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.

Frozen embryo success

If you’re having fertility treatment, you may worry that using frozen embryos might reduce your chances of a successful pregnancy. Now, new research from Australia and Vietnam has found that your chances of getting pregnant are similar whether you use fresh or frozen embryos.

The researchers explained that previous studies have shown that for women who have PCOS, frozen embryo transfer leads to an increased chance of success so this research was focused on women who don’t have PCOS, and it found no difference in outcomes. The bottom line is that frozen embryo transfer can lead to the same success rates, and that putting back one embryo at a time is not only the safest way to have IVF, but will not reduce your chances of having a baby either.

The research is published in The New England Journal of Medicine, and you can read more details here and there’s an article on the subject with quotes from the researchers Dr Lan Vuong, from the University of Medicine and Pharmacy at Ho Chi Minh City, and Professor Ben Mol, from the University of Adelaide, here

IVF success rates

I’ve just been reading about an overseas clinic which claims an IVF success rate of more than 90% per IVF cycle started, including frozen embryo transfers. I could understand why this would seem an incredibly attractive prospect to anyone who needs fertility treatment – not only is IVF cheaper than it would be in the UK, it also appears to be far more successful. But is it? Does any clinic really have a success rate of 90%?

One of the main differences for the apparent discrepancies between outcomes at clinics here in the UK and the rates some overseas clinics claim is the way that they are presented. Here in the UK, you can check validated IVF outcomes on the HFEA website. These are accurate figures for live births over a set period. Some of the amazing rates you see on overseas clinic websites are not for live births but for positive pregnancy tests, and as we know that one in four pregnancies ends in miscarriage, it is not surprising that live birth rates are always lower than pregnancy rates.

The figures you get from the HFEA will also show you the outcomes for women of different ages. Birth rates after IVF in the UK range from  2% to 33% depending on the woman’s age. The HFEA figures show you outcomes over a set period – a specific year, or a three-year period. If you are running a clinic elsewhere and happen to have a month where you have very good outcomes and lots of women get pregnant, followed by a month where no one does, what’s stopping you from using your good month as your “success rate”?  So a success rate may be for a short period, for younger women and it may be pregnancy rather than live birth – and all of these things make a huge difference. What’s more, sometimes the figures are simply wrong. I’ve read some crazy claims for totally impossible success rates, particularly for older women using their own eggs. The truth is that IVF is less successful as we get older, and miscarriage presents a greater risk.

Many overseas clinics offer very good fertility services, but if you are thinking about treatment abroad do be careful about hyped figures and unrealistic claims about outcomes. Know what is likely and what is possible, and be wary of clinic websites claiming successes which are totally out of kilter with anything you’ve ever seen elsewhere, especially for successes for older women using their own eggs, as this may suggest a clinic which is prepared to be somewhat economical with the truth.

The cost of private fertility treatment

New research has found huge discrepancies in the prices people are charged for IVF and for many extras such as blood tests or drugs as reported here in the Times. It can be difficult if you need treatment as you don’t always feel you have time to shop around – but this shows that it is at least worth making a few calls to see whether anywhere closer to you may offer treatment at a lower price. If you do this though, you do need to make sure that the price isn’t lower because not everything is included in the cost you are being given  or because the treatment is not the same. It is also important to be aware that the headline costs on clinic websites often have little to do with the real costs that you will end up paying as a patient.

It’s not just the treatment itself where costs can differ but also the prices paid for any additional treatments which some patients are now considering. When I was looked into this, I was surprised at how big the differences were in the charges for add ons. For example, some clinics were including embryo glue in the cost of an IVF cycle whilst others were charging for it and the costs ranged from £75 to £350. It was a similar picture with endometrial scratch, which you might be able to get free at some clinics across the country by taking part in a clinical trial or which could cost you up to £450. I looked at a small sample of clinics and even in those, found these wide price discrepancies but it does show that it is worth at the very least asking why your clinic is charging what it does if it is much more than others.

