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Strep B

209 replies

MaggieW · 17/10/2002 21:11

I carry strep b and am pregnant. Dr's are all saying I'll need to be on a intravenous drip for antibiotics as soon as I go into labour. While I don't want to jeopardise or risk my baby, has anyone had any experience where they've worked around it another way please? I also want ot know if an intrav will slow down labour as had very quick one last time and would like a repeat performance! Thanks.

OP posts:
Drib · 08/07/2003 12:21

Butterflymum, please let us know if you hear anything from Wednesdays debate...your doing a great job!

My Mum wrote off to her local M.P but because she is a Labour M.P she couldnt actually sign the EDM.

She did though write off to the Dept of Health who replyed that they will be reviewing the GBS screening in March 2004.

I read the letter and to be honest I dont think they know about this new test available or they just dont want to know about it!

Dont worry Ive put my letter in the post to them with a leaflet regarding the new reliable test and am waiting to hear there next excuse!

butterflymum · 08/07/2003 18:06

Nice one Drib. I have sent the DoH a few emails recently about the whole campaign (including sending them a copy of the comments I put together from this post) - mind you, they have not replied. Might do the same as your mum's MP did and put pen to paper instead - sometimes letters receive more attention than emails.

I hope they remember to turn up to the debate on Wednesday!

Also, I have just received this note back from David Cameron (my details removed of course):

Date: 08/07/2003 17:23:49 GMT Standard Time
From: [email protected]
To:
CC: [email protected], [email protected]
File: Clouds.jpg (2082 bytes) DL Time (44000 bps): < 1 minute
Sent from the Internet (Details)

Thank you for this - it is really helpful stuff. I have drafted my speech and the key questions you ask are in. I will also try and use some of the material that you have helpfully provided.

The point you make about getting a group of parents down to Westminster for a lobby of Parliament is a good one. Let's see what happens after the debate and maybe consider it. Perhaps we could try and get the Minister to address a meeting.....

Anyway, thanks for the help. This is copied to my researcher Patrick who will send you a copy of the debate afterwards. Could you give me your mailing address?

David

As you can see, Drib, I included your comment about lobbying Parliament - he has not ruled this out!

Will post on outcome of debate once I have had copy of same.

butterflymum · 09/07/2003 01:17

Should have thought of this before now, but better late than never (and I should have been in bed ages ago!).

Jane Plumb of GBSS is doing the British 10k London run on Sunday July 13th. It is her hope to raise awareness of Strep B and to raise funds.

If anyone would like to sponsor Jane they can do so at justgiving .

No obligations on anyone - I just thought some might wish to help.

Thanks.

Drib · 09/07/2003 11:41

Butterflymum, Ive just logged onto the parliment debate about GBS. David Cameron was great in getting his point across, but still the health minister is trying to fob us off again!

He went on about how America have got there rate of GBS cases down to the rate we have it at now, so we shouldnt bring in the screening. Does he not realise that America is a much bigger country to us?

He said that next time he wouldnt mind meeting some of the mums, I would love to meet him and tell him exactly how I feel because he started his speech with 'I know how distressing this must be for parents'
Yeah Right!!! He has not got a clue what torture me and Steve got through everyday.

At the moment I am off work sick because sometimes I just cant cope with it..People looking at me like im in a fishbowl, ready for me to breakdown.

I would love the health minister to visit Charlies memorial and feel the pain that we feel everyday that we go.

Sorry to rant on, only I feel that Im ready to explode!!!!

butterflymum · 09/07/2003 12:10

Drib, rant on as much as you want - you are , more than most, entitled to. I too have watched and listened to the debate this morning and like you have had many misgivings about the Department of Health's response.

I am only now posting, as I took time firstly to write and thank David Cameron for putting forward the case in such an emotive and precise manner - it was such a pity that the response was not as precise!

That said, the DoH minister did at least give assurances at the start that further investigation will take place into the issues and I quote (as closely as I can recall) "I have an open mind and will investigate thoroughly, if change is needed it will happen". Indeed the very fact that the debate took place at all is, I believe, a step in the right direction. It was also excellent that two further MP's showed support for the issue and also put forward points.

On another positive note, he had no hesitation in agreeing to meet with a delegation of mums at a future date. Westminster watch out!

Drib, I am sorry to hear that you are off work at the moment. If you want to chat, please feel free to email me.

Take care.

Anyone else wishing to watch/listen to the debate can try this link

Strep B Debate in Westminster Hall

butterflymum · 09/07/2003 14:33

Sorry folks. The link on my previous post will only take you to live debates in Parliament - the people who do the recordings have no archive facility to allow previous debates to be viewed again - what a shame.

butterflymum · 09/07/2003 15:47

Sorry. Long post. Just to let people see a summary of what happened by way of my thank you to David Cameron and his reply (albeit in reverse order!). He certainly intends to keep going on these issues and so should we.

