Have you had fertility treatment in the last 5 years?

If you have had fertility treatment in the UK in the last five years, would you be willing to help identify key areas for improvement to ensure everyone receives high-quality care in the future?

The Human Fertilisation and Embryology Authority (HFEA) which regulates fertility clinics in the UK has launched a national fertility patient survey and your views are vital to help the Authority understand experiences of treatment. The survey is being run by YouGov, and the more people that take part, the clearer the views and the greater the impact.

This is an excellent opportunity to help other people going through fertility treatment by giving the information and opinions the HFEA needs to help ensure these are taken into consideration in the future. The survey takes about 15 minutes to complete, and the link is here.

Scream for IVF!

The patient charity Fertility Network UK has launched a new campaign today called Scream 4 IVF which aims to raise awareness of the unfairness of the postcode lottery for fertility treatment. Currently a majority of those who need fertility treatment end up paying for themselves, and local commissioners who decide how to spend NHS funds are often ignoring the guidance from NICE on this and rationing fertility treatment.

The new campaign asks you to upload yourself screaming on social media with the #Scream4IVF and link to the petition bit.ly/Scream4IVF to call for a debate in parliament on fertility funding. Of course, you also need to sign it yourself!

Please, do support this important work – if you don’t want to scream, just sign – whatever you can do will help. You can find the campaign website at https://www.scream4ivf.org

What do you think about egg freezing?

There has been quite a debate about egg freezing after a call for the NHS to offer egg freezing for women of 30 to 35 as an insurance policy for their future fertility – you can read more about it here. Although the suggestion was supported by the patient charity Fertility Network UK, others didn’t agree, and Lord Winston warned that he felt women risked being exploited by the suggestion. The Royal College of Obstetricians and Gynaecologists has also called for caution where social egg freezing is concerned. It’s an interesting debate.

Perhaps freezing eggs might for some women save future heartache, but it’s still far from guaranteed that taking this option will result in a baby in the future. As anyone who has experience of IVF knows, having a good stock of eggs doesn’t bring any certainties, and women might need to go through a number of cycles of freezing to have eggs for the future. But could investing in egg freezing save the NHS money in the long run? An egg freezing cycle is essentially the same as an IVF cycle but split into different stages – so you are still harvesting eggs, fertilising them in the laboratory and then replacing them into the womb at a later date. So might you actually end up paying for IVF for women who might not ever need it? The reality is that the majority of people pay for their fertility treatment themselves, and perhaps sorting out the postcode lottery of funding for IVF in England would be a better first move as this is a medical treatment for people who have fertility issues, rather than a medical treatment for people who are trying to insure against having difficulties in the future.  What do you think?

The cost of IVF

When you’re thinking about having IVF and looking at different clinics, the logical place to start is clinic websites – but it is increasingly apparent that when it comes to the cost of a cycle of treatment, that might not be as helpful as it should be. The headline prices for IVF on clinic websites have always been lower than the price patients pay as they rarely include the drugs used during a treatment cycle which adds considerably to the bill. Recently, however, I’ve spoken to a number of patients who have paid up to twice as much as the price their clinic websites have suggested a cycle costs. That’s not because they’ve chosen to have lots of additional optional treatments, but rather because the clinic website cost doesn’t include lots of things that make up part of a normal treatment cycle, such as scans, blood tests, appointments with a consultant or sedation during egg collection.

If you are having treatment here in the UK, your clinic has to give you an individualised fully costed treatment plan before you start your cycle and this should include an estimate of everything you will have to pay. If you are having treatment overseas, there is no such requirement and additional costs can be an issue.  When considering a clinic,  the important question is what the clinic thinks you are likely to pay in total for your cycle rather than what the website suggests could be the cost of treatment.

New IVF exhibition at London’s Science Museum

 

Gallery views of “IVF: 6 Million Babies Later”. An exhibition marking the 40th anniversary of the ‘miraculous’ birth of Louise Brown on 25 July 1978. The exhibition explores the ten years of testing, hundreds of failed attempts and many setbacks faced by Robert Edwards, Patrick Steptoe and Jean Purdy, in their quest to treat infertility and achieve the first successful IVF birth.


This morning I went to London’s Science Museum for the opening of a special IVF-themed exhibition to mark the 40th anniversary of the birth of Louise Brown, the first IVF baby,.

