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IVF Should Be Free In The UK, So Why Is Access So Hard To Get?

5 6 20
30.06.2020

Free IVF is under threat in the UK – and coronavirus has made it worse. The need to protect services really is urgent, which is why we’ve dedicated an episode of Am I Making You Uncomfortable? to the topic.

In the podcast, we speak about the cultural, financial and geographical barriers that prevent people from accessing IVF.

It follows a HuffPost UK investigation into the IVF postcode lottery, which found in some parts of the UK, women as young as 35 are told they are “too old” for treatment. Others are being turned away for being single, if their partner has a child from a previous relationship or on the grounds of their BMI.

READ MORE:

  • Am I Making You Uncomfortable? – Introducing Our New Weekly Podcast

Coronavirus has only exacerbated these barriers, with thousands facing delays in treatment. The response to the pandemic has, again, been inconsistent; while some clinics have reopened now that lockdown is easing, others remain shut.

Making the situation harder is the fact that IVF is still shrouded in secrecy, meaning some currently facing these challenges may not feel able to speak about them openly in everyday life.

Joining us on the episode is Seetal Savla, who tells us about her fantastic work destigmatising IVF in Indian communities, plus how she is feeling amid her current fourth cycle. We also hear from Sara Marshall-Page, co-founder of fertility and IVF magazine IVF Babble, who shares her own journey and why she’s passionate about creating a community to help the next generation of “IVF warriors”. We hope this episode provides a space for those discussions.

You can subscribe, download and listen to Am I Making You Uncomfortable? on Spotify, Apple Podcasts and all major podcasting platforms and you’ll find a transcript of our chat below, to make the podcast accessible to as many people as possible.

Join in the conversation on social media by using the hashtag #AIMYU – and go behind the scenes by subscribing to our podcast newsletter to hear what inspired us to tackle the topics you’re probably too squeamish to talk about.

READ MORE:

  • Coronavirus Cancelled IVF For These Women. Now Their Pregnancy Dreams Are On Hold

Episode 10 Transcript:

Brogan:

Hello and welcome to HuffPost’s brand new weekly podcast Am I Making You Uncomfortable? Presented by me Brogan Driscoll.

Rachel:

And me Rachel Moss. This podcast is a frank honest conversation about women’s bodies, health and private lives. We cover underreported issues and tackle topics you’re too squeamish to talk to your friends about.

Brogan:

This week we’ll be talking about IVF and specifically the obstacles people face when seeking treatment. We’ll be talking to Sara Marshall-Page from Online Fertility and IVF magazine IVF Babble and Seetal Savla who is currently on her own IVF journey.

Rachel:

You can join in the conversation on social media by using the hashtag #AIMYU.

Testimonial 1:

My wife and I have had one IVF cycle and two embryo transfers. The first transfer was to my wife who fell pregnant with twins, who sadly miscarried at 10 weeks and the second was a frozen transfer that I carried, but I miscarried at six weeks. I don’t think I can put into words the life shattering effect these miscarriages had on us. Now, I know that we both feel like mums without babies.

Testimonial 2:

Before I had my two year old son, I had two cycles of IVF one which resulted in a miscarriage. The difficulties I faced in terms of access would have been the fact that it felt like I had to really push to be able to get to that point. Practitioners that I worked with kept on pushing me to use the less invasive methods, even though all my test results were pointing to having fertility assistance treatment like IVF. I would just say that it would have been good to have people talk a bit more about what to expect.

Brogan:

So IVF is an incredibly vast topic that impacts many people in the UK in a variety of ways. Frankly, it would take more than one episode to cover everything that we wanted to talk about. So on this particular episode, we wanted to focus on the situation right now, the barriers facing those exploring or undergoing IVF and how they’ve been exacerbated by COVID-19. Rachel’s been reporting on IVF for a few years now as part of her women’s health specialism for HuffPost. I’m going to be asking Rachel loads of questions in this intro just so that we can kind of get a good overview and soak up all of her knowledge in the area.

Rachel:

Pressure.

Brogan:

Rachel. No pressure, no pressure. Tell us a bit more about what barriers are facing those seeking IVF right now.

Rachel:

So the NHS postcode lottery is probably the big one. It has been getting steadily worse over the last five years. Essentially, it means that some people in the UK can access IVF for free, some people can’t access it at all. When we’re talking about the NHS IVF postcode lottery, we’re really talking about NHS England because in other parts of the UK, the situation is much better. In Scotland and in Wales, IVF is very consistent across the board.

