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.’

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!

Natural killers or your body’s peacemakers?

Most people having fertility treatment are keen to absolutely anything they can to try to boost their chances of success, and sometimes that can mean paying for additional treatments as well as their IVF or ICSI which they hope can increase the likelihood that they will get pregnant. The problem with many of these treatments is that there is not yet sufficient evidence to be able to say that they will do what they claim to do, but fertility patients sometimes decide to have them anyway.

One treatment offered by some clinics is related to the level of natural killer (NK) cells in a woman’s body – the very name suggests that having a lot of these must inevitably be a bad thing. If you are considering having your NK cells tested as part of your fertility treatment, you may be interested in reading this article which explains the growing understanding that at least some of a woman’s natural killer cells act as peacekeepers, preventing other immune cells from attacking the fetus. They also produce chemicals which promote the growth of the baby and blood vessel connections.

You can read more about all fertility treatment add-ons on the HFEA website, where each of the different treatments has been ranked according to the latest scientific evidence and given a traffic light grading.

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.

The Long Road to Baby

Hearing other people’s stories can be so helpful – and heart-warming – when you are trying unsuccessfully to conceive, so thanks are due to the BBC’s Sophie Sulehria and her partner Johnny for charting their fertility story in a BBC Radio 4 podcast. Titled The Long Road to Baby, it bills itself as post-IVF exploration into the alternative ways to become parents. The ten episodes cover a range of topics including unsuccessful IVF, donor treatment, adoption, fostering and living without children.

Sophie has become a leading voice in the fertility world, and her willingness to speak openly about her own experiences has been hugely helpful to so many people struggling with their own fertility issues. Knowing that this can – and does – happen to anyone, including people in the public eye, makes all the difference to those who are feeling isolated and alone.

If you haven’t already, have a listen to the Long Road to Baby – it comes highly recommended!

You are not alone

One of the most difficult things about living with fertility problems is the loneliness and isolation you can feel as everyone around you seems to be getting pregnant effortlessly. If you don’t tell other people what you are going through, you get questions about when you are going to have children and warnings that you don’t want to leave it too late. If you do tell people, you can end up with lots of advice you could do without (“why don’t you just relax/get a dog/go on holiday…”).

Last night, I facilitated a fertility group for the charity Fertility Network UK in South East London and it really struck me, as it does every time we meet, how beneficial it can be to spend some time with other people who really understand how you are feeling and who know what it is like. Fertility Network has groups meeting across the UK, mainly run by volunteers like me, which offer a haven for anyone experiencing fertility problems. It’s a unique opportunity to be with people who share similar experiences and to be able to talk openly and honestly about how you are feeling.

It’s National Fertility Week and there’s lots of work going on to raise awareness about many important fertility-related issues, but one of the most important messages for me is that you don’t need to go through this alone. There are opportunities to meet other people who can offer support, and the groups aren’t miserable or depressing, but rather an opportunity to help yourself to feel less lonely. There are 3.5 million people living with fertility problems in the UK and meeting some of the others may be just what you need.

Royal pregnancy announcement

Pregnancy announcements are never easy when you’re trying to conceive, but one which has swamped the media and is this morning taking up endless pages of many newspapers is particularly difficult to avoid. What makes this announcement even more challenging is that the Royal couple were only married a matter of months ago, and seem to have conceived with effortless ease.

It was unfortunate that the announcement came during Baby Loss Awareness Week, on a day when many people were preparing to light candles for the Wave of Light in memory of their own losses. Although the couple have been criticised online for this, the most likely reason is that they simply didn’t know the significance of the day.

The endless discussions about the Royal pregnancy are going to go on – and on, and on – during the next few months. One of the best ways of dealing with that is to spend time with other people who understand how you feel about this because they share similar experiences. Why not try one of Fertility Network UK’s fertility groups which run across the UK? They’re an ideal opportunity to meet others and can be really empowering. I admit I am biased about this as I run the group in South East London, but that’s because I know how much it can help. Being with other people who understand, and who share your conflicted feelings about pregnancy announcements can make all the difference. It can help you to realise that you are not having a personality change and becoming an unkind person, but are reacting in a perfectly normal way to an emotional challenge. You can find details of all FNUK’s groups here, and it there isn’t a group near you, they can offer other support too – have a look at their website

Rally for fair fertility funding

It was great to be able to attend the rally at Westminster this evening organised by Fertility Network UK as part of their Scream4IVF campaign to try to push for fair funding for IVF based on the NICE guidelines, which conclude that it is both clinically effective and cost-effective to offer three full cycles of treatment to eligible women who are under the age of 40.

There were a range of excellent speakers at the rally including Fertility Network UK’s Chief Executive, Aileen Feeney, and London Organiser, Anya Sizer. They were joined by Paula Sherriff MP, Steve McCabe MP and author and Director of Fertility Fest Jessica Hepburn as well as Damion Sizer giving a male point of view and the brilliant Hope Sizer talking from the perspective of someone conceived by IVF.

It was an inspiring rally, and ended with some of the recorded screams (which were very loud!) and an opportunity to Scream for IVF ourselves. If you haven’t already signed the campaign petition to get a parliamentary debate on IVF, it’s not too late – you can find it here 

World Mental Health Day, and why it matters to fertility patients

Today is World Mental Health day, and a good time to think about the mental health impact on fertility problems, tests and treatment. All too often, there’s an attitude from those with no experience of infertility that it isn’t a really serious problem, and yet anyone who has been through this themselves will be only too aware of the way it can impact on your health.

A survey for the patient charity Fertility Network UK and Middlesex University found that respondents reported feeling sad, frustrated, fearful and worried, out of control and helpless most of the time. They often felt stressed, tearful, inadequate, angry, isolated, despairing, depressed, guilty or shamed and experienced low confidence and concentration and a loss of sex driven. They also felt unsupported. Even more alarmingly, 42% of respondents said that they had experienced suicidal feelings.

If you are going through treatment and are finding it tough, there is help and support out there. The patient charity Fertility Network UK offers free group meetings around the country where meeting with other people going through similar experiences can be hugely helpful, and have a support line and online forum too. The British Infertility Counselling Association has a host of specialist counsellors ready to help with emotional support, and you can also talk to your GP if you are feeling in need of counselling. Don’t suffer alone.