When IVF doesn’t work…

It’s something no one wants to think about when they are just starting out on fertility tests and treatment, but we know that IVF doesn’t always work. Even in the best case scenario, an individual treatment cycle is more likely to end with a negative pregnancy test than a positive one, although cumulative success rates are much more heartening. Perhaps if we didn’t shy away from the statistics, it would make unsuccessful IVF easier to cope with.

At fertility information events, there is often a reluctance to include any mention of IVF not working, and that doesn’t help fertility patients. We wanted to include a session on this, and on living without children at the Fertility Forum in London on March 30. We wanted to give an opportunity to hear some of the strong and powerful voices of women who are living without children, and how they have found peace and happiness. This session isn’t exclusively for people who are approaching the end of their treatment – it’s just as important for those who are still going through tests and fertility treatments to allow them to see that treatment not working doesn’t have to be the end of happiness.

In a session chaired by Fertility Fest founder Jessica Hepburn, we have four inspiring women who are helping others change the way we think about living without children. There’s Jody Day, founder of Gateway Women, Yvonne John, author of Dreaming of a life unlived, Kelly Da Silva of the Dovecote and Lesley Pyne, author of Finding Joy Beyond Childlessness.

I’ve met all of them and they are a pretty fabulous bunch – don’t be afraid to come and hear what they have to say, no matter where you are on your fertility journey. Organised by patients and bodies representing all the professionals in the field, the Fertility Forum also includes talks on a huge range of other fertility-related topics with many of the UK’s leading experts. Come and join us in London on March 30 for a day of accurate, unbiased information in a non-commercial setting with no promotions or sales pitches. The Fertility Forum is all about evidence – and you can get tickets here.

Fertility Forum speakers

Next month’s Fertility Forum promises to be an informative event for anyone who wants to know more about their fertility, tests and treatment options. The wide range of speakers will be covering topics across the board to ensure there is something for everyone whether you are just starting to think about your future fertility or have already had treatment. The full list of topics and speakers is now finalised:

  • Fertility specialist Raj Mathur will look at what can affect your chances of conceiving naturally, when and how to seek advice and will run through the tests you should have.
  • Miscarriage expert Professor Lesley Regan will cover the causes of miscarriage and why do some women experience recurrent miscarriage. She will discuss investigations and what can be done to help.
  • Fertility specialist Ertan Saridogan will give the low down on endometriosis and how it can affect fertility. He will cover all the options for treatment and how to choose between them.
  • Leading male fertility specialist Professor Allan Pacey will explain male fertility and how sperm are made. He will talk about what affects the number and quality of sperm that a man make and the tests that are used to diagnose male fertility problems, as well as the solutions that can be offered.
  • Director of the Donor Conception Network Nina Barnsley will explain what you need to think about when considering donor treatment, how to decide whether it’s right for you and will discuss openness around donor treatment.
  • Chair of the Association of Clinical Embryologists Jason Kasraie will look at the latest new techniques and technologies in the fertility world and consider evidence is as to whether they work and discuss the factors that influence the chances of successful treatment.
  • Fertility counsellor and Chair of the British Infertility Counselling Association Angela Pericleous-Smith will discuss the pressures on yourself, your relationships and your friendships. She will explore coping strategies and explain how to manage anxieties.
  • Fertility specialist Ephia Yasmin will be explaining all you need to need to know about egg freezing including the chances of success, as well as looking forward to future developments in egg freezing.
  • Women’s Voices Lead at the Royal College of Obstetricians and Gynaecologists Kate Brian explores why people chose to go overseas and looks at the risks and benefits. She will give some tips to consider when you are making a decision.
  • The HFEA’s Jo Triggs will explain what to look for when choosing a clinic, what statistics can and can’t tell you and will explore the other factors you should take into account.
  • Fertility Fest founder Jessica Hepburn will chair a session with Gateway Women’s Jody Day, authors Lesley Pyne and Yvonne John and the Dovecot’s Kelly Da Silva who have all helped to change the way we think about living without children. They will discuss how to find peace and happiness after unsuccessful treatment, and will talk about the societal attitudes to childlessness that need changing.
  • Professor Adam Balen is a leading specialist in PCOS and will discuss the causes of this common cause of fertility problems. He will discuss how PCOS should be investigated and treated and will also look at ways that you can help yourself.
  • If you want to know more about IVF, fertility specialist Jane Stewart will explain what assisted conception is and why it doesn’t always work. She will talk about the limitations of IVF and why it may not always be the right treatment.
  • One of the UK’s leading embryologists, Rachel Cutting will explain how embryos develop from fertilisation to blastocyst. She will look at how embryos are graded and selected, and will explore how time-lapse can help. She will also talk about embryo freezing.
  • Men often get overlooked when it comes to fertility support. Richard Clothier has been a leading voice for men’s experiences of fertility problems. He will focus on men and fertility, and the importance of talking as well as exploring tips for mitigating the grief.
  • Is your lifestyle having an impact on your fertility? Grace Dugdale is a reproductive biologist and nutrition scientist and will give evidence-based information about health, diet and lifestyle in relation to male and female fertility. She will talk about what can impact your fertility, and about preparing your body for pregnancy.
  • IVF treatment is usually more like a marathon than a sprint. Emotional and financial resilience are crucial to continuing the journey, and there can be pressure to pay for additional tests, drugs or interventions which may not increase the chances of success. Fertility specialist Professor Yacoub Khalaf will discuss what’s worth paying for and what isn’t.
  • Are you eligible for NHS funded fertility treatment? There are guidelines from the National Institute of Health and Care Excellence (NICE) on who should qualify, but these are often ignored. Sarah Norcross from Fertility Fairness and Aileen Feeney from Fertility Network UK will explain the current funding situation and what you should be entitled to.
  • Psychology Professor Jacky Boivin explains stress, and what evidence there is about the impact it may have on fertility. She will also discuss strategies for coping with stress.
  • What is ovarian reserve testing and what does it mean? Fertility specialist Melanie Davies will look at ovarian testing and what it can and can’t tell you. She will explain the realities of having fertility treatment when you are older and what this means for the chances of success.
  • One of the UK’s leading fertility lawyers, Natalie Gamble,will discuss the legal situation regarding parenthood for sperm and egg donation. She will explain surrogacy law and practice, recent developments and law reform.

