Our Miscarriage Care campaign: NEWS

[RowanMumsnet]

Hello

As lots of you will know, our long-running Miscarriage Care campaign asks healthcare providers to implement our five-point Code of Care - based on MNers' experiences and views - for all women seeking healthcare for a miscarriage or suspected miscarriage. (Lots of the points are also applicable to women experiencing stillbirths and ectopic pregnancies.)

We recently ran a big survey to see how things are looking, and next week (commencing June 16) we're going to be kicking up some noise about it, with a strong ask to national politicians in the run-up to the 2015 General Election. So please watch this space and get your sharing fingers ready...

We also wanted to let you know that we've made some changes to Point 4 of the Code, to reflect the fact that the ERPC procedure has been renamed (which was one of our campaign aims), and also to reflect the fact that lots of you feel strongly that women should be allowed to choose surgical management of miscarriage if that's what suits them best. You can see the new version here.

And finally: our hashtag for previous versions of the campaign has been #bettermiscarriagecare, but frankly that's a bit long. So if you have some ideas for short but arresting hashtags, now's the time to give us your suggestions.

Thanks very much - as ever, please let us know what you think.

[Igggi]

They were just trying to get rid of me, I don't believe it was risky either.

[Bracquemond]

Point 1: “Supportive staff”- Some hospitals are a disaster in this area. They should be aware that women from other countries, including Poland, are extremely sensitive to matters involving miscarriage but that it is not always as openly discussed as it is here. I know of one woman who said that “the baby died inside me, and I was given a ‘list of options’, without any advice or support”. She felt that the nurse in question had just “shrugged it off”.

[Ketchuphidestheburntbits]

I'm sad to hear that medical attitudes towards miscarriage support hasn't moved on in the past 25 years since I experienced my loss. I went on to have two wonderful children, who are now adults, but I have never forgotten how nice some of the HCPs were during that time and, unfortunately, how unsympathetic others were towards me.

I can't believe that the word 'abortion' and the term ERPC is still being used in relation to miscarriage in this day and age.

So many wonderful advances have been made in many areas of medicine, yet miscarriage healthcare still seems to be stuck in the 1950s.

Well done, Mumsnet for running this campaign!

[RevoltingPeasant]

Brac why Poland out of interest? How fascinating that there are cultural differences around this!

I will be interested to see what happens in my EPU scan on Monday - gulp.

[LadyFlumpalot]

This probably seems really silly, but one thing that sticks in my mind about my miscarriage was the literature I was given afterwards. it was a really, really badly photocopied leaflet. It was clearly a copy of a copy of a copy and was barely legible. I think it made it seem like my devastating miscarriage wasn't anything important. I think that attention needs to be paid to the little details as well.

[oohdaddypig]

flumpalot that doesn't seem silly. I agree with you. A lot of the NHS leaflets are like that - copies of copies. It wouldn't be beyond the wit of man for someone to print off an original before copying....

[ThisBitchIsResting]

Good work MN.

I had a mmc at 11 weeks. Bled for two weeks then it stopped. I tried to get over it but was feeling bloated and awful and no period returning. Then 9 weeks later, I passed the fetus - it had been clinging to me, even though it had lost life months ago.

I have not seen a doctor or anyone - I went to A and E in desperation, after 3 hours of waiting had to leave. Spoke to GP receptionist, she got GP to call me back and he didn't understand at all what had happened and told me it was 'probably just a clot' - it wasn't. Me and DH held it for ages , crying, before kissing it goodbye and flushing it away. Then I tried calling epu. Who called me back when I was commuting to work on a busy train , and asked 'so have you had a positive pregnancy test ?' And then 'oh so you passed a clot mid cycle?' And I couldn't talk because I was on the train. So I haven't seen anyone. And now I'm depressed about it, genuinely awful, and have this weekend at last had a proper period, 4 months after the bleed that the epu said was my miscarriage. If DH and I survive this we'll survive anything I think.

