IVF

Consumer Law Guidance on Self-Funded IVF - Patient Consultation

The CMA (Competition & Markets Authority) is developing new guidance for IVF clinics in the UK to make sure they comply with the law and put patients first.

They’re concerned that some clinics may be mis-selling their services or misrepresenting their success rates - but currently there is no written guidance on consumer protection law for the IVF sector at all.

The guidance will cover issues such as:

  • Price transparency: Clinics should present clear and upfront prices for their treatments.

  • Potential mis-selling of treatments: Patients should not be mis-sold ‘add-on’ treatments, which are offered by some clinics and can cost up to £2,500 per cycle.

  • Success rates: Clinics should not mislead patients about how successful their treatments are and should ensure that rates are accurate and up to date on their websites and in advertising.

  • Unfair terms: Terms and conditions should be fair and transparent.

 


Having our Say

Although all IVF treatment is currently suspended due to the coronavirus outbreak, when fertility clinics do reopen it’s more important than ever that they treat patients fairly.

The CMA wants to hear from anyone who's had personal experience of any of these issues when considering or having self-funded IVF treatment.

You can do this in 2 different ways:

  1. BPAS (British Pregnancy Advice Service) - a charity who campaigns and advocates for reproductive rights - have created a short questionnaire to collate responses to share with the CMA - which you can complete here

  2. You can email the CMA directly at ConsumerLawIVFTeam@cma.gov.uk


The deadline for submissions is 8th May 2020.

Making our voices heard

This consultation is our chance to make sure this guidance works for patients - so it’s really important that we have our say.

The CMA have left it open to us to tell them what we think they need to know - you can share as much or as little as you like. 

Whether you choose to complete the BPAS questionnaire or email the CMA directly, here are some questions that might be helpful to think about:

Pricing

  • When you were considering your options, do you feel the clinics you looked at had clear and transparent pricing? 

  • Before you began treatment, do you feel you had a clear idea about what the cycle would cost? How did this compare to what you ended up paying?

  • Do you feel you understood what was included in the cycle cost and what wasn’t? 

  • Did you experience any unexpected costs? (e.g. things that weren’t optional extras, but which weren’t included in the cycle cost - such as drugs or blood tests)

Cycle packages

  • Were you offered a multi-cycle package? (e.g. embryo-banking cycles, financial discounts or ‘baby guarantee’ package).

  • Do you feel you had enough information to make an informed decision about choosing a package?

  • Were there any criteria you had to meet to be accepted as a patient on a multi-cycle package?

Success Rates

  • When you were considering your options, how easy was it to find and compare success rates for different clinics? 

  • Do you feel clinics provided clear information about their success rates? (e.g. on their website, social media or in leaflets/brochures)

    • Did they make it clear where these figures were from? (e.g. internal clinic data vs audited data from the HFEA)

    • Did they explain what the data was measuring & why? (e.g. pregnancy rates vs live births, per cycle started vs per embryo transfer)

    • Did they provide success rates by age group?

  • Do you feel you feel you understood what factors might have influenced these success rates? (i.e. why clinics might have different results)

  • Did clinics mention the HFEA website to you as a source of impartial information?

Add-On Treatments

  • Did the clinic offer you any add-on treatments - additional tests, procedures or medications on top of your core IVF treatment? (e.g. endometrial scratch, time-lapse imaging, pre-implantation genetic screening, reproductive immunology, endometrial receptivity tests, embryo glue)

  • Do you feel you had enough information to make an informed choice about whether to opt for an add-on? 

    • If you had treatment in the last 12-18 months: did your clinic mention the HFEA Traffic Light system for information about add-on treatments?

  • Was it made clear to you that it is not clear whether add-ons work? 

  • Were the risks of add-ons clearly explained to you? (e.g. any potential health risks to you or your baby, or that certain add-ons could plausibly reduce your chances of having a baby)

  • If you decided to opt for any add-on treatments:

    • Did you have to sign a consent form?

