Have Your Say - Official Consumer Law Guidance Consultation

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Earlier this year I posted about the development of new consumer law guidance for IVF clinics in the UK, to make sure clinics treat patients fairly.

The draft guidance has now been published and we now have the chance to have our say.

The important bit

You can scroll down for all the info about what the guidance is, what it’s for, the consultation as a whole - but I’m putting this at the top cos this is the bit that really matters - making sure the guidance works for us.

The detailed guidance is aimed at fertility clinics - so I asked the CMA what they most wanted to understand from patients.

Ths easiest way to take part in the consultation is to fill in this questionnaire and I’ll collate all the answers into one submission.

Please submit your answers by no later than Sunday 3 January 2021

Patient Questionnaire

 
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Everything else

What does the guidance cover?

The draft guidance [pdf] sets out what information clinics should provide to patients and when this should be provided.

In order to comply with consumer law, clinics must not provide misleading information to patients or fail to provide all the relevant 'material' information they need to make informed decisions.

It also explains what clinics should do to make sure their terms and practices are fair under consumer law.

It’s intended to address problems such as:

  • patients being unable to compare clinics' prices because some clinics present misleadingly low headline prices

  • some clinics providing misleading information about their success rates

  • some clinics not informing patients about the limited evidence base for certain add-on treatments or their associated risks

  • some patients being faced with unexpected additional costs during treatment

What does the CMA want to know?

The CMA want to hear from anyone with knowledge of the fertility sector - including patients - so they can take can our views and expertise into account as they finalise the guidance.

They’ve published a consultation document [pdf] with a series of questions to consider, such as:

  • asking for views on the information that patients need at various stages to make informed decisions about which clinic to choose and which treatments to buy

  • inviting further examples of practices, policies and terms used by fertility clinics in their dealings with patients that raise concerns from a consumer law perspective

  • seeking views on the scope of the guidance and whether there are aspects of the guidance that could be clarified.

Take part in the consultation

Questionnaire

Ths easiest way to take part in the consultation is to fill in this questionnaire and I’ll collate all the answers into one submission.

Please submit your answers by no later than Sunday 3 January 2021

Email

Alternatively, you can email your thoughts to ConsumerLawIVFTeam@cma.gov.uk by no later than 5pm on Tuesday 5 January 2021.

Find out more

For more about the consultation please check out the CMA’s website.

Beat Infertility Virtual Summit

““Don’t give up.” “It’ll happen for you.” “You’ll get there.”

How often have you been told this? Except not everyone does get there - so why is it somehow unacceptable to say this out loud? Our collective unwillingness to entertain the notion that not every journey ends with a baby makes it so much harder to deal with if it happens to us.

I’ll talk about why we need to acknowledge the elephant in the room, & how talking about the possibility of a childless future can help you cope with all different outcomes.”

I’m thrilled to take part in the 2nd Beat Infertility Virtual Summit: taking place 1-7 November 2020, it features over 90 talks covering a range of different topics relating to fertility & infertility - mine being part of the ‘Childless Not By Choice’ stream.

Unlike lots of the talks from all sorts of professionals, mine doesn't have advice about how to get or stay pregnant - but I hope it provided an honest perspective from a patient point of view to help anyone facing a difficult journey feel less alone.

Titled 'What Happens If It Doesn't Happen?', it’s a frank conversation about why & how we can support ourselves and each other by talking about ALL outcomes. "You'll get there" is true - but "there" might not look like how you thought it might.

"There" might not mean a baby, or a baby in the way you'd hoped - but you will get there, and you will be OK.

BioNews Review: The Golden Egg

I was asked by BioNews - the flagship publication from the Progress Education Trust (PET) - to review The Golden Egg, a podcast which looks at ProFaM , the controversial new venture that offers ovarian tissue freezing to postpone the menopause. It asks the question: how did we end up here? It examines the pushing of boundaries between scientific advances and the ethical questions they raise, and the redefining of boundaries of who can procreate and how.

Moreover, it observes that amongst all this boundary-pushing, a lot of people made a lot of money: from the birth of Louise Brown, the world's first baby born through IVF, in 1978 to a global industry expected to be worth $40bn by 2027.

