New report from the HFEA

The HFEA has  launched its first-ever “state of the sector” report yesterday, providing an overview fertility treatment in the UK, including the success in reducing multiple birth rates to just over 10% of all IVF births.

The report, which brings together previously separate reports on incidents, inspection findings and patient feedback, records how fertility clinics and research laboratories performed in the financial year 2016-17 across a range of criteria. It is designed to give both clinics and patients a rounded view of the health of the UK’s fertility sector.

It shows that through working with the UK’s licensed clinics, the HFEA has reduced the national multiple birth rate from 24% in 2009 to 11% today, a fantastic achievement which has increased the safety of IVF for mothers and their babies and reduced the burden on NHS ante- and neonatal services. This has come without a reduction in birth or pregnancy rates, with the latter rising from 24% in 2008 to 32% today.

The report also shows that in 2016-17 there were 132 treatment and research clinics working under licence in this country, of which 34% are privately run, 29% are in public/private partnership, and 22% are NHS only (the remaining 15% are research only). During that same year the HFEA carried out 81 inspections as part of its yearly inspection cycle.

There is also specific focus on how patients experience treatment, and the new ways being developed to receive patient feedback and pass it on to clinics. A new star rating system has recently been launched on the HFEA website, giving patients the chance to rate their clinic directly and which has already been used over 700 times.

Sally Cheshire CBE, Chair of the HFEA welcomed this new report as a sign of open and healthy governance, and a continuing commitment to improving patient care:

“This report shows the full range of work, undertaken by both us and clinics, that lies behind the more than 76,000 treatment cycles performed in the UK each year, and outlines the importance of us working together to ensure patients, donors and the donor-conceived get the highest possible quality care.

“It is particularly pleasing to see that the multiple births rate has fallen consistently across the vast majority of the sector and is now very close to the 10% target we set for clinics some years ago, without a reduction in births. And it is heartening to be able to discuss with clinics real examples of patient experiences. It’s so important that patients have a voice, and I hope that the UK’s clinics will listen to what is being said.”

The report also details non-compliances, including adverse incidents, and areas for improvement. In many ways, there has been good progress, with fewer than 10 instances of non-compliance identified by inspectors in 14 main areas of the Code of Practice across all clinics in 2016-17. And of the 299 reported non-compliances overall (a slight rise from the previous year), almost all were resolved within the deadline set. This shows a sector that is open to constructive feedback and continuous improvement.

However, performance wasn’t all positive and the report reveals some areas for concern. The number of reported incidents increased from 497 in 2015 to 540 in 2016. Of these, 325 were categorised as ‘grade C’, 176 were classed as ‘grade B’, with one ‘grade A’ incident – the most severe.

Sally Cheshire CBE urged clinics to consider the impact incidents have on patients, and ensure Britain’s IVF sector maintains the highest standards:

“While the number of incidents and non-compliances must be placed in the context of the many thousands of treatments being performed in the UK each year, the fact is that all incidents, whatever the category, can be very upsetting for patients and must be avoided wherever possible. Non-compliances risk undermining the hard-won reputation for quality and rigour that the UK’s fertility sector has established over the last 25 years.

“In line with our commitment to open, frank and constructive regulation, we will continue to work with all our licensed clinics so that they strive to continually improve and maximise the chances of success for patients seeking their much longed-for families.”

The full report can be read on the HFEA website: https://www.hfea.gov.uk/

Free IVF cycles

Since 2009, the Lister Fertility Clinic has been offering a small number of free IVF cycles each year to try to help people who are unable to access NHS-funded fertility treatment. The cycles are offered in conjunction with the charity Fertility Network UK and there are some criteria for entering into the draw for the free cycles.

You have to be a UK resident under the age of 42, with a cause for your fertility problems. Your BMI must be in the normal range and you can’t have any children from your current relationship. You can’t have been sterilised in the past and you can’t have had a free cycle at the Lister before. There are also some restrictions on the type of treatment you can have, which can’t include egg donation.

You need to send your entry to Fertility Network UK – and you can find the details here

 

Join us to talk about coping at Christmas

 

If you’d like to join us for the Fertility Network UK online chat via Skype on Wednesday 13th December at 7pm, we will be discussing Christmas. It’s always a hard time for anyone who is experiencing fertility problems, and we’ll be talking about some strategies which can help with a Q and A session at the end.

