Fertility education – what do you think?

120px-Classe-merikanjakaShould we be educating pupils in school about fertility? Or would it just be worrying and confusing for young people? That was the subject up for discussion at last night’s Progress Educational Trust debate at the Royal College of Obstetricians and Gynaecologists.

The evening began with short talks from each of the speakers. Fertility specialist Dr Melanie Davies began with a neat summary of the biological facts, illustrating how fertility declines with age, how the rate of miscarriage increases and how IVF success rates follow that pattern. Infertility Network UK‘s Chief Executive Susan Seenan followed, talking about the charity’s Scottish education project which is funded by the government there. The project has exposed a lack of knowledge among students about basic fertility facts, and has shown how learning more can influence their choices going forwards. Helen Fraser, Chief Executive of the Girls’ Day School Trust sounded a note of caution about the realities for young women today, and discussed how going to University, having a career, finding the right person to have children with and a suitable home can all lead women to delay childbearing. Finally sex and relationships educator Justin Hancock who writes at bishuk.com spoke about what is wrong with today’s sex and relationships education and why all too often it doesn’t give young people the information they need.

The discussion which followed, chaired by Professor Adam Balen of the British Fertility Society was fascinating with many varied views – is it essential that everyone is properly informed about fertility or would fertility education just be placing adult problems on children? Does fertility education imply that lifestyle choices might be to blame for infertility? Is it time for a complete overhaul of the way we talk to young people about sex and relationships? The audience included a good number of young people who actively engaged in the discussion making interesting points and asking questions.

So would fertility education be a good thing? Should it be an essential part of every young person’s education to ensure they are properly informed? Or do we risk giving them yet another thing to worry about at a time when they have so much to deal with already? My own view is that we miss the point if we focus on teaching about “infertility” as what really matters here is fertility awareness – and I do believe young people should be taught about their own fertility in a way that my generation wasn’t. But what do you think? Would knowing more about your own fertility have made a difference to you?

Want to know more about egg freezing?

eggYou couldn’t fail to have heard about egg freezing, which seems to have captured media attention as the latest development in fertility treatment to be regularly hitting the headlines, but do you know all that you should?

Is egg freezing something that every young woman should be considering? Or is it just the latest money-making enterprise from the fertility sector? Should it be reserved for those who need to preserve their fertility for medical reasons rather than be freely available to young, healthy women?

If you want to know more about these issues, come along to the event organised by Progress Educational Trust on 21 October at University College London titled ‘Beating the Biological Clock: Should you Freeze your Eggs?”.  Leading experts in the field Professor Barry Fuller, Dr Francoise Shenfield, Dr Imogen Goold and Professor Maureen McNeil will all be there to debate the issues and I’ll be chairing.

If you’d like to come and join us, visit www.progress.org.uk/eggfreezing

Tripadvisor for fertility clinics?

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

Are patients getting the fertility service they deserve?

What a fascinating afternoon at the Progress Educational Trust annual conference, where a range of speakers addressed the commercialisation of the fertility industry and asked whether what happens is always in the best interest of patients.

The afternoon started with the Chief Executive of the HFEA, Peter Thompson, who tackled the cost of fertility treatment in his talk. He explained that the HFEA doesn’t have any power to regulate what clinics charge for IVF, but that their research had found that most people (and that included those working in clinics as well as patients) felt that the authority should publish the average cost of treatment at different clinics.

The next speaker was Professor Willem Ombelet who gave a fascinating talk about the Walking Egg Project which offers affordable IVF for developing countries – and possibly others too. He explained how the focus on overpopulation in many developing countries means that infertility gets overlooked, but the consequences of not being able to have children are often grave for individuals who are isolated from their societies.

He was followed by John Parsons, now retired but formerly Director of the Assisted Conception Unit at King’s College Hospital. He said that he could be frank now that he had retired, and went on to discuss the fact that the fertility industry did not have a good reputation and was often regarded as an area focused on money-making. He spoke about the many different procedures used in IVF over the years, and looked at those which were still being used today without any clear evidence that they actually work.

Dr Yacoub Khalaf, Medical Director at Guy’s Assisted Conception Unit, gave an impassioned talk about hype and hope and about the array of unproven techniques used in some fertility clinics. He explained that misinformation was one of the most difficult things for patients today, and looked at some of the questionable marketing techniques used to sell fertility treatments and other therapies. He also discussed the fact that even within the NHS there was no clarity on how much IVF should be costing, with some CCGs paying twice as much as others.