    • Were you clear about what the add-on would cost you?

    • How did this compare to what you ended up paying?

Find out more

For more information you can check out the official CMA page about the consultation:

Gov.uk - Self-funded IVF: consumer law guidance.

We have until 8th May 2020 to have our say - so let’s make sure our voices are heard.

 

The Sunday Times Style: Selling Hope: How Wellness Cashed In On Fertility

I was thrilled to speak to journalist Sophie Wilkinson for a brilliant article she wrote for The Sunday Times Style magazine about IVF add-ons: how the lack of NHS funding has pushed women into the private market, and how the baby business is only too happy to profit from selling us unregulated add-on treatments.

I added my own personal take, which was that it's essential that we have all the facts to make up our own minds and make a truly informed decision. My wonderful consultant didn't want to sell me tests or treatments he didn't believe were of any benefit - but I was a woman on a mission and was determined to throw everything and the kitchen sink at our treatment. And I'm glad I did, even though we weren't ultimately successful.

For me it was less about believing that these treatment would help us to have a baby, but rather than I was planning for what would happen if and when we ended up with no baby - so that I knew we couldn’t look back and think ‘what if?’

However plenty of Drs and clinics aren't so scrupulous - relying on patients to check out the HFEA website & traffic light system to find out if there's any evidence base for the treatments they're being recommended.

This is simply not good enough.

How can we give informed consent if we're not in possession of all the facts?

Check out the full article here: Selling Hope: How Wellness Cashed In On Fertility

Check out the full article here: Selling Hope: How Wellness Cashed In On Fertility

BBC 5Live: The Emma Barnett Show - IVF Special

I was thrilled to appear on an IVF special of The Emma Barnett Show on 23rd April 2019, joining a group of 19 women - with over 100 cycles of IVF between us (costing over £500,000) - to share stories of heartache, hope, disappointment, strength and resilience, and give a raw and honest picture of the reality of IVF. It was a really emotional morning - but a whole lotta love in the room.

It was an honour to be able to take part in such an important discussion, with such a brilliant group of IVF warriors (my segment starts ~11 mins)

BBC Woman's Hour: IVF and the Two Week Wait

I was honoured to appear on BBC Woman’s Hour this morning to discuss IVF and the Two Week Wait with with Prof Geeta Nargund and Izzy Judd - and to then continue the discussion with (the legendary!) Jane Garvey in a bonus segment for the Woman's Hour podcast.

It was brilliant to share our insight into the deep anxiety of the 2ww from the patient perspective, which I hope will help listeners to better understand what a friend or loved one having IVF may be going through - and more generally to contribute to more open and honest public conversations about infertility.

Bonus segment

I also really enjoyed being able to discuss some of the wider issues around infertility beyond simply the 2ww in the additional segment we recorded, addressing some of the more difficult questions:

  • IVF success rates - how it's not a magic cure

  • why 'don't give up' can be a pernicious comment - as though stopping treatment makes you a quitter

  • how the language of infertility unintentionally attributes blame

  • how much of a woman's reproductive anatomy is named after men

  • how the toxic nature of infertility infects every part of your life

  • the physical, financial and emotional impact of infertility

  • why 'just adopt' isn't helpful

  • a shout out to my beloved husband who is my rock, my best friend, and my all-time favourite human

  • the importance of support from the AMAZING community of women on social media and online forums (that's YOU GUYS!)

Jane also read out some incredibly moving emails from listeners sharing their stories - they are so heartbreaking and so eloquent, and stories that deserve to be heard.

 

How to listen to the show

You can listen to the podcast below, or download via the Woman’s Hour website (click on the ‘download’ button for the full version incl. bonus podcast segment - available for 30 days only), Apple Podcasts (Ep 10th Dec 2018, IVF Waiting), Acast, Stitcher, or wherever you get your podcasts from.