You can find the details of how to join on the Fertility Network UK website.

Pineapples…

Pineapples are much-discussed by those trying to conceive as their cores contain the enzyme bromelain, which is a natural anti-inflammatory which some believe could help implantation.

Now, the online fertility magazine ivfbabble is using pineapples as part of a campaign of solidarity for those experiencing fertility problems.  Their “stronger together” campaign is a brilliant idea which aims to bring people together and to make us all realise quite how common fertility problems and that we are not alone.

You can read more about the pineapple pins here – www.ivfbabble.com  and you can buy the pins directly on Amazon  or from ivfbabble and any profits from the sales will be donated to Fertility Network UK.

 

Survey on data for research

Another short survey – apparently this one has just five questions – and it is looking at how you feel about your personal data being used in fertility research.

The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.

Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an example here), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future).  Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.

The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en

Time for a quick survey?

If you have five minutes, would you be able to complete a quick survey to help with the design of a study looking at women’s long term health after fertility treatment. The purpose of this survey is to learn about your views and health concerns regarding Assisted Reproductive Technology (ART) which covers all forms of IVF/ICIS.

To date, little research has examined women’s health after fertility treatment. University College London is designing a study to monitor women’s long term health after ART and your opinion, views and concerns will help them to design and develop a study, taking into account women’s specific concerns about this topic. This survey is open to all women, whether or not they have had fertility treatment so you can share it with other people. It is anonymous and you can find it by clicking on the link – https://www.surveymonkey.co.uk/r/QY26FR7

Thanks to Hannah and Lewis Vaughan Jones

TV presenters Hannah and Lewis Vaughan Jones have been charting their fertility journey on YouTube – if you haven’t already seen it, you can find the episodes of their IVF story starting here. If you’ve been through it yourself, you will understand how incredibly courageous it is to decide to go public with each stage of the IVF process – and as their cycle progresses, this becomes ever more apparent. Yet, it is only by telling our stories and by revealing the raw emotion that other people will begin to understand how devastating and all-consuming infertility can be.

Thanks to Hannah and to Lewis on behalf of the one in seven of the population who know exactly what it’s like. When you are already in the public eye, it is even more of a challenge to be so open about something so deeply personal and we are with them every step of the way and thank them for their courage.

Sophie’s story

If you listened to BBC reporter Sophie Sulehria’s first broadcast about her fertility journey on Radio Four, you can find all the episodes she’s put together so far here. 

There’s Sophie’s own story which she tells in two episodes with her husband Jonny, along with reports on adoption and egg donation where Sophie talks to people who have experience of these other routes to parenthood.  The series is due to run into the new year, so there’s more to come from Sophie and Jonny.

Do listen – it’s great to hear someone who actually understands what it’s like and who has personal experience talking about these subjects. And thanks to Sophie and Jonny for their courage in being so open about their own story – fertility is not an easy thing to talk about when you are still on the journey.

Coping with Christmas

It’s often the worst possible time of the year for anyone trying to conceive – you just can’t seem to escape perfect smiling families wherever you turn whether it’s adverts on television or displays in shop windows. It can feel a very hard and lonely time to be childless when the very point of Christmas is to celebrate a birth.

There is no shortage of advice about how to get through this time of year. I usually write a blog post about it, but this year I thought maybe I’d give you a collection of other people’s thoughts on the subject to browse.

Here on netdoctor are the views of Harley Street fertility specialist Dr Geeta Venkat, here are some thoughts from Lesley Pyne who specialises in supporting women who are childless, some musings in the Daily Mail from Amanda Platell, thoughts from the Childless by Marriage blog, and a great factsheet on the subject from the US fertility support charity Resolve.

I hope that some of these are helpful – there are certainly lots of ideas and the key theme seems to be to put yourself first, not to attend events you know are going to be difficult just because you feel you should and to try to create a different Christmas for yourself doing the things that you like.

Add ons – do they add up?

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

They include:

  • 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.

Green lights

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”

Red lights

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.

Amber lights

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.

Key questions

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?

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.