IVF fairness on the NHS - petition and campaign to end the IVF Postcode Lottery

[EJStrange]

Hi All

I've started this thread as I've set up a campaign to end the IVF postcode lottery on the NHS and I need your help with to get signatures on and share the parliamentary petition link below. It's not right that something as arbitrary as postcode should dictate the treatment we receive for infertility on the NHS. I started the campaign as I had to cancel a round of treatment halfway through when my GP misinformed DH and I that we could have 3 rounds of IVF on the NHS. As you can imagine, we were devastated. 3 months ago (after a year off due to depression) we paid to restart that round privately, but sadly my pregnancy ended in MC at just shy of 8 weeks.

The campaign has backing from Fertility Network UK, IVFBabble, The Dovecote.Org, and my MP Layla Moran who will be submitting an Early Day Motion to Parliament about this next week (Sept 2019).

The petition runs until Feb 2020 - please show your support for the campaign below, sign and share widely so we can get this issue heard. I'm very open for ideas about how to keep pushing this forward so do feel free to post these below!

If you're interested the campaign is also on Facebook and Twitter @IVFfairness.

petition.parliament.uk/petitions/266747

I am so sorry for your miscarriage

It might be worth putting in some statistical analysis and forensic financial analysis into your petition, so people can see how what you are proposing could work. At the moment there is flexibility by CCG, and the ability to suspend offering IVF, because the income and debt levels vary massively. There was a horrendous but fascinating article in, I think, New Scientist recently about how more CCGs are pausing IVF with no restart date as they cannot fund it, which has been approved despite the advice about three cycles... so I'd share the same concerns as the others that forcing a change in the wording could harm everyone rather than benefit them. I understand that for you, you'd rather it was fair even if you lost two potential cycles in the name of fairness, but I'm not sure everyone in your situation would - especially if private IVF isn't an option for them, or if fairness means nobody gets a cycle.

Good luck for the future, I really hope things go well for you.

@AnneLovesGilbert 'OP this does read like you expected 3 cycles because your GP misinformed you and found out it was only one so you don’t want others to get three.'

I mean, the existence of the postcode lottery means that this kind of confusion can happen AND THAT EVEN OUR GP WAS CONFUSED BY IT. Isn't that outrageous? Don't you think this deserves addressing?

@Dollywilde Thank you - well said.

Hmm.

OP do you know why some areas offer fewer rounds? Is it because of some arbitrary decision that’s set in stone irregardless of changes to funding? Or is it because areas differ in terms of what other demands there are on public money?

Off the top of my head, if there are two different areas, one of which tends to have a high level of social deprivation and therefore a greater proportion of people needing treatment for obesity and smoking related conditions, and another area doesn’t have as much of that specific drain (a smaller proportion of those patients), do the areas with greater demands for funding for specific issues therefore say they offer fewer rounds of IVF because there just isn’t the money for extra rounds as more money is spent on patients with obesity and smoking related conditions?

Sorry, I’ve worded that terribly. Just wondered what the logic was behind disparity in number of attempts offered or if there isn’t one.

I agree with you that it ought to be equitable across the board, it’s shocking that someone in one post code is eligible for a different standard of care, less in line with clinical guidelines, than someone a few streets down. I think a lot of people assume the NHS is one big entity rather than an idea comprised of lots of individual entities (trusts) so they’re surprised when the treatment offered is different from one area to another. Though another part of me thinks that trusts have to take into account the area specific demands on funding when deciding what ‘extras’ they can offer (non lifesaving treatments like IVF compared to cancer treatment for example: I don’t know anyone who’d argue that someone with infertility should be treated over someone with cancer if there isn’t enough money to do both).

I’m also torn on whether or not IVF should be offered on the NHS at all, I see the argument that it’s treating a health condition, infertility. But at the same time I don’t believe the NHS can be all things to everyone and I think it’s groaning currently partly due to lack of funding but also because it wasn’t ever intended to provide absolutely everything to everyone. We accept that we pay for optical and dental services, I can see the argument for not providing IVF on the NHS.

It’s such a complex topic, I won’t be signing as I clearly don’t know enough about the current situation and rationale for it to feel confident in putting my name to a petition.

Any suggestion that the NHS cannot provide this is, I'm afraid to say, a lie.

So show us where the money is. Because all the Trusts running at a deficit would love to know!

