Thanks to television news presenter Hannah Vaughan Jones for her brilliant article about her experiences of fertility problems and treatment. I’ve linked to Hannah’s tweet so that you can read the full article which is behind a paywall – and it is something we should all read as a reminder that things haven’t changed, that people are still feeling isolated, lonely and ashamed about their fertility problems, that people are still having to be brave, to pretend they are fine when inside it feels so bleak and desperate. It’s so wonderful when people in the public eye like Hannah and her husband, ITV news presenter Lewis Vaughan Jones, are able to be open about their fertility problems. It makes such a difference to those who are struggling with their own difficulties to know that it isn’t just them, that it can happen to anyone.
Also this week, BBC reporter Sophie Sulehria began a three-month series on PM on BBC Radio 4 charting her experiences of fertility and treatment. She and her husband Jonny have had a long journey involving endometriosis, premature ovarian insufficiency and unsuccessful IVF treatment. It’s really worth listening to Sophie’s story here – she is just so brave to do this in public and it will make such a difference, not just in terms of raising awareness of what it’s actually like to have fertility treatment but also in helping others who are going through fertility problems and treatment themselves. Sophie’s recording of her experiences of a cycle, of embryo transfer, of the two-week wait and a pregnancy test will resonate with anyone who has been there themselves.
Thank you Sophie, thank you Hannah – you are brave and brilliant and we thank you for being able to talk about this and wish you all the best for the future xx
If you’ve had fertility treatment recently or are currently having treatment at a UK clinic, did you know that you can give a review of your clinic’s services on the HFEA website? Your reviews are used to create a patient rating for the clinic which other people can then see on the website along with the outcomes from treatment there and a ranking from the HFEA inspectors.
It’s good to do this if you have a spare moment – and it really won’t take long – as it helps to build up a picture of the clinic for others who may be considering having treatment there. You will be asked a series of questions about the clinic such as
How likely are you to recommend this clinic to friends and family if they needed similar care or treatment?
To what extent did you feel you understood everything that was happening throughout your treatment?
To what extent did you feel you were treated with privacy and dignity?
What was the level of empathy and understanding shown towards you by the clinic team?
You will also be asked about cost for those who had to pay for treatment and you will be able to say whether it was more, less or about the same as you’d been anticipating. Finally, you are able to add any further comments about your experiences which will be seen by the regulator but will not appear on the website.
Choosing a fertility clinic is not easy, particularly if you live in London and the South East where there are so many clinics to choose from, and the views of other people who’ve been to a clinic can be useful.
Fertility clinics have been promoting “fertility MOT” tests for some time as a way of checking your future fertility by testing the stock of potential eggs in your ovaries, known as your ovarian reserve, to see how “fertile” you are. New research published in the Journal of the American Medical Association suggests that these MOT tests may have no value in predicting how likely you are to get pregnant.
Ovarian reserve tests do have a use for people who are having fertility treatment as they can give some idea of how your ovaries might respond to the drugs used in the course of the treatment, but this study shows that the tests have no value in predicting your chances of getting pregnant naturally.
The researchers looked at a large group of women who had been trying to get pregnant for less than three months, and following them up for a year found that the results of the tests had no relation to the chances of the women getting pregnant.
The cost of these “fertility tests” can vary hugely. The articles covering the story suggested that they might cost around £100, but a quick google reveals that some clinics are charging more than £400 for MOT tests. The researchers were quite clear that their findings “do not support the use” of these tests to assess natural fertility – so be warned before you decide to part with any money. If you are concerned about your fertility, your first port of call should be your GP rather than a clinic charging for tests.
The news of cuts to funding for fertility services has made depressing reading over recent days, with more and more areas cutting IVF in order to save money. As many people realise, cutting funds for IVF is a questionable way to save money in the longer term – you end up with dejected, unhappy people who are far more likely to need medical help for depression and related illnesses (we know from a Fertility Network UK survey that the majority of people with fertility problems have experienced depression and that more than 40% have had suicidal feelings as a result of their fertility problems).
People struggling to fund their own treatment often end up going overseas where IVF can appear cheaper, but where there are not always the same measures in place to reduce the numbers of multiple pregnancies, which is the biggest health risk from IVF. It doesn’t need many sets of prematurely-born triplets conceived after multiple embryo transfers overseas to wipe out any savings from cutting IVF funding here in the UK.
What was more depressing was the reaction to the news about the cuts from some quarters – people with absolutely no understanding or knowledge about infertility who felt the need to try to grab centre stage by offering ill-informed opinions. We all know that not everyone agrees with the NHS funding IVF treatment, but most of those who think this way have the good grace to recognise that infertility is tough and that anyone experiencing it deserves some empathy. Not so one person writing in the Independent who suggested that fertility treatment “only serves to fulfil people’s whimsical obsession with baby-making”, that the NHS should not pay for people to become parents “if they fancy it” and that there is no justification for treatment “just because it will make some people feel more fulfilled in their life”. It was quite breath-taking to read such a glib and insensitive dismissal of a medical problem. Right back to biblical times, the huge impact of infertility has been understood with Rachel, who was unable to get pregnant, crying “Give me children, or else I die”. Infertility is recognised by the World Health Organisation as an illness, and NICE says that IVF is a clinically and cost-effective treatment.