There was an interesting discussion following the session, with lots of questions from the floor. Inevitably one of the issues raised was that familiar old chestnut about patient demand, and the suggestion that clinics had to offer unproven treatments to patients because if they didn’t, the patients would vote with their feet and go to the clinics which did. Dr Khalaf answered this very well, saying that if specialists were honest and explained why they didn’t offer certain things, patients would respect that – which is absolutely true.

The final session was titled The Real Cost of Infertility, and the speaker was Professor Robert Winston, who began by talking about the impact of infertility, explaining that it haunted people’s lives on a daily basis in a way that few other illnesses do. He said he felt that all too often people were not given a proper diagnosis, but were pushed towards IVF. He talked about the huge inequalities in the cost of IVF, and about the large sums some patients are paying for each cycle. He said the HFEA should be providing better information for patients, and questioned whether we need regulation for the fertility sector.

It was a thought-provoking afternoon, and I hope that having so many of these issues out in the open will help to encourage more discussion. It’s a tough time to be a fertility patient; there’s so much information from so many sources and so much of it is contradictory. Knowing what to believe and who to trust can be difficult, but it’s important that patient demand based on misinformation isn’t used as an excuse for offering more unproven treatments.

Do genes matter?

Nature or nurture? It’s one of those eternal questions – but one which has particular importance to anyone considering donor conception. The idea of passing on our genetic heritage is part of our expectations when it comes to parenthood, and finding out that you will only be able to get pregnant if you use donor eggs or sperm involves thinking again about some of those preconceptions.  But should it? Are genes really as important as we imagine?

I went to an event last week organised by Progress Educational Trust titled Do Genes Matter? There were presentations from leading fertility lawyer Natalie Gamble, from Pride Angel’s Erika Tranfield and Professor Carol Smart, a sociologist from Manchester University who has studied donor families. For me, some of the most thought-provoking ideas came from the geneticist on the panel, Professor Anneke Lucassen, who explained just how little of who we are comes from our genes. She showed that contrary to our beliefs, the variation in our genetic make-up is miniscule and that most of what we are is down to our environment rather than our genetic heritage – so choosing an Oxbridge-educated donor won’t impact on your child’s intelligence, but the environment in which he or she grows up will do.

Could it be that the way we think about genes is actually more folk culture than scientific reality? Are we all far too worried about the importance of genetic heritage when in fact it is largely irrelevant? What do you think? Do genes matter?

National Infertility Awareness Week – Day Two

DownloadedFile-15So it’s Day Two of National Infertility Awareness Week, and on Twitter there’s been a lot of talk about the first baby born using “musical IVF”. This is a story which has been around for a while now, based apparently on some research (?) from a clinic in Spain where they have been experimenting with playing music in the laboratory which they suggest improves their success rates.

There have been some variations on this theme – the original story some months back claimed that embryos liked Metallica, now they apparently like anything from Nirvana, Michael Jackson and Madonna to Mozart.  The story was described by one leading fertility specialist as “trivial, lazy and irresponsible journalism”, and elsewhere as one of the “silliest” fertility stories.

It’s hardly surprising that fertility patients are tempted to leap on the latest bandwagon whether it’s musical or mini IVF – but the reality is that many of these stories are more about marketing than science – but it can be hard to work out which is which.  I feel there is a bit of a backlash against this kind of fertility headline hype at the moment, which can only be a good thing for anyone who needs help to conceive. If it’s something you’re interested in, Progress Educational Trust Director Sarah Norcross will be talking on this very subject at The Fertility Show on Saturday in a seminar titled ‘The science behind IVF – sorting the known knowns from the known unknowns’ – go along and hear what she has to say!

Meanwhile today there has been lots of activity around National Infertility Awareness Week, with some amazing cakes baked to raise funds for Infertility Network UK at clinics across the country. Tomorrow there will be a new support group launching in Fulham, and if you’re not in the area but are interested in finding your local group you can check out the Infertility Network UK groups here. A second winner was announced this evening in the draw to win a copy of Precious Babies (the book for anyone who has had successful fertility treatment). It’s not too late to get involved with National Infertility Awareness Week whether you’re going to enter the competition, bake a cake or join in the debate – for more ideas, see the website at www.niaw.org.uk

Hype, hope and headlines

Last night I went to a fascinating discussion organised by Progress Educational Trust and the Science Journalism Department at City University looking at the way that new developments in fertility treatment are reported in the press. The debate was initially sparked by a letter to The Times written by fertility specialists Professor Nick Macklon and Professor Siladitya Bhattacharya about the reporting of fertility-related stories in the media and the impact these can have on patients. The regular bombardment of stories of advances in fertility treatment that are allegedly going to improve success rates and transform the future can make it difficult for patients to separate hype from reality.