I have signed op. I am extremely lucky that i had nhs funded ivf. At the time my local nhs trust offered 3 cycles (they don't Offer any now). I only needed 1 in the end and have a healthy dc. We only have 1 child and although can now afford to fund privately I don't want to push my luck! Both dh and I are now higher rate taxpayers, we have never been in hospital - apart from when I gave birth, are healthy, don't claim benefits etc. The amount that it would have cost the nhs then we have more than paid in our very high taxes. Infertility is a disease and should be treated as such.
Good luck op

I agree with you OP. I think unless you have experience infertility you can’t understand the mental anguish it causes. I’m really sorry about your miscarriage. I also agree it shouldn’t be a postcode lottery, so I will be signing. You certainly don’t sound naive to me, sounds like you have lots of experience. Good luck.

I don't want to sound insensitive, but I think we're lucky we've even got it funded at all.

In no way is infertility comparable to cancer treatment. Nobody chooses cancer, but many people experience infertility because they chose to wait to TTC. Just in my experience, the people I know who are seeking IVF are doing so because they couldn't find a partner, career focused etc.
Everyone's fertility declines with age, that's nature, so although some people do have a genuine problem like PCOS, for others it's more of a social problem.

Chug said that I agree with whoever said it should be all or nothing - the postcode lottery is completely unfair.

I think the discrepancy certainly needs explaining OP and if you reach the required number of signatures the government has to respond so I wish you luck.

Whether they use that as a chance to justify the decision making process you’ll have to wait and see but in my area they just said they couldn’t afford it at all and so it’s gone. Awful.

But if they tried to bring it back and they’d face a lot of questions about the knock on effect on other conditions and treatments - when it was argued on the radio at the time it was hip replacements for people who are already here vs ivf to possibly make more people. I don’t agree it’s as simple as that but with finite resources the CCGs are under immense pressure to be all things to all people.

Sorry OP I won't be signing. Whilst you say infertility is a disease it's not life threatening like cancer. It's also not accurate to say it will prevent MH issues as the individual may experience PND or depression/anxiety as well as having a child.

I'm sorry for your pain, I too have experienced MMC and fertility issus but I have to agree that othet treatments are more of a priority.

There simply isn't the money and the introduction of this would be to the detriment of existing services. Its a shitty unfair situation but that is the reality.

Positive vibes only please

Ah OP, if you want people to take your petition seriously you can’t just dismiss civil and polite constructive comments or challenges/criticisms like this. I’m so sorry for your miscarriage, but if the fact that it was so recent means you’re unable to properly defend and discuss the issues in your petition might I suggest waiting for a while and then coming back to it maybe? You’re not gonna win people over if people are afraid to challenge or discuss.

I work in the NHS and have some indirect dealings with the fertility service. It is horrible to see a couple referred in to our hospital and be unable to access ivf because of where they live, whereas a similar couple who live half a mile closer can. It simply isn't fair.

The difference with treatments for many other conditions us that you can ask to be referred to another hospital where the wait may be shorter etc.

Obviously, like any normal person, I would never want the NHS to fund IVF above cancer treatment but it's the inequality of the current situation that gets me

“Obviously, like any normal person, I would never want the NHS to fund IVF above cancer treatment but it's the inequality of the current situation that gets me”

Agreed @pleasesirmygoat

I’m very happy to have a debate about whether IVF should be provided on the NHS, but I can’t think of a defence for the postcode lottery for any treatment.

Have to agree with Bongo there are many vital services that are woefully underfunded at the moment. There just simply isn't the money to fund everything.

More resources are needed in cancer treatment, elderly care, A&E resources, the list is endless. This just isn't a top priority as unfair as it seems.

I think the push to implement parity in treatment will result in IVF treatment being removed all together from the NHS. This just isnt the time to be pushing this issue when the NHS is literally breaking down.

I could see an argument for funding IVF and not cancer treatments actually.

I’m not sure why Joan who smoked 40 cigarettes a day for the last 30 years despite knowing smoking is linked to cancer should get free at point of use care; when Lucy who is infertile through no fault of her own should have to fund infertility treatment.

Note. I’m not arguing for a race to the bottom here. I think Joan and Lucy should both have treatment. I’m just querying why we think Joan is more deserving in my fictional example.

'many people experience infertility because they chose to wait to TTC. Just in my experience, the people I know who are seeking IVF are doing so because they couldn't find a partner, career focused etc.'

