The patient support charity Fertility Network UK runs regular online groups which you can join via Skype. The next one will take place on Thursday 18th May at 6 pm and the month’s guest speaker is Amel Bouaraba from 24 Seven Fostering. Amel will discuss long-term fostering’. Anyone is welcome to join in – for more information or to find out how to join the call, you can email Hannah – firstname.lastname@example.org
If you’re immediately thinking “I don’t need a support group” or “I don’t like the sound of support groups”, “Aren’t they full of needy people?”, “Wouldn’t it be a bit embarrassing?” or “I think it would make me feel worse” – think again…
“I don’t need a support group” – Does anyone absolutely need a support group? Not really – but for those who go along, it can be a welcome additional source of companionship and support. You may not need a group, but that doesn’t mean you won’t find it helpful.
“I don’t like the sound of a support group” – I often think that calling fertility networking groups “support” groups is one of the most off-putting things about them. The idea of a support group conjures up visions of having to start by saying “My name is x and I am infertile”. It’s not like that at all. Think of a support group as a way to meet up with others who are going through similar experiences and an opportunity to share and learn from one another.
“Aren’t they full of needy people?” – No, they are full of people like you and me. We all need help sometimes, but the groups are full of people who are actively doing something about this and have decided to help themselves. They’re the stronger ones who are finding ways to get the support we all need during fertility tests and treatment.
“Wouldn’t it be a bit embarrassing?” – People are often anxious about going along to their first support group. Fertility problems are so personal and so intense and it can feel frightening to think that you are going to open up a bit in front of others – but remember you don’t have to. What you say in a group is up to you. Some people talk a lot, others a less depending on how they feel and what they need. A group is a source of warmth and friendship rather than of embarrassment and most people overcome any shyness very quickly.
“I think it will make me feel worse” – You might think that an evening focusing on fertility would be a rather gloomy and miserable event – and that it would be full of tears and sadness. In fact, in every support group I’ve ever run, there has been far more laughter than tears – if you don’t believe me, why not try one and see…
You have everything to gain and nothing to lose by trying a support group. Fertility Network run them right across the UK, and groups are listed on the Fertility Matters events page so you can find your nearest group. Go along and see what you think – you may find you are pleasantly surprised…
I know many people don’t like to think that they might need a “support group” but what is so invaluable about the groups is being able to meet up with other people who are going through similar things and to share experiences. It really can be such a huge relief just to know that there are other people out there finding it hard to be happy when a close friend announces a pregnancy, or who take long detours to avoid the local nursery at pick up and drop off times. Going along to a group is a sign of strength rather than suggesting that you need more support than other people and if you see it that way, it can be a useful – and free – way of helping yourself through treatment.
For more information about the Lancashire/Cumbria group, please email email@example.com and for the Hull group, you can email firstname.lastname@example.org.
You can find a list of all the other Fertility Network UK groups on their website here. There really is nothing to lose by going along once and seeing what you think – you may find it helps far more than you expected!
Just a quick reminder for anyone living in or near Manchester that the Fertility Show will be held there this weekend. It’s the first Fertility Show outside London and you can find full details and buy tickets here. You will find a great range of seminars covering a range of fertility-related topics, and a Q and A stage too where you can ask your own questions.
I’ll be speaking about how to choose a fertility clinic and will be at the Fertility Network UK stand for most of the day on Saturday – so do come and say hello!
It’s International Women’s Day and a good opportunity to celebrate some of the things that women do for one another in fertility. I was thinking of some of the women who have done and continue to do so much to change things in this field, and wanted to thank a few of them.
The first is Clare Lewis-Jones, the former Chief Executive of the charity Fertility Network UK. Clare led the charity as it grew in size and influence and was a presence at every fertility conference and event, reminding professionals of the need to think about the patient perspective. She championed the cause and helped to change the way people think about fertility, removing some of the stigma and encouraging us to talk, in part by being open about her own fertility story. Clare was awarded a much-deserved MBE for her work and was a real inspiration to me.
