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IVF - funding declined...

(90 Posts)
Dot457 Wed 06-Nov-19 20:51:51

Hi all. Wondered if anyone had been in a similar position and could offer advise please? We had a cycle of IVF back in March on the NHS. We live in Leeds/Wakefield area (UK) and are only entitled to one round, despite the NICE guidelines saying everyone is entitled to 3 (don't get me started on that) unfortunately we only got 4 eggs, and only one fertilised without abnormalities. We had an early miscarriage and once we had got our heads around this we got in touch with our local MP and she advised us to write to the CCG to ask for an individual funding request. This was about 2 months ago now and we have been informed tonight that we have been declined for extra funding or any kind of funding. I have numerous fertility problems, will never conceive naturally and I have basically been told that it's a now or never type situation. Getting really stressed out now on how we're supposed to afford IVF without getting our selfs in debt? We both have decent jobs and have mortgages and cars, but obviously around the 10k mark isn't easy to come by and have no choice but to pay for something that isn't in our control?! Me and my partner are always happy to pay our way in life but a bit of help financially with this kind of thing would obviously help the stress levels on top of an already stressful time. I really am at my whitts end and would really appreciate any kind of advice? Thanks in advance xx

itwasalovelydreamwhileitlasted Wed 06-Nov-19 21:24:34

Unfortunately i think you'll need to prepare yourselves that it will be bad news - there are only a handful of CCG that offer 3 NHS cycles - some areas don't offer any at all now even though NICE suggests 3. I've only ever known anyone to win an appeal if there were significant failings in their treatment which contributed to the cycle failing (eg not getting any to transfer) - as you got to transfer they'll say there was nothing wrong with your treatment

There are lots of funding options out there now for IVF and interest free loans and payment plans offered by clinics. You could also try natural or mild ivf which is only £3k.
We remortgaged but have also looked at 5 year loans (repayment £250 a month)
The monthly cost is considerably less than the cost of raising a child when you factor in loss of income if you give up work to be a stay at home parent or the cost of childcare

AliceAbsolum Wed 06-Nov-19 22:26:06

This is why everyone goes abroad. sad

NotYourHolidayDick Wed 06-Nov-19 22:29:29

In the gentlest way, the NHS can't afford to give people numerous cycles.

Having a baby isn't a right. They need to spend their money on treatment for people who have been born already.

I know it absolutely sucks. But £10k is far less than the cost of a child.

<runs and hides>

JeNeBaguetteRien Thu 07-Nov-19 08:26:18

I'm going abroad Alice, to Spain, it's not cheaper but I believe (hope) the technology is a bit more advanced, and also where I am in the UK I don't have much choice of clinic.

Dot I have got interest free credit cards to cover the cost of IVF plus flights, hotels, etc. so I have 2 years to pay it off.

Not the NHS pays for lots of things that could be avoided if people made different lifestyle choices. NICE guidance is for 3 cycles. I understand the funding issues but people will think they have a hope.
And yes a child costs more than £10k but if you're unlucky enough to have fertility issues you've got to find that £10k before you start, and is only for a chance at having a child.
Many many people would struggle with that, just that some are blessed with being able to have children easily.

Obviously no one said life was fair.

Twickerhun Thu 07-Nov-19 08:33:06

We weren’t allowed any funding due to DH already having one DC.
We went overseas. For less than 10 k including drugs and travel we now have two DCs aged 1.5 and 3 from one round of ICSI and a FET.
It sucks hope you find a solution that works for you. I love that we have the nhs and I do accept that hard choices have to be made

theemmadilemma Thu 07-Nov-19 08:39:30

I was in the in same position as @Twickerhun in that my exH had a child from a previous relationship therefore I was not entitled to any NHS IVF treatment.

Now with my current Partner I'm too old for treatment on the NHS.

Scarlett555 Thu 07-Nov-19 08:44:55

I'm sorry you weren't successful. It doesn't have to cost £10k though, you could look into places like the Stork Klinik in Denmark (very good reputation) that offers IVF packages for less than £3k. Flights are cheap.

The system isn't fair unfortunately. As a same sex couple DP and I get get zero funding but a straight couple with male factor infertility could get up to 3 rounds on the NHS. It's just one of those things and rather than fight the system I advise you to focus on finding a clinic you can afford.