The main segment is at the start of the show (13 mins), and the extra bonus segment begins @ 44:40 (10 mins):

 

Highlight Clip

Don't have time to listen to the full episode?

Here's a 3 min snippet from the broadcast

And a short clip from the bonus segment:

 

Getting ‘dildocam’ into the official Radio 4 lexicon

I’d asked the show producer whether I could say the word ‘dildocam’ live on Radio 4 (because what would a discussion about IVF be without it), and jokingly tweeted about this.

I did not expect Jane Garvey to reply on Twitter to say that it was indeed acceptable vocabulary to use on air. Good to know. 

For the avoidance of any doubt, the official BBC Radio 4 account then chipped in with official confirmation of its acceptability. 

After which occasional Woman’s Hour host Emma Barnett (who has written about her own experience of IVF in the Sunday Times) added that she was delighted to have this word available for future scripting.

Glad to have enshrined ‘dildocam’ in official Woman’s Hour vocabulary.

My work here is done!

Metro: It’s not just down to infertile couples to solve the adoption crisis

Why don’t you just adopt

My third article for Metro’s Fertility Month series examines how It’s not just down to infertile couples to solve the adoption crisis

Anthony Douglas, head of Cafcass (the public body representing children in care), said in a recent interview with the Daily Telegraph that the growing success of IVF has meant fewer people will consider adopting children:

“IVF used to be around 7% successful and now it’s around 30%.

So as a choice, adoption is competing with lots of other ways of having children.”

My biggest bugbear with the ‘it’s all the fault of selfish IVF couples’ argument (amongst many) is that it positions the adoption crisis as an issue that’s solely down to people with fertility problems to solve.

IVF isn’t a quick and easy fix either to conception, or to solving the adoption crisis - and it doesn’t help solve the latter to pretend it does.

Adoption is about finding homes for children, not children for infertile couples. And pretending that if selfish infertile couples stopped having IVF the problem would get sorted does a disservice to infertile couples, and to children in care.

This article is deliberately provocative, as I’ve tried to challenge the hypocrisies around this issue straight on - because I’m frankly fed up of the IVF bashing (and the perpetual double standards for infertile vs fertile couples.)

“Infertile couples are asked ‘why don’t you just adopt?’

To which I would respond, ‘Why didn’t you just adopt?’”

Have your say

Are you fed up of being told ‘why don’t you just adopt?’

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss.

My goal is to represent as many different perspectives as possible: if you’ve experienced infertility or pregnancy loss — whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

Metro: Why treatment for male infertility is failing both men and women

Men matter too

My second article for Metro’s Fertility Month series examines how treatment for male infertility is failing both men and women

Men are massively overlooked in the fertility experience more generally: but the inadequate care for male infertility - inadequate diagnosis, meaning inadequate treatment - is also harming women, as ICSI treatment bypasses the male problem to treat the issue in the woman’s body.

Normally I rail against articles which focus on the miracle baby success stories, but in this instance these examples - real examples, from real couples - were pretty critical for the overall argument (spoiler alert: that if treatable problems were diagnosed and treated, this might increase the chances of success, or eliminate the need for invasive ICSI altogether.) These stories are used to demonstrate tangible examples where proper care has made a tangible difference to the outcome. Which I hope will spark discussion and debate!

It’s an issue that’s woefully ignored in both public discourse and within the fertility industry itself - so I hope that this article will help to encourage more open conversations about this issue.

“Male infertility is a growing problem on a global scale — so when are clinicians going to start taking it more seriously?”
 

Have your say

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss. My goal is to represent as many different perspectives as possible — including the male perspective.

If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

There are questionnaires for both the female and male perspective — and I’d particularly love to hear more from the guys!

