add ons

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

Metro: The craziest things I did in the name of infertility

HAVE YOU TRIED…

My fourth article for Metro’s Fertility Diaries series is about infertility madness - the debate over add-ons, and the crazy lengths that many infertility patients go to in pursuit of trying to have a baby.

It also features a rather fetching illustration whereby I’m immortalised in cartoon form alongside some viagra tablets and a tube of fertility lube (bet this article is going to do SEO for my name a world of good!!). I’ve only just managed to work out what the disembodied floating hand is - I think it’s someone with an acupuncture needle (although maybe I do have a massive third hand and have never noticed)

As you’ll know if you’ve ever experienced infertility or pregnancy loss, another infertility bingo classic is ‘have you tried….’ (usually followed by either ‘blatantly obvious suggestion’ or ‘miracle woo healing therapy that their sister’s neighbour tried’)

If a well-meaning-but-clueless friend/colleague starts the ‘have you tried…’ game with me, whilst very well intentioned, I inwardly take a deep breath, as I’m thinking ‘mate, I promise you I WILL win the ‘have you tried?’ game!

This article is a light-hearted look at some of the crazy lengths that I - and a number of other women (it’s not just me who’s lost the plot) - went to in the name of infertility. This is just a highlight of a long list of wacky infertility adventures - safe to say there’s a lot more where those came from!

Including such highlights as:

  • me pretending to be a middle-aged man with erectile dysfunction on the internet

  • my (short) career as an international drug trafficker

  • blessings by a Buddhist monk with a wooden phallus in the mountains of Bhutan 

  • a litany of fertility woo therapies

  • a whole host of other women's mad infertility adventures  



HAVE YOUR SAY

Are you fed up of being asked ‘have you tried’? What’s the craziest thing you’ve tried during your infertility journey?

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.