I don’t often put personal posts on this blog, but today I did want to say thank you to Juliet Tizzard who is leaving her role as Director of Strategy and Corporate Affairs at the regulatory body for fertility treatment, the HFEA. If you’ve been to the Fertility Show in the past, you may have seen Juliet speaking there about how the Choose a Fertility Clinic pages on the HFEA website can help if you are trying to decide where to have treatment. She’s driven some of the exciting steps forward for the HFEA such as the new website where patients can find lots of helpful information about different clinics and can give feedback after they’ve had treatment. Juliet is moving on today to the Health Research Authority where she will do a fantastic job – but she will be missed!
I gave a talk at The Fertility Show on Saturday about add ons, and promised to put my notes on the blog, so these are some of the key points, and links to useful sources of information.
What are add-ons?
- They are additional treatments which your clinic may offer on top of IVF/ICSI
- They are new or emerging treatments and there may be limited evidence about how effective they are
- Some may have shown some promising results in initial studies but may not be proven to improve pregnancy or birth rates
- Some clinics offer lots of add ons and may give you what looks like a shopping list of additional treatments to choose from. Some don’t offer them. This isn’t an indication of how good or forward-thinking a clinic is – some fertility experts may not be convinced that some add ons are worthwhile or safe.
- Some clinics charge for add ons, others may include particular add ons in the cost of treatment because they think they make a difference and believe they should be part of IVF.
- Add ons can be expensive and may substantially increase what you pay for your IVF
The Human Fertilisation and Embryology Authority (HFEA) has a list of some of the more common add ons you may be offered on their website, and a grading system for them
- Assisted hatching
- Artificial egg activation
- Elective freeze-all cycles
- Embryo glue
- Endometrial scratch
- Intrauterine culture
- Pre-implantation genetic screening (PGS)
- Reproductive Immunology
- Time-lapse imaging
It can be difficult to know what to think about these new treatments, and the HFEA carried out patient survey to try to find out what people thought. The views ranged from those who were very strongly in favour of add ons to those who felt patients should not be offered treatments that we don’t know work. The overwhelming feeling from patients was that they didn’t want to miss out on something which might make a difference, but that this had to be balanced by the need to protect their interests.
Assessing the evidence is key and you want to know is:
- What evidence there is about how effective something is
- What evidence there is about whether it is safe
- Does it carry any risks
- How much does it cost
How do you assess the evidence?
As lay people, when we hear about evidence we may give any research or scientific paper equal weight, but in fact evidence isn’t quite as black and white as we may think.
The best scientific evidence comes from randomised controlled trials. In these trials, people will be divided into those who have the new technique or treatment and those who don’t in a randomised way. It is important when assessing evidence to look at whether the study included all patients or just a specific group. Sometimes research may have a narrow age range, or may have only looked at people with one specific type of fertility problem.
You should also look at the number of people included in the study. The most meaningful research will have involved a large group but sometimes you may discover that studies have taken place in one specific clinic and may involve tiny numbers of people.
Finally, check the outcomes. You want to look at studies where a healthy live birth is the outcome but some studies may stop at a fertilised egg or positive pregnancy test and this may not translate into an increase in births.
How the HFEA can help
The HFEA got together a group of leading scientists and fertility experts to look at all the existing research on each of the add ons, to assess it and to develop a traffic light system for add ons.
There is a green symbol where there is more than one good quality study which shows that the procedure is effective and safe.
A yellow symbol where there is a some evidence or some promising results but where further research is still required.
And a red symbol where there is no evidence to show something works or that it is safe
The decisions made by the group were then re-assessed by an expert in evidence to ensure every traffic light had been correctly assigned.
Not one of the add ons mentioned at the start was given a green light to say that there is “more than one good quality study which shows that the procedure is effective and safe”
There are a few red lights which means there is currently no evidence for assisted hatching, intrauterine culture, PGS on day three and reproductive Immunology. There may also be risks here too so do read the evidence carefully on the HFEA’s information page.