GrumpyHoonMain Thu 07-Nov-19 08:45:27

How old are you? There are clinics and finance programmes that offer unlimited cycles for a low set price for women below a certain age

dietcokemum Thu 07-Nov-19 08:46:52

You were poorly advised to apply for an IFR. I sit on an IFR panel and it is a mechanism for dealing with exceptionally rare medical conditions. An IVF request would likely have been bounced at the triage stage and not even made it to the panel.

ItStartedWithAKiss241 Thu 07-Nov-19 08:49:56

I don’t think you will ever regret going into debt to have a child x

BoomBoomBoomLetMeHearYouSay Thu 07-Nov-19 08:57:41

@NotYourHolidayDick no having a child is not a right but neither is drinking alcohol or taking drugs or eating unhealthily or many other things that results in the NHS having to pay out. I presume you have children already?

OP do you know the reason for infertility? If you watch all the Robert Winston stuff he says that frequently IVF is not really appropriate and what is more appropriate is to treat the cause of the infertility (if possible). Just wondered if you could do more testing etc to try and find out what the specific issue is. RW says “unexplained” frequently just means “not fully investigated”

FrankUnderwoodsWife Thu 07-Nov-19 09:03:30

As someone who never applied for ivf on the NHS but had multiple rounds privately, you are being incredibly entitled. You had one round funded by the state. Unfortunately it didn’t work. It sounds like you have the financial means to pay for yourself, but you just don’t want to.
Having a child is a choice. Being diagnosed with cancer or having a stroke isn’t. The NHS has to prioritise treatments and I wholly support that.

shazzz1xx Thu 07-Nov-19 09:28:17

Hi
I’m from Leeds and they would only allow me 1 cycle on the NHS.. but yet they were people there from Manchester and was allowed 3 cycles on the NHS.. it’s disgusting and so unfair...

I had IVF ( ICSI ) due to male fertility (really low/poor sperm)

my first cycle last year resulted in 5 eggs only 1 fertilised.. transferred that one 3days after and it was successful but we miscarriaged at 10 weeks.. no eggs left so had to start another cycle 2month after my miscarriage and it cost £5000 we got the same outcome at egg collection only 5 eggs retrieved and only 1 fertilised.. so we transferred it again 3 days after and ive just got my baby girl 🥰 she’s 10 week old... July 2019... don’t give up..
Good luck for the future ❤️

shazzz1xx Thu 07-Nov-19 09:30:23

She’s 14 week now.. also i stayed with the NHS for the 2nd cycle just because they are the cheapest and they already had all my info and results

GrumpyHoonMain Thu 07-Nov-19 09:31:06

@ FrankUnderwoodsWife - having pcos, a clotting disorder or thyroid problems (none of which the NHS treat women for routinely unless there’s a severe fertility problem) isn’t in a woman’s control either. If the NHS did treat women’s health more seriously poorer women with problems like mine wouldn’t need ivf in the first place

NotYourHolidayDick Thu 07-Nov-19 09:36:38

The world is already overpopulated and we can't sustain it as it is. The priority surely has to go to people who are already alive. I've watched my best friend fight for her life as the treatment she needed was £35000 and NHS couldn't fund it. It was literally life or death. Fortunately we managed to get money together to pay for it, but it involved remortgaging and equity release.

It's not ideal, and being childless is no fun, but if OP has 'decent jobs and mortgages and cars' then I think she's being incredibly brattish and needs to take responsibility and fund herself.

itwasalovelydreamwhileitlasted Thu 07-Nov-19 10:05:31

The priority should goes to those with a medical condition - cancer survivors who had to freeze eggs/sperm, those that had to have tubes removed - IVF shouldn't be available to anyone free if they have made a lifestyle choice to leave having children until mid thirties and beyond - unfortunately we have to take responsibility for our decisions in life (but I do think sexual health/education should make it clearer to young people the implications of their lifestyle choices - leaving conception to later in life has consequences)

BoomBoomBoomLetMeHearYouSay Thu 07-Nov-19 10:06:11

@Not slow hand clap at calling a person struggling with infertility brattish

As I said, take it you already have children?

