Interview with Julia Leigh, author of AVALANCHE

7432976-1x1-700x700We spoke to Julia Leigh, author of Avalanche, at the start of our National Fertility Awareness Week and began by asking her what she thought of the idea.

It’s a wonderful idea which I hope will focus more attention on under-reported fertility issues. Also, it’s a special way to bring together those whose lives have been touched by infertility.

Do you think we are too reluctant to speak openly about fertility issues?
There’s no reluctance on the part of the multi-billion dollar worldwide fertility industry to promote this area of medicine. For example, this month [October] the American Society for Reproductive Medicine Scientific Congress & Expo took place in Salt Lake City, Utah. Exhibitors represented at the Expo included a fertility clinic network; a myriad of ‘bio tech’, ‘health technology’, ’genetic screening’ and ’diagnostic solutions’ laboratories; biopharmaceutical manufacturers; food and vitamin supplement manufacturers; pharmacists; surrogacy and donor organisations; laboratory equipment suppliers; attorneys; insurers; cryobankers and cryoshippers; marketing and brand strategists; a big data analyst; specialist software providers; and a joint venture partner who promised to turn growing medical practices into successful businesses. There’s also no reluctance on the part of the media to report successful ‘miracle’ births. There is a reluctance, however, to talk openly about the plain fact that most treatment cycles fail. To give some perspective, about 80% of treatment cycles fail. There’s also a disturbing reluctance to talk openly about the physical and emotional harms of treatment. It’s almost as if patients and doctors and others in the fertility world are so bewitched by the beautiful possibility of a ‘live birth’ that they turn a blind eye to the real harms.

Your book Avalanche about your own story is intensely personal – was it difficult to be so open in public?
At the time of writing I felt that I’d already lost so much I didn’t care about losing face – and that afforded me an enormous freedom. My heart goes out to anyone who is doing treatment now.

What made you want to write the book?
I wrote an Author’s Note for my publishers and I think it gives the best idea of why I wanted to write the book. Here it is:
A writer contemplating whether or not to begin a new work asks herself – Is this truly a story worth telling? Avalanche felt necessary. I’ve tried to tell an intensely personal story about a common experience that has largely remained unspoken. I wanted to offer a ‘shared aloneness’ to anyone who has desperately longed for a child. I hope I’ve brought into the light the way the IVF industry really works – and I could only do that in non-fiction. I wanted to transmit what it feels like to be on the so-called ‘emotional roller-coaster’, to deeply honour that complex experience in all its detail. Ways of loving, the mysteries of the body, the vagaries of science, the ethics of medicine – the material raised so many questions. I started writing it very soon after I made the decision to stop treatment because I wanted to capture my strong feelings before they were blanketed by time. I wanted to write something for all the women who are contemplating IVF, or currently undergoing it, or who have stopped or who are thinking about stopping (it’s so hard – the decision to ‘give up’). I wanted to speak to their family and friends. I wanted to speak to young women who in a misguided way might be relying on fertility treatment as a kind of back-up. And I wanted to speak to the policy-makers too. Since there is so much IVF failure I wanted to provide an alternative voice to the miracle stories we frequently see in the media. I wanted to counter the push – yes, the push – of the worldwide multi-billion dollar IVF industry.

Do you think people need more emotional support when they are going through treatment?
It’s difficult to discuss treatment with family and friends but in so doing a patient can lighten the emotional burden. There’s also the counselling option. In my case, the clinic offered free in-house counselling as part of the very expensive treatment package…but I would advise seeking an outside independent therapist. I say this because the decision to stop treatment, to give up, that incredibly painful decision, sits uncomfortably with the fact that clinics are making money from their patients. In my case, when I was 44, using my own eggs, and I’d already done 2 IUI’s and 6 egg collections plus subsequent transfers, my doctor suggested I try once more. It was my sister who had the courage to tell me firmly that I needed to stop. I feel an independent therapist would be well-placed to basically warn patients of the emotional pitfalls that can lay ahead. Is there such a thing as pro-active counselling? Identifying the traps for new players and advising how best to respond to them…identifying the tricks of the mind that don’t serve patients well…I think a therapist who was familiar with the IVF world, who had experience in this area, would be best.

And do you think there is adequate support when treatment doesn¹t work?
There was little to no follow-up from my clinic after I decided to stop treatment. I can’t recall exactly – there may have been one phone call. I saw an independent therapist.