The second is Jessica Hepburn, who wrote a book about her own experiences of fertility problems and treatment and who went on to set up Fertility Fest. Jessica is an amazingly inspiring person who has swum the Channel and is now running the marathon to raise funds to help to support other people going through fertility problems. She has spoken widely and openly about how it feels to have unsuccessful treatment and has enabled many other people to talk about this.
My third is someone you may not know. She is called Diane and she runs the support line at Fertility Network UK. Diane is a nurse and has been answering calls and responding to emails from fertility patients for as long as I can remember. Every time I’ve suggested that anyone might benefit from giving her a call, they’ve been really touched by her kindness and helped so much by the support and advice she has offered. Diane has been at hand for hundreds of fertility patients on their journeys and is a real inspiration with her positivity and generosity of spirit.
These are just three women – there are so many more I can think of out there who are doing remarkable work to support and encourage, to inspire and inform. There are also all those women who support one another every day just by being there for each other, by showing their understanding and offering words of encouragement to their fellow fertility patients. The importance of that support should never be underestimated. Happy International Women’s Day to you all!
If you read this blog at all regularly, it won’t have escaped you that I am a huge fan of the brilliant Jessica Hepburn, Director of Fertility Fest and author of The Pursuit of Motherhood. You may have followed her Channel Swim to raise funds for Fertility Network UK, and now she’s doing it again with the London Marathon.
Jessica has written a fantastic blog post about this and if you want to read more about what she’s doing and why, you can find it here. There’s also a link to her JustGiving page where you can make a donation to support her through her 26 miles. For me, 10k feels like a marathon, and I think it’s a wonderful thing that she is doing – so support her if you possibly can and help to make it even more worthwhile.
If you are finding that your fertility problems feel as if they are dominating everything in your life, it may be really beneficial to see a counsellor. BICA, the British Infertility Counselling Association, have a list of their members on their website, and you can find the nearest person to you. It’s a really good idea to see a counsellor who specialises in dealing with fertility problems because they will genuinely understand what you are going through – and will be aware of the issues that arise. The BICA list includes counsellors who will offer phone or Skype sessions so if you can’t find anyone near where you live, that doesn’t have to be a problem.
Counselling may not be for everyone, but it is definitely worth a try as some people find it incredibly helpful. It is a matter of finding the right counsellor for you and so there is nothing wrong with ringing a couple to see who feels a good match for you.
In recent years, there has been a huge increase in the numbers of people offering fertility support services – often at premium prices from people who have no relevant qualifications and limited knowledge or expertise. What many people don’t realise is that the national charity, Fertility Network UK, provides an amazing range of support services which are all completely free.
The Fertility Network Support Line, run by a former fertility nurse, Diane, offers a unique fertility support service. Diane has a wealth of experience and has worked for the charity for more than 20 years, She can help not only with minor medical questions but provide you with the help you need based on her years of experience, and all calls to her are in complete confidence.
The Support Line has often been described as a ‘lifeline’ by those dealing with fertility issues. It is very normal to feel isolated, out of control, lonely or depressed when dealing with infertility, and Diane is there to help. No question is too trivial to ask and even if you just want to talk you can give her a call on 0121 323 5025 between 10am – 4pm on Monday, Wednesday and Friday, or email her at email@example.com.
Of course, that’s not all the charity has to offer. You can find a wide range of support groups right across the UK, an online community, a Facebook page and masses of information. Do check it out now at fertilitynetwork.org and save the money you were about to spend – or perhaps consider donating it!
Those in the Jewish community who are experiencing fertility problems will almost certainly have come across Chana, an amazing charity offering help and support to Jewish couples with fertility problems.
They run a helpline and counselling service, organise information events and provide medical information – and now they are organising their fifth fund-raising “Tea-cember” event, where people can raise funds for the charity by organising tea parties – there’s an article about the event here and there is a lot more details about how to get involved on the Chana website.
It’s a great way to get together with friends, and also raise money to support a fabulous charity which provides a very special service to help people who are experiencing problems getting pregnant. Late year apparently more than 2,500 people took part in more than a hundred events – so why not join them this year?
We 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.