Nature 1: 0 Science

image by chuttersnap on Unsplash

image by chuttersnap on Unsplash

[ Originally posted on Medium ]

‘Well, Ms Lindemann, you are, without doubt, the weirdest case I have ever seen’

So said the eminent Professor and world-leading researcher in infertility and miscarriage. I was one of the thousands of women who came to his clinic from all over the country — even the world. He’d been a specialist in reproductive medicine for well over 20 years, but I was the strangest case he’d ever seen.

‘I’ve never seen what happens to your womb in humans before, only in mice.’

I’m not just infertile, I’m really really infertile.

1 in 6 couples experience infertility, but I’m the only woman in the world with a womb like a mouse, apparently.

My husband is apoplectic with rage when I’m introduced to another Dr as being ‘like a mouse’, as he (rightly) says that it’s dehumanising. I’m so used to feeling like a lab rat, I don’t even notice.

The eminent Professor says that statistically, most couples do get there eventually, with persistence (although at what physical, emotional and financial cost?)

And that from a clinical point of view, he rarely recommends that a couple stop trying for a baby because they’re a hopeless cause — that the decision to continue is one for them and them alone.

‘But, Ms Lindemann, you are a case entirely all on your own. There is absolutely no question that there is no point in you continuing treatment — your womb is simply unable to sustain a pregnancy’.

Our route to reaching the end of the road was ridiculously short and sharp. From starting trying to being told I’ll never have a baby, in just 2 years. We were doing IVF within 3 months of starting to try: anyone who says the baby-making phase is fun has clearly never gone through fertility treatment (which a friend of mine astutely describes as ‘a very expensive form of self-harm’).

Highlights of just one 12-month period include 4 IVF cycles, 3 cancelled cycles, 2 pregnancies, 2 losses and 3 surgeries (no partridge in a pear tree). Then begins the slow descent to the end, as it’s clear that whatever procedures, therapies or medications we try, things are getting worse, not better.

If anyone chips in with a well-intentioned — but desperately unhelpful — ‘have you tried…’ comment (yes, it’s great that your infertile friend was told she’ll never have children, then snorted some oregano and licked a tortoise and now they have miracle quadruplets, but that has no relevance to my situation), I bite my tongue, as I will win the ‘have you tried’ game.

Things I have tried to improve my womb include:

  • HRT (oral, vaginal & patches)

  • low doses of hormone injections

  • high doses of hormone injections

  • oral Viagra

  • vaginal Viagra pessaries at £1000 for 7 days (specially commissioned from a compounding pharmacy in Cardiff)

  • uterine washes with a drug used for bone marrow harvesting

  • blood pressure tablets

  • blood thinning tablets and injections

  • tablets used to treat breast cancer

  • many, many womb biopsies

  • surgeries

  • going on contraception (yes, a copper IUD was part of my fertility treatment)

In addition to thousands and thousands of pounds on:

  • fertility acupuncture

  • a bazillion supplements

  • red raspberry leaf tea

  • pomegranate juice

  • red meat & other ‘womb lining friendly food

  • Mayan abdominal massage & nightly castor oil packs

  • fertility reflexology

  • lots of fertility meditation & hypnotherapy.

Spoiler alert: none of this worked.

The narrative that if you try hard enough, keep going, don’t give up, stay strong and you’ll get there, that it’ll all be worth it when you have your baby in your arms, isn’t just unhelpful — it’s offensive.

(See also the ‘You can beat cancer if you fight hard enough’ narrative.)

As though if we weren’t successful, it’s because we didn’t try hard enough.

No. Just no.

I’m childless not by choice because of biology.

Nature 1, Science 0.

I might be the only woman in the world with a uterus that’s so dysfunctional it’s never been seen in humans before.

But I’m not alone in being infertile. The WHO defines infertility as a ‘disease of the reproductive system’. I am the 1 in 6.

I’m childless not by choice because I suffer from this disease. Not because I didn’t try hard enough.

This was originally published on the World Childless Week website, for the theme ‘Facts & Figure: Our Stories’, as part of #worldchildlessweek