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.

Diet advice for PCOS

If you have polycystic ovary syndrome, or PCOS, you may be interested in this article about diet and PCOS. It is based on advice from  Clare Goodwin, a  PCOS nutrionionalist who is a former athlete. She discovered she had PCOS and had to give up her career in athletics, but devoted her time to studying nutrition and finding out more about how her PCOS affected her body. It is an interesting read.

Fertility milestones

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.”

IVF funding situation is “shocking”

The latest figures released by Fertility Fairness earlier this week about funding for IVF treatment have been described as “shocking” by the President of the Royal College of Obstetricians and Gynaecologists, Professor Lesley Regan.

Commenting on the fact that so few clinical commissioning groups (CCGs) are currently following national guidance and that the number which have completely removed NHS IVF has almost doubled in the last year, Professor Regan said “These figures are shocking and it’s very disappointing to see even fewer CCGs following NICE guidance and providing full access to NHS fertility treatment. Current access to treatment is a postcode lottery and these health inequalities people face are unacceptable. Infertility can have a devastating effect on people’s lives, causing distress, depression, and the breakdown of relationships. IVF treatment is cost-effective and should be available on the NHS. The RCOG is committed to working with UK commissioners and healthcare providers to support them in following NICE Fertility Guidelines.”

HFEA joins Facebook

You may want to have a look at – and follow – the Human Fertilisation and Embryology Authority’s new Facebook page. The HFEA regulates fertility treatment in the UK and is launching the page during National Fertility Awareness Week.

There are also a couple of very helpful videos on what it’s like to have IVF and ICSI. You can find out much more by having a look at the HFEA’s posts and you can follow for regular updates from the Authority.

Where are you in the IVF league tables?

The campaign group Fertility Fairness has produced a league table of different areas of the country to show how they rank when it comes to fertility treatment. Fertility Fairness has found that 90% of local clinical commissioning groups, who make the decisions about fertility treatment provision, found that nearly 90% were failing to provide the treatment that NICE has deemed to be both clinically effective and cost effective.

The BBC have provided a link to the full table in an article on the subject which shows that the best places to live if you need fertility treatment are Bury, Heywood, Middleton and Rochdale, Oldham and Tameside and Glossop. In some areas couples who are experiencing fertility problems cannot access any treatment. These are Basildon and Brentwood, Cambridgeshire and Peterborough, Croydon, Herts Valleys, Mid Essex, North East Essex and South Norfolk.

Fertility Fairness Co-Chair Sarah Norcross has been doing media interviews this morning calling for the government to take urgent action about the current funding situation. The government has suggested that commissioners should follow NICE guidance but in practice many are still choosing to completely ignore the evidence about best practice and about cost-effectiveness leaving many patients unable to access treatment at all,

Living without children webinar

For anyone who is facing a future without children, there is a free webinar which may be of interest later this week. In support of National Fertility Awareness Week, Kelly Da Silva, who set up an online community called the Dovecot to support people who are living without children, will be running the webinar on Thursday 2nd November from 7pm – 8pm.
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The topic will be ‘Dealing with Involuntary Childlessness’, and Kelly will be taking questions after an initial input in this topic where she will be discussing the key challenges of childlessness including, shame, disappointment & the impact of childlessness on our daily lives. You can find out more and details of how to join the free webinar on the Dovecot Instagram page here.

Are you cycle savvy?

In support of National Fertility Awareness Week which starts today, Dr Fertility are launching #cyclesavvy, a national survey targeting women aged 25-44 years old to research the level of knowledge women have about their own fertility.

Anyone who has been trying to conceive for any length of time is likely to be very cycle savvy, but Dr Fertility believes that there is an unmet educational need when it comes to women understanding how they can get pregnant naturally.  The #cyclesavvy campaign follows up on the #bettersexeducation campaign in 2016, which focused on improving sex education in schools. However, Dr Fertility believes that, even with a better education at school, by the time a woman is ready to start a family, a lot of what she learned at school could easily be forgotten and some of this information could be out of date.

In 2016 Dr Fertility teamed up with Professor Allan Pacey, one of the UK’s leading male fertility experts, to launch the fantastic male fertility awareness campaign #spermbanter. This aimed to educate men and to evoke banter to tackle the male fertility taboo.

The campaign aims to collect at least 300 responses and once the data is analysed the results will be published. To help plug the anticipated knowledge gap, Dr Fertility will launch a #cyclesavvy bite-sized video series presented by Fertility Nurse Consultant, Kate Davies, alongside the results. You can click here to take the #cyclesavvy test.

Thank you Hannah, thank you Sophie…

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

Have you reviewed your fertility clinic?

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.