Strep B (new Thread from 17/3/04)

[butterflymum]

Hope people don't mind, but as there are now over 200 messages on the original, I thought a new thread would be useful. Here is a link to the original for anyone who would like to read same:

Original Strep B Thread

Also, as GBSS have a new campaign they are looking for support with, I herewith copy the most recent message:

Hello everyone.

I M P O R T A N T *

Jane Plumb of GBSS is looking for as many people as possible to help with another Strep B campaign. I thought some of you on this thread may be willing to help: The details are as follows (ie copied and pasted from her email:
***

"As you may know, the Government is seeking the opinions from people around the UK about all kinds of issues, including health and where Government money should be spent.

At GBSS we believe preventing preventable cases of GBS infection should be a priority, both through implementing a screening programme for all pregnant women and through increasing the knowledge and awareness of what should/could be done both amongst health professionals and expectant parents.

The Green Top Guideline on GBS published by the Royal College of Obstetricians & Gynaecologists (RCOG) last November is an enormous advance towards greater prevention - GBSS is very supportive of this guideline (indeed, GBSS has been advocating a similar risk-based approach for over 7 years!) . When fully implemented in the UK, this guideline will prevent the majority of lethal cases of GBS infection in newborn babies. The biggest difference between GBSS?s position & RCOG?s is that RCOG does not advocate routine tests for pregnant women for GBS colonisation and we do - medical evidence shows that even more GBS infections could be prevented through adopting a screening approach to GBS prevention, using reliable test methods, rather than just a risk-based approach. However, existing swabs are unreliable in that they give a falsely negative result up to 50% of the time when the result should be positive - reliable Enriched Culture Medium (ECM) tests exist but, at present, these are only available privately (and we only know of one laboratory which offers this reliable test - contact us for more information if you need it) and are not widely publicised.

GBSS is campaigning for reliable ECM tests for the diagnosis of GBS colonisation in pregnant women to be made available on the NHS. Would you like to help move this forward? If you would, then please visit www.bigconversation.org.uk/index.php?id=682 and in the box asking for your comments, paste in the following (assuming you agree with these statements of course!):

1 . Reliable enriched culture media screening tests for GBS during pregnancy should be made available on the NHS as a matter of urgency .
2. High quality information on preventing GBS infection in newborn babies should be made routinely available to all pregnant women and their health professionals

Doing this really will make a difference. And please forward this e-mail on to any of your family, friends or contacts who you think might like to support this campaign! The more people who highlight this as an issue, the more likely and the more quickly it will be addressed.

Please help if you can. Thank you."

---------
Phew, sorry that was long.

Thank you for taking the trouble to read this and, if you can help, an extra special 'Big thank you' from me too.

butterfly

Ooops, of course title should read "from 17/3/04".

Sorry for mistake, have sent email requesting the powers that be to amend this for me.

Thanks for amending the title, Tech.

From Jane at Group B Strep Support:

"thought you might like to know that GBSS members Helen & Tim James and their 6-month old son, William, are due to appear on "This Morning" tomorrow to talk about their experiences of GBS - though we don't expect William to do much of the talking. The show is on ITV and starts at 10.30 am, finishing at 12.30 pm - Helen & Tim's 'slot' is currently scheduled for 11.45 am."

Some of you may be interested in watching this.

butterfly

Has anyone heard from Drib? I think she is due around now.

Saw the This Morning program, I can't believe two babies a week die of this, and it can be prevented with a simple test!.

Found out I carry Strep B when I had my daughter last September, I was sent home when my waters broke. If I'd have had the test this wouldn't have happened, I had a raised temperature in labour and my daughter had an irregular heartbeat, luckily I was given IV antibiotics during labour. And she's a lovely bouncing 6 month old.

All I was told was there could be a risk of infection, until a trainee mw told me what it was and gave me a leaflet. When I read it I was distraught, I had no idea what it was. I would have gladly paid for a test at my booking in with the doctor, why is this not happening?

Is there any other ways of getting this publicised more, and making tests routine?

*
New Early Days Motion needs your support - please help if you feel able to (you do not need to be a GBS carrier or have been affected personally by GBS issues.
*
Anyone involved in last years original Strep B thread (see link at start of thread) will remember the campaign to raise MP/Government awareness of Strep B issues. This took the form of asking your local MP to support an Early Day Motion (EDM). This was very successful and the MP who raised the EDM secured a debate on the issues. However, it is important not to let that good work go to waste, but to build on it.

