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.

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.”

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.

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.

The politics of infertility

Fertility Network UK is inviting anyone facing fertility issues to an event at Westminster on 1 Nov from 4 – 6 pm to discuss fair funding for IVF.

Speakers include Peter Thompson from the HFEA, Paula Sherriff MP,  Rebecca Manson Jones (Candidate for Women’s Equality Party),  Geeta Nargund (Director of Create Fertility clinics) and patient campaigner Richard Clothier.

There are limited spaces for the event, and if you would like to attend you can find further details here 

Your views needed!

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

 

Need help choosing a fertility clinic?

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.

The Fertility Show goes to Manchester

Did you know that the Fertility Show will be in Manchester next month? The event which has taken place at London’s Olympia for many years is spreading its wings and will be held at Manchester’s Central Convention Complex in Windmill St on March 25 and 26.

There will be a wide range of speakers including Allan Pacey,  Geeta Nargund, British Fertility Society Chair Adam BalenCharles KingslandSimon Fishel, John Parsons, Rachel Cutting, Jane Stewart, Raj Mathur, Tony Rutherford and Zita West. The HFEA’s Juliet Tizzard will also be speaking as well as specialist lawyer Natalie Gamble and Fertility Fest Director Jessica Hepburn. The sessions will cover a wide range of topics suitable to those just starting out and wanting to know more about their fertility through to more detailed sessions on specific fertility problems and treatment options. There will also be a separate platform for Q and A sessions and a wide range of exhibitors.

Tickets are now on sale here so do come along if you are nearby – I will be there too speaking about how to choose a fertility clinic and will be on the Fertility Network UK stand so come and say hello!

Left confused about intralipids?

lipidemulsionIf you watched Panorama yesterday and were left worried or confused about intralipids, there are sources of accurate and sensible information.

Looking at some of the comments from fertility patients after the programme, it seems that many people were actually surprisingly unconcerned by the lack of evidence for many of the treatments discussed because they felt if there was any chance at all of something making a difference, they would still be happy to try it.

What the programme didn’t make clear was that there are some potential health risks from using intralipids. These are clearly explained on the current HFEA website which has excellent information on reproductive immunology and covers intralipids. There is also a basic information sheet on add-ons from the British Fertility Society.

Choosing a fertility clinic

800px-Woman-typing-on-laptopThose of you who came to my talk at the Fertility Show will know that I promised to put up some notes from my talk on the blog this week – here they are at last!

The HFEA website

We begin with the HFEA website which is the best place to start. You can search for your local clinic using the Choose a Clinic tool – just type in your postcode or local region and you will get a shortlist of local clinics.

You can see more about the treatments they are licensed to carry out, services, facilities and staff. It will tell you whether they take NHS patients, the opening hours, whether there is a female doctor and links to a map.

Of course, the one thing you really want to know is how likely am I to get pregnant there? Which is the one thing no one can honestly tell you. The HFEA publishes success rates for all licensed clinics, but they may not be as clear cut as you imagine. Most clinics have broadly similar success rates and the majority of clinics in UK have success rates which are consistent with national average. Don’t forget, the patients treated affect the success rates.

You may want to look at the success rate for someone of your age, and make sure you are comparing like with like. The HFEA also gives the multiple birth rate, but a high rate doesn’t suggest a good clinic which has your best interests at heart. Naturally multiple births occur in 1 in 80 of all pregnancies, it’s around one in six after IVF. That may sound positive, but in fact multiple birth is the single biggest risk after fertility treatment. 1 in 12 multiple pregnancies ends in death or disability for one or more babies, and it is also more risky for mothers. Good clinics should not have very high twin rates. A really good clinic will have good success rates and low multiple rates.

When it comes to success rates, don’t get bogged down in fairly small percentage differences – in general they’re probably not that meaningful.

NHS Funding 

You will also want to know if you qualify for NHS funding. The guideline from NICE recommends 3 full cycles (fresh and transfer of any frozen embryos) for women of 39 and under and one full cycle for women of 40-42 who have had no previous treatment, who have a good ovarian reserve and who have spent 2 years trying)

In England funding comes from your local CCG (Clinical Commissioning Group) not your clinic so you need to find out their rules – and unfortunately they all make their own up as the NICE guideline is only a guideline. You can find out what your CCG is offering by visiting the Fertility Fairness website. The CCG will also set eligibility criteria – and each will have their own

Location 

Think about how close the clinic is to your home or workplace. Be realistic as a long journey is fine as a one-off, but think about doing it three or four times a week. Ask the clinic how often you will have to visit as some will want you in every day of the cycle, but others just a few times a week.

Think about how you will get there and how long the journey will take? Are you going to use public transport or drive? Will you be travelling in the rush hour? Can the clinic offer early morning appointments or will you need to take time off work? Will it fit around your job?

Cost 

Fertility treatment prices are not regulated and can vary hugely. Clinics that charge more are not necessarily better so do look into prices. The headline figure on clinic websites is rarely the total cost of treatment  – ask instead what the average person actually pays

The HFEA does require clinics to offer you a personalised costed treatment plan, but check what is included – drugs, counselling, scans and bloods, freezing and storing spare embryos, follow-up consultations etc.

Unproven treatments 

Many clinics offer unproven additional treatments. Many are not scientifically proven. The HFEA has advice on some of these . Additional treatments can be very expensive, and you may risk paying a lot for something that may not make a difference – and may even bring additional risks.

Support

Will there be someone you can call with any problems/concerns? You should be given a contact to call if you are concerned about anything at any time. And is counselling included in the cost of treatment? You may think you don’t want or need it, you may may find it helpful once you have started treatment. So check if you are going to have to pay for counselling, and if it is included, ask how many sessions.

Is there a counsellor based at the clinic? Some counsellors also offer telephone counselling and you can find a list of fertility counsellors on the British Infertility Counselling Association website. Is there a patient support group?

Waiting 

How soon could you get an appointment and when could you start treatment if it is recommended ? How long are waiting times for donor eggs or sperm? At some clinics,
there are still waiting lists for donor eggs and sperm but others have plenty of donors, so do check.k

Do you like the clinic?

I think this is far more important than you might initially think.

Talk to anyone else you know who has been there, look online for views – but remember that everyone is different. Go to any open days or meetings for prospective patients and think if the clinic feels right for you. It may sound ridiculous, but it matters.

Trust your instincts, and don’t hink they don’t matter. Make sure that you have chosen a clinic that you will be happy with.

Treatment isn’t always easy, but it is certainly much easier if you are being looked after by people you like and trust.