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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be really upset about lack of fertility funding

65 replies

Alwaysasking · 21/12/2012 09:03

Me and DP have no choice but to have advanced IVF, we have no chance whatsoever of conceiving any other way. DP was born with major cogenital abnormalities which resulted in a zero sperm count, we found out last year.

We have always been aware we would have to fund IVF ourselves, despite being young (20s) and otherwise healthy as I have a DC from a previous relationship. This seems so unfair, I could understand if my DC was both of ours but to deny funding when DP has no children of his own and we have no chance without IVF seems cruel. But we accepted this. However we have now found out not only do we have to fund this, the operation DP needs to surgically find and freeze his sperm will also need funding. We can't afford it. I just feel so upset and angry that DP has no children and we meet all other criteria, healthy, young, fit, yet get no help whatsoever.

Go easy on me please, not up for a bashing, but AIBU?

OP posts:
DowagersHump · 21/12/2012 10:07

Infertility is part of your body not working properly. It's just as worthy of treatment as any other medical condition.

I don't understand why people always compare it to cancer - do people not go to the GP if they've got recurrent headaches or depression or a sore arm because it takes away funding from cancer? And how much do some pregnancies cost the NHS?

I'm really sorry OP, that must be very hard. I hope you find a way through it

Original poster
Alwaysasking · 21/12/2012 10:09

Thank you so much Lambzig, is Spain much cheaper than UK? Going abroad seems like the best option for us. It's very hard to know where to start with everything! I feel a bit of hope now.

Donating an egg is something I've thought long and hard about, but I could not cope if we were unsuccessful but a couple using my egg went on to have a baby, it would tear me apart.

Yes the stepchildren rule seems unfair, I can understand the rules relating to age and weight/smoking because they are physical things that can impact on the procedure. But stepchildren rule covers a whole host of circumstances and I don't understand how the postcode lottery is anything short of discrimination. A couple were in the news a few years ago who fought the stepchildren rule and won - the court said it was discrimination to deny her the chance to carry a child of her own. But then millions of couples don't get this chance so it's not fair she did and that is discrimination also. Maybe means tested is more suitable.

OP posts:
givemeaclue · 21/12/2012 10:15

Op, have you worked out how long you would need to save up? Even if 5 or 10 years you are young so would be able to do that

upstart68 · 21/12/2012 10:19

YANBU i think that's very unfair. I hope you find a way.

amothersplaceisinthewrong · 21/12/2012 10:23

I don't think any IVF should be funded on the NHS, kids are not a right, they are a gift.

Nancy66 · 21/12/2012 10:39

anothersplace - if they're 'a gift' then why are so many 'gifted' to people who abuse and kill them?

Kids are not a gift nor a right - but doesn't stop the desire to have one or heal the pain when you can't.

Tailtwister · 21/12/2012 10:45

YANBU to be upset. Infertility is a very upsetting issue and unless you've been through it yourself it's hard to truly understand how all consuming it is.

We had IVF to conceive our first child and I remember being surprised at some of the restrictions. We ended up self funding in the end, due to the long waiting list but also as we felt that if we could we should iyswim.

It seems as if the only option available to you is to try and save up. It's an expensive business and I would recommend taking a look at all the available clinics near you. The success rates do vary, as do some of the techniques on offer (blastocyst transfer for example).

I don't have any knowledge of clinics abroad, but it's definitely an option to investigate.

It's a very tough thing to deal with and I recommend going to a specialist board to speak to people who are going through similar. AIBU will always result in the same old comments (IVF shouldn't get funded etc etc) trotted out, which although valid won't make you feel any better. Like I say, speak to people who have been or are going through it themselves.

Tailtwister · 21/12/2012 10:46

Ah yes, the old 'kids are a gift, not a right' line. Wondered how long it would take for someone to come out with that! Not really helpful though is it "anothersplace'.

givemeaclue · 21/12/2012 10:47

A mothers place: The nhs gives many "gifts", the gift to speak, to hear, to walk, to live. The nhs also gives the "gift" of a child to some. No-one is claiming children are a right. I hope you are never denied the "gift" of treatment for something.

pingu2209 · 21/12/2012 10:49

I'm so sorry for you and your partner. I am very aware that those with children, inc. myself, are lucky.

There are so many new drugs and treatments that are available not only for IVF but for lots of other medical conditions and diseases, but the NHS just can't afford to offer it to everyone.

It makes me feel sick that lives could be saved, or indeed granted with IVF, but lack of money means people suffer loss and pain.

Life is unfair. I pray to God that I nor people I love have to endure the pain of knowing there is an answer but no money to pay for it.

EuroShagmore · 21/12/2012 11:43

OP, there is a lot of support available on the Conception and Infertility boards on here, as well as on other boards like FertilityFriends. I have found them to be a great help during the dark times while we have been ttc. (And the "kids are not a right" crew - who invariably have children of their own and so have no idea of the anguish that infertility can cause - tend to stay away.)

HappyMummyOfOne · 21/12/2012 11:50

You are very young and already appear to have children in your household to love and cherish. If you want to add to your family so badly, then you have plenty of time to save and are fit and healthy so second jobs are not out of the question. If your DP wants this so badly, you will find a way.

Kayano · 21/12/2012 11:50

sorry but I don't see why biology is all that. you have a little family already, it's not like you don't have kids. what about adoption? would he not look on your kids as your own little family?

I say that as a adopted child whose parents who were in the same situation as you but without the children from a previous relationship.