It’s a really thought-provoking listen, and I’m delighted to have got the opportunity to express some frank and honest views in my review - from IVF add-ons to fertility MOTs and egg freezing, to the medicalisation of women’s bodies to fix societal problems (and lots of men getting very rich off the back of this).


Read the review

BioNews: Podcast Review - The Golden Egg

Listen to the podcast

You can listen for free online, Apple Podcasts, Stitcher or Spotify.

More from this series

This podcast is part of Tortoise Media's Big Egg' series, a really brilliant investigation into the dark side of the fertility industry (full disclosure: I was interviewed for Egged On, a piece all about IVF add-on treatments). Tortoise is members-only, but you can sign up for a free 30-day trial for access.

TWGGE - The Worst Girl Gang Ever Podcast

Thank you to Bex & Laura from The Worst Girl Gang Ever (TWGGE), for having me on their podcast to talk about miscarriage and pregnancy loss during Baby Loss Awareness Week 2020.


We had a blast putting the world to rights with a LOT of swearing and laughter (and a most excellent rant about the well-known fertility cure of unicorn piss), as well a frank and honest conversation about the missing stories of those women & couples whose journeys *don't* end with a miracle rainbow baby - and the all-important question 'Will I be OK?'
.
Ours is a club that none of us asked to join, but it means the world when you can speak to other members of that club and know you're not alone.

Check out the episode in the player below, or listen via Apple Podcasts, Spotify, or Buzzsprout

Reproductive Technologies Network

What it is

Thanks to Prof Joyce Harper for inviting me to attend the annual meeting of the Reproductive Technologies Network - I learned SO much, and it's such an honour to be able to represent the patient perspective in a forum like this.

Convened by the Reproductive Science and Society Group at the Institute for Women's Health, UCL, the aim of the meeting is to bring together a multidisciplinary team of people working in Assisted Reproductive Technology) - including academics, clinicians, industry bodies (such as the HFEA, Donor Conception Network & the Progress Educational Trust) and patient representatives (that’s me!) to discuss research on topics such as IVF add-ons, patient support, egg freezing, donor conception, fertility education and FemTech, and identify opportunities for collaboration.

Why it matters

Fertility isn't just medicine - it's an industry. We're not just patients - we're consumers.

We're not just undergoing medical treatment - we're being sold services.

We need evidence-based treatment and support, and the information to be able to make genuinely informed decisions about what's right for us - which is why independent research that's NOT driven by commercial motivations is so, so important.

As a patient, it's so heartening to know that there are so many incredibly smart people fighting our corner - and I hope I can make a difference by having a seat at the table.

Misunderstandings Of Miscarriage

1 in 4 women experiences a miscarriage in their life.

I’m one of them.

And I’m proud to have taken part in a fantastic documentary with so many other brave women who are also members of the same club.

Misunderstandings of Miscarriage (MuM) explores the physical, emotional and psychological impacts of miscarriage, and aims to open up a conversation to normalise pregnancy loss and help women to know they don't need to walk this path alone.

I'm so so thrilled to have been a part of it - and to have been given the opportunity to represent the perspective of someone whose journey didn't end with a rainbow baby.

At the moment it's only available in Australia (on streaming service Stan) - but has recently been picked up for international distribution - so watch this space!

In the meantime to find out more please do check out the trailer below, the MuM website, and this review in the Sydney Morning Herald.

 

60 Mins Australia: The Baroness of Barrenness

Last year I filmed an interview for Misunderstandings of Miscarriage, an Australian documentary that explores the physical, emotional and psychological impacts of miscarriage, and aims to open up a conversation to normalise pregnancy loss.

In the run-up to the film’s premiere at the start of Baby Loss Awareness Month, 60 Mins Australia broadcast a feature about pregnancy loss entitled Angel Babies - which I was honoured to take part in.

The full episode is only available to view in Australia, but the network put my bit up on social media (which at least meant I could check if I’d said anything completely idiotic!)

I was relieved to find out that (apart from learning that you need to put WAY more powder on for telly makeup than I thought, hence the mega shiny face) I didn’t disgrace myself on national TV - and mega chuffed to discover that the network had titled the segment ‘The Baroness of Barreness’ (and written a really nice intro blurb!)