Speaking at the launch of the exhibition – IVF: 6 Million Babies Later – Sally Cheshire CBE, Chair of the HFEA, paid tribute to the work of Professor Sir Robert Edwards, Dr Patrick Steptoe and Jean Purdy.

Sally said: “It is to these three people that we owe the most, for inventing in vitro fertilisation or IVF, persisting until it succeeded and allowing millions of patients to create their much longed-for families. Louise Brown’s birth 40 years ago was a defining moment in medicine and one that went on to have a huge impact on both the lives of individuals and society.”

The exhibition explores the remarkable story of IVF, from the opposition, uncertainty and challenges faced by the early pioneers, to the latest research in reproductive science today. Visitors will be able to see one of the ‘Oldham notebooks’, as they are known, that record the scientific data collected by Purdy and Edwards between 1969 and 1978, as well as examples of the equipment they used. Over 10 years, the notebooks recorded data for 282 anonymous women but only five pregnancies and two successful births.

The rest of the exhibition shows the worldwide media attention Louise’s birth brought to her family and what the future holds for scientific development and the millions of patients who experience fertility problems.

Sally adds: “There have been huge advancements in scientific research and medicine over the past 40 years and the UK remains at the forefront of scientific and clinical development in IVF. The 40th anniversary of Louise’s birth is a milestone and we can look forward to an exciting and challenging future as medicine and science allow more people to have the families they want.”

IVF: 6 Million Babies Later is free to visit and open daily from today until November 2018.

If you’ve had successful IVF treatment…

If you are based in or near London, you may be interested to know about a very special parents and babies group taking place on Wednesday lunchtime at the Bush Theatre as part of the amazing Fertility Fest. The Life and Lunch meeting is just for IVF parents and babies and is an opportunity to discuss candidly and confidentially, how it feels to become a parent after you’ve struggled to conceive. It is being facilitated by Saskia Boujo, Founder of My Beehive and creator of the ‘IVF and Proud’ merchandise brand; Helen Daviesauthor of More Love To Give about her story of secondary infertility; and Gabby Vautier, Co-Director of Fertility Fest and mum of IVF toddler twins.

I will also be there with five free copies of my book “Precious Babies – Pregnancy, Birth and Parenting after Infertility” to give away! Come and join us – it promises to be a fabulous session.

Thinking of having treatment overseas?

If you are considering going abroad for fertility treatment, you may be interested in this article I wrote for a supplement for The Times earlier this week.

For many people, going overseas can be a cheaper option, and many return with positive stories about their experiences, but you do need to be aware of the facts and understand the differences you may find if you choose to have treatment outside the UK.

There are some great clinics across the globe, but there are also some that are not quite so great and you don’t have the protection that you have here in the UK of knowing that all  clinics offering IVF are licensed and regularly inspected by the Human Fertilisation and Embryology Authority. As you don’t have that luxury with clinics elsewhere, you do need to make sure you do your homework and research as much as you can about the clinic and the country to ensure that you are left feeling that you did the right thing in choosing to travel for treatment.

Just relax…

For anyone with any experience at all of fertility problems, there’s a general understanding that probably the worst thing someone can say to you is “just relax…”, and yet this is the advice a TV doctor gave on ITV’s Lorraine programme. Dr Hilary Jones apparently said to a caller who was asking for advice after three unsuccessful rounds of IVF;  “What I would say is, and this is probably the hardest thing to do, is just relax about it. There have been so many people that I’ve known who’ve gone through several rounds of IVF and nothing happens. And when they’ve given up, and gotten on with their lives, it miraculously happens naturally… Sometimes stress itself can have a very negative effect. So try living your life as normally as you can.”

I suppose this just shows why you should stick to asking fertility specialists for advice rather than a TV doctor, but there has been an understandable backlash from fertility patients and the charity Fertility Network UK. There is certainly a lesson to be learned for TV producers about the risks of getting a GP, who is by nature a generalist rather than a specialist, to offer advice to those who have already been treated by experts in any field of medicine. But should any doctor, even if they are a GP rather than a specialist, be telling people to “just relax” or suggesting that stress might be to blame for infertility? Apart from anything else, we all know that fertility problems cause huge amounts of stress – and that telling someone who is trying to conceive to “just relax” is about as helpful as telling them to get a dog, go on holiday or any of the other helpful advice that non-experts in the field like to pass on.

