If you have had fertility treatment in the UK in the last five years, would you be willing to help identify key areas for improvement to ensure everyone receives high-quality care in the future?
The Human Fertilisation and Embryology Authority (HFEA) which regulates fertility clinics in the UK has launched a national fertility patient survey and your views are vital to help the Authority understand experiences of treatment. The survey is being run by YouGov, and the more people that take part, the clearer the views and the greater the impact.
This is an excellent opportunity to help other people going through fertility treatment by giving the information and opinions the HFEA needs to help ensure these are taken into consideration in the future. The survey takes about 15 minutes to complete, and the link is here.
The patient charity Fertility Network UK has launched a new campaign today called Scream 4 IVF which aims to raise awareness of the unfairness of the postcode lottery for fertility treatment. Currently a majority of those who need fertility treatment end up paying for themselves, and local commissioners who decide how to spend NHS funds are often ignoring the guidance from NICE on this and rationing fertility treatment.
The new campaign asks you to upload yourself screaming on social media with the #Scream4IVF and link to the petition bit.ly/Scream4IVF to call for a debate in parliament on fertility funding. Of course, you also need to sign it yourself!
Please, do support this important work – if you don’t want to scream, just sign – whatever you can do will help. You can find the campaign website at https://www.scream4ivf.org
If you have personal experience of fertility problems, could you help with a project which aims to discover what you really want and need from fertility research? A group supported by the Cochrane Gynaecology and Fertility Group and the University of Oxford is bringing together people with fertility problems, healthcare professionals, and researchers to try to establish the top ten questions that they want future research projects to answer. You can take part in this by answering some questions in a couple of short surveys that the researchers estimate will take no more than ten minutes to complete.
This is really important work as it will help ensure that future research focuses on what you want and need to know to help you to make informed choices – so do find a spare ten minutes for this if you possibly can!
There are more details and a link to the survey here
When you’re thinking about having IVF and looking at different clinics, the logical place to start is clinic websites – but it is increasingly apparent that when it comes to the cost of a cycle of treatment, that might not be as helpful as it should be. The headline prices for IVF on clinic websites have always been lower than the price patients pay as they rarely include the drugs used during a treatment cycle which adds considerably to the bill. Recently, however, I’ve spoken to a number of patients who have paid up to twice as much as the price their clinic websites have suggested a cycle costs. That’s not because they’ve chosen to have lots of additional optional treatments, but rather because the clinic website cost doesn’t include lots of things that make up part of a normal treatment cycle, such as scans, blood tests, appointments with a consultant or sedation during egg collection.
If you are having treatment here in the UK, your clinic has to give you an individualised fully costed treatment plan before you start your cycle and this should include an estimate of everything you will have to pay. If you are having treatment overseas, there is no such requirement and additional costs can be an issue. When considering a clinic, the important question is what the clinic thinks you are likely to pay in total for your cycle rather than what the website suggests could be the cost of treatment.
If you are based in or near London, you may be interested to know about a very special parents and babies group taking place on Wednesday lunchtime at the Bush Theatre as part of the amazing Fertility Fest. The Life and Lunch meeting is just for IVF parents and babies and is an opportunity to discuss candidly and confidentially, how it feels to become a parent after you’ve struggled to conceive. It is being facilitated by Saskia Boujo, Founder of My Beehive and creator of the ‘IVF and Proud’ merchandise brand; Helen Davies, author of More Love To Give about her story of secondary infertility; and Gabby Vautier, Co-Director of Fertility Fest and mum of IVF toddler twins.
If you are considering going abroad for fertility treatment, you may be interested in this article I wrote for a supplement for The Times earlier this week.
For many people, going overseas can be a cheaper option, and many return with positive stories about their experiences, but you do need to be aware of the facts and understand the differences you may find if you choose to have treatment outside the UK.
There are some great clinics across the globe, but there are also some that are not quite so great and you don’t have the protection that you have here in the UK of knowing that all clinics offering IVF are licensed and regularly inspected by the Human Fertilisation and Embryology Authority. As you don’t have that luxury with clinics elsewhere, you do need to make sure you do your homework and research as much as you can about the clinic and the country to ensure that you are left feeling that you did the right thing in choosing to travel for treatment.
For anyone with any experience at all of fertility problems, there’s a general understanding that probably the worst thing someone can say to you is “just relax…”, and yet this is the advice a TV doctor gave on ITV’s Lorraine programme. Dr Hilary Jones apparently said to a caller who was asking for advice after three unsuccessful rounds of IVF; “What I would say is, and this is probably the hardest thing to do, is just relax about it. There have been so many people that I’ve known who’ve gone through several rounds of IVF and nothing happens. And when they’ve given up, and gotten on with their lives, it miraculously happens naturally… Sometimes stress itself can have a very negative effect. So try living your life as normally as you can.”