Katy Lindemann is a UK blogger and writer who is in high demand as a commentator on pregnancy loss. She had two miscarriages before doctors told her she’d never be able to carry a baby to term. Where others might disappear into shame and grief, Katy has taken on the taboos of miscarriage, laughing at some of its worst myths and tells 60 Minutes reporter Tara Brown she’s on a mission to reclaim the word ‘barren’.

60 Mins: The Baroness of Barrenness, 28 September 2020

You can watch my interview clip above - but for an interesting take on the whole episode, Isy Oderberg has written a great piece on her blog Hard to Bear that’s definitely worth checking out too.

And for more about Misunderstandings of Miscarriage do check out the trailer here - I’m so, so proud to be a part of an actual film, and can’t wait till it’s available outside Australia* so I can show my family.

*and if you ARE in Australia, the doco is available on Stan from 1st October 2020!

The Fertility Podcast: What Is Asherman's Syndrome?

I was honoured to guest present an episode of The Fertility Podcast to chat with Emilie Jones-Ransley about our shared experiences of infertility struggles as card-carrying members of ‘The Thin Lining Brigade’.

Emilie shared her experience of Asherman's syndrome - a (rare but devastating) complication of miscarriage surgery, the trials and tribulations of struggling with womb lining issues, and her journey through IVF and surrogacy, as well as discussing the facts and hacks about dealing with tricky lining from the patient’s point of view.

The second half of the episode is an interview with Dr Adrian Lower, an 'A lister' in the Asherman's world (and Emilie's consultant) to discuss Asherman's syndrome from the clinical perspective - to help you better understand how it is caused, how it can be diagnosed and what you need to look out for.⠀

You can listen to the podcast using the player above, or on Apple Podcasts, Google Podcasts, Acast and Spotify.

For more information and links to relevant resources, check out the episode show notes.

BioNews Review: All Our Eggs

“Letter to a bunch of cells:

There is a tsunami of love waiting for you out there. Hope you’re comfy in there. I want you to know this uterus has never been used by the likes of you. You’re the first. You should feel very, very special.

P.S. Please hold on tight

Love Mum xx”


I was asked by BioNews - the flagship publication from the Progress Education Trust (PET) - to review the absolutely fantastic All Our Eggs: an Australian drama micro-series about a woman's struggle with infertility, delivered via 90-second episodes on Instagram, TikTok & YouTube.

It’s a brilliantly honest depiction of the emotional rollercoaster of infertility (check out the pilot episode below) - and its interactive format is a really innovative way of directly involving the fertility community in the story itself.

To find out more you’ll have to read my review, - but I’d urge anyone who's going through, or has been through, their own infertility journey to watch, read and participate in All Our Eggs - it'll help you feel less alone

Find Out More

BioNews Review: All Our Eggs

All Our Eggs Website - Instagram - YouTube

Tough Love: How to Survive and Thrive with medical infertility

I had the honour of being interviewed by my dear friend Federica Leonardis, who has started a new podcast called Tough Love, where she brings together stories that tell people that life after trauma is possible.

Whether that’s as a victim of circumstances or of the malice of others, this podcast explores how you can still have a marvellous life:

Have you ever wondered how, after tragedy hits, some people are able to move forward and thrive? In each episode of Tough Love, I'll interview a guest who has been through a traumatic experience such as medical infertility, divorce, abuse, the loss of a spouse, addiction, anorexia, a cancer diagnosis, a prison sentence. I will listen to their story and ask questions. I'll concentrate on the strategies and the daily habits they implemented that helped them rebuild their life and move beyond trauma. Tough Love celebrates human resilience, the amazing strength people display every day to live through what life has put in their path and move forward with courage and integrity.

How do you come to terms with the loss of something you never had? In this episode, we spoke about my journey through infertility and pregnancy loss, about the tyranny of hope, the healing power of dark humour and why sometimes hell really is other, well-meaning, people.

You can listen to the show online, on Spotify or Apple Podcasts - and do check out the other episodes for some incredible insights into a wide range of devastating and challenging life experiences.