I know I’ve written about this before, but it is so sad to see that things haven’t changed at all with some fertility clinics creating fake patients to advertise their services online. Let’s be clear, this isn’t just a made-up quote about how marvellous their services are, it is multiple fake profiles on each fertility forum with fake people talking about their “experiences” of infertility. They often post regularly before they mention the clinic, so have other people talking to them and expressing their support. Until of course, they suddenly mention that surrogacy appears to be the solution and that they have a very good friend who went to xxx clinic and now has four children.
I can’t imagine anyone ever deciding to go to a clinic which has to resort to paying people to pretend to be experiencing fertility problems – and which clearly doesn’t even pay enough to employ anyone who can actually write in English. The posts are littered with weirdnesses – “Many couples suggested me this clinic and they are very helping and experience. I suggest you to not waste your time and go a head for surrogacy process its very safe and sound” or “Stop trying with complications just try this. Clinic in Ukraine provides complete facilities.”
Anyone who reads posts on any fertility forum regularly will know exactly what I’m talking about – and will be familiar with the names of the clinics concerned. I suppose they must be under the impression that all publicity is good publicity – but being well known for having such scant regard for the emotional experience of infertility that you think it’s fine to employ people to pretend to be experiencing fertility problems isn’t the sort of publicity any clinic ought to be seeking.
These fake posts take up time for the forum administrators and facilitators who are constantly deleting and reporting fake profiles which seem to appear by the dozen daily. This is time which could be spent helping to refer people to good sources of support and offering advice and guidance.
The one small upside to all this is that the genuine people posting are very aware of the fake people and there have been some fabulously funny posts from real people about the unreal ones. And I suppose we can be reassured that this advertising backfires spectacularly – no one is ever going to opt for the “very helping and experience” clinic which “provides complete facilities“.
If you’re having fertility treatment in the UK, or if you have done in the last year, have you given feedback on your experiences at the clinic? The body which regulates fertility clinics in the UK, the Human Fertilisation and Embryology Authority (HFEA), is keen for patients to give their clinic a rating which you can do here on their website. This feedback is anonymous, and is used to give the clinic a patient rating on the HFEA website so that anyone considering having treatment at the clinic will know what other patients think about it.
You can also add any particular comments or views which are seen by the inspection team who go into the clinic to check how well it is working. This is incredibly important as it helps give inspectors a view of how the clinic is doing from a patient perspective and allows them to look into any particular areas of concern – or to notice where a clinic is doing particularly well.
If everyone took a few minutes to rate their clinic after having treatment it would help promote best practice and ensure that more fertility patients are cared for by compassionate staff, feel involved in discussions about how to progress their treatment and receive exceptional emotional support. So, there’s nothing to lose and everything to gain – if you haven’t done it already, here’s the link again to give feedback on your clinic.
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.
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.
Once again one particular overseas clinic is spamming a fertility forum with endless fake patient posts about how marvellous the clinic is. What’s really sad about this is that it shows so little respect for those going through treatment – the posts are all remarkably similar, all from people raving about the marvellous treatment they’ve had at this particular clinic and all of them full of the same terrible English, peculiar phrases and spellings. Some even seem to forget they are pretending to be a patient half-way through and say things like “Maybe during your vacation you can visit xx and will direct you. Maybe also hangout together” or “Welcome to xx where reproductive health is assured”. Do they really think anyone is going to believe this is a fellow patient sharing their fertility journey?
These fake patient posts are so easy to spot and I hope that this is as counterproductive as it ought to be. A fertility forum should be a safe place where patients can talk to one another, and a clinic which doesn’t respect and understand that is not one you’d want to be spending your money visiting.
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
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…