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

[PlatinumPrincess007]

I too suffered a missed, miscarriage at about 8 weeks. I had no symptoms other than feeling extremely sick/nauseous. I had a scan, then was told to return in a week. I had another scan I & knew it wasn't great news when the sonographer went for a second opinion.

I had never heard of this kind of miscarriage before and some female family members were quite dismissive of my horrible experience. I tried to let my body respond naturally but this didn't happen and my Hcg continued to go up. This experience definitely impacted on my emotional being. This part of the process was not catered for. Begrudgingly we opted for tablets to bring on contractions. This was so much more painful than having my first baby who was a long, 9lb 5oz baby. My missed miscarriage impacted my life in a major way. Both at work and home. When I became pregnant again a year later I was so concerned but, I cannot fault the authority I was under at the time and was given a reassurance scan. Even my third current pregnancy (2nd baby) is affected by mental torment of the silent miscarriage. If I could help anyone by talking about my experience I most certainly would not hesitate. I felt others minimised the trauma my mind and body had been through and wouldn't want anyone to go through this process. Even though my little one wasn't classed as a baby - to me I had a living being and this is what seems to be ignored too.

[Kasterborous]

I'm going to e-mail all three. After six miscarriages I unfortunately know how bad some care can be. Like the stupid consultant who said 'I see you've had a miscarriage, oh dear'! Also the terminology like 'abortion' it IS NOT an abortion I DID NOT CHOOSE TO ABORT MY BABY.

Sitting in a waiting room full of pregnant women knowing you are there because you have lost your baby is disgraceful. The same goes for when you are waiting for tests to see why you keep miscarrying.

Then when you have your genetic testing done, it is in the CHILDRENS outpatient department.

Sorry for all the shouting.

[topsmart]

Wholeheartedly support the campaign (veteran of 4 MCs here) and wrote to my fab MP - Kate Green - the last time we were asked who is behind it too.

Just wanted to ask: have you discussed the campaign with Healthwatch? I'm sure you know, they're the new body responsible for being the voice of the consumer in health and social care in England. The govt is committed through statutory powers to listen to Healthwatch's recommendations. The code of care seems right up their street.

[squizita]

Kaster did you not get sent to a specific RMC clinic? I think that needs to be an area of focus: my care was in a small (portacabin type) centre, but it was specifically for miscarriage issues and follow up.
They took bloods in there - I daresay these were then taken to the same labs and the childrens' blood etc' but it was all in one place.
They should have that arrangement everywhere.

FWIW I have no issue with the term "natural abortion" for natural pregnancy loss because that is what it is: a natural cutting-short of the life (and I actually think it conveys the reality much better than 'miscarriage' which sounds like a kind of soft-focus woman looking sad, not how bloody awful it actually is).
But then again, the media uses "abortion" to mean termination. So the word has become tainted (especially as they are often very judgemental).
I blame the media for that not the doctors.

[JugglingFromHereToThere]

Excellent idea about involving "Healthwatch" topsmart

[JugglingFromHereToThere]

I think doctors and the medical profession generally should be more prepared to change their terminology where doing so would clearly benefit the well-being of their patients, though squizita. The use of the word abortion and the phrase ERPC are prime examples of this..
They shouldn't be so precious about their historical terminology that they can't change it when there would be clear benefits in doing so.

[squizita]

Juggling I'm not talking about HCPs being precious.

I'm talking about what the words mean to me.

To me personally, 'miscarriage' carries a lot of social baggage - secretive, soft-focus etc'. It deals well with emotional element for many women. However, to me it really, really doesn't reflect the experience of physically losing pregnancies: I prefer to use a word which makes it clear that my pregnancies were physically, painfully cut short by the death of the fetus. It's important to me that when talking in medical terms this isn't glossed over.

This may be because I always use (due to work) the word "termination" I never use abortion to mean when a woman chooses to end a pregnancy.
If we're talking about mis-use and preciousness about words, I would question why society has been trained to think "abortion" - a natural process- means "termination", as to me this is why the term is offensive to many.

[RowanMumsnet]

@topsmart

Wholeheartedly support the campaign (veteran of 4 MCs here) and wrote to my fab MP - Kate Green - the last time we were asked who is behind it too.

Just wanted to ask: have you discussed the campaign with Healthwatch? I'm sure you know, they're the new body responsible for being the voice of the consumer in health and social care in England. The govt is committed through statutory powers to listen to Healthwatch's recommendations. The code of care seems right up their street.

Thanks topsmart - we'll look into it.

[JugglingFromHereToThere]

I'm sorry if I upset you squizita, it was really just another point of view

[prettybird]

It just shows how difficult it is to use the right words.

I don't have an issue with the expression ERPC as there isn't (AFAIK) a different, more appropriate term . It's not a miscarriage, as that has already happened but the body is not getting rid of what remains . It's not a termination as the pregnancy is over and it's not an abortion as that is exactly what is failing to happen naturally.

[squizita]

Juggling no offence taken at all. :)

It's just that every word we use for women's health seems to have loads of baggage, in a way that words for non gender specific health doesn't.
I think a lot of those who have grown up in this culture are the very ones who are accidentally heartless when it comes to miscarriage issues, because the language has shaped their way of thinking.

[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.

[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.

[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

[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]

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!

[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.

[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?

[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,

[squizita]

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

[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

[Modster2k]

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

[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.