Are you affected by IVF cuts?

You may have seen the article in today’s Guardian about the cuts to fertility services across the UK in a bid to save money, and in particular the proposal from Bristol, North Somerset and South Gloucestershire to restrict fertility treatment  to women aged 30-35. If you are affected by this and might be willing to talk to BBC radio about it, could you contact Alice on 0161 335 7502.

 

The US fertility lottery

A fertility clinic in the US has recently held a lottery offering a number of free cycles of IVF – which was a good PR exercise for the clinic itself. I’ve just been reading an article about this and was surprised to discover that the “free” cycle didn’t actually include the cost of any drugs (which, as anyone who has been through treatment will know, are extremely pricey). Nor did it include any additional treatments such as PGD or sperm freezing should they be needed. Entrants also had to be under the age of 43.

The lottery was drawn live on Facebook, 30 winners from the 500 or so entrants which seems a small number given what was on offer. But perhaps not, as they also had to agree to forfeit their right to anonymity as the names and locations of winners would be announced during the live draw.

This was carried out for the US National Infertility Awareness Week and whilst the sentiments may appear honourable, the idea of winners having to agree to let the world know about their fertility problems is something I struggle with – as is the concept of a prize which involves spending hundreds of pounds…

In praise of fertility nurses

Today is International Nurses’ Day, so I thought I’d dedicate this post to fertility nurses. When people think about different fertility clinics, there’s always a focus on the consultants when in fact although they are in charge of a patient’s care, they may do very little of the day-to-day care during a cycle of treatment. It’s often the consultants who attract patients to one clinic or another, and yet it may be the nurses who can make a real difference to how you feel during your fertility treatment.

Different clinics have different ways of working, but nurses may carry out scans and check bloods as well as doing much of the more practical dealing with fertility patients. More often than not, a fertility nurse will teach you how to do your injections, will talk to you about how you are feeling, will be there at the end of the phone as a first port of call for your questions or queries. It’s also the fertility nurses who may notice when you are finding it hard to cope and who may suggest a session with the clinic counsellor.

So today, let’s say thank you to the fertility nurses who do so much to help fertility patients but take so little of the credit…

“Twins” born years apart…

Every so often there’s an article like this one in today’s Guardian, about “twins” born years apart… The writer of this piece has a son and daughter born as a result of one fresh IVF cycle and a further frozen embryo transfer from the same batch of embryos.

It is a fortunate, yet far from uncommon, experience after fertility treatment, but it doesn’t make the children “twins”. Twins are two babies who are carried together and born at the same time, which these children were not. They are siblings rather than twins.

The Guardian seem to specialise in this myth – here are some previous twins who were born five years apart, although at least that time they called them “twins” in the headline…  Those were also covered by the Telegraph. And unsurprisingly the Daily Mail likes them too – these brothers born two years apart are “technically” twins according to the Mail – in fact, they are technically not twins. It is always made to sound as if it is some extraordinary and highly unusual matter, yet there are hundreds of thousands of siblings around the world who will have been conceived in a similar way.

Maybe I’m getting pedantic in my old age…

Fertility trial open to people on 2nd and 3rd cycles

Often fertility trials are only open to those who are going through their first cycle of IVF treatment, but the E-Freeze trial is now also taking patients who are having their second or third treatment cycles.

E-Freeze is investigating the theory that using frozen thawed embryos may lead to improved pregnancy rates. When frozen embryos are used, there is a delay in embryo transfer of at least a month, and the theory is that allowing the hormones used in ovarian stimulation to wear off and giving the womb time to return to its natural state may increase the chances of success.

Without more research we cannot say if fresh or frozen thawed embryo transfer is better for the first cycle of fertility treatment. E-Freeze will compare these two types of embryo transfer in more than a thousand couples from IVF centres throughout the UK to find out which, if any, gives the best chance of having a healthy baby.

If you are interested in taking part, you can find lots of information about the trial on the E-Freeze website and a list of all the participating centres.

Moondance by Diane Chandler

I owe Diane Chandler a huge apology as I’ve been meaning to review her book Moondance for months – and it’s a novel that will resonate with many fertility patients. We should always welcome novels about fertility problems and IVF because they really do help to normalise what can seem a very lonely experience, and also educate other people about the realities of what it’s like not to be able to get pregnant.

