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See all MNHQ comments on this thread

The Mumsnet Miscarriage Code of Care

189 replies

RowanMumsnet · 20/09/2011 12:19

Hello there,

As some of you will know, we at MNHQ are gearing up for of the next phase of our miscarriage care campaign. (For those who would like to know more about the history of this, have a look here and here.) Later this month we're going to be asking you start making some noise about this; we'll post up more details soon.

SURVEY NOW CLOSED, THANK YOU TO EVERYONE - PLEASE LOOK OUT FOR RESULTS SOON (ANNMUMSNET) But before we do that, we have two requests. First, if you have ANY experience of miscarriage, we'd really appreciate it if you could take part in our survey. There are some fairly tough and personal questions in there, and you may find it upsetting to fill out (and of course, we're very sorry if that is the case; do feel free to close it down without completing it if it gets too much for you). We thought carefully about whether to run the survey, and about the questions that are on it. We decided to go ahead because evidence of MNers' experiences is probably the most powerful way to get our point across to politicians, officials and the wider world. Please rest assured that all survey responses will remain completely anonymous, and won't be linked in any way to your MN nickname or RL identity. All the data in the survey will be treated confidentially, and no individual data will be looked at unless you add your details under Question 18. As some small compensation for those who do manage to fill it in, there are free subscriptions to Grazia magazine to be won.

Second, please take a look at the Code of Care (copied in below). We have reviewed the code following your input on this thread, and we've also taken soundings from some professional and campaigning bodies in this area. As a result of this feedback, we've condensed the code from ten points to five, in the hope that this will make it seem less intimidating to those we're trying to influence and increase our chances of making the code a reality. We've decided to take out the point about routine screening for chlamydia, lupus, blood-clotting disorders and antiphospholid syndrome, as we were strongly advised that this was not needed in nearly all cases; and we've tweaked the point about miscarriage information being held centrally within the NHS, as NHS computer systems just can't do this at present Grin. Instead we've included a point about the information being passed on locally.

We have added in the point about women miscarrying at home being offered adequate prescription pain relief, because so many of you on the previous thread made this point.

So, before we send it out into the wider world, we wanted to run it all past you again. Does the revised code (copied in below) do the job? Is it a good way to get our points across, gain support and start the long journey towards actually putting this code into practice up and down the country? Do let us have any feedback.

Thanks,
MNHQ x

  1. Supportive staff
GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication techniques (including things NOT to say to women who are miscarrying), basic counselling skills and the psychological effects of miscarriage. Follow-up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage.
  1. Access to scanning
Access to scanning facilities in the case of suspected miscarriage should be easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units at all times as standard. Those who are miscarrying naturally at home should have the option of a scan to check that there are no ongoing complications.
  1. Safe and appropriate places for treatment
Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. EPAUs should be sited in hospitals' gynaecology, rather than antenatal, departments or next to A&E departments, to ease women's referral route. Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in antenatal or labour ward settings.
  1. Good information and effective treatment
Everyone who has a miscarriage confirmed should have the three options explained to them: 'natural' miscarriage; medication to speed up the natural process; and surgery. What each option involves, the amount of pain and discomfort that might be experienced, and the likely timescales for each should be explained clearly, sympathetically and honestly either by trained medical professionals or in a leaflet. Women miscarrying at home should be offered appropriate prescription pain relief. In the case of miscarriage occurring in hospital, doctors should discuss with the parents what they wish to happen to the foetus (i.e. it should not be disposed of routinely without prior consultation). Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting.
  1. Joined-up care
Community midwife teams and GPs should be informed immediately when miscarriage has occurred, and subsequent bookings and scans cancelled, to avoid women who have miscarried being chased by HCPs for 'missing' pregnancy appointments.
OP posts:
ColdSancerre · 22/09/2011 14:32

Yup same here CMOT, the recurrent mc clinic in the antenatal department is unecessarily cruel. Is there really no alternative to this?

That said the doctor we saw in the rmc clinic I was very happy with, she explained everything, talked, gave us time, listened and referred to our losses as babies. Not 'products'.

CMOTdibbler · 22/09/2011 14:06

I forgot to put that when I was going to see the recurrent miscarriage consultant, scans for his fertility clinic, and recurrent miscarriers were done in the antenatal clinic. Just where you want to be in either of those groups. And even though it wasn't general AN time, the staff weren't allowed to switch off the 'baby channel' TV

hiddenhome · 22/09/2011 14:01

They should find something else to call ERPCS. When I found out what it stood for I was really upset. My 12 weeker was a baby not a product Sad

Dozer · 22/09/2011 13:49

boffinmum and kat2504, that's a good point about locating miscarriage services in with gynae. The gynae wards have people with serious cancer etc. Those patients might find it upsetting to have women with m/c on the ward.

kat2504 · 22/09/2011 13:18

My first miscarriage I had ERPC and in that hospital it was done in the day surgery unit so nowhere near either postnatal or gynae. That was the best way. When I had to go (in a different hospital) into the maternity block in order to miscarry, it was just awful. I also think it is crap for the gynae patients to be treated in the maternity block as often they have things that leave you infertile.
My hospital has a "lump all women's shit together in this old building" philosophy.

cornflakegirl · 22/09/2011 13:16

I'm not sure that I'd want to announce a pregnancy earlier. When I was trying for DC2, I had to tell some close friends that we couldn't go on holiday with them because I was pregnant. I was only 6 weeks, and had had two mcs in the previous months. I told them, but absolutely didn't want congratulations, because I knew there was a good chance that I would have another mc. Sadly, I did mc a couple of weeks later, and I found it quite hard to have to tell them that.

