to think NHS IVF rules are unfair?

[kathkim]

So I have adenomyosis and endometriosis. It's looking increasingly likely I will need IVF. Why can't I get it on the NHS just because my partner has a child with someone else? It's me who needs the help. How much would it cost privately?

holly DH is Danish and won't return because of the high taxes. They are punitive for someone like him because he runs his own business while working. We also wouldn't be able to support my career. Childcare is based around office hours. Most roles at my level have a 50-60 hour work week. People don't have nannies because the cost in terms of salary and taxes is prohibitively expensive. We would be paying a nanny at least £45k a year meaning I would need to earn £120k just to break even.

No system is perfect and there is always room for improvement. Personally I'd like to see house prices come down so long term people have more disposable income. It would also help the government via lower housing benefits paid out.

want2be - I agree with you that a system of free childcare is vital. It's something I'd definitely want to see happen here for precisely the reasons you mention - I think it would be the single, most liberating policy for women. The fact that Denmark have a policy like that in place, while achieving lower levels of income inequality than we have, is eye-opening really.

Also agree that housing is a huge issue and needs to be tackled head-on (which also means spending money).

I would like to see increases in income tax for the top 10% of earners to pay for it! Those who say this is unrealistic have short memories - top rate tax was MUCH higher between the 40s and late 70s than it is today. Also, mansion tax is a good idea!

Shovetheholly - are you in that top 10%?

Mansion tax is the worst idea possible IMO. It's going to affect huge vast numbers of regular people down the road just like IHT does now. I'd rather they do away with non dom tax status.

applebite - Probably. It depends a bit how it's defined - we'd be on the lower boundary of it. We are not wealthy at all by Mumsnet standards - don't live in any kind of expensive house (bought ours for £164k) or drive a fancy car (Skoda Fabia), but as a childless double income couple, we fall into many definitions of the top decile. If the general spirit of the question is "Do you think you should personally pay more tax as a household", then yes I absolutely do. And I absolutely think everyone above us in income terms can afford to do so as well!

Yes we did have the higher rate tax before, and it didn't work, which is why they lowered it. The mansion tax is a terrible idea, it would mean only the super rich could live in London and everyone else would have to move out

I know what I am about to say is going to be extremely controversial..... but here goes:

I had a child already naturally then when we wanted a second child, I fell pregnant straight away but had a ruptured ectopic pregnancy which resulted in loss of BOTH my tubes.
I had been offered IVF because I lied about my older child. Simple as that. My husband and I kept it a secret and we had a successful round of IVF and now have DD who is 7.
It horrifies me to think she wouldn't exist in this world if I didn't do this as she has brought immense joy to our lives.

So I don't know if it's too late for you to do this, but just don't tell them your partner has a kid already. You may be able to get it that way.

However some people will be infertile due to pcos or hypothyroidism. Which are frequently not diagnosed or treated on nhs. Or a bit like shatners thry are undertreated. Ideally tsh should be 1 for fertility. But you are lucky if you are treated with 4+. Similarly for pcos, it is not necessarily disgnosed until infertility is talked about. You are then not offered metformin.

That's nice, dulux. Yet another reason why I don't think IVF should be offered at all on the NHS.

Or she could still have existed if you had, even more controversially (it seems), paid for it yourself, dulux??

I find it interesting that most people want the NHS to stop funding something they personally don't need

There are a million and one things the NHS could cut out before it needed to cut out infertility treatments (expensive coffee for senior managers and 27 million pens per team as only 2 examples) . It's a medical problem that can be medically treated, why shouldn't it be as valid as other non life saving NHS services?

I went private because I could afford to (and by the way, getting IVF on the NHS is really really hard work) but it would have been heartbreaking if some of the people I've met on my journey hadn't been offered it. Their infertility was psychologically destroying them, treatment kind of was life saving.

It's shit that you can't have it because your partner has a kid but that's the reality of it. I second trying abroad (depending on what you need about £2000 in the Czech Republic)

Dulux Controversial? No. Shameful? Yes.

Thanks for your honesty, Dulux esp as you could guess the reaction here. I am grateful for everyone's views.

Kath I hope it works out for you. I agree overall that the rules are ridiculously unfair and it's only those who have never experienced infertility that are against IVF on the NHS. They will never understand.
You know what, I don't care one single bit about lying because it was the NHS that made me almost DIE and my child left without his mum and DH without his wife. My blood results were mixed up with someone else's and I repeatedly went to A&E presenting my symptoms and pain and was turned away 3 times. I went on to even have a D&C (all whilst still pregnant) and nothing was ever picked up on. It wasn't until I was at home alone with my then 3 yr old when I fell unconscious due to internal bleeding.

So yeah, the NHS left me to loose my fertility and nearly caused me to loose my life so I DGAF about lying. My family is complete and my children are my life. No regrets hence why I was honest about it.