[ThisBitchIsResting]

(To clarify - I went to epu when I bled and they confirmed it was miscarriage, confirmed with a second scan a week later, surgical management 'not needed' ha)

[Igggi]

So sorry for your loss, thebitchisresting and for the horrendous time you have had.
Please do see your GP once you're up to it and get all the info logged.

[Bracquemond]

Brac why Poland out of interest? How fascinating that there are cultural differences around this!

Possibly because it's a Catholic country, or just the remnants of former communist health spending: perhaps they take birth and related matters more seriously. For example, when giving birth in Poland you are always attended by a doctor. The midwife is not left to cope on her own. In this country you have to be half dead before a doctor can be persuaded to enter the room.

[RowanMumsnet]

Hello

We're kicking off the campaign today, so we've got a new thread here with all the details.

Thanks
MNHQ

[Jenni2legs]

Pharmacies need to be trained too - my husband went in to our local asking for cocodmol (while I was waiting to be discharged after surgical treatment for suspected molar as that is what the hospital recommended I use for pain relief) and they said 'no, she can cope with just ibuprofen'. I went into Boots myself straight from the operation - looking like shit, pale and clammy and they gave me some.

[emzz1]

I just wanted to say thank you! You are really high lighting the mistreatment many women receive, following a miscarriage. Thank you for being brave enough to tackle the issue!
I have had first hand experience, having suffered two miscarriages and being spoken to often... like my pain and emotional trauma meant nothing! It felt like I had to fight for some consideration, some care...unfortunately I really didn't have the emotional strength to fight!
After trying to conceive for over three years in the first place...then being told how to 'make a baby' really started the ball rolling on rather a horrendous journey! I was offered no help! No after care! (Oh I tell a lie...I was given a leaflet!) I was incredible ill after my first miscarriage and spent three days in hospital... Where one doctor stormed out of an examining room, (after speaking to me in a disgusting manner, leaving me in tears...in fact I was so upset, I refused to allow her to examine me...)
Then after having a second miscarriage , I was told by a nurse that 'they didnt know where they was going to put me' as they didn't have any beds and really I had arrived at hospital at a bad time! (So sorry, next time I have a miscarriage I will ring first to double check I have miscarried at a more convenient time!!!!)
It is only now...several years after the miscarriages I have now plucked up the courage to have counselling...
My lovely Husband and I have no children...but I try to concentrate on the positives in my life...my wonderful Husband, family and friends...
Thanks again Mums net...for you fight for change and to give many, many women a voice!

[squizita]

We still need to clear up this confusion between RECURRENT MISCARRIAGE and INFERTILITY. GPs not knowing the difference means delays for both groups of women... :(

As far as I can see from reading up on both: if the egg has implanted and HCG is given off, it is a miscarriage.

Too many women are sent off for 'chemical pregnancy' testing when in fact they have a clotting disorder or translocation issue. :(

[MAsMum]

Squizita I totally agree. I had 4 m/cs and after the 4 th had a midwife tell me that I had not been pregnant. I explained my condition ie that the egg doesn't implant properly and she said "How strange! Your lucky, your doctor likes taking on challenges because you are a mystery!"

Thankfully, my doctor was allot more knowledgeable and empathetic and 4 weeks later he had worked out what was wrong.

[RevoltingPeasant]

Just coming back to this thread, as I went for my EPU scan this morning and against the odds, there was a heartbeat. So I have not MC after all.

However, again my treatment was fantastic and I am aware how lucky I am. The receptionist was kind and smiley and clear about what I needed to do. Another woman had brought her DC into the waiting room and they were kicking off, so she unobtrusively found side rooms for me and another lady to sit in.

The technician and doctor and nurse were all great, professional and brisk but friendly and gave me the chance to ask questions.

My hospital is in a not-that-well-off area and is often stretched - so if they can manage it, anyone can! Well done MN for pushing on this issue. I can only imagine how I would have felt if I'd been treated dismissively today.

