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Tell IVF Patients The Whole Truth - They Can Handle It

09/12/2016 16:30 GMT | Updated 10/12/2017 10:12 GMT

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I had a long chat this morning with Jessica Hepburn, fertility writer and campaigner, who has written in the Guardian recently about the true cost of IVF. We agreed that whichever side of the fence you sit on when it comes to fertility treatment add-ons, one good thing that's come out of last week's controversial Panorama programme, Inside Britain's Fertility Business, is that it has sparked an open debate about the UK's fertility industry.

'Add-ons' is the term given to extras that couples can opt to have - and pay for, of course - in addition to their IVF or ICSI treatment. Things like endometrial scratch, intralipids, and PGS (pre-implantation genetic screening), some of which add hundreds and or indeed thousands of pounds to the typical cost of £5,000 for a private IVF cycle.

The Panorama documentary argues that these add-ons have not been researched to randomised controlled trial standard and do not therefore have a sufficient evidence base. Some senior figures in the fertility world like Professor Robert Winston think that this means these treatments should not be offered to patients at all until that evidence base is in place. I'm sitting on the fence on that score. I think it's perfectly possible that some of these add-ons may, further down the line, prove to have real substance to them and they may make a difference when offered to the right patients.

I am absolutely clear, though, that the point the programme made about true, informed consent was spot on. It is absolutely unacceptable for patients not to have all the facts spelled out to them in a detailed conversation with their doctors. If a treatment is experimental then say so. Tell them how many patients have had it and what the outcome was and tell them that the research is not yet completed. Tell them, 'we don't know for sure yet that this will make a difference - it may not.' Fertility patients can handle being told that. The problem is that all too often doctors are not willing to say, 'I don't know.' I believe that the vast majority of fertility specialists want the best for their patients and they truly do want them to achieve their dream of having a baby. But they have to tell patients the whole story about add-ons, warts and all. Many patients would still choose to go ahead - witness the woman in the programme who said she might have cut off her right arm if she had been told it would help her to have a baby.

I agree wholeheartedly with Emma Cannon, who said in her recent article that many fertility clinics are guilty of not giving couples the most basic information about how to improve their chances of conceiving naturally or improve their chances of success at IVF. That absolutely resonates with my experience - many patients are still not told how important their diet is to their reproductive health, which is a ridiculous state of affairs. How could it not have an impact?! Some doctors have been quick in the past to cast aspersions on the effectiveness of complementary treatments like acupuncture and yet their own houses are not in order.

Some patients are voting with their feet. More and more patients are becoming 'fertility tourists' and electing to have their IVF treatment abroad. Internet support forums abound with women discussing their experiences of treatment outside the UK. Caroline Phillips has worked as an embryologist and now runs the patient advice website Fertility Clinics Abroad. Phillips says that couples are discovering that treatment abroad can cost thousands of pounds less than in the UK, and is often cheaper even when taking travel costs into account. Only a few short years ago travelling abroad for IVF was considered to be an extreme measure but it's certainly something that we are noticing more patients are prepared to do. Phillips says that once people realise that many clinics overseas are run to European Society of Human Reproduction and Embryology (ESHRE) standards with well trained staff and state of the art equipment - and that their success rates are good - they make the decision to travel.

Dr Adam Balen, Chair of the British Fertility Society, has today published a detailed response to the Panorama programme that I would encourage all patients who might be about to embark on IVF treatment, with or without add-ons, to read.

Jessica Hepburn spent over £70,000 on eleven cycles of IVF. As she now says:

Reproductive science is big business and ... much of it seems to be avoiding the ethical microscope. It's complicated. It's messy. And it's a subject shrouded in judgment and taboo. But even if you think it doesn't affect you, it does, because this is how the human race is now being made.

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