can we have a campaign for standardizing treatment of infertility please?

[OracleInaCoracle]

after the great job that the miscarriage campaign, I thought this would be a natural next step.

Ive been on the conception boards for a long time now, and it would appear that the difference in treatment for IF varies a huge amount from PCT to PCT. some hospitals run lupus tests as standard, others will just run day 21 and day 3 bloods. some will check immunology, others wont even consider it.

infertility is still something that the general public remains ignorant of, with cries of "just adopt then" or "you shouldnt have left it so late" ringing in the ears of sufferers. I would like mn to help raise awareness, stop IF being such a taboo subject and maybe help the NHS standardize treatment, so the same tests are run in every hospital.

what do you think?

:( lissie

Nope still here! Very uncomfy but nevermind.

I hope this campaign kicks off, any news from HQ? I will do all I can to help.

[Sad] are you overdue now? Hq have said they will discuss. Bit disappointed, the HP emoticons got loads of support, but not many posts on here. Am v v grateful to all who have though x

No still not quite overdue.

I hope it does take off, it blooming deserves you. As i've said I'll help, support in any way I can.

What about this poor lady? Denied IVF on the NHS because she has a 20 year old stepson that she's never even met!

Shocking!

That's disgraceful. My friend is 30 and went through the menopause at 25. Her dh had a ds when he was 17 and his ex has never let him see him. As a result she can't get treatment on the nhs.

emptyshell your post was so eloquent. And exactly everything I felt for 4 years. I'm so sorry, your pain really comes through. I agree with everything you said; I read the first three pages of the IVF lottery thread this lunchtime and I nearly threw my screen through the window, it made me so angry.
Lissie I agree entirely with you re telling people about your problems, should they ask. I did exactly the same, despite several of my friends telling me I was making people uncomfortable. (Although many were v sympathetic and empathetic). Many people will tell you about their arthritis/depression/whatever, well I also, as far as I am concerned had an illness (and the reason I couldn't get pg without help is due to a disease, chlamydia). People should be aware.
I'm also so sorry you can't access help for your mc's. You poor thing. I can't imagine what that must feel like.
MNHQ need to tell us what their "chat" about this threw up? Can we have an update?

I support this. Infertility is still a taboo subject and there is a stigma attached to it. It is not right or fair that a postcode lottery exists for treatment and also I'm fed up of all the myths around.

I would fully support a Mumsnet Campaign on this. We have been TTC for 10 months and have been incredibly lucky with Drs sending us for tests early, repeating tests, offering scans etc. This is in stark contrast to a friend in Cambridge who was told to 'go away and relax' despite not having had a period for 18 months!

bump.

Good plan lissie. Totally support this.

I also think you are right to tell people who thoughtlessly/hurtfully ask. Just mumbling random excuses when asked where the other children are is allowing the asker to get away with it. I have started to volunteer the information that 1 baby has resulted from 9+ years of trying (fuck! literally fuck!! that is 100 cycles) if I like the person and I can see it might come up in conversation.

I would support this too.

Do people really want women suffering from infertility to leave Mumsnet? :(

I am a legit user of Mumsnet because I have two children, but both were only possible because of infertility treatment. We were very lucky - we had saved up before we were married, and we were able to cover the cost of private treatment. Otherwise we would have been stuffed. :(

Mind you, we went through the experience of saying all that stuff "we'd never have IVF, we'd look into adoption as a first choice" and so on before we started TTC. Turned out to be a load of bollocks, of course. We did look into adoption, but it was so intrusive and prolonged, and we weren't sure if we could cope with a child who had serious attachment and emotional problems. I always feel like asking "so why didn't you adopt, if you are so keen on it?". Luckily neither of us are twats, so we never shared our pre-infertility opinions with anyone else, but I think that it would be good for people to realise that you truly never know how you will feel about a situation until you have been there and experienced it.

And, of course, the postcode lottery is very wrong.

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Any news?

Any news?

MrsTittleMouse I've been told in the past that as I'm childless I shouldn't continue to post here - despite there being conception/miscarriage/education forums I've got perfect justification to be in.

