IVF - funding declined...

[Dot457]

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 @AliceAbsolum @NotYourHolidayDick @JeNeBaguetteRien @Twickerhun @theemmadilemma @Scarlett555 @GrumpyHoonMain @ItStartedWithAKiss241 @BoomBoomBoomLetMeHearYouSay @FrankUnderwoodsWife @shazzz1xx @GrumpyHoonMain @itwasalovelydreamwhileitlasted @BoomBoomBoomLetMeHearYouSay - thanks everyone.

Maybe I didn't explain my self very much, hopefully my above comment will explain better? I am mid twenties (Only just) so leave my age out of this. Thanks everyone for your nice and helpful comments. I think my original question has clearly been misinterpreted by some people. Me and my partner have worked really hard to get where we are today. You don't know our past and how far we've come considering a lot of things, so I highly advise you stop being small minded and consider that someone isn't just trying to do the system.

I’m sorry that you have been denied the 3 rounds recommended by NICE

But

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

These babies already exist and will be born regardless so should be delivered safely but IVF does not guarantee a baby as an outcome so the two circumstances are not really comparable.

It must be so frustrating not to be able to get the same as someone else would simply because of where you live. The system seems very unfair, whatever your position on providing IVF on the NHS the same rule should apply no matter where you live. Could you look at replacing one car with a slightly cheaper one and then taking a loan for the difference? Otherwise, Madrid has some very high quality centres offering IVF for about 1/3 of the cost and it is very well regarded.

Also, I know this is a sensitive area, but whilst you are still young maybe start looking into the possibility of adoption. I know for many at the outset it doesn't feel the same and is an immediate no, but as someone who was adopted I have seen first hand how wonderful it can be. I'm not for a minute suggesting giving up, but it could perhaps be seen as the light at the end if things don't go as hoped. Again, I know it's sensitive, but sometimes good things can come in a way that we don't expect them to. Good luck with everything.

@Totally - it was me that said that not the OP. But having children is a choice, not a right. Why should the NHS fund that? If that’s the view being taken (by people who already have children!!) on this thread.

Also, I know this is a sensitive area, but whilst you are still young maybe start looking into the possibility of adoption

What is this, infertility bingo on this thread? Do you think the op has not considered adoption before? Do you think she has never heard of it? She is asking about IVF. Not adoption.

I know that, I was trying to word it in a sensitive way, i just wanted to help give a little hope. Ok I hope you can see that I don't mean to upset or offend in any way, I just know many people view it negatively and wanted to give a positive view of a (hopefully never needed) future way to have a child.

Sorry boomboom, I replied incorrectly. But surely you can see the difference between delivering existing babies safely and attempting to create new babies with no guaranteed outcome?
If a woman is pregnant with her 10th child surely that child has the right to be born safely and with whatever medical care is deemed appropriate. You can’t say that we won’t provide medical help because you already have 10 children and have used up all your nhs resources so we will just let this child be born without any medical assistance and if the baby dies then tough.
But attempting to create a baby through IVF is a totally different argument because there is no child to die or suffer injury if the medical intervention doesn’t take place. And there is also an argument that leaving children to be born without medical assistance could lead to more children suffering birth injuries and being disabled as a result which will cost more for the public purse in the long run.

Op did you actually read my post? Your canned response to my genuine advice has really pissed me off especially since I was supporting you. Anyway at your age you could qualify for unlimited ivf for 10k with access fertility or 2k cycles with basic fertility clinics. But whatever not helping you any more if you can’t even be bothered to read my posts

Hi OP, sounds like you have been through a lot.

10K might seem a huge amount of cash (and, of course, it is) but you are young and will have plenty of time to pay it back. In the grand scheme of things it’s not enough to stop you going for something as majorly life-defining as having your own child.

Good luck, I hope everything works out for you 🤞

My point @Totallycluelessoverhere is that who gets to be the moral arbiter of what is good use of NHS funds? Personally I think someone with problems like the OP has described is more deserving of NHS funds that the person on baby 10.

@GrumpyHoonMain - I have been doing my best to read everyones post and my reply wasn't aimed at you in that way. I thanked you for your advice so I'm sorry if you feel pissed off. Theres a lot of toxic comments on here now which I didn't expect at all as I was hoping for some friendly advice which I know you gave. I also work full time so trying to keep up on top of that too (I actually can't multi task despite being a woman haha) We have looked into access fertility, we were advised by our previous consultant not to go down that road as due to my conditions I wouldn't qualify, but I suppose we should look into it properly and hear that from the horses mouth! Honestly, I really appreciate everyones help because this is the type of advice we need, I've obviously just seen the bad and negative comments and focused more on them which is wrong, as those people aren't worth my time tbh. I just don't see how people can be so heartless to this type of situation when alot of us here are basically in the same boat! I will definitely look into what you have advised x

I’m in Ireland and there is no funding for IVF here. Most people manage by saving, loans and having parents help out if possible. It’s unfortunate but that’s how it is. Tax back can be claimed on money spent on IVF so you get some back - could be worth looking into if that is the case in the UK also! We have done one round, saving for round 2 then the tax back from both of those will pay most of round 3 which we will save for in the meantime.

