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

(77 Posts)
OracleInaCoracle Sun 03-Jul-11 11:23:30

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?

OracleInaCoracle Sun 03-Jul-11 11:41:55

just me?

deemented Sun 03-Jul-11 19:39:16

Yes, i'd support you completely.

My husband and i went through nearly four years of fertility treatment. At the beginning the tests were funded by the NHS, but when they finally realised i was overweight, and DH was of advancing years, they pulled the plug sharpish. We were lucky, we were in a position to self fund and were seen within days, but i totally understand not everyone is in that position and tbh it left us with nigh on £25,000 worth of debt, but having DS1 & 2 come from it, it was money well spent.

People say 'Oh infertility isn't a real illness' and 'Money would be better spent elsewhere in the NHS' but unti it happens to them, they can't begin to comprehend the devestation it can bring.

havealittlefaithbaby Sun 03-Jul-11 19:41:46

I know what you mean. I had no idea how complex infertility issues were. So many people come on here and say: 'Probably a stupid question but...?'. To he fair, if they're asking in here chances are it's information that's not available anywhere else! Dispelling the myths and raising awareness so we wouldn't have to answer stupid questions like 'isn't it your turn?' Or 'why haven't you had your next dc yet?' would be fantastic!!!! So I'd support it!

JenniL1977 Sun 03-Jul-11 19:43:58

I'm with you Lissie. I'm pg with dc1 through IUI after unexplained infertility. I can't even begin to articulate the strain on my relationship and the depression it's all caused.
Although I don't know how we'd start this, are you a campaign expert on here?!
Please feel free to pm me if I can do anything to help.

Bellagio Sun 03-Jul-11 19:45:14

I'd support it, the current system is grossly unfair

OracleInaCoracle Sun 03-Jul-11 19:46:10

jenni, Im no expert. have been on the conception boards for a long time and figured that since mnhq are spearheading campaigns against overpriced football kits, etc and they did a great job on the mc campaign that something could be done.

RowanMumsnet (MNHQ) Sun 03-Jul-11 19:49:24

Thanks for this. We'll have a confab and get back to you. Do please feel free to continue posting in the meantime.


OracleInaCoracle Sun 03-Jul-11 19:50:21

thank you rowan!

lottiejenkins Sun 03-Jul-11 19:51:43

Happy to support you Lissie xx

JenniL1977 Sun 03-Jul-11 19:52:21

Well that sounds good to me Lissie smile I guess we just ask them (MNHQ)?
I really wish that I'd known there were conception boards on MN when I was going through it all, I only joined MN when I got pg. I've had a read through some threads since then though and there is some amazing advice and support on that board.
Come on MNHQ, this is something that could really help hundreds?/thousands? of women.

JenniL1977 Sun 03-Jul-11 19:53:23

Ah. X post!

superjobeespecs Sun 03-Jul-11 20:03:04

for a while i thought i may have secondary infertility as we were off contraception for a long time and nothing we're now almost 6 months PG with a DS and have put it down to the amount of time it took the curse of my life i'd sue the makers if i could depo injection to come out of my system eventually a cycle of the pill helped and within a month of coming off it we were PG thank god because it was heartbreaking every single month whilst friends and family were falling PG left right and centre. luckily they knew how obsessed much i wanted a 2nd child and let me be slightly overbearing with them smile i love my nephew and best friends daughter like they are my own.

if i'd known that MN had conception boards where i could rant and get some of the agony out i'd have been there in a shot. i wholeheartedly back equal infertility treatment for all not just what each hospital can be bothered to easily provide without putting themselves 'out'.

Kayzr Sun 03-Jul-11 20:19:51

I certainly support it!!!

ktmoomoo Sun 03-Jul-11 20:25:16

you have my support x

PrettyVacant1 Sun 03-Jul-11 21:39:26

Count me in!!! xx

PatientGriselda Sun 03-Jul-11 22:34:17

Agreed. I would love to know the reason for the variation in provision by different NHS trusts. They manage to comply with nationally set guidelines for things like frequency of smear tests, so why not for something like provision of ivf?

OracleInaCoracle Mon 04-Jul-11 07:58:17

Totally agree. and there are so many myths around IF too!

NinjaChipmunk Mon 04-Jul-11 09:51:03

I would happily support a campaign. As someone who had no problems conceiving child 1 but now told I have secondary infertility, it is amazing how care differs from one pct to another. I think it is really important as some gp's really don't seem to know about even the most basic of blood tests.