There is another problem here though, and that’s to do with blame. Suggesting that your stress levels might be responsible for your blocked fallopian tubes or endometriosis is nonsense, and yet many people do end up feeling that it’s their fault they can’t conceive in a culture which encourages you to believe that you can make the difference to outcomes by thinking positive, clean eating or complementary therapies. The truth is that none of these things are going to unblock your tubes or get rid of endometriosis, and for a medical professional to suggest that getting pregnant might miraculously happen naturally if you just relax is quite bizarre.

Even the response has been interesting, with Woman & Home covering the issue with a headline “Lorraine’s Dr Hilary faces backlash following ‘insensitive’ comments during IVF discussion’. They were not ‘insensitive’ comments but insensitive comments – and that’s the understanding that we still need to change!

One or two embryos…

One discussion theme which comes up now and again on fertility websites and forums is whether to put back one embryo or two when you are having IVF, and there are always people advising others to “go for two” because it will double the chances of getting pregnant if you “don’t mind” having twins. For anyone who is struggling to conceive, the idea of twins can seem hugely attractive – an instant family in one go – but it’s important to be clear that multiple pregnancy is the biggest risk from IVF treatment for you and for your baby.

The best advice to anyone who is thinking about this as a dilemma is that you should be guided by the embryologists at your clinic, assuming you are having treatment here in the UK where your health and that of your babies is always put first when it comes to numbers of embryos to transfer. Most women should have one embryo put back, and two are only considered if you have had repeated unsuccessful attempts at IVF in the past, if you are older or if your embryos look less likely to implant. Putting two embryos back will not double your chances of getting pregnant. In fact, when  single embryo transfer is based on your embryologist’s advice, it should not reduce your chances of getting pregnant and if you would have got pregnant with twins, you will still get pregnant with one embryo. A multiple pregnancy is more likely to end in miscarriage but this is not always considered when people are making decisions about how many embryos to transfer.

Although we all know lots of twins who are flourishing and healthy, we don’t hear so much about those who aren’t. The increased risk of miscarriage, and of problems for the babies who are more likely to be born prematurely and may have disabilities or long term problems is very real. There are also risks for the mother such as high blood pressure and pre eclampsia and haemorrhage. You can read more about this here on the HFEA website.

This is why the best fertility clinics – those who really have your interests at heart – have a good success rate and a low multiple pregnancy rate.

Can you be happy if IVF doesn’t work?

It’s one of those things people don’t even want to think about when they’re going through fertility treatment – what might happen if it didn’t work, ever? Could you really be happy if you didn’t end up with a baby? What would you do if all that time, effort, money and emotional investment led to nothing? Would your life ever feel fulfilled and enjoyable? Could the overwhelming sadness go away? I want to tell you about someone who is a brilliant example of the fact that life after IVF treatment can be both fulfilled and enjoyable. She’s called Lesley Pyne, and I first met her when I was a trustee for the charity which is now Fertility Network UK. Lesley was one of my fellow trustees, and had joined as she was involved with the section of the charity for people who were involuntarily childless known at the time as More to Life.

Today, I met Lesley for the first time for a while and it struck me that she looked about 10 years younger than she did when I last first knew her – which means she must look about 20 years younger than she really is! Her eyes were bright and shining, and her zest for life was almost palpable. Lesley, who always seemed to be making an effort not to stand out when we were fellow trustees, was dressed in bright colours with electric blue nails.  She is happy, she is making the most of the good things in her life – and she has just written a book explaining how she went from feeling devastated by unsuccessful treatment to this confident, happy woman who gets the best out of her life – it’s due to be published in June and is called Finding Joy Beyond Childlessness.

It strikes me as we talk that Lesley has embraced something we could all learn from – living for the moment, focusing on the positives and making an effort to enjoy what we have. I haven’t read Finding Joy Beyond Childlessness yet – but she explained that it contains her story and those of a number of other women who have come out the other side of involuntary childlessness to find fulfilment. She says it is a journey,  and it can be hard along the way, but that there is life beyond childlessness, there is more to life – and if you need help along that path, keep an eye out for Lesley’s book when it comes out in June.