Concerned at mw's lack of knowledge re GBS

[Haylstones]

I found out after having dd that I was GBS+ but by the time I knew we were home and all was OK. I looked into it again when I found out i was pg and was given varying pieces if information from my mw and in the end she did a urine sample which came back negative but told me I'd still have to go into delivery suite rather than the birth unit and stay in for extra monitoring. I investigated even more and did a private test at 36 weeks, which said I was now GBS-, which I had hoped meant i could have a birthing unit delivery.
I had 38 wk check last week and MW reminded me to let the hospital know I was GBS+ so I explained about the negative result; she looked really sceptical and said that as far as she was aware once positive always positive (please reassure me this is wrong). She knew nothing about testing privately or about your status changing but most worrying she told me her last patient had been in for a booking in appointment and had been concerned about GBS as she was + in her last pg- she'd told her she would still be + and that your status never changed and there was no point in testing again. She said she would pass on the info to this other patient after asking me all about the testing but it just riased a few hackles with me.
After thinking I'd given her lots of useful information she ended the conversation with 'just make sure you contact the hospital as soon as you go into labour and let them know about the STrep b .
I'm sorry this has turned into such a rant but it makes me so cross that such an important issue is not widely known about even by professionals and in order to get accurate information I had to investigate it myself. I know there are lots of fab mws out there though!
Incidentally, if I was - at 36 weeks, should I assume I am still - and go for mw led birth and speedy discharge as I want or remain sceptical about the result?

If you are a carrier of GBS you may test negative at 36 weeks but be positive at the time of delivery. There's a GBS support website which can tell you the liklihood of this.
I nearly lost my first child shortly after delivery because i didn't know i had GBS. Therefore i would suggest you take antibiotics during labour. Is it worth the risk?

Same as platesmasher here, DS1 born not breathing, week in SCBU, GBS eventually established as cause. Home after a fortnight.

Thus highly managed birth for DS2, IV antibiotics during labour. He was fine (crash C-section, he was far too big for me to deliver - huge head).

I could be wrong, but I understand that swabs/tests only show whether GBS is active at the time of the test, no indicator of whether it will be active at the time of birth.

Not much help, really.

The advice from the Group B Strep Support people (the organisation who are campaigning to get GBS routinely screened for and taken seriously in the UK), though, is that "The ECM test, sometimes referred to as the ?gold standard? is highly reliable. Research has showed that, when the ECM test was performed within 5 weeks of delivery, a negative result was 96% predictive of not carrying GBS at delivery (4% of women acquired carriage between the test and giving birth) and a positive result was 87% predictive of carrying GBS at delivery (13% of women lost carriage between performing the test and giving birth) [...] A negative ECM or PCR test result means that the pregnant woman does not need to be offered intravenous antibiotics from the onset of labour or waters breaking against GBS infection in her baby."

Thanks PandL, that's what I was trying to say in my usual rambling way. Even if I hadn't done the test they wouldn't necessarily have given me antibiotics as you need 2 risk factors, one of which is a previous positive test and at this stage I don't have any of the others.
I'm more concerned with the lack of information made available to mums to be.
I am very unlikely to be + at 40 weeks when - at 36 weeks (I think)

DD1 was ill at birth despite me having antibiotics. With dd2 I tested negative in all of the gbs tests, it was always + with dd1, had antibiotics in labour and she also needed than in scbu as she also was ill. The growth can go up and down and it is sensible to assume once positive always positive, in my opinion it's not a risk worth taking.

Thanks for info goingfor3.
My hospital will not routinely give antibiotics in cases where there has been a previous positive test, you need to have at least 2 of the risk factors. If I am offered them I will certainly take them but I think it is unlikely I will have this option as it is a 'new protocol'. I am going by the advice on the GBS website, which I am hoping is accurate!

Our hospital has recently changed policy to "if you have ever had gbs in a previous preg then we treat you as positive in this one". To come into line with I believe NICE guidelines.

I had my booking appt with my midwife yesterday and she said the hospital policy is that you have to test positive in this pregnancy. I raised the q that if I was + last time would I not be + this time as you can't get rid of GBS (specifically colonisation in the bowel) - although it does come and go in the vagina. She agreed but said the hospital policy is that you have to test + again if you want IV antibiotics.

SKSS do you know which NICE guidelines to look at for this?