The discussion started with a ten-minute presentation by each of the three speakers for the evening, beginning with Simon Fishel who is managing director of CARE and who had come in for some criticism for hailing an unproven new approach as a “the most exciting breakthrough we’ve had in probably thirty years”.  Fishel made the point that any new advance would always be unproven at first and suggested that a baby was “all the proof that is needed”. He explained that waiting to have the gold standard of evidence would simply take too long for most fertility patients who needed help right away, not many years down the line.

Fishel was followed by Professor Nick Macklon from Southampton who painted a picture of the couple who had just been through unsuccessful treatment and who were facing a crisis, but were then presented with hope by a newspaper article claiming that a new breakthrough treatment could offer success when in reality this was completely unproven. He said that patients were paying the price and that journalism needed to be more discerning.

The final speaker was Dr Hannah Devlin, Science Editor at The Times, who began by explaining why human interest fertility stories had all the ingredients to “set the heart of the news editor racing”. She discussed why it was important to report on developments as they emerged, which might be well before there was the gold standard level of evidence, but admitted that ‘breakthrough’ was a word she tried to avoid. She said that the time pressures of a daily paper could make it difficult for journalists, and that sometimes the mere fact that everyone else was covering a story made it news in itself.

During the question and answer session that followed, much of the discussion focused on the idea of responsibility – the responsibility of the scientist, of the press officer, of the journalist and of the clinician. A question from Stuart Lavery of IVF Hammersmith made the point that with so much of IVF carried out in the private sector, there was often a marketing element to stories of new fertility advances.

From the patient perspective, the evening raised many issues. Yes, of course we want to be informed about any new advances, but we need news stories about these to be balanced and fair. We need them to cut through the hype and to present us with a realistic idea of how helpful this would be to us as patients today. In an industry where everyone seems happy to keep taking our money as long as there is any sliver of a chance of success, honesty has never been more important.

 

NICE try… but is anyone listening

I’ve just spent a really interesting evening at a debate organised by Progress Educational Trust where the new NICE fertility guideline was up for discussion.  Titled ‘NICE try… but is anyone listening”, the debate was chaired by Dr Allan Pacey of the British Fertility Society which had sponsored the evening.  The debate focused on the fact that the 2004 guideline has still not been fully implemented in many areas, and questioned whether commissioners were really going to take any notice of the new guidance.   The evening started with brief presenatations from the panel of speakers.

First up was Dr Yacoub Khalaf, Director of the Assisted Conception Unit at Guy’s and St Thomas’ who explained how linking fertility funding to single embryo transfer had already successfully saved money overseas, and questioned why NICE was not able to use this kind of joined-up thinking. The second speaker was commissioner Peter Taylor, a fellow member of the NICE guideline development group.  Peter explained the commissioning process following on from the previous fertility guideline in 2004, and discussed how fertility commissioning decisions had often been down to arbitrary measures outside the guidance itself.  The final speaker was Dr James Kingsland, President of the National Association of Primary Care, who talked about the new clinical commissioning groups and how it will be up to the public to challenge them if they are making decisions about fertility treatment based on rationing rather than clinical care.

The debate which followed covered a range of topics, although there was some focus on the health economic models used by the NICE team and questions as to how reliable members of the audience felt these to be.  There was also discussion about the decision not to offer IUI to those with minor fertility problems, which one member of the audience felt was a mistake.  The decision to only offer one cycle of IVF to women between 40 and 42 was felt by many to be unfair.

For me, the quote of the evening came from Professor Peter Braude who questioned the fairness of the current system and noted that when it comes to fertility our health service is far from National: he made the point that we don’t make decisions about who should be immunised on the basis of their postcode, and questioned why we should do this when it came to fertility.

I think I’d agree with Peter Taylor’s concluding thought – that the new guideline may not be perfect, but it certainly isn’t that bad.  As a former patient, I’m really delighted that there is more up-to-date guidance to be followed, and that this advice will make it possible for people to access more cost-effective treatment more quickly if the guideline is followed.