I somehow doubt MN will support us - they'd rather campaign for the abolition of fruit shoots as a pressing issue for their members (notice how the miscarriage thing which is STILL a massive problem has been quietly dropped).

NO ONE - no one at all fights for the infertile or those who cannot carry pregnancies to term. No one fights for the backup for the mental health issues that those difficulties can cause (my GP refuses to prescribe me with any anti-depressants, despite me being barely/in-fertile "in case you get pregnant" meaning not only am I dealing with the massive emotional pain of it all - but I'm dealing with it twice over because there's no support out there - I go through each day counting the hours till I can go to sleep and it's all over with again, I'd commit suicide but for fear over what would happen to my pets - yet still there's no help out there). We just don't matter - we're meant to gleefully assume the role of "auntie" - hand out the presents, babysit on the lucky parents' terms as and when they demand and generally just bend over backwards to be useful and grateful for every crumb they throw in our direction. Some can do that - some can even pretend to the outside world that it's enough - many more are the ones making a discreet exit when colleagues bring new babies into work and hiding in the loos for a quick cry - unable to even ever express what they're feeling because it's deemed sour, or churlish, selfish or whatever. Infertility causes you to feel feelings that are socially taboo and can seem very unpalatable to the rest of the world - it's not the done thing to not feel joy at a pregnancy announcement or a new baby, it's not the done thing to feel like a trapped animal when you're in a room with a new arrival dodging the "oh are you two going to get on and cracking with it", or to want to scream and yell when someone gives you yet another "inspirational" annecdote about their Great Aunt Doris who couldn't have children then had octuplets at the age of 85 with the milkman - and we know how we're meant to appear to react in those situations so we spend our waking lives acting... and the NHS doesn't realise the mental and emotional toll that in itself can take on us - there's no understanding of the psychological impact of infertility. I'm not naive enough to believe that my problems would all miraculously disappear if I had a baby - I wouldn't put that unspoken responsibility on a child - but a large part of my depression, my anxiety, my none-existent self-esteem that is directly caused by infertility (how can you believe yourself worth anything when you are, what has charmingly been described on here before and I'll remember the phrase till the day I die, "an evolutionary dead end" - a broken, defective person who can't fulfill the basic biological reason we're on the planet at all for?)

I'd actually go so far as to suggest recurrent miscarriage (not one-offs) need to be looked at IN CONNECTION with infertility - particularly where (like I am technically - it's just easier to describe myself as infertile) you're hit with the wonderful double-whammy of great difficulty concieving, followed by incapability to carry a pregnancy to term. It's bloody wrong that I can do what my GP had asked, shift 3 stone in body weight on the promise of a fertility referral, and then concieve and miscarry and then be told that "oh because you had the miscarriage we won't look into why it's nigh-on impossible to get pregnant anymore"... I've been unable to concieve for over a year since the last miscarriage - I don't fit into any system and, well, like I said - I regularly consider suicide as a way of just making the emotional pain stop.

*I also think MN could do with making a decision about WHO exactly they represent - if they want to speak for all women (including the residents of the miscarriage and conception forums) then they need to clamp down on this "you don't have kids what are you doing here" bullying that goes on... or they need to cut those fora out, cut the pretence of speaking for womenkind in general out and restrict this to specifically parents - because the site as it stands at present doesn't quite work in that respect - and that's why I doubt they'd ever actually fight for those of us screwed by the fertility system tbh.

Feel free to restore my faith in you.*

Hello there,

Thanks for your thoughts on this, and apologies for taking a while to come back to you - the school holidays mean that the Campaigns team is rather underpowered at the moment. It certainly seems as though this is something that a lot of you feel very strongly about. Please do continue to add your thoughts and experiences, and also raise any potential problems/objections, if there are any. Is there a particular request that needs to be directed at government or local health authorities?

We'd also like to emphasise that the miscarriage campaign has certainly not been 'quietly dropped'; we're working on a new phase of campaigning for that right now.

Thanks,
MNHQ x

The taboo subject of infertility, and indeed recurrent miscarriage, is something I feel incredibly strongly about.

