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.

[Granny68J]

My lovely daughter-in-law had her 12 week scan today. She was told that there was no heartbeat and that her baby was dead. She and my son left the hospital in shock, having been told they would be informed later in the day when an appointment could be made for a further assessment.

They heard nothing from the hospital and following my son's repeated efforts to talk to the relevant department, they were informed that the assessment could be done tomorrow but that any necessary surgical procedure could not be carried out until next Tuesday.

For five days, this poor girl will have to live her life knowing that she is carrying a dead baby. I am stunned by the inhumanity of this. Is this a common occurrence now in NHS prenatal care? Am I being unrealistic in hoping for immediate action in this situation?

[Bonniepurple]

I experienced appalling mmc care in 2006 (being given the tablets and sent home to labour on a mattress on the floor (we were moving house that week). I was too upset and out of it to complain, but I have used my experiences to help others who have suffered a mmc decide on the best option for them. I had hoped that things would be different now, but it seems sadly not.

I KNOW that a mc or mmc is not life threatening. I KNOW that NHS staff are very busy and to them it is routine. I KNOW all this. I also know that common sense and compassion should be used, and that it costs nothing to say "I'm sorry. Is there anything that I can do to make it easier?".

The final indignity I had was in 2008, when pg with DD2. The first mw had put down number of previous pgs as "1". I corrected the mw at the next appointment to be told "it doesn't matter". I was so flabbergasted that I didn't say "it matters to me". Needless to say, I changed my GP practice (and therefore mw) after that.

[thistooshallpass40]

Thank you Squizita and Madrigals. I am heterozygous with factor v Leiden but I think this was also lost on that junior doctor! I ended up on IV anti-biotics for womb infection following third loss and the fact of my clotting disorder was unknown by the nurse caring for me in the Surgical Assessment Unit until I raised it with her when I suggested if might be an idea if I had a walk around as I had been lying down for a long time! I know resources are stretched but that is not an excuse for important base line information not being passed on and for a lack of humanity in contact with others involved in caring for women, and their families, going through mcs

[squizita]

Flock yep I've been told all sorts e.g. "how can you still be pro choice?" "How dare you moan about backache, you're lucky to be pregnant" "how come you aren't angry/bitter at other women, I thought that was normal?" And so on.

[FlockOfTwats]

I agree with Bodicea that the scanning thing is a bit sensationalist. I do wish all EPAUs were like the local one here though - It is on a drop in basis so you don't need a referral or appointment. You just ring them directly and tell them what the problem is. I think everywhere should have that system. It's much easier. It's also separate from where they scan you if you're already amitted to hospital for problems, so there is no clashing with referrals from MAU/Obs wards as they have a separate ultrasound unit altogether (Or did last time i was there, i am assuming its still the case).

I also would like to suggest something for the 'don't say' collum - Don't assume you know how the woman feels just because you've had one. I had an ectopic pregnancy. I was incredibly ill. I wasnt upset about the pregnancy. And i was left feeling like a freak by other women for this. I have been told i must be lying about it because no normal woman would have my 'attitude' about it.

I would never seek to apply my own feelings to another woman suffering a loss, Just because i did not feel an attachment to the pregnancy, So it upset me that it didn't work the other way around.

[Igggi]

I don't see a problem with being scanned quickly, if the results are not conclusive no action will be taken. It then gives a baseline from which to compare the results of a subsequent scan. With one of mine I got a scan following bleeding - turned out baby was still there but with a slow heartbeat. Follow-up scan in a week confirmed heartbeat bad stopped. If I'd had to wait a week I might have hoped for longer; also id never have known about the heartbeat which for some reason is very important to me.

[Hazchem]

I think the contact point is so important. I had the ED doctor call me twice just to see how I was doing until I was seen by my GP to confirm the blood work. I felt Like I had support right from the time I called Health Direct (NHS direct equivalent) with my first lot of spotting. I think I was particularly lucky as the ED was pregnant at the time and had one miscarriage so she was able to explain what might happen but was also able to share how she felt during hers.

[squizita]

...also worth pointing out in the USA where scans and treatment are given very quickly, there is a push for slower treatment. Women worry because some (only about 2% or so, but some) women have scans a few days apart and it turns out they lost 1 of a twin or there is a HB etc'. There are some emotive websites on this anxiety (I won't link as they are triggering and don't apply to UK care IYSWIM).
So taking things slightly slower but not just leaving a woman in limbo is there for a reason.

The problems arise when people just aren't seen by anyone for a week or so... which I have heard.

[squizita]

Yes exactly.

In the original survey I almost wondered whether things that were upsetting (but have to happen) were being confused with things that were poor care. Some questions treated one like the other.

For example what is done with remains. The last thing I'd ever want to hear of is a woman who, for example, miscarried at home and was asked not to save the remains of her fetus at all, or a hospital never retaining them because (and we know this can happen) new guidelines were followed too mechanically.
This could lead to a treatable health condition going undiagnosed and further losses, and just plain having no answers.
In rare cases, molar or partial molar pregnancies might go undetected and trigger cancers.
I knew these things as my losses progressed: but many women wouldn't. They would be upset about the 'collecting' and 'experimenting' as no one told them.

Again it's all in the communication here: "we know it is deeply upsetting but we need the remains of your pregnancy to help us find out why it happened and give you help" vs just taking things/giving a pot.

[Hazchem]

I hadn't noticed the 24 hour thing. I had to have the HCG level check and buy the time that was done it was 5 days after my first symptom. I had an ultrasound on the first day but without the blood work they couldn't confirm if it was just not showing a heartbeat because it was too early to tell.

[squizita]

Bodica yes that headline puzzled me, because I know in order to avoid accidentally removing a living/tiny fetus they will scan twice or wait. I suppose the difference is this has always been explained by the GP referring me ... Whereas others maybe not. Again it comes down to respect and HCP not just saying anything but explaining properly.
Additionally if there is pain and bleeding it should be a same day scan to rule out ectopic - which can become dangerous in hours.

[Bodicea]

Whilst I applaud the general gist of the campaign I do find some of it a bit sensationalist. For instance the waiting over 24 hours for a scan headline. I don't think that that is really very bad in the grand scheme of things. You want to be scanned by someone who knows what they are doing. You want specialist skills. You don't get specialist skill unless they are doing it all the time. Therefore you can't employ too many people to do it otherwise they would become deskilled - if it was spread out across too many people - if you get what I mean. Therefore you can't expect them to be available 24/7. It just isn't practical. Personally I would rather wait for an expert than get a scan quickly off someone who doesn't really know what they are doing.

I have to say my care after my two miscarriages was great. We are very lucky in this country.

[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...

[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.

[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.

[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.

[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.

[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.

[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.