GBSS are once more asking for your help. David Cameron, the MP who tabled last years EDM, has tabled another all-party EDM this year to help further the matters.

As with last time, it would be great if interested Mumsnetters felt able to help by viewing the EDM and checking if their MP has signed here .

If they have, great, if not, please write to/ visit your MP and ask for his/her support. If/when they have/do sign, please drop them a thank you note and ask if there is any other way they can support the campaign.

GBSS have again put together a 'Standard' letter and information sheet which you can use (download from their site). If you use it, please remember to 'personalise' it for more effect. You do not need to be a GBS carrier to ask your MP to help, merely a supporter of the aims of Group B Strep Support group. You can form your own letter if you wish and the key points to include would be

1. Your name & address
2. Your MP?s name (address below)
3. The Early Day Motion reference number (973)
4. The Early Day Motion title (Group B Streptococcus)
5. The fact that it is an all-party motion;
6. The fact that you are a constituent of that MP; and
7. That you expect to receive a response to your letter

Letters should be sent to your MP at the House of Commons. You can check for details of name etc
here by entering your postcode.

Sorry for the long post, if you have read this far 'thanks'.

Thank you, once again, for any support you can give to this campaign.

butterfly

If the link to view the new EDM doesn't work for you, try this one here
instead.

Also, for your ease of reference, here is the
Group B Strep Support Group website .

PS There are already 117 signatures so it has got off to a flying start!

Hi,

I'm new here - I was diagnosed with GBS after my son was born 14months ago. Both he and i were treated with antibotics.

I'm thinking of having another child but am very nervous about it. I understand that i would be given antibotics durning labour but can any of you give me any advice. Is there anything else i should be aware of during pregnancy? Should i be tested for GBS again?

Any advice would be appreciated.

M

Hello 1mum. Please try not to be nervous about trying for another child because of your unfortunate experience with GBS after your first child was born. Your are now in the excellent position of knowing you are a carrier and can gather appropriate information and advice to hopefully ensure that next time round, all the worry will be avoided.GBS, in itself, is not an indicator against further pregnancies and many mums with previous experience of problems have gone on to have subsequent children who have needed no treatment. You can be tested again in any future pregnancy to see if the GBS is active (around 35 to 37 weeks) but as a previously diagnosed carrier, your hospital may give antibiotics during labour as a standard precaution. You can ask them in advance about their policy/protocols for dealing with GBS mums-to-be. If you have not already done so, I would strongly recommend you have a look at the GBS support group website. If you find the website a little daunting and 'too much to take in', then why not phone them. Jane or her helpers will gladly give you any info/help you need in moving forward with your decision to have a further child.

Hope this helps.

butterfly

PS If you also feel able to support the campaign to have MP's sign the current Early Day Motion, that would be excellent( indeed if anyone else reading this also feels the urge to suppport the EDM by writing to their MP, that too would be excellent!). The more people who can help by writing to their MP's the better. Signature, as of today, now stand at 127.

Was this info of any help to you, 1mum?

176 signatures now, yet more still needed....thank you to anyone who has asked their MP to sign....every one helps pave the way to keep the issues current on the political agenda and hopefully, one day, help set in place, appropriate and UK wide, methods of providing information, testing and treatment to mums-to-be and effective education on all these matters for health professionals.

butterfly

Have emailed mp found it from link given hope he signs The Mp for where Muma Dad live has signed

butterfly,

Thankyou for your kind response...I'm sorry i've been offline for a few weeks.

I have looked at that website but i just wanted to talk to someone else in the same boat if you know what i mean..

Thanks for your reply,

M

Had letter from MP today he has signed !!

Signatures now up to 192 - great, but more still needed.

Maybe some of the mums currently discussing GBS on the Pregnancy board would be willing to ask their MP to support the EDM?

If any of you can help, please read further back on this thread for full details of how to go about it.

Thanks for reading.

butterfly

Hi,

Is it common for a toddler (2.5 yrs) to develop a GBS infection? Mum tested positive but precautions were taken and the baby was fine postpartum.

For anyone still interested in knowing what is happening to further the GBS issue, here is a short extract from a press release issued today:

"David Cameron holds Commons meeting with Health Minister for families affected by a life-threatening infection in newborn babies.

