If you missed the debate organised by Progress Educational Trust on the HFEA’s plans to include some patient feedback on clinics on the website, you can catch up with the podcast here.
You can hear the HFEA’s Juliet Tizzard, Infertility Network UK’s Susan Seenan, Yacoub Khalaf director of the fertility clinic at Guy’s and St Thomas and Antonia Foster, a media litigation specialist discuss the issue in a debate chaired by Adam Balen, the chair of the British Fertility Society. It was an interesting and lively evening – and that link is at –http://www.progress.org.uk/tripadvisor
The latest figures relating to fertility treatment in the UK have been released this morning by the Human Fertilisation and Embryology Authority (HFEA) and show a growing number of cycles of IVF with a total of more than 64,000 carried out in 2013. The number of cycles of donor treatment have more than doubled in the last five years, and there has been an increase in the number of same-sex couples having treatment. Success rates have gone up very slightly, but the multiple birth rate from fertility treatment has fallen.
The majority of women having treatment are under 37, and the average age of fertility patients is 35. The report shows that over a third of fertility treatment is carried out in London and the South East – and that in 2012, 2.2% of all babies born in the UK were conceived as a result of IVF.
London’s Lister Fertility Clinic is giving away 25 free cycles of IVF in a draw. There are certain criteria for entry – you have to be under the age of 42 with a BMI between 19 and 30 for women and you must be a UK citizen. You must either have a clear cause for your fertility problem or have been trying to get pregnant for at least two years, and you can’t have any previous children from your relationship.
If you have a spare thirty seconds, could you help Infertility Network UK by answering a question – yes, just one! – about the level of emotional support you felt you got at your fertility clinic? Anyone who has attended a fertility clinic can answer the poll, so do please help if you have a moment – results can help assess how well people feel they are being supported at present. The link is here – https://healthunlocked.com/infertility-uk
TV presenter Kirstie Allsopp has made headlines again with her views on women and fertility – this time claiming that women shouldn’t see IVF as a “lifestyle choice”. Last time she spoke out about age and fertility, I agreed with her – but this time I’m not sure I do.
I honestly don’t think people do see IVF as a “lifestyle choice” – no one wants to go through IVF, no one “chooses” it. I think perhaps sometimes people assume it can help if they’ve left it later to try to have children – and that can be terribly sad if it’s only then that they discover how low IVF success rates drop once you are into your forties.
She also talks about women having to “run the risk” of pumping drugs into their bodies during IVF. Again, although no one would choose to stimulate their ovaries in this way and ovarian hyperstimulation is a potentially dangerous side-effect if not managed properly, I don’t think it’s very helpful to talk about it as running a risk. To read many newspapers today, you would believe that anyone who has had IVF is likely to develop all kinds of ghastly long-term conditions as a result of the drugs, when in fact there is no evidence of this kind of health risk.
I’m glad she’s speaking out about this and I think she’s right to encourage women to have children sooner rather than leaving it later if that’s a possibility – but I’m not sure talking about IVF as being risky, or as a lifestyle choice, is terribly helpful.
It’s every patient’s worst nightmare – the idea of some kind of mix-up in the laboratory with worrying scenarios of confusion whether eggs, embryos or sperm are being given to the right person. As the latest report from the HFEA on what are known as “adverse incidents” shows, such problems are incredibly rare with just three serious problems reported in the UK over a three-year period. There were, however, many more lower grade problems which although they may not have the potential to lead to disasters can still be very upsetting for the patients concerned.
What is perhaps really important about this report is the fact that clinics are telling the HFEA when things go wrong, as it is only by understanding how mistakes occur that they can be prevented in the future. The HFEA’s director of strategy and corporate affairs, Juliet Tizzard, has written an interesting article about this for BioNews.
If you’d like to help support the charity working for all those touched by fertility problems, there’s a new and totally effortless way to raise cash for Infertility Network UK. Be Social is a unique new campaign run by Eeva where you can help raise money with a simple click – either by following one of the clinics in the campaign on Twitter, or by liking them on Facebook.
You can find details of all the clinics on the Be Social page on the Eeva website – you just have to click on the icons next to the names to like or follow them and for each new person to do this, Eeva will donate a pound to Infertility Network UK.
The clinics taking part are Bourn Hall Clinic, Wessex Fertility, GCRM Belfast, GCRM Glasgow, Reproductive Health Group Cheshire, Birmingham Women’s Fertility Centre, The Hewitt Fertility Centre and The London Women’s Clinic Cardiff.