Why is it ok to spend NHS money delivering babies for people lucky enough to conceive without assistance but not ok to give those struggling with infertility a helping hand (in line with guidelines)?? She’s not asking for 9 rounds or something - she’s asking for 3 in line with guidelines. If you read anything at all about IVF you need to be prepared to do 3/4 rounds to have a good chance of success (the chances of success are so low).

If having children is not a right but a choice why should anyone having children at all get any free care from the NHS (including dental care FFS). Being pregnant isn’t an illness after all!

BoomBoomBoomLetMeHearYouSay Thu 07-Nov-19 10:08:47

Oh do fuck off the person going on about lifestyle choices. You have no idea why the OP can’t conceive - she hasn’t said her age.

Personally I thought I was going to have children early 30’s but was basically jilted at the alter. Sorry but that’s not a lifestyle choice, it’s very very bad luck. I didn’t get over the emotional damage and meet someone else till late 30’s. That’s not a fucking lifestyle choice.

PurpleDaisies Thu 07-Nov-19 10:09:35

Duck of this thread and out of infertility @NotYourHolidayDick

It’s not the place for this argument. Go start your own thread in AIBU.

Dot457 Thu 07-Nov-19 10:15:08

Hi everyone. itwasalovelydreamwhileitlasted, AliceAbsolum, NotYourHolidayDick, JeNeBaguetteRien, Twickerhun, theemmadilemma, Scarlett555, GrumpyHoonMain, dietcokemum, ItStartedWithAKiss241, BoomBoomBoomLetMeHearYouSay, FrankUnderwoodsWife. Thank you all for your replies, advice and comments. Some are obviously appreciated more than others haha. (Have to be light hearted about these kinds of things!) The last comment from FrankUnderwoodsWife I think is a bit heartless if I'm completely honest. I never "applied" as such for a round on the NHS.

To give a bit of background. I have no tubes and only one ovary, I have half a womb, PCOS and endometriosis in numerous places. I had an operation last year and when I woke up they advised it's a now or never type situation and if I ever want a family they advise IVF asap. IVF is the only way for me, (conceiving naturally would never be an option due to the above.) They basically put me through the process straight away. And they were more than happy and helpful throughout the whole process. My question was merely just a general wondering if there was anything else people have done before getting in debt. I am 26 years old and have worked since I was 15. I have paid my way so far, and not one of these people who takes advantage of the NHS and the great service they provide. Yes having a child is a choice of course, but bringing Cancer and a Stroke into this is a bit unnecessary if I'm honest as it's not even a comparison. I agree with the NHS very much. My partner is from Blackpool, if we had chosen to settle down in Blackpool and have a life there, then we wouldn't be in this position now as they are entitled to either 2 or 3 rounds on the NHS... where we live now we are entitled to one. The whole system is backwards when it comes to IVF. So if we moved 1.5 hours away, we wouldn't be in this position now. Which is more my point, not the fact we don't want to pay for it, the fact it's a post code lottery and unfair? This then adds more stress to an already upsetting situation. It wasn't my choice to only have this option and not to be able to have children?

@dietcokemum - thanks for your comment, thats actually interesting to know. Our GP and local MP both stressed to write to the CCG and have advised we should still appeal! We can only go with what we are told I guess, we are quite blind to the process which is why any help is appreciated.

Thanks all x

Dot457 Thu 07-Nov-19 10:17:40

@NotYourHolidayDick - haha brattish? Yes really brattish not being able to have children, wow what a spoilt woman I am. Thanks for your opinion hun smile

dietcokemum Thu 07-Nov-19 10:21:16

@Dot457 don't waste your time on an IFR appeal, they are only accepted if the process has had flaws in it. Good luck with everything xx

GemmeFatale Thu 07-Nov-19 10:24:52

Very very few people need IVF because of their age. Some (most) are older because by the time you’ve tried for a year or two or three (whatever your area needs for a referral) and then waited on the list for a consult and then waited for a diagnosis and then waited for treatment you are going to have aged. We went from trying to IVF in four years. That’s considered pretty fast. In that time I slipped over 35. In some areas that would have prevented me from qualifying for treatment despite having a series of issues.

And yes. If my painful periods had been properly investigated and treated when I was 17 I may not have needed IVF at all. But we don’t prioritise women’s health.

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