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 

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.

Pregnancy test recall

A false positive from a pregnancy test is the nightmare of anyone who has been through fertility treatment, but more than 58,000 digital pregnancy tests called Clear & Simple have been recalled after it became apparent that the test had mistakenly told some women they were pregnant when in fact they weren’t.

If you have bought a Clear & Simple test, manufactured by Guangzhou Wondfo Biotech, you should return it if it is from the potentially faulty batch. You can check the lot number on the inside and outside of the package – it is Lot Number DM10220170710E with an expert date of January 2020 which is affected.

The manufacturers stress that only a small number of problems have arisen with the tests and that they have been removed from shops already, but if you do have a test from this batch, you should return it and anyone who has had a false positive result from these tests should report it.

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.

Scream for IVF!

The patient charity Fertility Network UK has launched a new campaign today called Scream 4 IVF which aims to raise awareness of the unfairness of the postcode lottery for fertility treatment. Currently a majority of those who need fertility treatment end up paying for themselves, and local commissioners who decide how to spend NHS funds are often ignoring the guidance from NICE on this and rationing fertility treatment.

The new campaign asks you to upload yourself screaming on social media with the #Scream4IVF and link to the petition bit.ly/Scream4IVF to call for a debate in parliament on fertility funding. Of course, you also need to sign it yourself!

Please, do support this important work – if you don’t want to scream, just sign – whatever you can do will help. You can find the campaign website at https://www.scream4ivf.org

Could you help to direct the future of fertility research

If you have personal experience of fertility problems, could you help with a project which aims to discover what you really want and need from fertility research?  A group supported by the Cochrane Gynaecology and Fertility Group and the University of Oxford is bringing together people with fertility problems, healthcare professionals, and researchers to try to establish the top ten questions that they want future research projects to answer.  You can take part in this by answering some questions in a couple of short surveys that the researchers estimate will take no more than ten minutes to complete.

This is really important work as it will help ensure that future research focuses on what you want and need to know to help you to make informed choices – so do find a spare ten minutes for this if you possibly can!

There are more details and a link to the survey 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.

If you’ve had successful IVF treatment…

If you are based in or near London, you may be interested to know about a very special parents and babies group taking place on Wednesday lunchtime at the Bush Theatre as part of the amazing Fertility Fest. The Life and Lunch meeting is just for IVF parents and babies and is an opportunity to discuss candidly and confidentially, how it feels to become a parent after you’ve struggled to conceive. It is being facilitated by Saskia Boujo, Founder of My Beehive and creator of the ‘IVF and Proud’ merchandise brand; Helen Daviesauthor of More Love To Give about her story of secondary infertility; and Gabby Vautier, Co-Director of Fertility Fest and mum of IVF toddler twins.

I will also be there with five free copies of my book “Precious Babies – Pregnancy, Birth and Parenting after Infertility” to give away! Come and join us – it promises to be a fabulous session.