I’m not adding a link to the article in the Independent, or addressing the poorly researched claims as to why we shouldn’t fund IVF one by one. Suffice to say that a few hours after the piece appeared, the person who wrote it tweeted “So I’m about to go on Newsnight. No big deal, right? RIGHT?!?!”… The tweet explained everything about the lack of empathy, understanding or any shred of human kindness in the piece. This article was never meant to be a thoughtful response to a social problem, but was all about trying to create the sort of stir that gets you noticed and on television. It’s just a shame that the media desire for controversy and debate means that ignorance often gets to masquerade as valid opinion.
If you are having fertility treatment, or have done recently, you may have been offered some additional extras on top of your IVF or ICSI. These additional treatments include things like time-lapse imaging, embryo glue, endometrial scratching or reproductive immunology. Not all clinics offer every type of additional treatment. Some may not suggest them at all, others include them in the price of IVF or you may be given the option to pay for add ons if you would like them.
Fertility Network UK, the patient charity, and the fertility regulator the Human Fertilisation and Embryology Authority, or HFEA, is interested in finding out more about what you think about these add ons, how they should be offered and what you need in order to make decisions about whether to pay for them. Most of these add ons are not fully proven to increase your chance of getting pregnant.
If you have had treatment recently or are going through treatment currently, do take a minute to answer the short questionnaire to help them find out more about what your views are on this subject. You can find the link by clicking here
If you are trying to decide where to have fertility treatment, you may have already found the Human Fertilisation and Embryology Authority’s new website, but if you haven’t, the Choose a Clinic section is worth checking out. It is much simpler and easier to understand that the previous website and as well as giving details about the clinic and the treatments offered, it also tells you about treatment outcomes at the clinic, how other patients have rated the clinic and about what the HFEA’s inspectors have reported back on the clinic too. If you are trying to work out which clinic is nearest to you and which might be the best for you to visit for treatment, all these factors may be taken into consideration and you can see the clinics as a list or on a map.
There is a wealth of information if you want to look more closely at individual clinics and it’s a very helpful and highly recommended resource for anyone making decisions about where to have their treatment.
I’ve just been reading a fertility forum where there are a number of posts which are apparently from people who’ve had absolutely marvellous treatment at an overseas clinic. There was something about them which sounded rather odd to me and not quite like the way fertility patients usually write about their treatment, so I checked the forum for other posts about the same clinic and there were a whole series of similar posts from different people, all discussing what wonderful experiences they’d had – but also all making exactly the same slightly unusual errors in their English and using the same phrases. Some even had usernames that were similar, and they had all been successful after repeatedly unsuccessful cycles elsewhere but were returning to the forum to tell others about their treatment.
It’s always helpful to read about other people’s experiences, but reading reports online is never quite the same as talking to real people and it is worth being a little cautious, particularly if something doesn’t sound quite right. I sometimes get comments on Fertility Matters which begin as a discussion about a post and then suddenly veer into an advertising pitch and are clearly not from a genuine fertility patient. I just delete them all, but the online boards are sometimes used for promotional purposes too and it is a good idea to bear that in mind.
A new survey of fertility patients looking at overseas treatment carried out for Fertility Network UK and the website Fertility Clinics Abroad has unsurprisingly found that cost is the major reason why people travel for treatment. Of those who responded to the survey, nearly 80% said fertility treatment in the UK cost twice as much as they were willing or able to pay and 68% said that they would travel for treatment because IVF overseas was generally cheaper.
When people first started travelling overseas for fertility treatment, it was often to access donor eggs but according to this survey most of the respondents were using their own eggs for IVF treatment abroad. The survey found that people believe that treatment can often be offered more quickly abroad. There was also a perception that the standard of care was better overseas with clinics offering a more personalised approach.
Interestingly many were also attracted by the apparently high success rates overseas, but some respondents had noticed that these rates could be confusing and misleading. A majority had said a centralised database of all overseas clinic success rates would be welcome but it would be very hard to verify these rates. Some overseas clinics claim success rates of more than 80% for women using their own eggs for IVF, and it is important to be clear that these rates are not comparable with the figures you will get from a UK clinic as they are using different criteria, are not always including all the patients treated at the clinic and may be giving rates for positive pregnancy tests rather than for live births.
Almost a quarter of respondents wanted to go overseas because they would have access to anonymous donors and it would have been very interesting to find out why they felt this was an advantage – did they feel it was linked to a larger pool of available donors or was it the anonymity itself which was attractive, and if so why. So, a survey which provides some interesting information – and also raises many questions! You can read more details about it here
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.
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