Baby number 10 is a person in his right boomboom and is entitled to care.
In my opinion it is right to provide care to people who exist regardless of whether the care needs are self indicted or not because not providing care usually leads to a greater cost to the nhs overall.

If a woman has IVF whether private or NHS funded she will be then entitled to maternity care, birth care and post natal care just like any pregnant woman so she will be benefitting from nhs funds.

@GrumpyHoonMain and i had stage 4 endometriosis diagnosed aged 21. I also had premature ovarian failure aged 28
I still didn’t expect others to fund for my choice to have a child

And I never thought I would find myself arguing that it could never be right to allow a baby to potentially suffer to free up funds to TRY and create other babies.

@totallycluelessoverhere you seem to be confusing this thread for AIBU - why are you arguing at all? I’m not sure if this is your first time on the infertility boards but if you read literally any other post you would see it’s not a place for arguing but where you get advice on infertility, a handhold or talk to others experiencing the same. The op asked for advice on her situation. Not for your opinions on funding of IVF and use of NHS funds.

Op definitely worth looking into tax relief as I mentioned above. I hope you get some funding in place soon and hopefully with some luck your second round will work x

I was responding to boomboom who brought up the funding of maternity care steenac. And no it isn’t my first time on the boards here. I had a 7 year battle with secondary infertility.

Hi @totallycluelessoverhere , I guess both you and @BoomBoomBoomLetMeHearYouSay should have read the Op’s post closer and responded with the advice she asked for or otherwise not responded at all rather than hijacking it with your own view on funding of IVF and NHS.

Sorry to hear about your own fertility struggles. I asked as I’ve found these boards so useful, friendly and empathetic over the two years I’ve been using them so I was surprised to see an AIBU style argument breaking out when the Op only asked for advice as many posters do everyday. Usually people are very kind and helpful to other posters.

Apologies @BoomBoomBoomLetMeHearYouSay I see you were offering the Op advice and just responding to some horrible comments made by another poster.

Well, this thread has become rather unpleasant hasn’t it. Was there any need to accuse her of being “brattish” or break out the classic invalidating and inappropriate question of “why don’t you adopt”? Is it really so bad to support the original poster and answer with some kindness?! It’s a genuine question but people seem to have gone off at tangents with their own hobby horses. As others have said this isn’t AIBU 🙄

I apologise to the OP and you steenac for any offence I have caused. It wasn’t my intention to offend I think I just got caught up in responding to a comment made about funding maternity care and didn’t think enough about how it was derailing the thread unfairly.
I do hope OP finds a way to get the IVF she wants and I agree with others who have said looking into private funding options might be the only way.

@Totallycluelessoverhere you are entirely missing my point - my point generally is that who are you or I to decide who is worthy of NHS funding.

Yes, sorry I have been involved in detailing the thread too, we will agree to disagree @Totallycluelessoverhere

Going back to the OP - could you move to an area where you would get further rounds funded or is that entirely out of the question?

@totallycluelessoverhere thanks for a lovely post. I know it can be hard not to get caught up when everyone has such strong opinions on IVF/funding/healthcare etc but we’re all here because we find ourselves in a crappy situation against our will. We’ve got to do our best to stay helpful and supportive to each other!

I understand the Op’s worry as like I said we get nothing paid for here and there is the worry of being ten years down the line in tons of debt and potentially no successful pregnancy to show for it. If anything having no funding made it easier for us - the lottery in the Uk must be hard when you know others are getting up to 3 rounds free.

Hope you have a great day!

I agree appealing your IFR is pointless - sounds like they have made the correct decision according to their policy. It sucks but you just have to put it behind you and focus on what to do next.

I would definitely contact Access Fertility - they have a main contact number where they will go over your case and tell you there and then if you would qualify, or ask you to send further info so they can review it. Don't just take your consultants word for it though - make sure you get a definitive answer from them direct.

It's also worth asking individual clinics if they offer any packages. I don't qualify for Access Fertility and so I'm doing 'natural modified IVF' at the moment, and bought a package of 3 cycles form my clinic (Care Fertility) for £10k. You pay for drugs on top of this, which has cost about £3k over 3 cycles. There's no refund if it works first time, but at least you're getting 3 goes and it helps you plan financially. Might be worth looking at.

As another poster said, natural IVF might be an option seeing as it doesn't sound like you're a good responder to stims anyway. You should research it. It might be a false economy though because although it's cheaper you may end up needing more goes.

Then you have clincis abroad, which lots of other posters have recommended too.

Whatever you do you'er going to have to find a big sum of money to cover it and unfortunately if you want to act quickly you need to just accept that and start getting it together - remortgage, look at credit cards and loans, downsize cars, sell stuff, give up luxuries. I also found ways to earn more money on the side and so did my DH - I took a job one night a week in a pub, I started renting out my car because I don't use it much (I made £2k in a year doing this - look at HiyaCar if you're interested), I used a site called Freelancer and did admin work on the side - audio typing and stuff. It was all a pain and took time and energy but it helped us a lot financially. Good luck.