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.’

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!

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!

Can you help with a survey?

The National Institute of Health Research wants to fund some research to compare different therapies offered to women with premature ovarian insufficiency (POI), also called premature ovarian failure or premature menopause.

They are a team of doctors, researchers and women with personal experience of POI who are signing a trial to compare the treatments. To ensure that the trial is all right for  women who have POI, they are seeking your opinions. The survey should take no more than a couple of minutes to complete. Your answers are completely anonymous and it is really important as it will help improve treatment for women with POI in the future. You can find the survey here 

Fertility and wellbeing event in Wales

If you’re based in South Wales or live close by, you may be interested in the Fertility Network UK fertility and wellbeing event organised for Saturday 1st December in Cardiff. There will be more than 20 exhibitors and expert advice. The first 100 people at the event will also get a free delegate bag.

There will also be some speakers at the event. BBC Wales’ Lucy Owen will share her personal experience of fertility problems, Fertility Network UK’s Anya Sizer will talk about coping with Christmas, Tricia Lowe from Good Nutrition First will be talking about staying healthy at Christmas and singer Elin Fflur will talk about her experiences of treatment.

You can find out more from the Fertility Network UK website.

Adoption and IVF – claims and counter claims

One of the most common pieces of “helpful” advice you’ll hear if you are open about experiencing fertility problems is that you should consider adoption instead, “Why don’t you just adopt instead?” people will ask. They nearly always use the “just”, as if it’s some instant route to parenthood which you are wilfully ignoring. This often comes tinged with the suggestion that there is an inherent selfishness in wanting to have your own child rather than someone else’s – if you are going to need IVF to do it. You don’t hear the same people suggesting that those who can conceive without any problems and who have thee or four or five children of their own were selfish and should have considered adoption instead, but that’s another matter…

On Friday, Anthony Douglas, the chief executive of the Children and Family Court Advisory and Support Service (Cafcass), added fuel to the fire by suggesting that the growing success of IVF is responsible for the drop in potential adoptive parents, claiming that now few people will consider adoption as an option. Apparently In 1970s, there were 12,000 children were adopted in Britain every year but in 2017 there were just 4,350 adoptions. At the same time, there is a growing number of children in care.

It always strikes me as odd that when it comes to discussion about infertility and adoption, people seem to see adoption as some kind of solution for fertility problems. In fact, adoption should be about finding the best possible family for a vulnerable child rather than offering some kind of quick fix solution for a couple with fertility problems. Adoptive parents need to have a resilience and dedication to adoption that makes them very special people. Having a fertility problem doesn’t automatically give you those qualities. In response to Anthony Douglas’s suggestions, the head of one adoption charity said it seemed to be a “misunderstanding of the very essence of adoption”.

In 1978, we were in a very different place, and not just because IVF wasn’t around. For a start, there were far more newborn babies without siblings who needed adoptive families. Now it is very rare to be able to adopt a newborn, and in 2012 there were only 76 babies adopted so very few parents will be caring for an adopted child from the start of his or her life. More than three quarters of children waiting to be adopted are over 2, and they have often experienced many difficulties and challenges in their lives. More than 60% are in sibling groups so parents would not be adopting one child but two or more. Around a third of the children needing adoptive parents are from ethnic minority backgrounds.

The other huge issue around adoption is the lack of support which many adoptive parents report, and they often feel they are unprepared for the challenges adoption can bring. A survey by the charity Adoption UK last year found that more than a quarter of families reported being “in crisis” and two thirds of respondents said their child had displayed aggressive behaviour towards them. At the time, the chief executive of Adoption UK, Dr Sue Armstrong Brown, said “We’re talking about trauma-fuelled violence from children who will have witnessed the unthinkable in their early lives. Adoption is not a silver-bullet – these children’s problems don’t just disappear overnight. Children who have suffered the trauma of abuse or neglect have experienced the world being an unsafe and dangerous place. The child’s violent behaviour reveals extreme distress and a need to feel safe and protected. These children need particular parenting techniques and access to therapy to overcome early childhood trauma, and they may reject any attempts at parental affection or management of their behaviour.”

There may be some people with fertility problems who are excellent adoptive parents, but anyone with any experience of adoption will know all too well that pairing up traumatised young people with adults scarred by infertility is not a one-size-fits-all solution to either problem.