@babbez I'm sure you didn't mean this to sound this way, but saying that people chose to wait because they couldn't find a partner, is a bit mean. If I'd just wanted a baby I could have tried to get pregnant via a one night stand in my 20s but I wanted a proper relationship to bring a child into which, in my opinion, is the ideal scenario. I didn't meet my husband until I was 29 and discovering infertility meant I needed IVF and eventually gave birth at 34. It wasn't a 'choice.' If I could have met DH 5 years earlier than I did things might have been different for us.

Not wishing to be harsh, but I’m not sure that someone who has only just experienced a loss is in the right place emotionally to talk about the fairness (or lack thereof) of IVF treatment.

And the comparison to cancer is only going to get people’s backs up.

Personally I don’t believe iVF should be available on the NHS at all, because I believe that the NHS is for saving existing lives, not creating new ones who may also then require life saving treatment at some point.

I mean imagine someone having a baby with IVF and that baby then developing cancer. Should the baby be less entitled to cancer treatment than the mother be entitled to another round of IVF to have another baby?

The NHS only has minimum resources. I have had life saving treatment recently, not through any lifestyle issues of mine etc, and I don’t believe that I should potentially be left to die because someone else wants to have a baby. Sorry but no, I won’t be signing.

@NoCauseRebel one could also argue that people who have conceived easily and therefore never been faced with the choice of having IVF or remaining childless are in the best place to talk about the fairness or lack thereof of IVF treatment either. I'm not saying you are one of these people as I obviously have no idea about your history, just making a general observation.

But I do agree that comparing it to life saving treatment isn't always the best route to go down and I hope that you're ok now

@Ginger1982

I really don't mean to be insensitive but i don't think that's a health problem. As I said, everyone's fertility declines with age, that's nature and yes - some people experience premature infertility - but generally, it's age related as few teens have trouble falling pregnant when they have unprotected sex. Of course you don't want to get pregnant from a one night stand etc but that's not a health problem if you didn't find the right partner til later on. Not having kids is not a medical necessity, it's a lifestyle choice, if we're being honest (although arguably a mental health necessity for some🤷‍♀️).

I have nothing against IVF funding as long as it's not at the expense of other live saving/altering treatments. (Another thing I would say is few people are able to afford cancer treatment without the NHS but many people can afford IVF which is much cheaper in comparison.)

@Ginger1982 I have had problems conceiving in the past though and while I was lucky and able to conceive one child I wasn’t able to due to secondary infertility but I didn’t want to go the IVF route for various reasons and DS is an only child.

But tbh I would argue that someone who has had fertility struggles is precisely the wrong person to be campaigning for this because their justifications are purely emotional and it is something which can be impossible to be objective about if you’re too close iyswim.

Note. I’m not arguing for a race to the bottom here. I think Joan and Lucy should both have treatment. I’m just querying why we think Joan is more deserving in my fictional example.

...maybe because one disease is life threatening and the other isn't?

@NoCauseRebel I take your point and see where you're coming from.

@babbez I would agree that it isn't a health problem and can be considered a lifestyle choice, though had I been unable to have my son I think my mental health would definitely have struggled as a result.

I also agree if there is a choice between funding IVF and funding life saving treatment then the latter should of course take priority.

My issue tends to come when people who have easily conceived and never been through what I and many others have been through, mentally and physically, effectively say that people like me should be denied the opportunity to attempt to have children when our infertility is through no 'fault' of our own.

We were fortunate enough to be able to self fund our IVF but I know there are many couples who are not in the same financial position.

Well said @Ginger1982

I had nhs funded ivf at 27. Got married at 25, owned my own home etc. Only discovered that a childhood illness had caused me to be infertile. I'm extremely grateful I did get nhs funding. I was also very lucky that I got pregnant on the first go. I didn't wait to conceive, I did everything the 'right way' and still I was caught out.

I work for the nhs and there's money for lots of things- cosmetic surgery that isn't life threatening. A friend of mine had her ears pinned back because she was unhappy with how they looked. Absolutely fair enough but I don't see how that person was more deserving than me.

I totally agree that if it came down to it then life threatening conditions should be treated first, but let's not pretend that this is all the nhs does. One of the biggest costs to nhs is diabetes care, caused in the majority of cases due to lifestyle choices and obesity.

Majority of people on this thread have not experienced infertility. Yes I could have saved up and paid myself but my biological clock was ticking and I didn't have time. Who has 10k sitting somewhere to pay for ivf 'just in case' they discover they have fertility issues. Not many I'm sure.