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.
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
The fertility regulator, the Human Fertilisation and Embryology Authority, has just published its report on the number of incidents in fertility clinics. These incidents can be all kinds of things going wrong in a clinic from a patient suffering from hyperstimulation to a letter sent to the wrong person by mistake.
Incidents in fertility clinics are rare – they occur in less than one percent of the treatments performed in the UK fertility clinics – but each incident is one too many.
The HFEA’s annual report on fertility clinic incidents shows that the total number of incidents increased slightly but for the first time since the HFEA began publishing incidents reports, there were no A grade (the most serious) incidents reported at all.
HFEA Chair Sally Cheshire called on fertility clinics to substantially reduce the rate of incidents next year. She said “The UK’s fertility sector is one of the most developed in the world, and the high level of professionalism in the sector is highlighted by both the fact that fewer than 600 incidents were reported out of more than 72,000 treatments, and that no ‘grade A’ incidents were reported in the last year. We want to ensure clinics give patients the best possible treatment, so that they have the best chances of having the families they so dearly want. So, while incidents are already occurring infrequently, we want to see them reduce even further. I’m setting the challenge to all clinics in the UK to make sure that the overall number of incidents has decreased by this time next year. It’s not only ‘grade A’ incidents that can have an adverse effect on patients. All incidents, whether it’s a letter sent to the wrong address, or a case of ovarian hyper-stimulation, can have serious consequences for patients, and more has got to be done to make sure that fewer people are affected in the future.”
The report can be found here: www.hfea.gov.uk/9449.html.
I spent the day on Wednesday at the HFEA’s annual conference where the theme for the day was putting patients at the centre of everything that the authority does. It’s a laudable aim and one that Interim Chair Sally Cheshire clearly takes very seriously. There were a series of workshops for the delegates, who were mainly representatives from UK fertiliy clinics, and many of these focused on quality of care and understanding the patient point of view. The key question is whether any of this will really make a difference to the experiences of the average patient.
When my very first book about IVF, In Pursuit of Parenthood, was published in 1998 I was invited to speak at an HFEA conference about the patient experience. I’d been shocked when I’d carried out the interviews for the book to discover the poor level of care many of my fellow patients had received from clinics, and gave a rather blistering talk about all that I felt was wrong. I hoped it would help clinics to focus more on quality of care and to think about the patient experience.
When I wrote The Complete Guide to IVF more than ten years later, things had changed but not always for the better – there was more choice for patients, but that also led to more confusion, treatment was more expensive and there were far more optional extras that patients often felt obliged to pay for in order to maximise their chances of success, yet many clinic staff were still too busy to offer the emotional support to patients that they so clearly needed.
We must hope that the HFEA’s decision to focus on quality of care is more than just another talking exercise and that things really do change for patients. There was clear resistance from some clinicians at the conference to the idea of the HFEA moving into areas which they felt went beyond the authority’s remit. Of course, there are some clinics who think very carefully about how to improve the patient experience, but if all clinics were getting it right for their patients, there would be no need for HFEA intervention. We can only hope that this really does herald a change for the better – but for now, it’s a matter of watching this space…
More and more clinics are coming to see the benefits of opening their doors to prospective patients, and this is something that we should all welcome. For anyone who is going to be spending their own money on fertility treatment, making sure that you feel you’ve chosen the right place for you is essential – and that’s why it’s a really good idea to go and see as many clinics as you can. The more places you visit, the more you’ll get a feel for what matters to you and for what might suit you – and it’s easier to feel confident about your decision if you’ve visited some of the other options on offer.
I wasn’t sure about putting Open Evenings on my Events Page at first – free advertising for clinics and all that – but actually I’ve realised that they’re really useful for prospective patients. So do take a look, and go along and visit some of the places near to you. Some even include a brief individual consultation as part of the Open Evening and this can be very useful.
Of course, for clinics the Open Evening can be a bit of a sales pitch – which some may push more than others – so the one important thing to keep in mind is that going to an Open Evening doesn’t in any way commit you to having treatment at a specific clinic.
More and more fertility clinics are now holding open evenings for prospective patients which can be a really good opportunity to find out more about the options for treatment. Some even offer mini consultations with a fertility specialist to discuss your individual situation and what might be best for you.
It’s worth going along to as many of these as you can to get a feel for what would suit you. Open evenings are a great source of information and will help you to understand the types of treatment on offer. Remember that going to an open evening doesn’t mean you are committed to having treatment at any particular clinic. Success rates and cost of treatment are important factors when you are choosing a fertility clinic, but atmosphere is important too – if you feel comfortable in an environment and like the staff, it is going to make treatment easier.