Thanks to Steve McCabe

We should all thank Steve McCabe, the Member of Parliament for Birmingham Selly Oak for raising the issue of NHS funding for fertility treatment in a Backbench Business Debate at Westminster supported by Tom Brake, the MP for Carshalton and Wallington, and Ed Vaizey, the MP for Didcot and Wantage. He’d been contacted by a number of constituents about the problems of the postcode lottery for fertility treatment, and called on the Health Secretary to investigate the cost disparities and the variations of IVF provision across England to find out why NICE guidance isn’t being followed universally.

The Health Minister Nicola Blackwood said that she would be writing to NHS England to ask that it communicates clearly with CCGs the expectation that NICE fertility guidelines should be followed by all.

It is a difficult time for the NHS which we know faces financial challenges, but stopping funding IVF would make little difference to the monetary woes – and indeed may actually end up costing far more if you factor in the long-term distress and depression caused by not being able to access treatment and the risk of patients having multiple embryo transfers overseas and returning with multiple pregnancies which can lead to health risks for both mother and baby.

The debate at Westminster was not well-attended, despite a big campaign by the charity Fertility Network and the campaign group Fertility Fairness. If you haven’t written to your MP about the problems of the postcode lottery yet, it is not too late. You can find details of how to find your MP and what to write on the Fertility Network website and if you are interested in watching the Westminster debate, you can find it here 

Finding clinic success rates

New research suggests that if you want to find out about outcomes from fertility treatment at a particular clinic, the best place to go is not the clinic’s own website. Researchers from Manchester University discovered that fertility clinics use a variety of different ways to present their data which makes it very difficult for anyone trying to compare one clinic with another.  They found that clinic websites often use league tables which they construct themselves using their own parameters to compare clinics in their area and that these are “invariably constructed so that the comparison was favourable to the reporting clinic.”

If you do want to look at outcomes, it is worth bearing in mind that most clinics have broadly similar success rates and that relatively small percentage differences can be pretty meaningless and may have more to do with the patients being treated at any given time than anything else. The HFEA publishes outcomes broken down by age and this is by far the best place to go for information if you want to look at treatment outcomes as the figures are collected and collated the same way for all clinics across the UK

You can find the full report from Manchester University which was published in the British Medical Journal here.

 

How old is too old to be a parent?

Do you think there should be a cut-off age after which people shouldn’t have children? Or is it fine at any age at which it is remotely feasible? And is it right that we ponder this subject so much when it comes to women having children later in life, and yet barely raise an eyebrow when Mick Jagger has a baby at the ripe old age of 73?

The subject has been back in the news again after Dame Julia Peyton-Jones, former director of the Serpentine Galleries, became a mother at 64. It isn’t clear how she had her daughter, although we can be sure she didn’t use her eggs and that she may well have paid for a surrogate to carry the baby too.  I know we all feel and act younger than our grandparents may have done at the same age, but she will be 80 by the time her daughter is 16 – and I can’t help wondering what it would be like for a 16 year old to have an 80 year old mother? Or what it would be like to be responsible for a teenager when you were 80?

Of course, the other problem with news stories like this is that they muddy the waters when it comes to NHS funding for fertility treatment, as many people seem to assume that it is the NHS which is footing the bill for older women to try to have babies. In fact, in most areas there is limited funding for women up to the age of 39, and often nothing at all beyond that. At most women of 40-42 will get one cycle, but if you are older, there is no likelihood of funded treatment.

Leap In

If you haven’t already seen this fabulous article from The Guardian by Alexandra Heminsley, it is worth a read.

You may have come across Alexandra Heminsley before as she wrote a previous book, Running Like a Girl,, about her experiences of running (which I found really inspiring as someone who is not remotely sporty but who has discovered an unexpected love of running – albeit very slowly…).

This article is about her new book Leap In, which deals with swimming and fertility treatment. We learn that she has been through two rounds of treatment, one of which resulted in a positive pregnancy test followed by a miscarriage. There is always a feeling of connection when you read about someone going through fertility treatment – we all understand something that others never really can – and I found her article incredibly moving. She talks about her changing feelings as she goes through the unsuccessful treatment and miscarriage, about how she feels betrayed by her body and rejects it. Describing all this through a focus on swimming somehow makes it an even more powerful read. When she talks about the “sort of breathlessness, almost a vertigo” that comes over her when she thinks about never having a child, she captures in just a few words the vast hollow emptiness and fear which are so familiar to many of us.

