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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:
TheORIGINALWoofLady · 21/09/2011 14:36

Done

TheORIGINALWoofLady · 21/09/2011 14:37

I agree with Fliss, brilliant to put it mildly

MicBlastaB · 21/09/2011 15:04

Done, after 9 miscarriages (and at 6 weeks pregnant and bleeding atm probably a 10th) this meant a lot to me. I'm only 27 but because I've had "a live birth" the attitude of my dr's and local nhs seems to be that there's probably, PROBABLY, nothing wrong and I'm only just being referred for tests! Disgusting. Once at only 19 and my 2nd MC a locum GP told me "Well the baby's dead so what do you want me to do?". Most horrible thing that has ever been said to me by anyone. The stigma of keeping a pregnancy secret until 12 weeks "just in case" needs to disappear so women can get the support they need. Each and every MC is as horrific emotionally and physically as the 1st - I should know! More research needs to be done and women should no longer have to go home with no baby and no answers.

fuzzyfeltfox · 21/09/2011 15:43

done- agree you've done a good job with the survey. Think the CoC works as it now stands.

Might just be me but I find ERPC less offensive than D&C which just sounds barbaric :( I didn't have one as the idea of being alone in hospital without DH absolutely terrified (never had a GA or even stayed in hospital) it was too horrific to contemplate, and chose to mc naturally.

Appropriate prescription pain relief, definitely- I was given something which made me have awful hallucinations, made me vomit and made me so dizzy I couldn't stand up or even use a cup without DH helping.

KatieMumsnet · 21/09/2011 17:22

Thanks so much for all your comments and contributions to the survey. Really appreciate how hard it must be, but so important to have the experiences to give strength to why we need the code.

TheORIGINALWoofLady of course, please do fill in.

BellaBearisWideAwake I don't think we did cover that in the survey, but imagine that must have felt pretty awful. We'll also be summarising the comments here and in the comments section of the survey though - so can reflect that.

Stripy1 and MicBlastaB really interesting about getting rid of the 'just in case window' so we can all talk a bit more and of course support each other a bit more.

bluebump · 21/09/2011 18:15

Done. I received both piss poor care and on the other extreme fantastic care depending on what member of my care team I was dealing with.

MissTinaTeaspoon · 21/09/2011 18:21

Something that bothered me when I had early scans when I was pregnant with dd was that I wasn't allowed a photograph. I was obviously very lucky that she is fine, but I can't help wondering how I would have felt if my 'threatened miscarriage' had gone on to become an actual miscarriage and I would have had no photos of my baby alive if that makes sense? When I did miscarry 3 years later I was given a photo of the baby, but had I had an earlier scan with 'alive' photos I would have treasured them. I think a blanket ban on scan photos before 20 weeks is cruel and unnecessary, it's not as if I wouldn't have been prepared to pay for them either.

Something else that I didn't mention my survey answers was the references to my fetus by some healthcare staff. Yes, maybe to them it was a fetus, but it was my baby, I carried him or her for 11 weeks and that's how I thought of them.

Looking back as well, we were never offered any kind of service to attend, or told when the baby was buried. We were told where, but we were never made to feel that we could go and visit or anything. We planted a little shrub in the garden, and I think of that as being where he or she ended up but I know that it isn't really the case.

WuzzAndBuddy · 21/09/2011 18:30

I agree with the comment about not telling anyone until 12weeks... really don't understand why people do that.
I found out from a friend that upon hearing I was off work as I was miscarrying a colleague had commented 'Well maybe she shouldn't have announced it so soon' Hmm
I would have loved that to have been said to my face...
How would it have made any difference? And what a truly awful thing to say!

When I became pregnant again 3 months later I felt totally self concious about announcing my news at work even though I was really happy, it put a huge dampener it for me.

ouryve · 21/09/2011 18:38

Done.

The care I received during my actual miscarriage was mostly good, right down to being made an appointment at the gynae ward, rather than the maternity ward for follow up blood tests. I have, however, referred to a horrid experience of insensitive treatment by a GP related to a heavy bleeding incident early in my first pregnancy, where he quite coldly told me the pregnancy wasn't viable, clearly having not read the update to my notes that a second scan had detected a heartbeat. Git.

Dozer · 21/09/2011 19:37

Some of the requests on the list - particularly under 2 and 3 - would cost a lot of money, and they are based simply on what women would like rather than an evidence base. Of course we would all like those things to be in place, but NHS resources are limited.

If the Code is making demands that will cost money, a convincing case needs to be made for each item.

For example, access to scans for possible early m/c, though really helpful for couples in distress and not knowing what's happening, is probably not necessary in medical terms (obviously there're exceptions, eg ectopic). Doing erpc procedures separately from terminations doesn't make sense in terms of managing operating theatres and doctors' time. Giving scans to people who have miscarried at home may not be a good use of resources unless the need to investigate is clinically indicatd.

Lots of the other stuff, though, seems more realistic.

Dozer · 21/09/2011 19:38

Under four, it would be better to say have "the relevant options, for example..." rather than "the three options", since situations are different and those options won't always be relevant.

GMTS · 21/09/2011 19:46

Done.
Thank you for raising this issue. Coincidentally Miscarriage Awareness Week will fall when I was due with our baby. It will be particularly poignant for me.

pickgo · 21/09/2011 19:49

Survey done.

The 5 Code of Care points seem to be comprehensive and sensible.

I think the counselling point is a really good one. My last mc would have definitely been my last baby and as such it was devastating when I mc'd. Coupled with some pretty insensitive consultant comments and a p who totally didn't get it I bottled up all my grief and had no one to talk to about it who understood.

It took me years to get over it and I think counselling at the time could have helped enormously.

pickgo · 21/09/2011 19:53

MicBlastaB
Just re-read your post. Are you okay? Hope all is well for you x

Camerondiazepam · 21/09/2011 20:55

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

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.

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.

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.

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.

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.

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.

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.

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

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.

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