[PES24]

So Glad you have started this campaign and highlighted the inadequate way miscarriage is dealt with, especially as so many women suffer this. A natural miscarriage at 12 weeks (first time pregnant) in Feb was made all the more traumatic by:
A. Not being warned about the possible pain (I ended up calling 999 as I thought I was dying/eptopic, turns out miscarriage can be like as painful as labor, something my female doc cheerily confirmed 2 months after as if I was meant to have known). The only advice I had from my (male doc) was "have lots of cups of tea"! A good sentiment but some extra info would have been good to!
B. Being asked by the A&E Doc why I hadn't kept the fetus as if I had made a grave error!!?? When I called 111 (absolutely pointless) they sort of suggested (if it was MC)I could If I wanted some tests done (needless to say I couldn't really face finding a margarine tub to put my aborted fetus in as I was being rushed to hospital in agony and bleeding very heavily)
C. waiting all weekend (fri-mon) for my scan to confirm everything had come away, then to have to sit in waiting room with women at different stages of successful pregnancies.
D. Worst of all my doctors surgery not telling the midwife team that I was no longer pregnant a having a phone call TWO MONTHS later at work asking why I hadn't shown up to my appointments!! the mind boggles. I sort of assumed that you didn't have to call and break the news to them and the surgery would have that one covered.

That said all of the staff I encountered couldn't have been kinder/done better. I realised that its not the professionals fault but more to do with admin/out of hours care/being more forthcoming with information about what to expect if anything, two of which are pretty straightforward. I'm a lover off the NHS and think we are sooo lucky to have it so never made a complaint through PALS even though I was encouraged to do so by the EPAU. Totally get that you have to keep things in perspective when resources are limited but I think hospitals need to start considering how emotionally shattering this is for women.

[Rejjie]

I urge everyone to contact the three mps on the link above either by email or twitter. I have emailed all three using the template but adding a small amount of my own experience to make it more personal. There is so much I am learning as I go along. My miscarriage started three weeks ago today and I am still bleeding after misoprostol last week. As this is an issue that people only tend to talk about with those closest to them it can be hard to know what to expect. We really need to get this issue out in the open and make some changes. Miscarriage is, unfortunately, too common to not be given more attention and respect. Well done Mumsnet.

[ASayer82]

I have been pregnant 5 times and have two children. I have just stopped bleeding from my last miscarriage and I'm still struggling emotionally.

The EPU at my local hospital consists of a shabby waiting room and a scan room situated at the end of a corridor that leads to a new mum and baby ward - so you can hear what might have been. The care I received from the nurses was empathetic but the same cant be said for all staff.

My first mc was confirmed and I was told to go back into the waiting room to wait for the doctor - the room was filled with very pregnant women so I ended up stood in the hallway sobbing into my husband's shoulder.

When my second early mc was confirmed the doctor flippantly remarked that I hadn't really been pregnant because the loss was so early and I should just treat it as a period!

This last time I went to A&E with spotting and was terrified I was mc again. I commend the short wait to see the relevant people however it was too late to gave a scan because it's only one lady that does the scans and she, understandably, doesn't work 24/7. If you need a scan in the evening or over the weekend you're out of luck! The gynecologist was unable to see me due to two emcs so I was told to go home and wait for the scan.

This was in 5 days time because they had a massive backlog of early scans due to holiday. I was devastated and needed to know what was happening - 5 days would have killed me. We ended up paying for a private scan which confirmed I was mc. This allowed me to prepare for what happened over the weekend as I lost what was supposed to be my baby. Had I not had the scan I can't imagine how I would have dealt with what I saw over those few days.

There is no aftercare, no follow ups, no offers of support. You are just left to cope with what happens. There needs to be more for us because it's very sadly such a common thing.

[Notthisyear]

My local EPU has the theme from the Exorcist playing as their phone ring tone. I kid you not.
When you are waiting you hear the bloody tune repeatedly.