I’ll be posting a book review soon, but in the meantime, do read the article.

Don’t bother with that detox

images-4Most people think about their lifestyle when they are going through fertility tests and treatment – there is so much information out there now about how diet and lifestyle can impact on fertility that it’s not surprising that people often feel a need to take measures to improve what they eat. It’s never a bad thing to eat healthily, but it’s also true that there’s little scientific evidence about so-called fertility “superfoods” or that supplements are going to make a real difference to the outcome of treatment.

At the start of a new year, many of us feel we want to use the opportunity to improve ourselves in some way and the idea of a detox to start the year is often very popular. However, doctors have issued a warning after one woman who did this last year became seriously ill as a result of taking herbal remedies and drinking too much water. She collapsed and suffered a seizure before being admitted to hospital.

Please don’t worry that eating your five a day and cutting back on alcohol is going to make you unwell – this was a full-on detox diet which is a very different thing. In fact, the British Dietetic Association told the BBC that the whole idea of detoxing is nonsense – so whilst eating well and cooking fresh wholesome food is always going to be good for you, this makes it clear that there is not only no need to follow extreme diets, it can also be very dangerous. You can read more about this here and here 

Other people’s fertility treatment

laptop-computers-1446068-mThe Internet can be a fantastic resource when it comes to finding out more about fertility and treatment, and many people gain important insights by reading other people’s fertility stories online. This can, however, have a less helpful side. Although it may be useful to get practical tips, to read about what happens during a cycle and to feel that you are more prepared for what is about to happen, it is also vital to remember that everyone’s treatment is different. The tests carried out, the protocols used, the drugs prescribed can all vary depending on your own individual situation.

Recently I’ve been contacted by a few people asking about their treatment who have become worried that something might not be right because they’ve come across other people who have had different tests or treatments – or who have been prescribed different drugs at different doses. Just because your treatment is not exactly the same as someone else’s, that doesn’t mean it is wrong or less likely to work. If you have concerns, you should never worry about asking at your clinic, but remember that fertility treatment is always tailored to an individual to some degree and that clinics may not all do everything exactly the same way.

Fertility funding schemes

unknown-6I’ve come across quite a few mentions of fertility funding schemes recently where you pay a lump sum and are then offered your money back if you don’t get pregnant. Of course, the usual criticism of these schemes is that they are only available for younger women who are most likely to get pregnant. So I was interested to read of one recently which was apparently open to women of all ages with no age cut off. However, reading further down the article, it was apparent that actually although there wasn’t an official age cut off, women did have to pass a “screening” – and it is highly likely that by their mid forties, very few women would pass such a test.

These schemes can seem a great option – but it is important to understand their limitations as they are not open to everyone.

Can you ever stop plans to cut IVF

images-10If there are plans afoot in your local area to reduce the number of IVF cycles offered to those who need treatment, or even to cut treatment altogether, you may be left wondering whether there is anything you can do to make a difference. Although there are sometimes public consultations when funding is due to be cut or reduced, it can be tough to have the confidence to put forward your point of view – and sometimes it may start to seem as if there is very little point anyway as people wonder whether those who commission treatment are really listening.

This excellent piece from Bionews written by Richard Clothier tells how he fought back against planned cuts to fertility treatment in his local area. It’s a great read – and you may be surprised by the outcome.

Will my IVF work?

ivf_science-300x168You may have heard about the new predictor tool for IVF/ICSI which has been developed recently which is available through the University of Aberdeen website.

It uses data from the Human Fertilisation and Embryology Authority which keeps records of all cycles of treatment carried out in the UK, to aim to give a picture of your individual chances of having a baby after IVF/ICSI treatment,

The reporting of this has been analysed by NHS Choices which points out that there are some gaps in the data which the researchers themselves have acknowledged as it doesn’t account for the woman’s body mass index (BMI), whether she smokes and how much alcohol she drinks.

Despite these limitations, it is certainly a very useful tool and one which may help many couples get some kind of realistic idea of the chances of an IVF cycle working. Of course, the experience of each individual couple is always different and this doesn’t allow you to include any detailed medical data either, but it does give a broad picture view which may prove very helpful.

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.