Having 'tried' to conceive for 5yrs and suffered 4 miscarriages in the process, I now answer such questions as 'ooo, it'll be your turn next' with a very clear 'if only things were that simple, we joined the 'queue' 5yrs ago and are still waiting for our 'turn''.

Uncomfortable for some people? Yes. Necessary to stop the needless and frankly quite rude questioning? Yes.

My treatment by the NHS has been disheartening at best, downright diabolical for the most part. I've been seen ONCE by my consultant in the 3 years I've under his 'care'. The sole fertility nurse was off for sickness leave for 9 months. Was she replaced? No. So now they trying to play catch up on 9 months worth of childless couples waiting patiently for the golden ticket of a chance at IVF.

I'm still waiting for a phonecall to tell me whether we're even on the list - my appointment was last December.

There has been no continuity, I have been left in the dark for the majority and I do all my research via Dr Google. The and only time I tried emailing (we're in a technological age doncha know NHS) for some advice I was told, quite curtly, that email is NOT the way consultants like to correspond. Brilliant. So instead I had to wait 5 months to get answer to my question.

I rang up the clinic last month to get an update and was told 'don't call us, we'll call you'.

There is no standardisation of care, the most they do is follow the NICE guidelines (sometimes) and I have never been offered any kind of 'care' when going through my miscarriages.

Whilst I understand funding needs to be cut and therefore other areas, such as cancer units will take priority ( and I wholeheartedly agree with this), I also think if guidelines are in place for infertile couples the NHS would actually save money.

It took strong words on my part to get my consultant to agree to chromosomal testing for recurrent miscarriage. Surely this should be the first option instead of joining a long queue for IVF treatment which may end in miscarriage. Cost of the testing - around £400, cost of IVF probably doomed to fail - c£4k.

It's not rocket science. And a system that ticked off these procedures as a matter of course, instead of a messed up 'maybe,maybe not' routine would surely cut down on waiting lists, wasted funding and a LOT of heartache.

My life has been on hold for 5yrs now. I cannot go down the adoption route because you have to be clear of any infertility treatment before they will even consider you. So whilst I'm milling around the bottom of the NHS pond, waiting for that elusive call, I can't even make plans for a future.

I would support this.
The length of time you have to wait for tests to get the ball rolling is stupidly long and a lot of people being told they have to fund it themselves is a disgrace. If it was anything else wrong with you they would have you in hospital right away for tests and operations/treatment, so why not with infertility.
Im fed up with people saying 'when are you having kids' or 'you will be next' when all i want to scream at them is 'Im trying but nothing is happening'!!
Doctors telling people 'your still young and have got plenty of time' or 'time is on your side' when most people have gone to a lot of trouble to time it all right and it doesnt matter if their young, that is when they want to have children and if its not happening they should be offered the tests to find out why.
My doctor was lovely but sent me home telling me to come back in 2months and just try to relax (a lot easier said than done!) Im lucky that she has told me only to wait another 2months, other have to wait so much longer.

That's so sad PicknMix.

I would fully support this campaign and I hope you can garner wider support from all sections of the MN community. I think the postcode lottery is utterly disgraceful - not just in terms of the number of IVF attempts you are allowed but in terms of the treatment.

And personally I think anyone who says 'just adopt then' should be off your Xmas card list for ever more.

I would support this campain wholeheartedly.

I'm sorry so many of you have been so badly let down :(

I'll support the campaign.

Huge support from me on this. I can't really add to the articulate posters above who have said it all. All I can say is that absolutely, nobody can begin to comprehend the extent to which IF takes over and damages you. Like others I too have felt like there's no point continuing with life - what an utter failure I am as a woman because I can't do such a fundamental thing. Nobody gets it and people are hideously unsympathetic.

So please please MN, support us.

Another supporter here.

We are TTC and are starting fertility investigations but so far there is no obvious reason why it isn't happening.

As I got married last year at 34 after having been fairly vocal about never wanting to get married everyone assumed (correctly) that we only did it because we were planning to have kids. So I am open about the fact that we are TTC without any success with everyone apart from work colleagues. I really think being more open about it will help to break the taboo (and frankly I find it helpful to hear real life stories of people having success after many months of trying - people so rarely talk about how long it took them to have their kids).