However, my next pregnancy did go full term, and since having DS2, I find it much easier to tell people about my miscarriages.

BoffinMum · 22/09/2011 13:14

TBH given the choice of lying next to dying gynae cancer patients or a single bedroom off a postnatal ward, I would pick the latter any time. This happened to me and it was much more cheerful being surrounded by good vibes than seeing other people near death and feeling unentitled to grieve as my problems were in the bigger scheme of things somewhat smaller.

Coldcuppacoffee · 22/09/2011 12:57

I am lucky that I was able to afford a private scan at 8.5 weeks as I was turned down on account of "not having enough miscarriages" to qualify for one.

Having a miscarriage changes everything. Every scan for my DS was exciting and interesting. Every scan for DS2 (post miscarrage) was nerve wracking and tense. Having a scan at 8.5wks made all the difference and should be available to everyone.

Good old Mumsnet. Ignore the critics - this alone justifies your existence!

Loopymumsy · 22/09/2011 12:56

This reply has been deleted

Message withdrawn at poster's request.

kat2504 · 22/09/2011 12:06

Things really need to change.
In my local hospital, where I was treated for missed miscarriage in April, the EPU is in the bloody maternity ward! Talk about insensitive, looking at all baby posters when you know you have just lost yours.
I had the misfortune of miscarrying over that time when there were 2 long bank holiday weekends in a row. So I couldn't be admitted to the EPU for the day and went to gynae ward for the joy of medical miscarriage. I had not been properly informed about the horrors that awaited me (period pain my arse) and much of the time, the staff were more interested in watching the Royal Wedding on television.

Thankfully I have had some better treatment at the same hospital. I'm pregnant again and the EPU have been kind and reassuring. However, in the lead up to this point, guess where the recurrent miscarriage clinic is held? That's right, I had the appointment in the maternity wing and had to wait in the antenatal outpatients area looking at people cooing over their scan pictures. Very thoughtful.

WuzzAndBuddy · 22/09/2011 11:23

Cleas, I had a molar pregnancy too, I was told the baby with heartbeat that we'd seen on a scan at 6wks 'just wasn't there' on a scan at 11wks...
No one could give me an answer to where it had gone Sad Infact, I was asked at one point if I was sure I was pregnant!
It seems no one at Salisbury hospital knew about molar pregnancies and I only found out that thats what I'd had 2months later when I got a phone call from Charing Cross hospital who had become involved when tests had been carried out on the 'products of conception', as they phrase it, after the ERPC...

I was left totally in the dark for 2months, just as we were starting to pull ourselves together after my 2nd miscarriage in 7months, they then dragged it all back up and I had to complete the 6months of tests.

So, my point... Blush is that I agree, although not very common, there should be more information available regarding molar pregnancies rather than being scared silly by Dr Google.

KarenHL · 22/09/2011 11:06

I think it's point 3 that resonate with me more. I misc when away from home, volunteering. So I had to visit the local A&E. Following day had to wait in antenatal, had scan told 50/50 whether I was misc. Told to stop crying! And told to return to antenatal while they dealt with notes. Misc two hours later. Did not return there as could not face it.

Went to A&E as recommended when we got home (bleeding was heavier). No information, put in tiny room with lots of gynae equipment for ages presumably until staff finished lunch. Don't mind that, but it would have been nice to have been told/warned that it might take a while to see someone. You're surrounded by all that equipment and your imagination goes into overdrive.

Following day in antenatal for a scan. Taken straight to cons as apparently no hormone left in my wee. Had to leave after that news, straight through/past happy mothers. What bugs me most in that particular clinic is that if they have bad news for you, they try to make you wait until all the 'happy news' is delivered to everyone else, so you leave after everyone else. Bugger the fact you've taken time off for an appt or that you'd like some time to sit and deal with stuff before you have to return to work - no, you're left there for up to 90mins after your appointment slot. If it is that big a problem for the NHS, kindly either see us elsewhere or give us another door to leave from.

