The Mumsnet Miscarriage Care campaign: what you can do

[RowanMumsnet]

Hello

As you may have seen in the press and on the TV this morning, we're launching the next phase of our Miscarriage Care campaign today.

We want health trusts to implement our Code of Care, based on MNers' experiences.

We're asking Secretary of State for Health Jeremy Hunt, shadow health spokesman Andy Burnham, and LibDem junior health minister Norman Lamb to pledge to include a commitment to improve miscarriage care, based on the principles in our code, in their 2015 election manifestos.

We need your help to make this happen - please have a look at our action page and get your clicking and sharing fingers ready.

And as ever, please post here to let us know what you think and whether you're getting involved. We'll post up more news here over the week.

Thanks
MNHQ

[RowanMumsnet]

Hello - just wanted to direct you to the new campaign update here

Thanks all

[RevoltingPeasant]

Hi - I don't know if this is worth thinking on, or if it's too trivial, but I just got my maternity exemption certificate in the post today.

The letter reads "if you have a mc before 24 weeks you must return the certificate to us immediately. If your baby is registered as stillborn after 24 weeks you may continue to use the certificate until it runs out."

Am I being precious? - but I was pretty shocked by that. It seems very cold, no acknowledgement that that would be a tragic event. Not even "in the unfortunate event that..."

As DH said, yeah, if my baby dies in utero at 22 weeks, the very first thing on my mind will be "wahey, free prescriptions for a year!"

[JugglingFromHereToThere]

Nice tweet Rowan

[JugglingFromHereToThere]

That wasn't good RevoltingPeasant - all tests should be agreed/ consent sought properly before-hand

[RowanMumsnet]

Hello again

Some of you will already know, but wanted to let you know that Andy Burnham has just said that improved miscarriage care will be included in Labour's 2015 general election manifesto - hurrah!

We need to get the LibDems and Conservatives to match this pledge if we can so do please keep up the pressure by tweeting, emailing, Facebooking and writing letters.

Suggested tweet (although of course feel free to do your own):

Hi @Jeremy_Hunt & @normanlamb pls join @andyburnhammp in pledging to improve #miscarriagecare by 2015. tiny.mn/1sbGQYv

Thanks
MNHQ

[RevoltingPeasant]

chippy that is awful. I had a doctor say almost exactly the same thing to me when I told her we were going to start ttc shortly. I hadn't even started yet but she insisted I might have chlamydia and asked how I knew DH wasn't cheating on me. I asked her not to do a test but I was in stirrups and couldn't stop her, so she did anyway. It makes you feel so awful and bullied, doesn't it, and like they're implying it is your fault.

[RowanMumsnet]

And here's the webchat link - please do join us on Wednesday at 1.45pm.

[RowanMumsnet]

Morning! This news just in: shadow Health Secretary Andy Burnham has agreed to come on for a webchat to talk about this on Wednesday lunchtime - please do put it in your diaries (we'll put up a link to the live webchat thread later on) so that you can join in, and let him know how important this issue is to you, and persuade him to make a manifesto commitment.

[RowanMumsnet]

Thank you so much for the emails, tweets and letters, and for sharing your stories on here.

Please keep going: we want to make sure each one of these politicians has to give us a straight answer about whether or not there will be a manifesto commitment.

We're pulling together some statistics about the activity last week and we'll post that up here when we have it.

[Modster2k]

leolo that's awful!! No one should have to hear that!

[leolo]

I had a miscarriage at 12 weeks, late at night and at home. I had been due to go in for a D&C the next morning. I phoned NHS Direct because it was late and I didn't know who else to call. The man I spoke to told me to 'put it in the compost'. I know I should have reported him, but I was so distressed and ill that I simply put the phone down on him.

[MrsDowneyJunior]

When I went to A&E with a miscarriage I was told it was ridiculous to be so upset when I wasn't that far along. I'd been trying 5 years.

[Whitershadeofpale]

I'm lucky enough to have never been through the tragedy of a miscarriage but I think the way that it's dealt with in the nhs is a disgrace.