Subj: RE: The Debate
Date: 09/07/2003 15:13:55 GMT Standard Time
From: [email protected]
To:
CC: [email protected]
File: Clouds.jpg (2082 bytes) DL Time (44000 bps): < 1 minute
Sent from the Internet (Details)

Thanks - I think yours is a very good summary of what happened. I will certainly try and keep up the momentum, which was the point of getting the guarantee about the meeting. Please liaise with GBSS about ensuring you come on it.

I will make sure you get a copy of the debate

David
-Original Message-
From:

Sent: 09 July 2003 11:49
To: [email protected]
Subject: The Debate

Dear Mr Cameron

Well, thank you very much indeed for putting across a very emotive and precise case for the need for testing and treatment. The points made by yourself and colleague in favour of such were, in my opinion, appropriate and detailed.

The response, I feel, was not so precise and indeed failed to answer a number of the issues raised. The minister waffled in areas but on the whole seemed to put across a pre-prepared line of thought - that is, the dangers of antibiotics to mothers during labour. Yes, this is indeed true, but I felt he spent much more time on this point than was necessary and almost tried to shift the emphasis in this direction. On the positive side, he did seem open to investigating further options and indeed it was excellent that he agreed to meet and address a delegation of mums etc at a future date. On the issue of re-inventing the wheel, I was surprised at his reluctance to use the excellent research already undertaken elsewher. Indeed, as you may be aware, and somewhat closer to home, an indepth study was undertaken recently in Finland with excellent results. His response to Jane Plumb's MP at the end was also particularly poor, even though you yourself had already asked the same question and he therefore had time to give a more detailed reply.

Nonetheless, awareness has certainly been raised. We can now only hope and trust that this momentum will not be lost and that noises will continue to be made until appropriate actions are taken.

The debate was interesting and whilst I watched and listened to it all, I would still be grateful to receive a copy of same as you have so kindly offered to arrange.

Thank you, once again, for all the time you have given to this matter. If a delegation of mums is indeed arranged at a future date, I would be very interested in being a part of same, albeit living where I do, I realise this may not prove practical.

With regards

butterflymum · 11/07/2003 14:03

Just to try and keep Strep B messages together, I am copying the details of a post put up under 'Pregnancy' today

here

Have a read if you get the chance, it shows that awareness etc is still an issue and that mums need to check most things out for themselves.

butterflymum · 15/07/2003 15:01

For those who may have missed it, here is yet another mumsnet thread talking about recent experience as a Strep B carrier:

Strep B experiences

Yet again, this clearly shows why more needs to be done.

mears · 16/07/2003 01:00

Butterflymum - are you aware of the consultation that is going on at the moment regarding the NICE guidelines for antenatal care?
There is a section on group B strep which states that there is no evidence as yet for routine screening. The link is for the pdf format of the document. page 145 has the recommendation.
here

There is a list of stakeholders who people can comment through- groupB support is represented on the list.

mears · 16/07/2003 01:03

Here is the link for info about the guideline

here

mears · 16/07/2003 01:06

Forgot to add that I only heard about the formulation of this guideline today (or should I say yesterday.

butterflymum · 16/07/2003 12:34

Mears,

Thank you for those links. I was aware of, but had not seen a copy of the guidlines. Indeed, the Parliamentary Under-Secretary of State for Health
made mention of same in his speech last week. It is good to now have been able to read same.

Yes, as with the National Screening Committee and the Royal College of Obstetricians and Gynaecologists, NICE does not recommend routine screening for ante-natal GBS. However, they themselves all seem to agree that there is insufficient evidence in a UK setting and that further research is needed. NICE recommendations stated " effectiveness and cost-effectiveness of screening.......is uncertain and therefore is not recommended". The report ended by saying further research is needed.

The minister also stated that the Health Technology Assessment Research and Development Panel considers research into screening for GBS to be a high priority for further research.

I think, overall, the agreement that more research is needed is an important move in the right direction. The wheels are in motion.

Mears, I will scan my verbatim copy of last weeks debate (kindly supplied by David Cameron, MP) and email same to you for your info.