Tailtwister · 21/12/2012 12:06

I agree kayano, adoption is certainly an option which op could consider. However, not everyone is suitable to adopt. I don't think it should be the default position for people who can't conceive naturally. The children deserve better than that. They deserve parents who genuinely want to adopt.

Kayano · 21/12/2012 12:08

no not the default position but worth considering. if there were no kids involved already then I would say IVF should and would be funded. but not if there are already children in the family.

I was actually pretty surprised when my mum told me they went straight down the adoption route actually

Northernlebkuchen · 21/12/2012 13:32

I think there would be a lot more pressure to fund IVF for cases such as the OP if it was a better treatment. But it's not. It's very invasive, with risks for the mother and (I think?) for any pregnancy that ensues AND the success rate is not good. For the OP it would hopefully be a better option given her age and the fact that she has no issues as far is known - but generally across the population the situation is that it's very expensive for something not that effective. It's heartbreaking though. Some people, myself included, have no problems and other people have every problem going. It's desperately unfair.

RedToothbrush · 21/12/2012 13:50

My PCT has no IVF funding whatsoever regardless of your circumstances. If I moved 2 miles and needed IVF I would be eligible.

That, above everything else, is the most outrageous and disgusting thing about IVF funding; the postcode lottery about whether you qualify or not and the wide-ranging and heartless exemptions, some of which have been mentioned on this thread.

All this against the recommendations of NICE too.

Original poster
Alwaysasking · 21/12/2012 18:16

I am also adopted, and would love to adopt, but the fact is the vast majority of couples are turned away. Also my DP wants to have a child of his own, whcih I fully support. Afterall I have a DC, I can't imagine facing the possibility of never having a child of my own.

Yes, the post code lottery seems the most unfair aspect of this whole funding malarky!

OP posts:
Phineyj · 21/12/2012 18:41

The adoption people don't approve of your pursuing IVF at the same time. We were turned down for that reason (in fact we weren't even doing IVF but they said we must try it and then come back). They seemed extremely suspicious of our motives and made rude comments about our marriage. I would never recommend that someone already upset about infertility and medical issues get involved with adoption at the same time -- it's really upsetting and you end up involving the whole extended family as they all have to be listed on the application forms.

We had our IVF treatment in Greece where it was indeed cheaper than in the UK, they had access to options the UK clinics don't, and were entirely specialised in the treatments they offered, so more expert (e.g. they don't try to offer IVF in a context of all the other things the NHS does). It worked for us second time.

We paid (in the UK) for the operation to fix my endometriosis, which was causing health issues as well as the infertility, and all the IVF, but time was not on our side -- it is on yours which is good.

If you can find a good private consultant who specialises in your DP's particular problem there is a good chance they will be able to advise on clinics abroad (our UK consultant had trained the doctor running the Greek clinics).

One weird thing is that as soon as you get pregnant, by whatever means, the NHS will fall over itself offering you appointments and checkups (within the normal limits of resources)!

GothAnneGeddes · 21/12/2012 21:52

OP YANBU.

I hate arguing about what the NHS should and shouldn't fund (and I say that as an NHS worker). The NHS should be there for you when you need it. If that means more tax money goes towards it, then so be it. If we could actually get corporations to pay the tax they owe...

Cabrinha · 21/12/2012 22:15

YANBU to be upset, but limited resources, blah blah...
How much is the sperm retrieval op? Remember that you should I think only have to fund that once - then defrost sperm for each round of IVF (hoping you only ever need one!)
But what about his disorder? Do you want PGD IVF to screen for the same condition?
Get saving - if you really commit to saving, I'm sure you can do it.

Btw, re adoption - when my friend adopted in Somerset 4 years ago, they were told that the number of potential adopters was a close match for total number of children available. That may have changed (in fact, I think the number of children awaiting permanent families has increased) but I'm sure it's not a huge excess of prospective adopters not being matched.

pinkdelight · 21/12/2012 23:24

As many have said, yanbu to be upset at all. Can I just ask what the rush is though?

You say you're starting out, you don't have your own place yet, you're young - and just to be stuffy, you're not married (yet?). So why not wait till you're on your feet as a couple (or in fact, with your dc, as a family)? If you wait five years till you have a home, savings etc, won't this issue be much more easily resolved? And you will be better placed to support your family? As it is, it seems madness to expect the nhs to fund you having a child. Sorry if that's harsh - it just leapt out at me I guess. Maybe I am harsh, as well as stuffy!

Also I'd second the person who said speem donation was an option worth exploring. I'm a sperm donation baby myself and never felt less than a 'normal' biological baby.

expatinscotland · 21/12/2012 23:33

'I remember a couple who were desperately trying to fundraiser for IVF via eBay etc because she had a child in a previous relationship. That child died before her 1st birthday due to a rare condition, despite this, they were denied IVF because she had 'had a child' previously. Disgusting.'

That can be quite successfully appealed. Some friends of ours lost their only child to cancer in March, and are having IVF on the NHS. It's one round, and they will need to pay for the storage of any embryos beyond one that might be created, and for FET if their round is not successful, and they did have to appeal due to her age (38), but the appeal was readily accepted.

expatinscotland · 21/12/2012 23:35

And I agree with looking at clinics abroad. Fortunately, as you are in your 20s, time is on your side.

GothAnneGeddes · 21/12/2012 23:36

Expat - That's hard to say for definite, when there is such an obvious postcode lottery going on.