When IVF doesn’t work…

You may have heard in the news recently about the latest statistics on IVF success for women in their forties, and seen that Sally Cheshire, Chair of the fertility regulator the Human Fertilisation and Embryology Authority (HFEA), has spoken out about the need for fertility clinics to be more honest and open with patients about their chances of IVF success.

The latest figures show that the number of women in their forties having IVF has doubled since 2004, but only 75 women aged 42 and 43 will get pregnant using their own eggs, and once you reach the age of 44, just two women a year are successful. To put that into context, approaching 11,000 women who were over 40 had IVF in 2017.

Some clinicians say that women are entering into IVF with their eyes open, well aware of the chances of a successful outcome, but you don’t have to talk to many women who have had IVF to know that is often far from the case. When you are longing for a baby, you tend to hear the positives rather than the negatives, and when there’s a 5% chance of success, it’s the 5% you focus on rather than the 95% chance of your treatment not working.

It is difficult as sometimes women feel that although they may be 44 or 45 and know it is unlikely that treatment will work, they still want some kind of closure and need to know they’ve done everything they possibly could.

Sally Cheshire talks in her interview about being approached by clinics at the Fertility Show in Manchester and being given unrealistic suggestions of her chances of having successful IVF treatment. It is vital for clinics to be honest about this – and it doesn’t take much searching to find clinics publishing clinical pregnancy rates for women in their mid-forties which many will see as their chance of having a baby – when in fact, miscarriage rates are high for women of this age and these clinics know only too well that the live birth rate is very different from the clinical pregnancy rate.

You can read more about Sally Cheshire’s interview with the Telegraph 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

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 

Thank you Fertility Fest!

I have spent the past few days at Fertility Fest at the Bush Theatre in London, and wanted to thank Jessica Hepburn and Gabby Vautier for organising such a wonderful and inspiring event. It was a unique opportunity for people affected by fertility problems and treatment, for those working in the fertility sector, for those who have families not created in the traditional way, for academics and for the general public to come together and to learn and be inspired. It was absolutely fabulous!

I met amazing artists and so many inspiring and interesting people doing all kinds of different work to help and support others in different ways. It was a real honour to be involved. A special thank you to the lovely Saskia Boujo and everyone I shared a panel with – artist Gina Glover, Dr Kay Elder, Sally Cheshire, Dr Roy FarquharsonMaria Da Luz Ghoumrassi, Dr Shantel Ehrenberg, Barbara Scott, Jane Denton, Anna Furse, Nina Klaff, Drunken Sailor Theatre Company, Victoria Macdonald, Foz Foster, Tabitha Moses, Professor Lesley Regan, Professor Simon Fishel, Yvonne John, Sue Macmillan, Carmel Dennehy, Tracey Sainsbury, Fiona Duffelen – to Paula Knight who was unable to be with us but sent a video – and of course, to those wonderful women Jessica and Gabby who have created something really very special!

New report from the HFEA

The HFEA has  launched its first-ever “state of the sector” report yesterday, providing an overview fertility treatment in the UK, including the success in reducing multiple birth rates to just over 10% of all IVF births.

The report, which brings together previously separate reports on incidents, inspection findings and patient feedback, records how fertility clinics and research laboratories performed in the financial year 2016-17 across a range of criteria. It is designed to give both clinics and patients a rounded view of the health of the UK’s fertility sector.

It shows that through working with the UK’s licensed clinics, the HFEA has reduced the national multiple birth rate from 24% in 2009 to 11% today, a fantastic achievement which has increased the safety of IVF for mothers and their babies and reduced the burden on NHS ante- and neonatal services. This has come without a reduction in birth or pregnancy rates, with the latter rising from 24% in 2008 to 32% today.

The report also shows that in 2016-17 there were 132 treatment and research clinics working under licence in this country, of which 34% are privately run, 29% are in public/private partnership, and 22% are NHS only (the remaining 15% are research only). During that same year the HFEA carried out 81 inspections as part of its yearly inspection cycle.

There is also specific focus on how patients experience treatment, and the new ways being developed to receive patient feedback and pass it on to clinics. A new star rating system has recently been launched on the HFEA website, giving patients the chance to rate their clinic directly and which has already been used over 700 times.

Sally Cheshire CBE, Chair of the HFEA welcomed this new report as a sign of open and healthy governance, and a continuing commitment to improving patient care:

“This report shows the full range of work, undertaken by both us and clinics, that lies behind the more than 76,000 treatment cycles performed in the UK each year, and outlines the importance of us working together to ensure patients, donors and the donor-conceived get the highest possible quality care.

