New restrictions on IVF funding

It’s National Fertility Awareness Week and today the campaign group Fertility Fairness has released an audit which has found new restrictions on IVF funding. The survey covered all the Clinical Commissioning Groups (CCGs) in England and found that 80% are failing to follow the NICE guidance which says that all eligible couples under the age of 39 should be offered 3 full cycles of IVF treatment.

Many are also setting new criteria to limit eligibility for treatment. Despite the fact that neither male age nor weight affect the success rate of IVF, more than a quarter of CCGs have decided to use the male partner’s body mass index (BMI) to decide whether a couple can access NHS treatment, and 8% no longer offer NHS funding if the male partner is 55 or over. Around one in four CCGs also use AMH or antral-follicle count to check a women’s ovarian reserve (an estimate of the number of eggs in the ovaries) to decide whether she is eligible for IVF. The NICE guidance gives some guidance on levels at which these may be helpful to assess how a woman may respond to the drugs used in IVF to stimulate the ovaries, but there is no suggestion at all that this might be used to decide who should be eligible for treatment.

Consultant gynaecologist and Fertility Fairness committee member Raj Mathur, said: ‘ Male age and BMI are not in the NICE guidance as criteria for IVF and there is no strong evidence of impact on clinical outcomes of IVF. AMH and antral follicle count are in the NICE guideline as predictors of ovarian response, but NOT as predictors of the chance of having a baby through IVF. Commissioners are making unjustified extrapolation in using them for rationing.’

The audit found that

  • 3.6% of CCGs have removed NHS IVF entirely
  • 40% do not offer a full IVF cycle, limiting the number of frozen embryo transfers
  • 20% offer one full IVF cycle, transferring all fresh and frozen embryos
  • 23% offer two IVF cycles.
  • 13% offer three IVF cycles.

In the last two years, 30 CCGs have reduced NHS fertility services, and one in ten CCGs is currently consulting on cutting or removing NHS fertility treatment.

Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shocking to see CCGs introducing their own ‘access to IVF’ criteria, as well as reducing the number of IVF cycles they offer. It is not the CCG’s job to decide the criteria for accessing NHS fertility services. NICE has accessed the evidence in its guideline and developed access criteria for NHS patients and they do not include male BMI, male age, a woman’s AMH level or whether or not a couple has a child from a previous relationship. What criteria will CCGs introduce next; star signs and shoe size? CCGs need to remove their extra ‘access to IVF’ criteria now.’

Aileen Feeney, co-chair of Fertility Fairness and chief executive of leading national charity Fertility Network UK said: ‘ Fertility Network is extremely concerned about the effect that reducing access to NHS IVF has on already distressed patients. Infertility is a devastating disease causing depression, suicidal feelings, relationship breakdown and social isolation; removing the recommended clinical help or making it harder to access is cruel and economically short-sighted. Access to NHS treatment should be according to medical need and not your postcode. We urge anyone affected to join Fertility Network’s #Scream4IVF campaign calling for fair access to NHS IVF in the UK; with your help we can reach 100,000 signatures and hold a debate on the issue at Westminster. Sign the petition at www.scream4IVF.org and share your #Scream4IVF during Fertility Week.’

Pregnancy test recall

A false positive from a pregnancy test is the nightmare of anyone who has been through fertility treatment, but more than 58,000 digital pregnancy tests called Clear & Simple have been recalled after it became apparent that the test had mistakenly told some women they were pregnant when in fact they weren’t.

If you have bought a Clear & Simple test, manufactured by Guangzhou Wondfo Biotech, you should return it if it is from the potentially faulty batch. You can check the lot number on the inside and outside of the package – it is Lot Number DM10220170710E with an expert date of January 2020 which is affected.

The manufacturers stress that only a small number of problems have arisen with the tests and that they have been removed from shops already, but if you do have a test from this batch, you should return it and anyone who has had a false positive result from these tests should report it.

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!