I don’t often put personal posts on this blog, but today I did want to say thank you to Juliet Tizzard who is leaving her role as Director of Strategy and Corporate Affairs at the regulatory body for fertility treatment, the HFEA. If you’ve been to the Fertility Show in the past, you may have seen Juliet speaking there about how the Choose a Fertility Clinic pages on the HFEA website can help if you are trying to decide where to have treatment. She’s driven some of the exciting steps forward for the HFEA such as the new website where patients can find lots of helpful information about different clinics and can give feedback after they’ve had treatment. Juliet is moving on today to the Health Research Authority where she will do a fantastic job – but she will be missed!
For anyone with fertility problems, a miscarriage can seem the most devastating double blow – and it can make Christmas feel a particularly difficult time. The Miscarriage Association is a fantastic charity offering advice and support and they have a page on their website with information about where to find support over Christmas and about a remembrance page which may be helpful at this time.
If you’ve been affected by this, do take care and use all the sources of support out there as it can really help.
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/
Since 2009, the Lister Fertility Clinic has been offering a small number of free IVF cycles each year to try to help people who are unable to access NHS-funded fertility treatment. The cycles are offered in conjunction with the charity Fertility Network UK and there are some criteria for entering into the draw for the free cycles.
You have to be a UK resident under the age of 42, with a cause for your fertility problems. Your BMI must be in the normal range and you can’t have any children from your current relationship. You can’t have been sterilised in the past and you can’t have had a free cycle at the Lister before. There are also some restrictions on the type of treatment you can have, which can’t include egg donation.
You need to send your entry to Fertility Network UK – and you can find the details here
If you’d like to join us for the Fertility Network UK online chat via Skype on Wednesday 13th December at 7pm, we will be discussing Christmas. It’s always a hard time for anyone who is experiencing fertility problems, and we’ll be talking about some strategies which can help with a Q and A session at the end.
You can find the details of how to join on the Fertility Network UK website.
Now, the online fertility magazine ivfbabble is using pineapples as part of a campaign of solidarity for those experiencing fertility problems. Their “stronger together” campaign is a brilliant idea which aims to bring people together and to make us all realise quite how common fertility problems and that we are not alone.
You can read more about the pineapple pins here – www.ivfbabble.com and you can buy the pins directly on Amazon or from ivfbabble and any profits from the sales will be donated to Fertility Network UK.
The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.
Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an example here), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future). Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.
The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en
If you have five minutes, would you be able to complete a quick survey to help with the design of a study looking at women’s long term health after fertility treatment. The purpose of this survey is to learn about your views and health concerns regarding Assisted Reproductive Technology (ART) which covers all forms of IVF/ICIS.
To date, little research has examined women’s health after fertility treatment. University College London is designing a study to monitor women’s long term health after ART and your opinion, views and concerns will help them to design and develop a study, taking into account women’s specific concerns about this topic. This survey is open to all women, whether or not they have had fertility treatment so you can share it with other people. It is anonymous and you can find it by clicking on the link – https://www.surveymonkey.co.uk/r/QY26FR7
TV presenters Hannah and Lewis Vaughan Jones have been charting their fertility journey on YouTube – if you haven’t already seen it, you can find the episodes of their IVF story starting here. If you’ve been through it yourself, you will understand how incredibly courageous it is to decide to go public with each stage of the IVF process – and as their cycle progresses, this becomes ever more apparent. Yet, it is only by telling our stories and by revealing the raw emotion that other people will begin to understand how devastating and all-consuming infertility can be.
Thanks to Hannah and to Lewis on behalf of the one in seven of the population who know exactly what it’s like. When you are already in the public eye, it is even more of a challenge to be so open about something so deeply personal and we are with them every step of the way and thank them for their courage.
If you listened to BBC reporter Sophie Sulehria’s first broadcast about her fertility journey on Radio Four, you can find all the episodes she’s put together so far here.
There’s Sophie’s own story which she tells in two episodes with her husband Jonny, along with reports on adoption and egg donation where Sophie talks to people who have experience of these other routes to parenthood. The series is due to run into the new year, so there’s more to come from Sophie and Jonny.
Do listen – it’s great to hear someone who actually understands what it’s like and who has personal experience talking about these subjects. And thanks to Sophie and Jonny for their courage in being so open about their own story – fertility is not an easy thing to talk about when you are still on the journey.