Here in the UK, the individual success rates for individual clinics are collated and published by the fertility regulator, the HFEA, and are broken down by age too. Do you think access to information like this would have made a difference to you?
Yes I would have loved to see results for my individual clinic. That would have helped. But I also want to note that I did see the graphs on my clinic website which used our ANZARD data and clearly showed how fertility dropped away with age. (The ANZARD report collates data from all clinics in Australia and New Zealand but doesn’t identify individual clinics). And when I was 40 my first doctor at the clinic said I had about a 20% chance of ‘taking home a baby’. BUT as it happened, at age 43, when I was transferring a thawed 5 day blastocyst, using my own egg, I asked my new doctor what my odds were of being pregnant (please note, pregnancy not live birth). Even though I’d seen the fertility graphs I figured my chances would somehow be better than the average because unlike some patients my age I was both responding to drugs and producing blastocyts: “Pollyanna Juggernaut could do amazing things with the numbers.” In reply to my question about odds, the doctor said “A Day 5 blastocyst has about a 40% chance.” I took that to mean I had a 40% chance of being pregnant – but later I discovered the 40% figure was for women of all ages. I hope that illustrates how statistics can be malleable…

What changes do you think we could make to try to ensure that fewer women suffer the kind of anguish you went through?
That’s a good question and I don’t have any easy answers. I wonder if there couldn’t be a buffer between women – especially older women – who are prepared to do almost anything to have a child and the clinics who are prepared to put patients through almost anything even though there is no guarantee of a successful outcome, far from it. In Australia a well-respected doctor put a patient through 37 cycles. 37! He had no qualms about that since she did end up with a child. But what if she hadn’t? I’m not sure what happens in the UK but in my case it was my General Practitioner who referred me to the fertility clinic. My GP never asked how my treatment was going. I wonder if GP’s could step in as a buffer, walk patients through the facts and figures, help decide whether or not to do an experimental protocol advocated by the clinic that will cause physical harm but has limited evidence of benefit, to basically serve as a ‘reality check’. There’s a great deal clinics can do to change…For example, during an embryo transfer my doctor pointed to an image of the blastocyst on the ultrasound screen and said ‘That’s the baby’. At the time, I thought it generous and I was touched that the doctor might be the only person in the world who would ever refer to ‘my baby’ but in retrospect the comment – that’s the baby – only heightened my intense desire for a child.

Spermbanter

If you haven’t seen them already, do catch the brilliant videos with Professor Allan Pacey titled #spermbanter made by Dr Fertility for National Fertility Awareness Week which give the facts about sperm production and what makes a difference to your sperm count. Professor Pacey is one of the country’s leading experts on male fertility and these videos are incredibly informative and give the facts – and also address many of the common myths about factors which can influence sperm and fertility too.

Do catch them – watch them all – it won’t take long. You may find it reassuring and you will certainly find it informative.

You can catch the videos on How sperm are made

What factors affect sperm quality

 

on how diet affects fertility

does smoking affect your sperm quality

and why a man might not have any sperm

There are a number of others – you will find them all once you start watching!

National Fertility Awareness Week starts on Monday

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National Fertility Awareness Week starts on Monday 31st October and runs through to Sunday 6th November 2016. It is your week and you can help Fertility Network UK to raise awareness during the week.

Fertility issues are all too often misrepresented and misunderstood. It’s common for media attention to be focused on stereotypes of fertility struggles: the 30 – or 40 – something career woman who’s left it too late; the against-the-odds IVF success story or the woman who’s apparently easily come to terms with childlessness – but this is far from the real picture.

During National Fertility Awareness Week, Fertility Network UK aims to highlight the unseen, intimate and day-to-day reality of fertility issues, to overturn commonly-held misconceptions about fertility and to shine a spotlight on untold fertility stories.

In the UK, 1 in 6 couples experience the pain fertility issues bring. Even if you don’t have direct experience, you probably know someone who does – a family member, friend or work colleague. We hope people will join in, raise funds and help change perceptions about fertility issues.’

The five focus areas for this year’s media campaign are:

  • The myth of the middle-aged would-be-mum: fertility issues in your 20s and early 30s
  • The truth about fertility treatment: we know that 75% of individual IVF cycles are unsuccessful and that most people who become parents after treatment go through more than one cycle. What is it like to face multiple rounds of treatment?
  • The hidden half: men are just as likely as women to suffer from fertility issues
  • Facing up to childlessness: coming to terms with childlessness is too often portrayed as a straightforward process when the reality is far from that
  • Life after successful IVF: the taboo of secondary infertility and can life as the parent of an IVF miracle ever be normal?