BlooferLady Mon 04-Jul-11 11:32:28

Reposting here from other thread as requested...

Absolutely. For personal reasons (the unrelenting strain of thus-far 'unexplained' infertility is something I wish more people could understand or have access to knowledge about) and to support everyone else going through the same thing.

Even after 18 months of unsuccessful TTCing and some preliminary tests I feel very in the dark about what's going on, and my GP (though very supportive and willing) obviously doesn't have a great grasp on issues such as luteal phase defects etc. I'm shortly to be referred to the fertility clinic. I am anxious and depressed about this - and it's because the whole issue is shrouded in misinformation and disinclination to talk about it that going to the FC seems to me to be a kind of failure on my part - ridiculous of course. If I had to be referred for any other kind of treatment I would feel no shame or sense of having let everyone down. The fact that a woman undergoing fertility problems can absorb this peculiar sense of its somehow being shameful or taboo just goes to show how essential an information/support campaign is.

womanlytales Mon 04-Jul-11 11:38:38

GPs are ignorant. They encourage us to 'google it'. Information packages at hospitals are poorly written, vague. Nurses, doctors and consultants are all on different universes spouting advice that is contradictory to each other. The IVF clinic I go to refuse to discuss my case with my consultant who's in the same hospital just part of the Gynaecology department - so I am not sure why a particular treatment is offered or why it does not work. When a particular treatment fails, I do not get a call from my consultant to explain what happened - instead I get a call from the nurse who is often most clueless as to what happened. IVF clinic timings are terribly inconvenient for those of us who are working. My IVF clinic closes at 5pm - so picking up prescriptions and procuring drugs becomes very tricky. I do not have access to my records - One would think in this digital age, we'd all have some place we can go to see our past blood test records etc. The # of tests done to determine the issue vary from one place to another. Other folks my age have had an AMH test while I have not. Something as basic as blood test results are not communicated promptly nor explained.
Pathetic. NHS.

joycep Mon 04-Jul-11 11:39:28

I will certainly support this campaign. I was flabbergasted by my GP sending me off for basic blood tests on completely the wrong days. The huge gulf of treatment between one PCT to another is also very worrying.

OracleInaCoracle Mon 04-Jul-11 12:23:32

thank you all, some pretty crap stories on here sad

poutintrout Mon 04-Jul-11 12:53:15

I agree and would definitely support a campaign.

I have been diagnosed myself with unexplained infertility and have been basically told to bog off and get private IVF treatment which we cannot afford. I feel totally cast adrift and to be honest not very confident in the diagnosis & feel that there are issues that I raised that were not investigated at all. I don't feel that I was listened to and I don't appear to have had many of the tests associated with a basic fertility work up that I have read others have had. In fact it seems that the tests given seem to vary completely from NHS Trust to NHS Trust. I definitely think that this ought to be standardised not least so that a woman knows what exactly she should be tested for.

I also agree that there appears to be a widely held notion that IVF & other forms of assisted conception is freely and easily available on the NHS. This myth needs to be dispelled.

Fertility issues do seem to be taboo and you do feel like you have to keep it a secret. I also think that more ought to be offered to women struggling to conceive in the way of counselling. I couldn't believe that I went to the outpatients clinic one day in my mind as a woman who was taking longer to conceive than average and in the next breath I was labelled with unexplained infertility, discharged from the clinic and told to get IVF. I was so shocked, there were no niceties, no mental preparation. Naively I expected my GP to contact me to bring me in to discuss things following the discharge but I've heard nothing. Perhaps I expected too much. All these issues swirl around my head and I think that I would benefit from some counselling or at least to have the option of going to a support group. I am frightened though to go to my GP and mention that I am struggling in case it gets noted on my medical records that I am depressed because I've heard that this can go against you if you are considered for IVF or adoption.

RunningWithScissors Mon 04-Jul-11 12:57:11

I would certainly support this, having experienced limited (and on occasion incorrect) GP knowledge on very simple matters.

This is not a straightforward area, however, with disagreements between top clinics on what tests and treatments are appropriate.

For example, some top IVF clinics believe that natural killer cells are a key cause of implantation failure / early miscarriage and treat these accordingly, and yet a top miscarriage clinic disagrees completely, and thinks that the proposed treatments could be harmful to mother and baby.

Also, some treatments are only available privately; you would need to be clear about what you'd have to pay for.

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