One of my dearest friends was unlucky enough to suffer this tragedy twice in a short space of time. She is one of the bravest people I know struggling to keep everything together for her older DC whilst battling with the heartbreaking knowledge that the child inside her that she and her wonderful DH already loved had tragically passed away and that the nhs would do nothing to help her or her baby.

I'm immensely proud to call her my friend and don't know that I'd be able to show the strength that she did in the same circumstances but the facts are that she shouldn't have had to. Decent and compassionate care for women should be a right not a luxury or privlage and the nhs should wake up and act as such.

I've sent my emails and hope that by bumping this thread I hope that others to do the same.

[Modster2k]

Btw, I didn't give them loads of kisses, I just xxxxxx my name!

[Modster2k]

Hi, I've just sent this email to the MPs, every little helps I hope. I thought I had come to terms with my miscarriages but after typing that email I'm sitting at my desk (surrounded by blokes) and trying to blot the eyes discreetly and dropping hayfever into the conversation now and again...I don't even have hayfever!

Dear Sirs,

Please read this email to the end instead of just reading the first paragraph, thank you.

I know you'll be concerned about the care received by women who miscarry so please let me know you're backing Mumsnet's campaign for better miscarriage care. I'm asking you to include a manifesto commitment to improve miscarriage care for all women by 2020.

I was denied an early scan after my second miscarriage (7 months after the first one) and because of this the midwives and myself missed the fact that my baby had died in the period where a scan would have shown this. I believe because of this and the length of time after when I was finally given a scan (4 weeks after my initial two requests were turned down), the miscarriage I suffered (naturally and painfully, resulting in an urgent ambulance ride to A&E and a blood tranfusion) could have been avoided if my (pleading) requests had initially been listened to - my own doctor tried to push, highlighting how even he thought a scan was a necessity but was told that the funding did not allow for such luxuries.

We women don't want to have extra scans just to see a little picture of our baby. Our instincts tell us that something needs checking and for a child's sake and our own health please listen to us as a group on Mumsnet and as individuals.

Also, I understand that space in hospitals is limited and that the Early Pregnancy Units are at their maximum as it is, but surely one section/ a few rooms separate away from those who happily and thankfully, are chirpily looking forward to their 16 week scans with family and friends, excitedly chatting about names, cots, teddies isn't too much to ask? Imagine how you would feel if you had to come out of a scan room, bad news confirmed and see a sea of inquisitive faces pause, midway through their happy chatting and they know, they know, what you have just been told and you can see on each face the same thought: "thank God that isn't us".

The NHS midwives and hospital staff are exceptional, it's just a shame that MPs promises and priorities are not up to their standard.

Please consider this Code of Care to be as important as any other NHS policy, a lot of people would be very grateful if you could try.

Thank you for your time.

xxxxxx

[squizita]

Chippy that is revolting. STD test? Never ever heard of that: appalling.

[IsChippyMintonExDirectory]

Despite being on MN for some time I've never quite got round to telling my miscarriage story, I know the campaign is far along but here goes (just to add my ire):

I had an early miscarriage when my husband was away ski-ing with friends, I didn't even know I was (about 5 weeks) pregnant, 3 years ago. I initially went to the GP, who was worried it could be an ectopic pregnancy at first, and called the women's ward at my local hospital, who wouldn't see me. On his advice, I left it 12 hours and went to A&E.

The hospital had me wait in a waiting room in the ward for 3 hours bleeding heavily, alone, and never came to check to see if I was ok. I was too feint to call for help.

I am quite young looking, but I was married at this point. I told the doctor my husband was away. She confirmed I had miscarried, but had zero empathy. It was like she told me I had a bad cough. Completely cold and emotionless.

She then went on to ask me when my last STD test was. I told her I was married and me and my husband had one each a few years ago shortly after we first got together, to be on the safe side. I told her this and she replied "it doesn't mean that husbands don't stray. An STD could have caused your miscarriage so I'd better take a test now." In complete shock I let her take a test (which turned out to be negative as I thought!)

