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.’

Fertility Fest 2019

Earlier this week, I went to the launch of Fertility Fest 2019 at London’s Barbican where the plans for this year’s event taking place in April and May were revealed. It promises to be another fantastic experience, bringing together a wide range of artists and fertility experts to discuss topics ranging from miscarriage to race and reproduction. There will also be a production based on Julia Leigh’s fantastic book, Avalanche – you can see our interview with Julia about her book here

Have a look at the website, see what’s on and what might interest you and make sure you book your tickets well in advance – this year’s Fertility Fest is sure to sell out sooner rather than later!

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.

That time of year again…

It’s December and it ought to be a lovely time of year, but if you’re trying to conceive, it can be incredibly painful to find yourself faced with constant reminders of what you don’t have as you have to contend with the endless images of happy smiling families wherever you go. It can make you feel very lonely and isolated, as if you’re the only person who isn’t part of the cheery celebrations, so it’s worth bearing in mind that there are 3.5 million other people in the UK at the moment who are experiencing difficulties getting pregnant and who are probably feeling very much like you are about it all.

You will find lots of advice on how to cope at Christmas, but I think perhaps the most important thing to do is to accept that it’s a difficult time of year – and to do all that you can to look after yourself. Just because it’s Christmas, that doesn’t mean you have an obligation to do things that you know will be difficult or upsetting. Don’t feel guilty about making an excuse if you know you will find your niece’s nursery nativity play or the family Christmas party with your three pregnant cousins a challenge. At this time of year, it’s easy to be double-booked and making an excuse is acceptable. If you want, you can be honest and just say that actually you would find it too upsetting, but other people don’t always understand.

If you have friends who are going through fertility problems, it can be a good time to make arrangements to spend time together and do something different. You may even want to get away completely if you are able to and celebrate in your own way whether that’s a Christmas holiday in the Caribbean (yes, I wish too…), a day out in the countryside, pizza for two at home for Christmas lunch or an all-day long scrabble contest. If you want to do something in the spirit of Christmas, you could consider volunteering for a charity like Crisis which provides Christmas for homeless people or Community Christmas which offers companionship to older people who might otherwise be alone.

If you are struggling to deal with this season, it may be helpful to talk to a fertility counsellor who has the specialist skills and knowledge to understand how you are feeling. Some counsellors offer Skype or telephone counselling services and you can find a list of specialist counsellors on the British Infertility Counselling Association website.

Remember, this is your Christmas too and it’s entirely up to you what you want to do. You don’t need anyone’s blessing to decide that you’re going to branch out on your own and do something completely different, something that will make you happy and that you will enjoy. Think carefully about what might make you feel better and have fun whatever you decide!