I suppose this just shows why you should stick to asking fertility specialists for advice rather than a TV doctor, but there has been an understandable backlash from fertility patients and the charity Fertility Network UK. There is certainly a lesson to be learned for TV producers about the risks of getting a GP, who is by nature a generalist rather than a specialist, to offer advice to those who have already been treated by experts in any field of medicine. But should any doctor, even if they are a GP rather than a specialist, be telling people to “just relax” or suggesting that stress might be to blame for infertility? Apart from anything else, we all know that fertility problems cause huge amounts of stress – and that telling someone who is trying to conceive to “just relax” is about as helpful as telling them to get a dog, go on holiday or any of the other helpful advice that non-experts in the field like to pass on.
There is another problem here though, and that’s to do with blame. Suggesting that your stress levels might be responsible for your blocked fallopian tubes or endometriosis is nonsense, and yet many people do end up feeling that it’s their fault they can’t conceive in a culture which encourages you to believe that you can make the difference to outcomes by thinking positive, clean eating or complementary therapies. The truth is that none of these things are going to unblock your tubes or get rid of endometriosis, and for a medical professional to suggest that getting pregnant might miraculously happen naturally if you just relax is quite bizarre.
I’m going to be running a new fertility group for Fertility Network in Greenwich in South East London which you are welcome to join! We are having our first meeting on the evening of Tuesday March 27. It will be great to see you if you are able to come along!
I first went to a group when I was going through IVF myself and found it hugely helpful to meet other people who understood how we felt. I was a bit uncertain about going along – I didn’t think I was the sort of person who went to group meetings – but in fact it wasn’t gloomy or depressing or any of the other things I’d expected. If anything, it was actually quite uplifting to be in a room full of people who weren’t going to stat asking questions about when we were going to have a baby and why we were leaving it so late…
I’ve run a number of different fertility groups over the years since then and have seen at first hand the benefits they can bring. So why not come along and join us and find out for yourselves…
You can join our brand new Facebook page to find out more or you can get in touch via the contact page here – and hope to see you on the 27th.
I’ve just been reading about an overseas clinic which claims an IVF success rate of more than 90% per IVF cycle started, including frozen embryo transfers. I could understand why this would seem an incredibly attractive prospect to anyone who needs fertility treatment – not only is IVF cheaper than it would be in the UK, it also appears to be far more successful. But is it? Does any clinic really have a success rate of 90%?
One of the main differences for the apparent discrepancies between outcomes at clinics here in the UK and the rates some overseas clinics claim is the way that they are presented. Here in the UK, you can check validated IVF outcomes on the HFEA website. These are accurate figures for live births over a set period. Some of the amazing rates you see on overseas clinic websites are not for live births but for positive pregnancy tests, and as we know that one in four pregnancies ends in miscarriage, it is not surprising that live birth rates are always lower than pregnancy rates.
The figures you get from the HFEA will also show you the outcomes for women of different ages. Birth rates after IVF in the UK range from 2% to 33% depending on the woman’s age. The HFEA figures show you outcomes over a set period – a specific year, or a three-year period. If you are running a clinic elsewhere and happen to have a month where you have very good outcomes and lots of women get pregnant, followed by a month where no one does, what’s stopping you from using your good month as your “success rate”? So a success rate may be for a short period, for younger women and it may be pregnancy rather than live birth – and all of these things make a huge difference. What’s more, sometimes the figures are simply wrong. I’ve read some crazy claims for totally impossible success rates, particularly for older women using their own eggs. The truth is that IVF is less successful as we get older, and miscarriage presents a greater risk.
Many overseas clinics offer very good fertility services, but if you are thinking about treatment abroad do be careful about hyped figures and unrealistic claims about outcomes. Know what is likely and what is possible, and be wary of clinic websites claiming successes which are totally out of kilter with anything you’ve ever seen elsewhere, especially for successes for older women using their own eggs, as this may suggest a clinic which is prepared to be somewhat economical with the truth.
New research has found huge discrepancies in the prices people are charged for IVF and for many extras such as blood tests or drugs as reported here in the Times. It can be difficult if you need treatment as you don’t always feel you have time to shop around – but this shows that it is at least worth making a few calls to see whether anywhere closer to you may offer treatment at a lower price. If you do this though, you do need to make sure that the price isn’t lower because not everything is included in the cost you are being given or because the treatment is not the same. It is also important to be aware that the headline costs on clinic websites often have little to do with the real costs that you will end up paying as a patient.
It’s not just the treatment itself where costs can differ but also the prices paid for any additional treatments which some patients are now considering. When I was looked into this, I was surprised at how big the differences were in the charges for add ons. For example, some clinics were including embryo glue in the cost of an IVF cycle whilst others were charging for it and the costs ranged from £75 to £350. It was a similar picture with endometrial scratch, which you might be able to get free at some clinics across the country by taking part in a clinical trial or which could cost you up to £450. I looked at a small sample of clinics and even in those, found these wide price discrepancies but it does show that it is worth at the very least asking why your clinic is charging what it does if it is much more than others.
Finally, don’t forget that the cost is one part of the equation. If you are having to travel a long distance to the clinic – or if it is overseas – this in itself adds costs both financial and in terms of stress. You will also want to check out the clinic details on the HFEA website to see the latest outcomes from treatment and to see how it is ranked by inspectors and other patients. There is a section in the patient ratings about cost which is particularly relevant as it shows whether people ended up paying more than they expected for treatment at that particular clinic so make sure you have at least considered these things before committing yourself.