They sent me on my way at 1am, knowing I had no one at home. Never asked me if I was OK, never offered support. I was a thorn in their side and I was humiliated.

It's truly disgusting what little care women receive for an event which is life changing. I suspect that if men went through something similar all the support in the world would be offered. Truly hoping this campaign makes a significant difference,

[topsmart]

Thanks RowanMumsnet, that's great to hear. Note that alongside the national Healthwatch which liaises with Westminster, there is also a local Healthwatch (or will be soon) for each local authority area, offering advice in finding services and offering support in complaining about local health and social care - and investigating issues which arise locally (through visits, surveys and the like). Perhaps that could be a conduit for follow-up to measure the impact of the mumsnet code?

[Surfermum23]

Essentialbabyland my family too have never under stood, they just awkwardly change the subject making me feel it was my fault some how. It's not, but they cannot understand as it has never and hopefully never will happen to them.

[squizita]

Glad to hear you stood your ground and got tested Kaster. What makes me so is that these tests, even at St Marys or another big RMC clinic, are relatively cheap and easy to do: mainly scans and blood tests. So why are GPs so bloody slow to do them?!? Even the most heartless thinking only of budgets must realise that a few phials of blood and an ultrasound is better than surgical/medical management time and again for everyone concerned.
A nurse once said "you'd think it was their money and their blood the way some of them are" ...too right!

[Kasterborous]

I agree squizita that abortion is the medical terminology. It is my personal dislike of the use of the word in the context of miscarriage, it just made me very sensitive to seeing it used In my medical notes. I know it's a personal thing to me.

The wording of chemical pregnancy in early loss is wrong especially if it delays women getting RMC testing. I was only referred again after six because in my eyes I'd had a further three, so needed testing again. I asked for the referral rather than waiting for my GP to suggest it. I was seen by the RMC at St Mary's within a month of being referred by my local hospital.

[squizita]

Actually there is one word which doctors over-use and which causes actual problems in diagnosis if it goes on our records. That is chemical pregnancy to describe early loss. Many Drs seem to think these happen at or after 5 weeks! There have been countless women on the MC board and pregnancy board saying "x number of miscarriages, y number of chemical pregnancies at 6 weeks..." thinking they weren't eligible for testing. Once the embryo is implanted, then you get the positive test. So a miscarriage after 5 weeks is a miscarriage.

MN can we have something in the language part about early miscarriages not being called chemical pregnancies if the embryo has implanted. A chemical pregnancy would usually not trigger a pregnancy test: it is when the sperm and egg bond but do not implant.

It's utterly devaluing to the woman's experience (basically telling her it is some lesser form of loss normally) but crucially it can delay testing because her records won't be accurate. In this news story about a woman who endured 5 losses due to Hughes Syndrome, Professor Hughes is clear that misuse of the term means many women go for fertility treatment when they need RMC treatment: www.express.co.uk/life-style/health/241537/My-sticky-blood-caused-me-to-lose-five-babies

[squizita]

Kaster termination only means someone has chosen to end the pregnancy. It should never be used to mean miscarriage. No one would ever argue that term should be used for miscarriage.
The trouble is, 'abortion' means something cut short and ended (naturally or artificially) ... but it is used by the media etc' to mean termination. Which causes so much upset as many women don't realise this and someone just uses the word.

[Kasterborous]

squizita it was in my local hospital and part of the gynaecology outpatients not specific RMC. It was exactly the same waiting area where you go for scans, be they 'routine' scans, early scans or as part of the early pregnancy assessment unit. No separate waiting area or anything. That was after the first three miscarriages. After the next three I was referred again by my GP (on my request) the local hospital then referred me to the RMC at St Mary's. That was a much better experience.

I don't think there any words you can use to adequately describe miscarriage, if it be miscarriage, termination or abortion. I don't like the use of termination or abortion in reference to miscarriage because for me those terms are when you choose to not have your baby, for whatever reason. I am not saying termination or abortion is wrong, not at all, I just highly dislike the words in this context.