David Cameron, MP for Witney, is holding a meeting with the Health Minister, Stephen Ladyman on 4th November in the House of Commons to ask what measures the Government will take to reduce the number of Group B Streptococcal infections in newborn babies in the UK.

David Cameron and the national charity, Group B Strep Support (GBSS) want the Government to commit to a policy to prevent GBS infection in newborn babies. In particular, they will be calling for reliable tests, currently unavailable on the NHS, to be made available to all pregnant women to establish which women carry the bacteria".

Hopefully this will reassure anyone interested that action is still being taken to try and promote change.

Some people may be interested so I have copied the following from a letter from GBS support:

"Just thought you might like to know that there should be an article in Saturday's Sun newspaper about GBS - providing, of course, that no major news story muscles in on the allotted space! This will help to raise awareness of GBS amongst adults of childbearing age (estimated readership, 9 million people - an estimated 5.4 million people aged between 15-44)."

It should include bit from 2 families affected by GBS.

Hope this helps someone.

butterfly

Hello!! Some of you may remember me as Drib, but ive hads to change my name as ive been off line for some time.

Just thought I would post you to let you know that all went really well with my pregnancy.
I gave birth to a healthy baby boy on the 15/3/04 weighing 8lb 4oz, we named him Freddie Charlie and thank god he was Strep B free!!!

If some of you dont remember me then I had a baby son in March 2003, Charlie. We lost Charlie aged four days unexpectedly to Group B strep.

It has been a rough old ride...a few scary moments with Freddie, but now he is a happy and wonderful eight month old who is just about to start crawling and I could not be happier with him. I cant wait to have another. My poor hubby has got a headache every night (isnt that the excuse we are suppost to make!!).

But there is light at the end of the tunnel and we were determined that strep b wasnt going to win and we fought it back all the way.

Hope you are all ok. Butterflymum good to see you keeping up the good work!!!

Wozzle(drib) xxx

aww wozzle1, im really happy for you that you are all happy, and sorry to hear about ur loss.

i had group b strep, but it was only discovered after i had given birth. i didnt know anything about what it was, and was given a long list of signs/symptoms to look out for which scared me. luckily she never caught anything although the test had been taken a few hours before she was born so i feel very blessed now that i know more about it, and that dd was fine. i dont think it is brought up enough by midwives/nurses etc as i had never heard of it throughout my pregnancy, and only when they found out i had it was i told, and even then they didnt explain very well what it was. everyone i mention it to has never heard of it either

That's lovely news

So glad everything went well wozzle1

Tammybear,

Im glad that everything eventually turned out ok for you. Like yourself I had never heard of Strep B, that was until Charlie had passed away and we had the post mortem results through.

The thing that annoys me is that when you ask a midwife/nurse about strep b, they pass it off like there is nothing to really worry about.
Obviously there is, because otherwise there would not be 2 babies a week dying of this.

I wont rest now until the NHS change the way they are dealing with strep b. There is now a reliable test available privately for the cost of £18. I know that the \Nhs wont pay out for every pregnant women to have this done, but why dont they offer EVERY women the chance to take this test??? It is SO frustrating.
We have a right in this day and age to know what is going on with our bodies and the risk it holds to our unborn children.
They dont even put leaflets in our antenatel infomation pack.

Sorry im starting to rant on. Once I get on my soapbox then im afraid someone gets it!!! Sorry but I just dont want anyone going through what my family are going through.

Take care and if you need any advise on strep b then contact Jane Plumb on the GBSS website (which is fantastic!).

Take care
Wozzle1 x

thanks wozzle1, and it is frustrating. if i had known more about it, i would have had the test to be double sure. there was enough complications with dd's birth as it was so when they told me it just seemed to top it off! but i do agree that it should be more well known. you take care xxx

Wozzle......welcome back!!!!

Have tried several times to contact you (even via Jane) but guess you have changed email addy or have been a very, very busy mum (hope the 'rough ride' was nothing too serious).

Was so delighted to read the 'Congratulations' note in the Autumn GBSNews (received in past week or so) and have only just now seen your post here too. So, a belated but very big "Congratulations" from me too. Love the names (yours and Freddie's ). This thread hasn't been as active of late, but I add updates to it as and when I can...like you, I haven't been on site as much recently. Eight months already, doesn't time fly (my youngest is 2 now). Hope you all have an especially lovely time over Christmas.

butterfly

PS
Another sounds good. Headache indeed - men.
Tell him it will all be worth it!