You can choose which of these amazing sessions to attend – tickets for the day are now available at £25 which covers the costs of putting on the day. You can find out more and book your tickets here – https://bit.ly/FertilityForum

 

 

The Fertility Forum is on Facebook!

There is now a Facebook page for the Fertility Forum, the evidence-based non-commercial information day taking place in London on March 3O. You can find it here – https://www.facebook.com/events/509903912750190/ Do like the page if you have a Facebook account and share it with friends and colleagues – and come along and join us if you can! You can book here 

Set up by patients working with all the professional bodies in the field, the Fertility Forum aims to be a day of pure evidence about fertility with no promotion for particular clinics or treatments, and no one selling anything. It’s all about evidence.

The Fertility Forum will take place at the Royal College of Obstetricians and Gynaecologists (RCOG) in London, and many of the UK’s leading fertility specialists will be speaking at the day, and there will be three strands of talks covering a huge range of topics related to fertility. You will be able to choose which talks you attend when you get your tickets. There is a charge for the tickets (£25) to cover the cost of putting on the day, but there are no additional charges.

The day has been organised by the Royal College of Obstetricians and Gynaecologists (RCOG) and the British Fertility Society working in partnership with the Human Fertilisation and Embryology Authority (HFEA) and Fertility Network UK alongside the Association of British Andrologists, British Andrology Society, Association of Clinical Embryologists, British Infertility Counselling Association, Royal College of Nursing and the Senior Infertility Nurses Group. The Donor Conception Network will be taking part in the event along with other patient groups including the Miscarriage Association. You can find out more about the day, including the full programme of speakers, here 

EndoMarch 2019

For the sixth year running, women around the world will be taking part in a peaceful march to raise awareness for those who have endometriosis. The London leg of the EndoMarch will take place on Saturday 23 March with the hope of publicising the need for faster diagnosis, greater education and more funds for research into better treatments and an eventual cure.

The walk is about 2.2km through Central London and is a chance for people who have endometriosis and others who are supporting someone with endometriosis, or who are interested, to make their voices heard. It is free to join but the organisers ask people who want to go along to register so they have an idea of how many people will be joining them on the day. You can register here https://www.eventbrite.co.uk/e/worldwide-endomarch-london-uk-2019-tickets-53917781536?aff=ebdshpsearchautocomplete

You can follow the organisers on Facebook at Worldwide EndoMarch London UK, Twitter at @EndomarchLondon and Instagram at endomarchlondon

Fertility in the workplace

Patient support charity Fertility Network UK have launched a new initiative this week called Fertility in the Workplace to try to raise awareness of how difficult it can be for people going through treatment to deal with work.