A lot of the add ons fall into amber where more evidence is needed. This includes endometrial scratch, freeze all cycles, egg activation, embryo glue, PGS on day five or six and time lapse.
For two of the add ons in this category, freeze-all cycles and endometrial scratch, there are big multi-centre trials going on at present in clinics across the United Kingdom. If you want one of these add ons, ask your clinic if they are taking part in the trial as you could end up getting the add on itself free of charge (this doesn’t cover the cost of the IVF/ICSI and you may be randomised into the other part of the trial and not get the add on, but it may be a good way forward if can’t afford to pay for the add on)
The cost of add ons
Some clinics offer add ons such as embryo glue or time lapse as part of a treatment cycle to every patient they treat. Others charge, and prices can vary hugely. There is often no discernible reason for wide discrepancies in price, so do look into this by finding out what a number of different clinics are charging for any add on you are considering.
If your clinic offers you an add on, make sure you ask some questions first:
- Why are you offering me this treatment?
- What evidence is there that it works?
- What increase in success have you seen with patients similar to me?
- What are you charging and how does it compare to other clinics?
- If you are charging more, why is this?
There are also some questions to ask yourself:
- Are you happy with the evidence your clinic has given you?
- Have you read the information on the HFEA website?
- Can you afford to pay for it?
- If you pay for it, would it affect your chances of being able to pay for another cycle if it doesn’t work?
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Whatever you decide,make sure you are as fully informed as you can be about your treatment, and make sure you have read through all the evidence on the HFEA website which is there to help you to make an informed decision about your treatment.
In support of National Fertility Awareness Week, the HFEA or Human Fertilisation and Embryology Authority which regulates the fertility sector, has published data which reveals some new milestones for UK fertility treatment.
More than 300,000 children in total have now been born in the UK from licensed fertility treatment since 1991. Fertility treatment has grown markedly since 2010, with almost a third of all IVF and DI babies since 1991 arriving in the last six recorded years (2010 to 2015).
The total number of treatment cycles carried out in UK clinics also passed a significant milestone in 2015, breaking through the million barrier. The overall number of treatments carried out since 1991 is 1,034,601.
The new data – drawn from The HFEA Register, the oldest and largest fertility database in the world – also reveals that fertility services are used mainly by younger women. The average age of women having fertility treatment is 35 years, which has remained largely static over recent years.
Treatments involving women aged 18-34 remain the largest single group, accounting for 43% of all treatments, while treatments for women aged 40 and over account for just 20% of all treatments with very few treatments being provided to women over 45.
Looking at the different regions in the UK, the data shows that most treatments continue to take place in London and the South East of England, accounting for 42% of all cycles. However, there is a strong representation of large northern clinics in the figures, with the North West now providing more treatments per clinic than any other region, including London. Total clinic numbers vary according to region, ranging from three in Northern Ireland to 22 in London.
HFEA Chair Sally Cheshire CBE welcomed this new data as a sign of a thriving and successful fertility sector: “The figures we have released today show that the UK’s fertility sector continues to be one of the most vibrant and successful in the world. Families using assisted reproduction services across the UK are better served than ever before, and we will continue to encourage all who work in the sector to offer the highest quality support for patients who are both successful and unsuccessful.”
Susan Seenan, chief executive of patient charity Fertility Network UK said “We welcome the publication during National Fertility Awareness Week of the new IVF milestones from the HFEA. The extraordinary growth of IVF in the last six years shows the pressing need for practical and emotional support and advice for the many people facing fertility issues. It is also significant to note that this data underlines that fertility services are used mainly by younger women – aged under 35 – who will have been trying for a baby for at least two years and often more. National Fertility Awareness Week is about challenging perceptions and we hope this helps to dispel any misconceptions about IVF and female age.”
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
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.
The Human Fertilisation and Embryology Authority is looking for fertility patients who might be willing to help test the new HFEA website and the search tool which helps you to find information about choosing a clinic.