“It is particularly pleasing to see that the multiple births rate has fallen consistently across the vast majority of the sector and is now very close to the 10% target we set for clinics some years ago, without a reduction in births. And it is heartening to be able to discuss with clinics real examples of patient experiences. It’s so important that patients have a voice, and I hope that the UK’s clinics will listen to what is being said.”

The report also details non-compliances, including adverse incidents, and areas for improvement. In many ways, there has been good progress, with fewer than 10 instances of non-compliance identified by inspectors in 14 main areas of the Code of Practice across all clinics in 2016-17. And of the 299 reported non-compliances overall (a slight rise from the previous year), almost all were resolved within the deadline set. This shows a sector that is open to constructive feedback and continuous improvement.

However, performance wasn’t all positive and the report reveals some areas for concern. The number of reported incidents increased from 497 in 2015 to 540 in 2016. Of these, 325 were categorised as ‘grade C’, 176 were classed as ‘grade B’, with one ‘grade A’ incident – the most severe.

Sally Cheshire CBE urged clinics to consider the impact incidents have on patients, and ensure Britain’s IVF sector maintains the highest standards:

“While the number of incidents and non-compliances must be placed in the context of the many thousands of treatments being performed in the UK each year, the fact is that all incidents, whatever the category, can be very upsetting for patients and must be avoided wherever possible. Non-compliances risk undermining the hard-won reputation for quality and rigour that the UK’s fertility sector has established over the last 25 years.

“In line with our commitment to open, frank and constructive regulation, we will continue to work with all our licensed clinics so that they strive to continually improve and maximise the chances of success for patients seeking their much longed-for families.”

The full report can be read on the HFEA website: https://www.hfea.gov.uk/

Fertility milestones

In support of National Fertility Awareness Week, the HFEA or Human Fertilisation and Embryology Authority which regulates the fertility sector, has published data which reveals some new milestones for UK fertility treatment.

More than 300,000 children in total have now been born in the UK from licensed fertility treatment since 1991. Fertility treatment has grown markedly since 2010, with almost a third of all IVF and DI babies since 1991 arriving in the last six recorded years (2010 to 2015).

The total number of treatment cycles carried out in UK clinics also passed a significant milestone in 2015, breaking through the million barrier. The overall number of treatments carried out since 1991 is 1,034,601.

The new data – drawn from The HFEA Register, the oldest and largest fertility database in the world – also reveals that fertility services are used mainly by younger women. The average age of women having fertility treatment is 35 years, which has remained largely static over recent years.

Treatments involving women aged 18-34 remain the largest single group, accounting for 43% of all treatments, while treatments for women aged 40 and over account for just 20% of all treatments with very few treatments being provided to women over 45.

Looking at the different regions in the UK, the data shows that most treatments continue to take place in London and the South East of England, accounting for 42% of all cycles. However, there is a strong representation of large northern clinics in the figures, with the North West now providing more treatments per clinic than any other region, including London. Total clinic numbers vary according to region, ranging from three in Northern Ireland to 22 in London.

HFEA Chair Sally Cheshire CBE welcomed this new data as a sign of a thriving and successful fertility sector: “The figures we have released today show that the UK’s fertility sector continues to be one of the most vibrant and successful in the world. Families using assisted reproduction services across the UK are better served than ever before, and we will continue to encourage all who work in the sector to offer the highest quality support for patients who are both successful and unsuccessful.”

Susan Seenan, chief executive of patient charity Fertility Network UK said “We welcome the publication during National Fertility Awareness Week of the new IVF milestones from the HFEA. The extraordinary growth of IVF in the last six years shows the pressing need for practical and emotional support and advice for the many people facing fertility issues. It is also significant to note that this data underlines that fertility services are used mainly by younger women – aged under 35 – who will have been trying for a baby for at least two years and often more. National Fertility Awareness Week is about challenging perceptions and we hope this helps to dispel any misconceptions about IVF and female age.”

Latest report on clinic incidents

4cell_embryo.tifThe fertility regulator, the Human Fertilisation and Embryology Authority, has just published its report on the number of incidents in fertility clinics. These incidents can be all kinds of things going wrong in a clinic from a patient suffering from hyperstimulation to a letter sent to the wrong person by mistake.

Incidents in fertility clinics are rare – they occur in less than one percent of the treatments performed in the UK fertility clinics – but each incident is one too many.

The HFEA’s annual report on fertility clinic incidents shows that the total number of incidents increased slightly but for the first time since the HFEA began publishing incidents reports, there were no A grade (the most serious) incidents reported at all.

