful example of a very open family.  They were very clear about the fact that there are now egg donors available in the UK and that if they were making their decision again today they would choose to stay here because then their daughters would have the choice open to them to have information about and/or contact with their donor.  It is their one regret that these choices will not be available for their girls.  However, as a lovely, warm open family I have no doubt that they will have little difficulty in managing any sad or angry feelings should they arise in the future and being there fully for their daughters.  They positively ooze the comfort and confidence (but without smugness) that DCN is always advocating as the key to successful donor conception families.

It was a long day and an exhausting one, but… I overcame my fear of the PayPal Gizmo DCN has invested in in order to be able to take card payments for books and membership fees.  I had some wonderful as well as some rather difficult conversations and very much enjoyed the company of my colleagues on the stand and seeing so many other good friends from the assisted conception world.  Most of all I was touched once again by the heartbreaking stories so many people had to tell and their continued optimism in the face of so much loss.  It was a privilege.

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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12 Responses to Conversations on anonymity and openness at the Fertility Show

  1. Nicola Dawson says:

    Thanks Olivia – fingers crossed you’re right! After our presentation Nigel had conversations with several couples who had been told they would face a wait of at least 2 years for donor treatment in the UK and were confused by what we said in our talk… He gave them some UK clinic names and also sent them off in the direction of the altrui stand. For some people overseas treatment may well be the right option, but they have to make that choice for the right reasons, not because they’ve been victims of a hard, factually incorrect sales pitch!

  2. oliviasview says:

    Of course I completely agree Nicola. Makes me very angry that some clinics tell people that waiting lists throughout the UK are around two years and then pack people off abroad. It’s just not honest!

  3. Liz says:

    This was a very interesting post. I wonder if cost was discussed at the event? I’ve heard there is a significant cost difference for egg donor and IVF between the UK and Europe, especially in regards to the Czech Republic. The economics of individual situations can limit choices in material ways. Sometimes that gets brushed under the table, and any significant cost difference may need to be addressed if encouraging using UK clinics is the goal.

    Cost constraints may mean that parents have to guess what will be worth more to their kids – 10-15K in a University fund or the ability to know their genetic lineage. What will the child, as a young adult, want more — a University fund or genetic knowledge? Or if the couple is already in debt, the parents may have to weigh what is more important for the family — to minimize debt or go to a clinic with a known donor. To be sure, infertility brings with it hard bargains and compromises.

    There’s one other thing that I’ve heard people talk about in regards to ED. The age of the donor is important for implantation rates. If donors in the UK are older then European donors this may be a particular concern, particularly if cost is a large factor.

    • oliviasview says:

      Thank you for your comment. You are well informed about the situation in Europe. It is true that clinics in the Czech Republic and Eastern European countries charge less than UK and Spanish ones do for egg donation procedures. Cost is often a factor in choices made, particularly for single women, and this is often very hard for those who understand that access to information may be important for children and that there are great differences for the child in being conceived abroad or in the UK. At least they are making their ‘choice’ with their eyes open. What worries DC Network more is that so many people just don’t understand the long-term implications of what they are doing. If a person or couple need IVF but are able to use their own gametes there is no need for them to think beyond becoming pregnant and having a baby. For those needing donor help, it is vital to think into the future BEFORE deciding on where to have treatment. We know this is difficult to do when all everyone wants is to have a baby in their arms, but it is really vital that they do. Sadly, very few staff (with the exception of counsellors) in any fertility clinic encourage potential parents to think into the future in this way.
      You are so right about hard bargains and compromises…but people need to understand exactly what they are getting into first before being in a position to even make those compromises.

      • Liz says:

        I agree that understanding the issues prior to making a decision ensures much better outcomes.

        Originally I was interested in citizenship, statelessness and donor practices. Then I became interested in other issues, such as the legalities concerning donor and surrogacy in the British commonwealth countries. I tend to do a good job at distracting myself from original research questions.

        I’ve read in a recent newspaper article that the numbers of UK women going to Europe for IVF are estimated to be about 20K a year. I wondered why the numbers were so high.

        If you happen to think of anything else of interest you saw at the fertility show, I am quite curious about any other comments about the dynamics between European clinics, patients, and UK clinics concerning this issue. Thank you again for the post and information.

  4. Tracey says:

    Speaking of factually incorrect – the number of overseas clinics saying it’s in the best interest of the children to use an anonymous donor or better to use an anonymous donor and have treatment where you can see a photo …. I’ve never seen that research???

    Actually the number of donors at UK clinics suggests we have better informed donors in addition to empowered patients – so pleased you were there Olivia and DCN 🙂 and have to agree about Nic & Nigel being a wonderful example!

