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.’

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.

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!

Scream4IVF

I am sure you will all be aware of Fertility Network UK’s Scream4IVF campaign, aimed at ending the postcode lottery for IVF treatment. If you haven’t signed the petition yet which calls for a parliamentary debate on the subject you can do so here. The charity has been asking people to donate their scream on social media to give a voice to people with fertility problems and allow their frustrations to be aired. The screams will be collated to form the world’s longest scream for IVF to be played at a rally outside Westminster. The charity is encouraging people to join them at at the rally which takes place at Richmond Terrace at Westminster on October 10th from 5pm to 7pm.

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.

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.