FNUK chief executive Aileen Feeney said: ‘Fertility treatment is on the increase with approaching 68,000 treatment cycles carried out every year in the UK and 1 in 6 couples (3.5 million people) affected, yet the majority of employers do not have a workplace policy providing the vital support employees going through fertility treatment need. Research shows having a supportive fertility in the workplace policy is good for business and employees – levels of distress associated with fertility treatment are reduced and employees are more likely to be productive and remain in work – that’s why Fertility Network is launching Fertility in the Workplace – an initiative designed to help employers support employees facing fertility challenges.‘Careers need not be damaged or jobs lost if there is an appropriate fertility in the workplace policy identifying the specific support available for couples or individuals having IVF. Introducing Fertility Network’s Fertility in the Workplace initiative ensures employees are treated fairly and empathetically and feel fully supported. The initiative provides a framework for employers to implement a fertility in the workplace policy and, crucially, provides guidance for both employees and for employers, who may have limited understanding of the impact of infertility and what fertility treatment is really like.’

Fertility Network’s research highlights just 26 per cent of people having IVF reported their workplace had some policy relating to treatment (58 per cent said their employer did not, and 19 per cent were not sure). The lack of a fertility workplace policy was associated with even higher levels of distress.

‘Companies are failing already distressed employees if they do not provide a supportive fertility in the workplace policy,’ said Ms Feeney. ‘Fertility Network’s survey underlines just how much the lack of workplace support affects people undergoing IVF. 50 per cent of respondents worried treatment would affect their career prospects; 35 per cent felt their career was damaged.’

Fertility funding restored in South Norfolk

Usually when we hear about changes to fertility funding, it means one thing – cuts to services. In South Norfolk, however, local commissioners who cut all funding for fertility treatment two years ago have now reviewed their decision and will offer two cycles to women under 39 and one cycle to eligible women aged 40-42.

It’s great news to see such a positive step for fertility patients and will bring hope to people in other areas of the country where funding for fertility treatment has been reduced or removed.

You can read local media coverage of this development here

Fertility Forum – bringing professionals and the public together

If you’ve ever wanted access to clear, reliable information about fertility problems and treatment, the Fertility Forum on 30 March is for you. Set up by patients working with all the professional bodies in the field, the Fertility Forum aims to be a day of pure evidence about fertility with no promotion for particular clinics or treatments, and no one selling anything. It’s all about evidence.

The Fertility Forum will take place at the Royal College of Obstetricians and Gynaecologists (RCOG) in London, and many of the UK’s leading fertility specialists will be speaking at the day, and there will be three strands of talks. They will cover everything from nutrition and lifestyle advice to the latest developments in fertility treatment. There will be talks on specific fertility issues such as endometriosis and polycystic ovary syndrome (PCOS), on donor treatments and surrogacy, on recurrent miscarriage, on stress and fertility support, on male fertility problems and how men deal with infertility. The HFEA will give advice on how to choose a fertility clinic and there will be a talk on deciding whether to opt for treatment abroad. How embryos develop and why IVF does and doesn’t work will also be discussed along with an assessment of the evidence on additional treatments like endometrial scratch or embryo glue, and there will be a session on accessing NHS funding. You will be able to choose which talks you attend when you get your tickets. There is a charge for the tickets (£25) to cover the cost of putting on the day, but there are no additional charges.

The day has been organised by the Royal College of Obstetricians and Gynaecologists (RCOG) and the British Fertility Society working in partnership with the Human Fertilisation and Embryology Authority (HFEA) and Fertility Network UK alongside the Association of British Andrologists, British Andrology Society, Association of Clinical Embryologists, British Infertility Counselling Association, Royal College of Nursing and the Senior Infertility Nurses Group. The Donor Conception Network will be taking part in the event along with other patient groups including the Miscarriage Association. The day will be opened by the RCOG President, Professor Lesley Regan, and the Chair of the HFEA, Sally Cheshire CBE.

To find out more and to buy your tickets go to http://bit.ly/FertilityForum

The impact of IVF

You may have heard that having IVF brings a slightly increased risk of giving birth early and having a premature baby, but new research suggests that this may not be to do with the IVF itself. This large study was the first time researchers had used information from Finland about children conceived using IVF who had siblings who’d been conceived naturally – and found that the naturally-conceived siblings had just as great a risk of being born prematurely. It’s really interesting research as there are often questions about whether adverse effects which appear to be related to IVF are actually to do with the treatment itself or whether the underlying causes of infertility may be the real link.