    Tracey

  5. oliviasview says:

    Hi Liz
    I’d be interested to know where the figure of 20K women going abroad for IVF comes from. There really is no reliable source for the numbers of people seeking treatment overseas. I don’t have a problem with going abroad for straight IVF – seems to me this is straight consumer choice and may well be based on finances – but if using a donor there are other, I would claim much more important, factors to take into account. Going abroad just isn’t a level playing field for the child.
    I think people have complicated relationships with clinics overseas. I think many people feel freed from what they can view as restrictive legislation in the UK and the requirement to have counselling before they are treated. They often like foreign clinics because they are ‘state of the art’ (particularly in US and Spain) and the ‘customer service’ is better than in the UK. Doctors are much more approachable and have even been known to pick clients up at the airport! Even Nic and Nigel Dawson, whom I wrote about in the original blog, spent part of their presentation extolling the virtues of their wonderful clinic in the perfect “city and beach’ environment of Barcelona and encouraging people to ‘make a holiday of it’. This doesn’t sit comfortably with me but I’m not quite sure why. There is no reason why fertility treatment has to be gruelling and unpleasant to make it virtuous (or even successful) but there feels (to me) something very ‘market orientated’ about deliberately choosing a clinic in a holiday city. But maybe it is no different from a couple without fertility problems choosing to try to conceive a child whilst on holiday in a lovely place.

    • Tess says:

      I was told by one couple that they only way they could deal with the on-going horrors of the continuing medical treatment was to attempt to reconfigure the treatment as a holiday.

      My preliminary take on it is that it is one way to exert control over a situation in which some people have been morphed into the identity of patient. Some people remain in this position of “patient” and endure invasive medical procedures for a shocking long time. There’s a profound sense of loss of control with many couples. In these instances the couple can choose the location, the timing, and exert more control over procedures.

      I’ll look for the citation that I saw. It was just the other day I read the article, and I thought it came out of the news from the fertility show. Upon reflection the number seems much too large. Perhaps I misread a zero, and it was actually 2,500 per year.

      • Liz says:

        I did read the article too quickly. The number was 25,000 traveling abroad per year from various countries in the EU. Britain was only 5% of these numbers.

        “Each clinic from the six countries that took part were asked to complete a questionnaire for each patient attending the centre over a period of a month. They returned 1,230 forms.
        “This may not seem to be a very high number but it reflects only one month of events in a limited number of centres in six months,” Dr Shenfield said.
        Extrapolating the data over Europe, there were at least between 20,000 and 25,000 cycles of IVF treatment each year resulting from women travelling abroad, she said.
        Of these, the largest proportion – 32 per cent – were from Italy, followed by Germany (14 per cent), the Netherlands (12 per cent) and France (9 per cent). Britain was sixth, accounting for nearly 5 per cent of the patients who had travelled abroad for treatment.”

        http://www.independent.co.uk/life-style/health-and-families/health-news/women-over-40-fuel-boom-in-european-ivf-tourism-1724463.html

        Here’s a better description of the study. The articles were published in 2009. I do not know when the study took place:

        “Data was collected from 44 clinics across Europe and was collected by asking overseas patients their country of origin, age, reasons for travelling abroad for treatment, type of treatment they received and whether they were given information in their own language. Six European countries participated: Belgium, the Czech Republic, Denmark, Slovenia, Spain and Switzerland.

        Over the one month period, 1230 forms were completed, leading to estimates of 20,000 to 25,000 cross-border treatment cycles per year. In total, patients came from 49 different countries, with the largest numbers coming from Italy (31.8 per cent), Germany (14.4 per cent), the Netherlands (12.1 per cent) and France (8.7 per cent). Britain was sixth in the list, with 53 respondents, accounting for nearly five per cent of patients surveyed.”
        http://www.bionews.org.uk/page_45492.asp

  6. Nicola Dawson says:

    Hi Olivia
    I guess for us the reasons for choosing a nice holiday city were twofold:

    One was that if we were having to go through treatment and spend any periods of time somwehere then it might as well be somewhere nice, and somewhere that is easy to access with good accomodation and facilities, hence the “holiday” city side of things. For us, making it into a holiday to be enjoyed as far as possible rather than a medical trip to be endured, made it a much more bearable and relaxed experience. Also, with the cost of the treatment we were unlikely to be having another holiday in a while, so it made sense to try and combine the 2.

    But the other one, that has actually become lots more important to us since having the girls, is that as part of their understanding of their story and background we always wanted it to be somewhere that we would be happy taking them to visit. If they were conceived through treatment in the UK the location of the clinic would be largely irrelevant, but we are planning on taking the girls out to Barcelona in a couple of years and showing them the place that played such a big part in their story. Therefore it is important to us that it is a place that they can enjoy visiting and have positive associations with. The difference between taking them somewhere like Barcelona, with it’s parks, beaches, cafes and wonderful culture feels very different to how I might feel if we had made a different choice on location.

    I should stress that neither of these are a reason for going overseas though (although for some people the strong patient focus and feeling more than a number at the clinic are a motivation if they have had bad experiences at clinics elsewhere), but for us they just helped us to choose the right location once we’d made the decision to go overseas. Factors such as a holiday and how the clinic makes you feel are, in my mind, not something that comes into the equation when weighing up things like anonymity, waiting lists, costs, donor recruitment, etc…

  7. oliviasview says:

    Completely understood Nic. My comment to Liz was not meant as a criticism of you at all.

  8. Nicola Dawson says:

    Don’t worry, I didn’t take it that way 🙂 Just thought that it was worth putting it out there for anyone reading who wasn’t there at the weekend. As I say, it’s more with the benefit of hindsight that the importance of a “nice” place to go back to has grown as we see the impact it could have on the girls and with their acceptance of somewhere that had such a vital part to play in their existance…

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