You can find out more about how to get involved at the National Fertility Awareness Week website and on Twitter with the hashtags #NFAWUK #HiddenFaces #fertilityin5

For anyone who is trying to conceive

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If you are experiencing fertility problems and feeling lonely and isolated, I am sure you will find this video will resonate with you. The video is part of Fertility Network UK’s #HiddenFaces campaign for National Fertility Awareness Week and has been generating a lot of positive responses from people who know what it’s like to live with fertility problems. It was made by Jessica Hepburn, who is a trustee of the charity and an author – she writes a blog called after her book – The Pursuit of Motherhood – which is also worth looking at.

Jessica is an amazing woman who has swum the Channel to raise funds for Fertility Network UK and she is the brains behind the wonderful Fertility Fest which some of you may have been fortunate enough to attend in London or Birmingham earlier this year.

Thank you Jessica on behalf of everyone who knows what it is like not to be able to conceive, thank you for talking about something so personal and difficult, thank you for your courage and warmth and for all you do to raise awareness of something so many people find too difficult to talk about x

Could you join Fertility Network’s video campaign?

Cmhc-LqWYAAWk88As part of Fertility Network UK’s #HiddenFaces campaign for National Fertility Awareness Week they are hoping to make video diaries of personal fertility stories.

If you are happy to tell your story to camera (it should take 30min max) and can travel to Covent Garden, London for filming during the coming weeks, you can email Catherine Hill at media@fertilitynetworkuk.org or call 07469-660845 to find out more about taking part. Fertility Network UK needs your help to make these films!

Media request to help fertility awareness

GeneticcounselingDo you live in Dorset, Hampshire, West Sussex, Berkshire or Oxfordshire? Would you be happy to talk on camera about your personal experience of fertility problems? You could help raise awareness by being part of a series of short films to coincide with National Fertility Awareness Week.

The producers would like to hear from: couples who struggled to conceive naturally; couples who struggled to conceive via IVF and couples who have adopted or fostered. Filming will take place mid/late September. Please email Russell Sheath at russell.sheath@me.com and cc Catherine Hill at media@fertilitynetworkuk.org

IVF provision in the UK

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It’s National Fertility Awareness Week and the campaign group Fertility Fairness have released a new audit of fertility services to show what is being funded by the NHS in different areas. You can find out more details in this article I wrote for the Guardian online Comment section.

It’s good that there is so much interest in fertility funding – but let’s hope it’s the right sort. I  broke my rule of never reading the comments under the piece this evening, and I remembered why I set the rule in the first place. It amazes me how totally lacking in compassion some people – most often those who had their own children without any difficulty – can be..

Are you doing something for National Fertility Awareness Week?

200It starts next week – and there’s still plenty of time to get involved. You can opt for the 5k challenge like me – Infertility Network UK have teamed up with Nuffield Health and they have invited anyone wanting to complete their challenge indoors to come along and use one of their gyms. Free one day membership is available to everyone wanting to participate, just go to their website and sign up for a free day pass – http://www.nuffieldhealth.com/nfaw.

What about joining the Cake Bake – you could get together with friends, family or colleagues and bake and share a cake or two together? Or perhaps you could help raise awareness through social media?

Why not have a look at the National Fertility Awareness Week website, and see all the ways that you can join in.

 

The date is set – National Fertility Awareness Week

200The dates have been set for this year’s National Fertility Awareness Week – which is the first week in November from the 2nd to the 8th. As usual, the week will end with the Fertility Show which will take place at London’s Olympia.

National Fertility Awareness Week is organised by fertility support charity, Infertility Network UK, and Chief Executive Susan Seenan said: ‘In the UK, one in six couples struggle to become parents – that’s over 3.5 million people experiencing the heartbreak and anguish that fertility problems wreak. Even if you are not directly affected, many people will know someone – a friend, family member or work colleague – who needs extra help to have a baby. Now is the time to show your support for the #1in6.’

 

You can find out more about the week and how you can get involved by clicking here 

Dates announced for Fertility Awareness Week

The dates have now been announced for this year’s National Fertility Awareness Week in the UK which is due to run from November 2 to November 8. The week is organised by the charity Infertility Network UK and culminates in the annual Fertility Show held at Olympia. You can read more on the Infertility Network UK website