HFEA Chair Sally Cheshire called on fertility clinics to substantially reduce the rate of incidents next year. She said “The UK’s fertility sector is one of the most developed in the world, and the high level of professionalism in the sector is highlighted by both the fact that fewer than 600 incidents were reported out of more than 72,000 treatments, and that no ‘grade A’ incidents were reported in the last year. We want to ensure clinics give patients the best possible treatment, so that they have the best chances of having the families they so dearly want. So, while incidents are already occurring infrequently, we want to see them reduce even further. I’m setting the challenge to all clinics in the UK to make sure that the overall number of incidents has decreased by this time next year. It’s not only ‘grade A’ incidents that can have an adverse effect on patients. All incidents, whether it’s a letter sent to the wrong address, or a case of ovarian hyper-stimulation, can have serious consequences for patients, and more has got to be done to make sure that fewer people are affected in the future.”

The report can be found here: www.hfea.gov.uk/9449.html.

Fertility Fest – when art meets science

images-6It will be the first event of its kind in the UK taking place in London and Birmingham, and it’s called Fertility Fest. The event, devised by writer Jessica Hepburn and producer Gabby Vautier, will bring together some of the country’s leading writers, visual artists, theatre-makers, film-directors and composers alongside some of the country’s foremost fertility experts for a day of performance, discussion and debate. Topics under the artistic microscope include facing the diagnosis of infertility, IVF, donation, surrogacy, the male experience, egg freezing, involuntary childlessness and alternative routes to parenthood.The full day of events concludes with a performance of a new play from award-winning writer Gareth Farr called The Quiet House about one couple’s journey when they enter the world of IVF.

Fertility Fest is in London on Saturday June 11 at the Park Theatre in Finsbury Park and in Birmingham on Saturday May 28 at Birmingham Repertory Theatre. The artists involved in the days include Aaron Deemer, Amanda Gore, Amy Rosenthal, Fergus Davidson, Fiona Duffelen, Gabby Vautier, Gareth Farr, Jessica Hepburn, Jo Ind, Jody Day, Julia Copus, Jude Christian, Kazuko Hohki, Katie Barlow, Louise Ann Wilson, Matthew Dunster, Paula Knight, Peter Guttridge, Stander Chohan, Ronke Adekoluejo, Sarah Esdaile, Somalia Seaton, Steve Ball, Tabitha Moses, Tina Reid-Persin and Yann Seznec. The experts in the field joining them for the day will include Professor Allan, Pacey, Professor Geeta Nargund, Laura Witjens, Professor Jacky Boivin, Janine Elson, Juliet Tizzard, Kate Brian, Natalie Silverman, Sally Cheshire, Dr Sofia Gameiro, Dr Sue Avery, Professor Susan Bewley, Professor Susan Golombok, Tracey Sainsbury and Victoria MacDonald.

Tickets cost £25 a day which include all workshops, talks and a performance of The Quiet House – for more details and booking, visit the website www.fertilityfest.com

Report on incidents in fertility clinics

images-6If you’re having treatment at a fertility clinic, you may be interested in a new report from the Human Fertilisation and Embryology Authority which looks at the number of incidents or mistakes that happen in the UK’s fertility clinics. It may sound alarming, but sometimes things don’t go exactly to plan and encouraging clinics to report to the HFEA when this happens can help them to prevent problems occurring in the future and to share experiences so that others can learn from what has happened too.

The new report shows that the number of incidents at fertility clinics is going down, and that they occur in less than one percent of treatment cycles.  However, that does mean a total of 465 occasions when something went wrong, and it can be distressing if this happens to you. Only two of these were in the most serious grade A category, and the largest group were in category C, the lowest grade, which might sometimes mean an administrative error, for example a patient being sent a letter meant for someone else.

The HFEA Chair Sally Cheshire urged clinics to use the practical help available from the HFEA to that we can offer to do more to improve patient care: “Whilst every incident that takes place is one too many, I particularly want clinics to concentrate on reducing their grade B and C incidents. Such mistakes are often distressing to patients, largely avoidable and frankly shouldn’t happen. The small reduction in incidents is a step in the right direction but more can and must be done by clinics, and we can help. Since our last report, we have worked with clinics to improve their systems and practices. For example, where clinics are struggling to recognise what changes need to be made to avoid future incidents, our clinical governance team offers bespoke incident training to individual centres. It is for clinics now to step up and make the necessary changes so that everyone affected by assisted reproduction receives the best possible care. I want to see these improvements realised by the time of our next annual report.”

You can download the report itself here