Rachel:

In Northern Ireland, it’s not great. Couples tend to only access one cycle, but at least there’s consistency. People know where they stand. But in England, the situation is really, really dire. And the reason for that is because in England, the allocation of health funding is decided by CCGs. Now that stands for Clinical Commissioning Groups. Essentially, the country is split up into just over 200 CCGs. And ultimately, they decide whether or not to allocate funding to IVF in your area. Obviously, private IVF is available across the country, but it’s really, really expensive. The average cycle costs five grand, it can also go up to seven, eight, nine grand, if you need other treatments on top.

Rachel:

So that option just isn’t available to a lot of people and the postcode lottery can have a really, really devastating impact. As you mentioned there at the start, the whole situation with COVID has just exacerbated the problem that was already there. A lot of people are having treatments delayed or canceled. And again, there’s been huge inconsistencies across the country, which has left a lot of people feeling really alone and really confused. And it’s a difficult thing to go through at any time, so when you’ve got those extra barriers, it just makes it that much harder.

Brogan:

I know you’ve reported extensively on women being denied IVF treatment on the NHS because of their age, which I was kind of really surprised by, perhaps naively. How widespread are those issues? And could you kind of explain them a little bit?

Rachel:

My colleague, Jasmin Gray and I analysed the latest data regarding this in February, which actually, it feels like a million years ago because of the pandemic but actually, it wasn’t that long ago at all. And at the time, we found that there are currently four CCGs in England that offer no IVF at all. Now four CCGs might not sound like a big number but when you consider the fact that each CCG represents over 200,000 people on average, it’s actually a huge number of people that impacts.

Rachel:

For example, my local CCG is Cambridgeshire and Peterborough. So anyone in Cambridgeshire and Peterborough cannot access IVF full stop. Really, that’s quite shocking. But then, as you mentioned, we’ve also got other breakdowns that happen. Age is a big one of them. So the report that Jasmine and I conducted found that there’s 20 CCGs, across England that have implemented age restrictions on IVF, which directly contradicts the official health guidelines set out by NICE and what they’re meant to do.

Rachel:

Women as young as 35 are being turned away and told, “You’re too old for IVF.”

Brogan:

It is so shocking because I’m 32 and me and a lot of my friends the same age as me, quite a lot of us are not really considering having kids yet. And so it’s quite likely that you could get to 35 or 36, 37 and find out that you might need to have IVF or might need some fertility treatment and then find out that, “you’re passed it, love.”

Rachel:

Absolutely.

Brogan:

It’s crazy.

Rachel:

Yeh absolutely. One of the most heart wrenching stories that I heard back in February was speaking to a woman who in her early 30s, she’d gone to her doctor and said, “I’m having trouble conceiving.” And her doctor said, “Oh, it can take a couple of years. Why don’t you go away and keep trying?” She went away and kept trying and came back two years later and in that interim period, her local area had cut IVF. Because she was 35, they said she was too old.

Rachel:

Now, that’s just one story. That’s happening thousands and thousands of times across the country. It’s crazy. And there’s all these other barriers as well. It’s not just age. Another one that I think is a bit of a shocker is: if your partner has got a child from a previous relationship. One woman I interviewed, she got together with a guy who had a teenage daughter with his ex-wife. Because of that, she was not allowed to have IVF even though clinically medically she couldn’t conceive without it.

Rachel:

Another really sad one is BMI. And some CCGs are saying if a woman or a man is over certain BMI they won’t offer IVF. In terms of the dad and sperm, people have said that medically that’s nonsensical. It’s so arbitrary and yet again, it’s something that’s being implemented to basically cut corners and save money.

Rachel:

Another really big problem is the trans postcode lottery. So links to all this is the fact that there is a separate postcode lottery regarding fertility preservation. If you’re a trans person and you want to store your eggs or your sperm to have treatments such as IVF or a different fertility treatment at a later date, depending on your circumstance, that fertility preservation treatment is available to some trans people and not others purely depending on where they live. And it just has such an impact on people’s lives that I can’t stress that enough.

Testimonial 3:

I know very few solo mums who have qualified for funding for IVF. NHS South East London even described us as a burden on society. I think just shows they’re out of touch with families like mine and don’t understand that it’s not what a family looks like on the outside, but love and security that are important to children. And all IVF families tend to give that in spades. There are no unwanted children when it comes to fertility treatment. I understand that the NHS is cash-strapped and desperately underfunded, but calling our family a burden is an echo from a less tolerant era. Having said that I just spent my savings a million times over on making my children.

Brogan:

Well I know that you have expressed to me about how the majority of women seeking IVF tend to be white women as well. So there’s obviously a barrier with ethnicity.

Rachel:

Absolutely. We know statistically that White women make up the vast majority of IVF patients in the UK. That is starting to change a little bit, but really is still dominated by White women. The reasons for that are so complex and there’s a lot of reasons behind it. One of the things I’ve heard from Black women that I’ve interviewed is that they simply don’t feel represented in the IVF community. Other women........

© HuffPost