The site will include patient feedback for the first time, and aims to be easier to use and understand. Before it is launched, the HFEA needs the views of people who might be using the new site. Testing can be done in London or Manchester, or even via Skype. If you are interested you can find out more about how to take part here
If you’ve had, or are having, fertility treatment, would you be willing to help the HFEA to find out more about patient experiences of assisted reproduction? The HFEA has decided to make it a priority to put patients at the heart of what it does, and is carrying out a review carried out by Opinion Leader getting views from former and current patients.
There will be focus group discussions with patients in London and Manchester, and they are hoping to recruit a mix of single people, heterosexual and same sex couples, from the NHS and private section. The groups will be held on
27th March (Live birth group, London 6.30pm)
1st April (unsuccessful as yet, London 6.30pm)
31st March (live birth group, Manchester 6.30pm)
1st April (unsuccessful as yet, Manchester 6pm)
There will also be in-depth face-to-face interviews with donors, donor-conceived people and those seeking fertility treatment in London, and an online patient survey which will be available soon.
There will be a small payment available to those who take part (£60 for those taking part in group discussions and £45 for the face to face interviews which will be held in your own home)
If you would like more information please contact Rebecca Paton – RPaton@opinionleader.co.uk or on 07831 702 513
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…
If you haven’t already, do listen to this interview with the outgoing Chair of the HFEA Professor Lisa Jardine which was broadcast on BBC Woman’s Hour yesterday. It’s a great shame that Professor Jardine is standing down as Chair of the regulatory body as she has had a positive impact during her term and has been a visible figure for patients. Here she makes the point that we really don’t address what happens when IVF doesn’t work.
I was apprehensive when I heard Woman’s Hour were covering the topic, as sometimes this debate slides into a them and us battle which paints a picture of exploitative fertility clinics, of a treatment that rarely succeeds and of ill-informed women, when in fact the picture is far more complex. Professor Jardine says she is “enough of a feminist” to believe that women who want fertility treatment at an age when it is less likely to work should be able to make that choice for themselves, but suggests that we need a more open debate about the fact that not everyone is going to come out at the end of treatment with the baby that they long for.
It is true that there is still so much stigma and anxiety around fertility that it makes having an open and honest discussion difficult at times. I’m not sure how we change that – but there is a growing ground swell that is pointing in the right direction.
There are some things in life that we tend to take for granted, and I think the HFEA is one of those things for many fertility patients in the UK. It’s easy to forget, or to be unaware, of all that the HFEA does to help us.
When the government decided to get rid of the HFEA as part of its war on quangos, the idea was that much of the work of the authority could be done just as well in other places. There were many arguments against this, but what was most worrying to me was that one of the key functions of the HFEA from the patient perspective seemed to be completely overlooked. There were endless debates about whether the HFEA was asking clinics for too much unnecessary paperwork, about whether research decisions would be better made elsewhere and about how regulation would work, but the importance to patients of the HFEA’s role as an information provider was largely ignored.
It’s not just the annual success rates, published for each individual clinic, which are helpful to patients but the HFEA’s measured views on a range of topics. When there’s an IVF scare story in the news, it’s the HFEA’s view which patients know they can trust to tell the truth behind the headlines.
Aside from this, the regulation of fertility clinics is something patients in the UK can take for granted. The systems may not be perfect, but the monitoring of processes and staff means that we have safety nets in place which simply don’t exist in many other parts of the world. The knowledge built up within the HFEA over many years in this area should not be underestimated.
It’s great that the government has seen sense and realised that getting rid of a body with such a wealth of expertise would not be sensible – although it would be interesting to know how much money has been spent arriving at this conclusion!
There will still be a review of the HFEA and the way that it works, particularly in relation to another body, the Human Tissue Authority. Interestingly, merging these two bodies was another potentially money-saving proposal considered five years or so ago which was dismissed out of hand after consultation.
Let’s hope not too much time or cash is spent reviewing what has already been reviewed and that it is possible to use this process to come up with some sensible views about things that can be improved whilst retaining all that is good about the HFEA.