[thistooshallpass40]

Having been through 3 miscarriages within the last 18 months and experiencing some really inadequate care, I am so pleased to see this campaign. Every point of the code chimes with me and I am emailing the MPs. I am now 40 and lucky to have a 3 and a half year old boy. My first loss last year was at 12 weeks - I was put on an antenatal ward, having spent half the night already on A&E, as the hospital said they had no beds anywhere else. I had an ERPC and I didn't even know that it was an option to have choice over retaining my baby's remains as noone mentioned it. I had lost so much blood I wasn't thinking straight and that should have been raised with me. With my second loss, I had a scan at 7 weeks and there was a heartbeat; following some bleeding on the day before our 12 week scan we went straight to hospital and were told I would have to wait until the next day to have my scan as it was sunday and there were no facilities. I told them that I couldn't believe they were expecting me to wait 24 hours to check if all was well with the standard 12 week scan. I pushed this point and thank goodness I did, they found a way to do it and it showed there was no longer a heartbeat. With my third loss, I had a scan at 6 weeks and 2 days which showed a heartbeat and I had a scan at 8 weeks and 2 days and there no longer was. I am so glad that I insisted on and was supported by my consultant in having 2 weekly scans - if there can be any silver lining, at least I was not waiting a further 5 weeks, as I was the 2nd time, to find out that in fact all was not well and hadn't been for several weeks. However, directly from my scan I was met by a junior doctor and the first thing he said was 'at this time we must be calm with our emotions' (??!!!), then told me that the good news is that I still have a 60% chance of having a live baby as for every loss your chances reduce by 15%... he hadn't read my notes - I have had 3 losses not 2 - that means 45% chance not 60% according to him! I was then handed a denture pot (?!) in which to place the fetus if it passed at home with a 'sorry, we've run out of anything else'. On phoning the gynae ward as the fetus passed at home and it was bank holiday sunday and the EGU closed, I was asked why I thought I was entitled to karyotyping (chromsomal and other testing) on ONLY having had 3 miscarriages and why I had not got the correct form for sending off the fetus for testing...I explained my consultant had said this is what should happen and eventually, with 2 days of calls to different medical professionals, our denture pot was sent off for testing... An already painful process on so many fronts - physical, emotional and psychological, made so much more painful by those who are apparently there professionally to 'care'. Sorry for length of this.

[squizita]

Thistoo contact the miscarriage association for success rates: the Junior Dr was wrong. If you have no blood disorder or translocation, the odds don't drop like that each time: those stats are from the 80s and earlier and not accurate at all. The book "Miscarriage, what every woman needs to know" also has accurate information on this. If you feel up to it, contact PALS. He gave you incorrect and hurtful advice.

MUMSNET on the topic of advice, alongside removing terms like ERPC, can we think about "chemical pregnancy". I have seen/heard this for losses after 5 weeks ... and when this is used it can affect care not to mention it is usually a hurtful fob-off suggesting the woman shouldn't be that sad. Because a chemical pregnancy means the egg/sperm never implanted, if the woman has had a test positive it is a miscarriage even if early. This news story outlines how some women are told they are infertile ('chemical pregnancies') when they actually need testing for miscarriages:
www.express.co.uk/life-style/health/241537/My-sticky-blood-caused-me-to-lose-five-babies

Both emotionally and for treating conditions, they need to avoid using this term except in IVF cases where it actually is a chemical pregnancy: very few women walking into EPUs fit this bill.

[RowanMumsnet]

@Notthisyear

My local EPU has the theme from the Exorcist playing as their phone ring tone. I kid you not.
When you are waiting you hear the bloody tune repeatedly.

Very glad to hear you had good news, RevoltingPeasant.

Thanks very much for all the comments and do please keep emailing, tweeting and otherwise contacting those three politicians - we want them to feel this can't be ignored! Norman Lamb has tweeted in response, and we're hoping to have some other news soon...