Point 4
It took almost a week to find out whether I had actually miscarried or not. The only information I was given was 'we don't know, come back for a scan tomorrow', and 'if the bleeding gets heavier, call us'. It was an issue that scans could not be done on the same day - it just delays everything by another day (plus another day lost in travel & waiting rooms). 45 mins each way to hospitals, plus the 3 hours or you just spend waiting not being told anything. The first time in A&E, the doc came to see us, said he'd be back in a few minutes and promptly took a group of new docs on a tour of A&E, did his speech and then came back to us. I know this stuff has to be done, but why does that take priority over a woman terrified she is miscarrying? At every point no-one was willing to confirm if I was miscarrying, or what would happen if I was. I was absolutely in shock when the foetus 'passed' as I had no idea of what would happen, just that I was bleeding while pregnant and that it could be a misc.

Just in case anything thinks this is old history, it was less than two months ago. PLEASE SUPPORT THIS CAMPAIGN and GET THINGS CHANGED.

m0nkeynuts · 22/09/2011 10:55

Done.

cleas · 22/09/2011 10:34

All done. It's nice to know that you guys are trying to improve the way miscarriage is handled. Thank you.
I genuinely believe some sort of sensitivity training may be useful too for sonographers given that they are the often the person breaking the news of a mc to many. All too often they don't know what to say themselves - perhaps they would welcome a bit of support with this? Plus having experienced a molar pregnancy it would be nice to see the information provided improved (anything would be better than none!). I appreciate it may be rare but even a printed off leaflet with some basic information would be better than being left to google information at home alone.

VenetiaLanyon · 22/09/2011 09:34

I second what MadamA said about recurrent miscarriage - would love to see something about this added to the code

PrettyCandles · 22/09/2011 07:12

Part of (4) is confusing.

"Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting."

Are you saying that this is what the surgical procedure should be called, or what the name should be changed away from?

IME, that's what it was called, and I did indeed find the name confusing and upsetting.

devonshiredumpling · 22/09/2011 00:31

survey done

the only people that were really kind to me at the time of my mc were the hospital chaplains who were the ones who told me where to go to lay flowers for my baby and to be assured that my babies remains would be treated with respect they even issued a certificate which stated that my baby was blessed by them . the other person was the doctor who put me to sleep for the erpc and only because he and his wife had gone through the same and he made it his personal mission to make everyone feel informed at what was happening to them

balia · 21/09/2011 22:25

Survey done, with tears, but very worthwhile. I have been pregnant 10 times and - thankfully - have two wonderful children of 17 and 4. I treasure the one scan photo I have of one of the others. I'm sure I went for more scans but didn't think to ask for photos. I wish I could have had those remembrances. Maybe people think it would be macabre.

I also found the most insensitive people were the midwives I saw when pregnant again (and not all, by any means) who made no mention of my history, or were difficult about my reluctance to be poked and prodded, or implied that it would serve me right if my baby had Downs because in my last, despairing hope of keeping foetus no10 alive I had not informed any health practitioners of my latest pregnancy until I felt 'safe' enough (so was too late for some of the testing). Bitch.

Camerondiazepam · 21/09/2011 21:29

Honestly bedhog I don't remember it being mentioned at all but I may well have totally blanked it. I only remember the consent form about all the awful things that might happen to me on the table. Was quite surprised to see the whole "garden of remembrance" thing on this thread tbh.

BedHog · 21/09/2011 21:24

Cameron, did you not have a consent form to sign before your ERPC, saying that the remains would go to the crematorium and then on to the garden of remembrance? They went to great trouble explaining it all to me, even though I'd had a second scan and the embryo had gone by then. It seems so ridiculous that procedures and experiences differ so much around the country.

MissTinaTeaspoon - I felt the opposite about the references to losing the foetus/embryo/baby. I hated it when people referred to my mc (at 10 wks) as 'losing a baby' as it felt as if they were somehow enforcing a level of grief onto me which would be more appropriate to a much later loss, which I wasn't feeling and had no desire to go to that dark place that sadly some people find themselves.

MadamA · 21/09/2011 21:21

I have had a m/c (survey done) and also work in the fertility field and am constantly seeing women who have had one or more miscarriages and who are still trying to get pregnant. Well done Mumsnet - above looks good. Another issue (maybe not for this time) is recurrent miscarriage. It's only investigated after 3 m/c's, but actually Prof Raj Rai from St Mary's, who is one of the UK experts, thinks it should be investigated after 2 if the first two pregnancies got to the 8 week stage. A massive resource issue obviously but could pick up a load of women with treatable rec m/c.

MonsterBookOfTysons · 21/09/2011 21:20

Done.
My mum had a mc in 1992, wrote 94 in survey Hmm whoops.
I had a mc in 2009 and in that time between my mums and my mc nothing seems to of improved. It is time for something to change.

alana39 · 21/09/2011 21:04

Done.

Thank you for this. Overall I was quite lucky with treatment but it bothers me that luck comes into it and I've heard so many horror stories from friends.

Camerondiazepam · 21/09/2011 20:57

Forgot to say, I don't ever remember anyone even mentioning what would happen to the remains after the ERPC. At all.

Camerondiazepam · 21/09/2011 20:55

Done, thanks for drawing attention to an issue that's usually swept under the carpet.

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