Please help – Infertility Network UK needs funds to be able to help you, and it won’t take more than a couple of minutes to make a real difference.
I spent the day on Wednesday at the HFEA’s annual conference where the theme for the day was putting patients at the centre of everything that the authority does. It’s a laudable aim and one that Interim Chair Sally Cheshire clearly takes very seriously. There were a series of workshops for the delegates, who were mainly representatives from UK fertiliy clinics, and many of these focused on quality of care and understanding the patient point of view. The key question is whether any of this will really make a difference to the experiences of the average patient.
When my very first book about IVF, In Pursuit of Parenthood, was published in 1998 I was invited to speak at an HFEA conference about the patient experience. I’d been shocked when I’d carried out the interviews for the book to discover the poor level of care many of my fellow patients had received from clinics, and gave a rather blistering talk about all that I felt was wrong. I hoped it would help clinics to focus more on quality of care and to think about the patient experience.
When I wrote The Complete Guide to IVF more than ten years later, things had changed but not always for the better – there was more choice for patients, but that also led to more confusion, treatment was more expensive and there were far more optional extras that patients often felt obliged to pay for in order to maximise their chances of success, yet many clinic staff were still too busy to offer the emotional support to patients that they so clearly needed.
We must hope that the HFEA’s decision to focus on quality of care is more than just another talking exercise and that things really do change for patients. There was clear resistance from some clinicians at the conference to the idea of the HFEA moving into areas which they felt went beyond the authority’s remit. Of course, there are some clinics who think very carefully about how to improve the patient experience, but if all clinics were getting it right for their patients, there would be no need for HFEA intervention. We can only hope that this really does herald a change for the better – but for now, it’s a matter of watching this space…
So, the HFEA has decided to remove the sanction put in place to ensure clinics reduce their multiple birth rate following a legal challenge from two clinics.
Up until now, the authority had been able to put a condition on the licenses of clinics which didn’t keep their multiple birth rate below the set target – but this is now to be removed.
The Independent says that limits on the number of twins and triplets have been lifted, “following warnings from fertility experts that they harmed some women’s chances of becoming pregnant”. In fact, the HFEA’s own statement on the issue explains that the decision was taken because it was not appropriate for the two IVF clinics which had taken the legal case to be treated differently from all the others – and removing the licence condition gives a level playing field. Far from agreeing that limits on the number of multiple births should be lifted, what the Authority actually says is that clinics are still expected to get their multiple birth rate down to 10% in the interests of mothers and their babies.
Fortunately, most clinics appreciate the need to reduce multiple births and are working hard to ensure that those most at risk of a multiple pregnancy only have one embryo transferred. The best fertility clinics are able to do this effectively without reducing their overall success rates because they are only too aware that multiple birth is the biggest health risk from IVF. Prospective patients should always check the multiple birth rate of any clinic they are considering – and should be aware that a high success rate accompanied by a high multiple rate is a sign of a clinic that may not have your best interests at heart.
I’ve visited a lot of clinics in the last few months and am always interested in the different ideas they have about waiting rooms and what patients want. Some are quite cold and clinical with stiff-backed chairs and nothing to look at, others are full of low sofas and potted plants, some offer magazines to read, others focus on fertility-related literature and some have a selection of fertility books. Some have soft music playing, others have a TV on all the time in the corner. It’s interesting to see how different the thoughts are about what patients want and what might be helpful.
One of my favourite waiting rooms is light and airy with an interesting view and lots of brightly coloured low sofas. It has a machine for hot drinks and a selection of fertility books to read. To me, it always feels instantly relaxing, but it benefits from being spacious and there’s a limit to what you can do when you have a very cramped space for the waiting room which a number of clinics do. Of course, in the scheme of things waiting rooms are not important when it comes to choosing somewhere to go for your fertility treatment, but I think they do say something about how much thought and effort the clinic has put into trying to create a pleasant space for you – and that thought and effort may be reflected in other areas too.
The one thing which I think is really very difficult is a clinic waiting room which shares space with an antenatal unit as there is nothing worse than having to sit opposite a woman who is pregnant when you’re waiting for a fertility appointment. Even sharing the same entrance and some facilities can be awkward.
I think my priorities would be comfortable seats, some books to look at and a space that made me feel secure and confident about confidentiality, but I’d be interested to know what you think… What makes a good fertility clinic waiting room? Are there things you’d really like that no one has thought of?