Thanks again butterflymum

Mangar · 17/07/2003 21:51

Hi Everyone, I came accross this brill site looking for advice on Coil removal and found this thread. I have an 8 year old daughter who arrived when I was 18 (young I know) As well as being scared with the whole process of giving birth, after a 38 hour labour my little girl was born not breathing and was whisked away, with my husband running behind, upto NICU, I was oblivious to everything that was going on and was told on many occasions whilst they were "Finishing off" that she was fine. After 3 hours I was wheeled up to NICU to find my daughter on a ventilator with a central line and every machine possible stuck to her tiny body, she had Group B Strep, very badly. Thankfully after 5 days on a ventilator and having been pumped full of antibiotics, I was allowed my first hold and she came home 5 days later. This expereince scared me and my husband so much we decided that as the consultant said there was a great chance of passing this on to our next child that it wasn't worth the risk and decided to stop with one child, even though our hearts were set on 2. I wish all this information was available at the time as i would have felt so much better knowing there were other people who had been there tooand that we didn't have to give up on having 2 kids! It has made a big difference 8 years on to know finally what GBS is as I feel I wasn't given any information about the problem whatsoever at the time. Thank you all who have contribuuted to this thread, you have made such a difference that we are finally considering giving our gorgeous daughter a little brother or sister. Keep up the good work.

butterflymum · 17/07/2003 22:10

Hi Mangar,

Welcome to mumsnet. Thanks for sharing your story - that must have been a very frightening experience for you - thankfully it all worked out well though.

I am glad that you now have more confidence to consider a further pregnancy - that is excellent -
although it is such a pity that you were not given adequate support and information to help you make this choice sooner. Anyway, I wish you all the best (remember to post on the Pregnancy thread if/when you are).

Please check back on this thread too and add to it as you see fit. The more we share our experiences both past and present,good or bad, the more we help raise awareness of all the issues.

Take care.

butterflymum

Mangar · 18/07/2003 14:30

Butterfly mum,

Thanks for your reply, I have been having a look around the site and have found a few threads concerning GBS, It is brilliant that all this information is here to raise awareness of GBS, I have 3 friends and my sister who are pregnant at the mo and have advised them all to be tested as they saw what I went through and I would hate for anything similar to happen to them. I will keep watching this thread, it made me realise that although it felt like my world was ending, I was actually one of the lucky ones, and now I hope I can help raise awareness so that testing will eventually become mandatory.

Discovery Health have had a couple of their Birth Day programs regarding GBS and it seems like testing at 35-37 weeks is the norm, and having 2 lots of antibiotics reduces the risk from 1 in 300 to 1 in 1000!

butterflymum · 18/07/2003 15:25

Mangar , that is great that you are prepared to help raise awareness - best wishes in doing so.

By the way, the statistics are even better. GBS support state that "these antibiotics are highly effective - if a mother known to carry GBS at delivery receives them as recommended, the risk of her baby developing GBS infection falls from around 1 in 300 to less than 1 in 6,000".

35-37 weeks is the best time for testing, but remember that the current NHS test is only about 50% accurate. A newer, more reliable test is available privately.

winker · 20/07/2003 21:11

Just to update those who were around early last year I haave now a beautiful baby boy who is 12 weeks old thanks to a great consultant and the fact that I could demand my treatment, My heart is with all of you who have lost a baby AND GOOD LUCK TO ALL WHO ARE TRYING AGAIN.

winker · 20/07/2003 21:20

As a reminder, I lost a baby at 20 weeks when my waters broke with strep b infection and after fertility treatment again this time my Consultant agreed that he didn't have all the answers and I was able to write my own plan of care! I did actually take antibiotics since week 10 as I was so terrified of history repeating itself and as soon as I went into labour 3 weeks early I was swabbed and given I.V. antibiotics prior to delivery. I vowed that I would shout as loud as I needed and wouldn't care if people thought I was pushy and would do the same again.When I lost the baby in 2000 I kept a journal, I was bitter and sarcastic at the time and used it as an alternative to 'Emmas' Diary. One day I would like to publish it to share exactly the emotions and traumas that go with losing a baby due to strep B. I think that anyway that awareness can be raised regarding this dreadful infection is valuable and hope that one day the statistics are reduced.

butterflymum · 20/07/2003 21:29

Hello winker

Although I wasn't around last year when you suffered your tragic loss, I trust you will accept my sincerest congratulations on the recent birth of your son. Well done. It doesn't matter if even one person thought you were pushy - you had every right. The result speaks for itself.

I am sure you will continue to raise awareness any way you can - that is important - but also enjoy your new baby as you well deserve to.

Best wishes.

butterfly

Demented · 20/07/2003 21:57

Lovely news winker, congratulations!

butterflymum · 27/07/2003 18:59

Drib, are you keeping ok?

Mears, I have just sent you the copy of the debate as promised - sorry about the delay.

Parliament now on holidays - signatures on EDM stand at 216 - hopefully momentum will gather again in the Autumn.

Everyone affected by GBS in any way, please remember the campaign over the summer and please continue to support it in the Autumn and beyond.

Take care one and all.

butterfly

mears · 28/07/2003 00:18

Thanks butterflymum

butterflymum · 28/07/2003 22:15

Thanks for getting in touch Drib - I have sent you an email.

butterfly

Oakmaiden · 03/08/2003 09:39

A link for you all: BBC News