Finally, don’t forget that the cost is one part of the equation. If you are having to travel a long distance to the clinic – or if it is overseas – this in itself adds costs both financial and in terms of stress. You will also want to check out the clinic details on the HFEA website to see the latest outcomes from treatment and to see how it is ranked by inspectors and other patients. There is a section in the patient ratings about cost which is particularly relevant as it shows whether people ended up paying more than they expected for treatment at that particular clinic so make sure you have at least considered these things before committing yourself.

New report from the HFEA

The HFEA has  launched its first-ever “state of the sector” report yesterday, providing an overview fertility treatment in the UK, including the success in reducing multiple birth rates to just over 10% of all IVF births.

The report, which brings together previously separate reports on incidents, inspection findings and patient feedback, records how fertility clinics and research laboratories performed in the financial year 2016-17 across a range of criteria. It is designed to give both clinics and patients a rounded view of the health of the UK’s fertility sector.

It shows that through working with the UK’s licensed clinics, the HFEA has reduced the national multiple birth rate from 24% in 2009 to 11% today, a fantastic achievement which has increased the safety of IVF for mothers and their babies and reduced the burden on NHS ante- and neonatal services. This has come without a reduction in birth or pregnancy rates, with the latter rising from 24% in 2008 to 32% today.

The report also shows that in 2016-17 there were 132 treatment and research clinics working under licence in this country, of which 34% are privately run, 29% are in public/private partnership, and 22% are NHS only (the remaining 15% are research only). During that same year the HFEA carried out 81 inspections as part of its yearly inspection cycle.

There is also specific focus on how patients experience treatment, and the new ways being developed to receive patient feedback and pass it on to clinics. A new star rating system has recently been launched on the HFEA website, giving patients the chance to rate their clinic directly and which has already been used over 700 times.

Sally Cheshire CBE, Chair of the HFEA welcomed this new report as a sign of open and healthy governance, and a continuing commitment to improving patient care:

“This report shows the full range of work, undertaken by both us and clinics, that lies behind the more than 76,000 treatment cycles performed in the UK each year, and outlines the importance of us working together to ensure patients, donors and the donor-conceived get the highest possible quality care.

“It is particularly pleasing to see that the multiple births rate has fallen consistently across the vast majority of the sector and is now very close to the 10% target we set for clinics some years ago, without a reduction in births. And it is heartening to be able to discuss with clinics real examples of patient experiences. It’s so important that patients have a voice, and I hope that the UK’s clinics will listen to what is being said.”

The report also details non-compliances, including adverse incidents, and areas for improvement. In many ways, there has been good progress, with fewer than 10 instances of non-compliance identified by inspectors in 14 main areas of the Code of Practice across all clinics in 2016-17. And of the 299 reported non-compliances overall (a slight rise from the previous year), almost all were resolved within the deadline set. This shows a sector that is open to constructive feedback and continuous improvement.

However, performance wasn’t all positive and the report reveals some areas for concern. The number of reported incidents increased from 497 in 2015 to 540 in 2016. Of these, 325 were categorised as ‘grade C’, 176 were classed as ‘grade B’, with one ‘grade A’ incident – the most severe.

Sally Cheshire CBE urged clinics to consider the impact incidents have on patients, and ensure Britain’s IVF sector maintains the highest standards:

“While the number of incidents and non-compliances must be placed in the context of the many thousands of treatments being performed in the UK each year, the fact is that all incidents, whatever the category, can be very upsetting for patients and must be avoided wherever possible. Non-compliances risk undermining the hard-won reputation for quality and rigour that the UK’s fertility sector has established over the last 25 years.

“In line with our commitment to open, frank and constructive regulation, we will continue to work with all our licensed clinics so that they strive to continually improve and maximise the chances of success for patients seeking their much longed-for families.”

The full report can be read on the HFEA website: https://www.hfea.gov.uk/