In Moondance we follow Cat and Dom through their attempts to conceive, fertility tests and the crashing ups and downs of treatment. There is much that will be familiar to anyone who has been through this themselves, especially in the way that treatment takes centre stage and comes to dominate everything else in life. Cat is not a sympathetic or likeable character – almost unbelievably self-centred, arrogant and selfish – which makes it hard to feel much in the way of empathy at the start of the novel. And yet seeing how someone so obsessed with controlling everything in their life is completely thwarted by their inability to conceive adds strength to the portrayal of the nature of infertility.

This is the sort of book that you sit down with and find yourself speeding through – despite being a thick book it’s a fairly quick read. There are a couple of niggling inaccuracies, for example, a type of post-coital sperm test which is medically impossible, but these don’t detract from what is otherwise a detailed account of the realities of treatment.

Moondance is published by Blackbird Digital Books and the paperback is priced at £8.99

What should you do in the Two Week Wait?

For most people, it’s probably the worst part of an IVF cycle – the notorious 2ww when you get to spend a fortnight (which seems to last about ten years) on tenterhooks, worried about everything you do and don’t do in case it affects the chances of a positive outcome. One of the most frequently asked questions is what you should and shouldn’t do during this time.

You will find all kinds of advice from all kinds of experts about activities, diet and supplements during the two week wait. There are those who advise that you should take the time off work and do as little as possible, spending the first day or two lying on the sofa. Others may advise going back to work right away to try to keep your mind occupied and suggest that it’s best for your mind and body to keep active and busy. I’ve heard of people drinking pints of milk and others avoiding dairy products.  There are women who don’t take baths because they might overheat, and others who are lying around with hot water bottles on their stomachs.

If you visit any fertility forum, you will find it awash with questions and suggestions about the two week wait. Some are quite bizarre – a quick trawl produced all the usual stuff about eating pineapple core and brazil nuts, but the idea that you shouldn’t eat anything uncooked and that you need to wear socks 24 hours a day were both new ones to me!

I will always remember the nurse who cared for us during our first IVF cycle telling me that any rules about what not to do during the two week wait weren’t really set because they would cause an embryo not to implant or induce a miscarriage but rather because they were things that fertility patients often worried about. So, having a glass of wine during the two week wait is not going to stop you getting pregnant, but if your treatment doesn’t work and you’ve had a glass of wine, you are likely to question whether it was to blame.

I think the bottom line with all of this is that if you are sufficiently worried to be asking whether it is OK to do something, it’s probably a good idea not to do it. Two weeks seems a lifetime during the 2ww, but in reality it isn’t a long period to have to give anything up. There are no hard and fast rules, but following your own instincts and doing what feels right for you rather than allowing yourself to be driven to distraction by conflicting suggestions is probably the best advice anyone can give you about what to do and not to do.

Can you help save fertility services in Richmond

NHS Commissioners in yet another area are considering cutting fertility services. This time, it’s Richmond Clinical Commissioning Group which is consulting on whether to continue to offer one fresh and one frozen cycle of treatment or to cut the service entirely. You can give your views by completing their survey –
https://www.surveymonkey.co.uk/r/IVFandICSIconsultation

The consultation closes on Tuesday 4 April 2017, so please do let your views be heard especially if you live in or near Richmond.

Have you had fertility treatment in the UK?

Could you help a researcher by filling in a survey? I know I am always posting links to surveys and research – but I do think it’s a good idea to do these whenever we can because every piece of research helps further understanding of what it’s really like to be a fertility patient and how it feels to go through treatment.

This particular survey is being carried out by an MBA researcher who previously worked in a fertility clinic and is totally anonymous but will be used for part of her MBA. Do feel free to share the link with anyone who has had or is having fertility treatment in the UK – you can access it here https://www.surveymonkey.co.uk/r/JSXXS25

Finding clinic success rates

New research suggests that if you want to find out about outcomes from fertility treatment at a particular clinic, the best place to go is not the clinic’s own website. Researchers from Manchester University discovered that fertility clinics use a variety of different ways to present their data which makes it very difficult for anyone trying to compare one clinic with another.  They found that clinic websites often use league tables which they construct themselves using their own parameters to compare clinics in their area and that these are “invariably constructed so that the comparison was favourable to the reporting clinic.”

If you do want to look at outcomes, it is worth bearing in mind that most clinics have broadly similar success rates and that relatively small percentage differences can be pretty meaningless and may have more to do with the patients being treated at any given time than anything else. The HFEA publishes outcomes broken down by age and this is by far the best place to go for information if you want to look at treatment outcomes as the figures are collected and collated the same way for all clinics across the UK

You can find the full report from Manchester University which was published in the British Medical Journal here.