Dulux said "its only those who have never experienced infertility that are against IVF on the NHS." If you'd read the full thread you'll see there are posters who have experienced infertility but who don't think IVF should be available on the NHS.

I don't want my own kids (DP has two) but if I did we would have to do IVF. My heart goes out to you, really, as I can't imagine how you're feeling, but I also know there has to be a line somewhere. There are other people who can't have the cancer drug that might save their parent/partner/child or those who could benefit from all sorts of treatment which would save/improve/extend their lives and it's just not a bottomless pit of money, so there are sadly lots of people who don't get the ending they'd like.

I'm not going to offer any advice as I haven't been in your shoes but I wish you all the best

'I'm especially curious about all the posters who have declared that the NHS can't afford to fund the choice to have children, including any parents among them who managed to have zero-cost babies.'

Quite!

My sympathies to you OP. A lot of people on MN can be very cut and dried on this subject. Usually because they’ve never been effected by infertility.

I've always struggled with the IVF on the NHS debate.

I have a child who has been denied a treatment by NICE due to cost affordability.

I know why the treatment has been refused and I can see that the argument was based on effectiveness versus cost. It had nothing to do with funding in other areas of the NHS. I offered to self fund this particular treatment at a time when my child was very unwell. I was told that the cost was 16K a month.

The problem does not lie within the costs of IVF, but the pharmaceutical companies who charge the NHS whatever the hell they like (especially in our case). Also people who get 'free' calpol from the Pharmacy just because they can.

The NHS is making cuts, it is stopping prescriptions for things like paracetamol etc, and it is also playing hardball with some pharmaceutical companies who do charge too much (not all do this, and I know that the funds are often for new project etc, but some do - especially for the treatment that my child needed, the company involved charge less in other countries for the same treatment FWIW).

Personally I do feel for any person who is infertile and unable to get any assistance - surely one free go for every infertile couple is better than the current postcode lottery. I do think the OP has got a right to upset given that the rules are so different in each area.

It is such a minefield and I am aware that the NHS needs to make changes, but its about time they set the rules out nationwide and end the postcode lottery madness. It should be clear what they will and won't be prepared to fund and stick to it. That would annoy people far less and at least they would know where they stand.

'Not being able to have children doesn't impact on your health (though of course I understand it can affect your mental health). I don't agree that it's a disease.'

Well the World Health Organisation recognises it as a disease. But I’m sure you know better…

Infertility is certainly a disease, because a part of your body isn't working correctly. That's one of the definitions of the word "disease".

The reproductive system is, obviously, part of the body. If some other part of the body doesn't work correctly, it is treated by the NHS. Even if it isn't painful or life-threatening, but treatment would improve quality of life.

Not only that, but "improving your quality of life" is a huge understatement when it comes to having much-wanted children. (Yes, you do hear people complain sometimes, but they invariably say they wouldn't have it any other way, their family is the most important thing in their life etc).

So: Infertility is a disease. There are treatments available with a worthwhile success rate. Successful treatment results in massively improved quality of life. The NHS treats diseases if there is a treatment available that can improve quality of life. Therefore IVF should be available on the NHS.

@Widehorizen, that's an interesting point. How do you decide who's infertility is more deserving. Like other people have said, infertility can be a symptom of disease, or it can be unexplained, or like in my case, just a freak of nature.

I thought I was infertile, having tried for two years with no success. We'd already decided that we didn't want to try assisted conception when I discovered that I had an un-naturally short luteal phase.

Some people are unlikely to ever get pregnant even with assisted conception, but without extensive (and expensive) testing, how would that be known?

What it boils down to is that unfairness in anything sucks. The postcode lottery is bloody ridiculous. It's supposed to be the National Health Service, not the Depends Where You Live Health Service.

Some areas offer no IVF, some just one round and others more - I have to agree that the rules for IVF are unfair, particularly as regards partners with children. However fertility treatment is very expensive and, like other posters, I feel that with the NHS so stretched that it is understandable that it is becoming more and more difficult to get it. Fertility problems don't usually cause health problems (though of course health can cause fertility problems) so it is understandable that the NHS is focusing more on those with ill-health.

One of my daughters can't have children naturally and would get just one cycle where she lives. At the time she was told this she did have a partner who already had children and would not qualify in any case. She's now been told that it is very unlikely that it would work for her and has decided not to have even one round as we have both seen quite a few people get totally obsessed with IVF. In several cases they ended up with no baby, no partner, no money and severe mental health problems.

Its certainly not fair. Especially when people can have multiple IVF on the NHS. However the NHS needs some sort of rationing. Do we stop caring for babies born before 28 weeks? Stop care for stroke victims, the obese, the over 90s? I think the NHS could charge a fee to cover costs. Many people think nothing of spending £2,000 on a holiday.
As an aside, I am a woman of maturity and no IVF, indeed little fertility care was provided for me when I was unable to conceive. I had a long, fruitful career as a midwife! All those babies and no sleepless nights.