You can read more about the study, which was published in the Lancet, here and here 

Advice on treatment add-ons

It is sometimes difficult as a patient in a fertility clinic to know whether it is worth paying for some or any of the add-on treatments you may be offered. Now, the Human Fertilisation and Embryology Authority (HFEA), which regulates IVF clinics in the UK, and 10 of the leading professional and patient fertility groups, have agreed how treatment add-ons should be offered ethically in clinical practice in the UK in a consensus statement published today.

It’s published in response to growing evidence of add-ons being offered to patients, without conclusive evidence to date that any of them increase the chance of a pregnancy, and the fact that many patients feel they must do anything to improve the possibility of success. The aim is to create a culture change among fertility professionals in the UK.

Sally Cheshire CBE, Chair of the HFEA, said “We welcome the introduction of new treatments that could increase the chances of success, however, we want to see responsible innovation. Fertility treatment add-ons are being offered to more patients by clinics and we know many patients are asking for these add-ons and paying for them if they have private treatment. It’s crucial that clinics are transparent about the add-on treatments they offer, including the potential costs, to ensure patients know exactly whether they are likely to increase their chance of having a baby. That is why we’ve been working with professional groups such as the British Fertility Society to decide how unproven treatments into clinical practice should be correctly and ethically introduced, which is a vital step towards a more transparent approach in fertility services. We are now expecting clinics to provide information about treatment add-ons to patients, including what evidence there is of effectiveness.”

Alongside the principles for clinics, the HFEA has also published information on the most commonly offered add-ons, with a traffic light rating system, to help patients better understand the effectiveness of treatments they might consider.

Sally adds: “It’s crucial that patients inform themselves about the add-ons they may be offered, so that they can ask the right questions, and make the right choices, when choosing what treatment to have. We’ve produced ‘traffic light’ rated information on our website that keeps them up-to-date with the latest evidence on each of the most commonly offered add-ons.”

Jason Kasraie, Chair of the Association of Clinical Embryologists, said “We support greater transparency in the sector with regard to treatment add-ons. Whilst it is important that we work to ensure patients always receive the latest treatments and have access to new technologies in order to maximise their chance of treatment success, it is also essential that we ensure patients are fully informed and that only procedures or technologies that are evidence based are used.”

Key principles of the consensus statement are:

  • Clinics should only offer treatment add-ons where more than one high quality study demonstrates a treatment add-on to be safe and effective.
  • Clinics should stop offering the treatment add-on to patients if concerns are raised regarding safety or effectiveness.
  • Patients must be clearly informed of the experimental nature of any treatment add-on which is offered, where there is no robust evidence of its safety and/or effectiveness
  • Patients should not be charged extra to take part in a clinical trial.

The General Medical Council, has welcomed the statement. Chief Executive, Charlie Massey said: “We welcome this consensus statement, which will help protect fertility patients from poor practice and feeling pressure to accept additional, unproven extras. Patients deserve to have the best available evidence so they can make informed decisions, in partnership with doctors. It’s vital that doctors innovate responsibly and place patient safety first and foremost. Our guidance on consent sets out how doctors should work with patients to make decisions together about care and treatment options. Doctors working in the fertility sector must ensure that patients have information about the options available to them, including risks and available evidence, as well as any potential benefits.”

You can read the statement here and find out more about the HFEA’s traffic light system for add-ons here 

Petition for access to IVF goes to Number 10

The fertility patient charity Fertility Network presented its #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery to 10 Downing Street on Monday afternoon. More than 100,000 people signed the online petition. It was a remarkable feat by a small charity to get such support for this cause and to be able to present the petition in this way.

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 urgently calls on the Government to debate in Westminster the issue of fair access to NHS fertility treatment.’

Steve McCabe, the MP for Birmingham Selly Oak has been a key political supporter of the campaign for fair access to treatment and he was present when the petition was handed in. Steve’s  Access to Fertility Services bill will have its second reading at Westminster later this month. He said: ’I am thrilled so many people have got behind our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is completely unfair that access to IVF treatment depends on where you live. We can’t have a situation where local NHS groups are allowed to ignore NICE guidelines and ration treatment to save money. It is simply unfair and we wouldn’t stand for it if we were talking about other medical conditions such as cancer or diabetes. It is clear that the public are behind our campaign so now we need the government to step up to the plate and take action to end this disgraceful postcode lottery.’