A doctor’s view of IVF funding cuts

When we hear about cuts to funding for fertility treatment, it’s often presented as yet another Clinical Commissioning Group deciding to reduce what they offer to couples with fertility problems. We hear about the statistics for the tiny number of areas in England where IVF is offered in the way that NICE considers both clinically and cost effective. We hear that in certain parts of the country, commissioners are rationing IVF by making random decisions about who is eligible which have nothing to do with how likely the treatment is to work. We hear about the postcode lottery and how unfair this is within a health service that is meant to be national.

What we don’t hear so much about is what any of this actually means to the real people who have to live with the consequences of these cuts to funding – and that’s why this article from Adam Kay in The Times is so important. For anyone who doesn’t know, Adam Kay is the author of This Is Going to Hurt: Secret Diaries of a Junior Doctor’ and worked for a number of years as an obstetrician and gynaecologist.

Adam Kay’s article lays bear the reality of fertility funding cuts as experienced by the patients he saw – the woman who attempted suicide after learning she wasn’t eligible for IVF when she would have been if she lived just five miles away, the grief couples experience when they learn that they won’t be able to access any treatment for their medical condition.  Adam Kay talks about this from the perspective of a professional delivering the news, and that makes this so compelling. It’s such an important point of view and really helps to explain why those who dismiss fertility treatment as a “lifestyle choice” have got it so very wrong.

Thanks to Adam Kay for speaking out to support fertility patients across the UK – and let’s hope for more professionals talking honestly about the impact of funding cuts in their clinics, and what it means to them and to their patients. This really can make so much difference. It’s easy to dismiss statistics about cuts to fertility funding and to ignore concerns about a postcode lottery. It’s not so easy to dismiss the way this affects the lives of real people.

100,000 call for fair access to IVF

Patient Charity Fertility Network has reached 100,000 signatures on the #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery. Petitions which reach 100,000 signatures prove the public demand for a debate in Parliament. The #Scream4IVF campaign, with partners Saatchi & Saatchi Wellness, was launched less than three months ago on 6 September 2018.

Commenting on #Scream4IVF’s success, Fertility Network’s chief executive Aileen Feeney said: ‘Gathering 100,000 signatures, in such a short space of time, demonstrates the overwhelming public support to end the unethical and unfair IVF postcode lottery and create an equitable system for access to NHS fertility services in the UK. These 100,000 signatures represent the screams of pain and frustration from not being able to have a child without medical help – and not having your screams heard. The screams of childbirth are loud, but the screams of infertility are just as loud and today they are finally being heard. In the face of this overwhelming public pressure, Fertility Network calls urgently on the Government to debate in Westminster the issue of fair access to NHS fertility treatment. Thank you, too, to the incredible women and men who have shared their #Scream4IVF and made their infertility voices heard. We are stronger together.’

Steve McCabe MP (Birmingham Selly Oak) said: ‘I am thrilled so many people are joining our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is time we started treating it like one. It is simply unfair that access to IVF is down to where you live and not your medical need. In the New Year my Access to Fertility Services Ten Minute Rule bill is due to have its Second Reading in Parliament. This is the first small step to ending this disgraceful postcode lottery.’

Leader of the Liberal Democrats Vince Cable said: ‘People struggling with infertility can all too often face damaging mental health issues. It is wrong that there is so little support. 100,000 backing this campaign shows the strength of feeling behind the call for change. Liberal Democrats are listening and Ministers in Whitehall must listen too.’

Congratulations to all at Fertility Network UK on this huge success, particularly Chief Executive Aileen Feeney and London Regional Organiser Anya Sizer!

Scream4IVF

I am sure you will all be aware of Fertility Network UK’s Scream4IVF campaign, aimed at ending the postcode lottery for IVF treatment. If you haven’t signed the petition yet which calls for a parliamentary debate on the subject you can do so here. The charity has been asking people to donate their scream on social media to give a voice to people with fertility problems and allow their frustrations to be aired. The screams will be collated to form the world’s longest scream for IVF to be played at a rally outside Westminster. The charity is encouraging people to join them at at the rally which takes place at Richmond Terrace at Westminster on October 10th from 5pm to 7pm.

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.

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.

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.

Have you rated your fertility clinic?

If you’re having fertility treatment in the UK, or if you have done in the last year, have you given feedback on your experiences at the clinic? The body which regulates fertility clinics in the UK, the Human Fertilisation and Embryology Authority (HFEA), is keen for patients to give their clinic a rating which you can do here on their website. This feedback is anonymous, and is used to give the clinic a patient rating on the HFEA website so that anyone considering having treatment at the clinic will know what other patients think about it.

You can also add any particular comments or views which are seen by the inspection team who go into the clinic to check how well it is working. This is incredibly important as it helps give inspectors a view of how the clinic is doing from a patient perspective and allows them to look into any particular areas of concern – or to notice where a clinic is doing particularly well.

If everyone took a few minutes to rate their clinic after having treatment it would help promote best practice and ensure that more fertility patients are cared for by compassionate staff, feel involved in discussions about how to progress their treatment and receive exceptional emotional support. So, there’s nothing to lose and everything to gain – if you haven’t done it already, here’s the link again to give feedback on your clinic.

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