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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:
pickgo · 21/09/2011 19:53

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

TheORIGINALWoofLady · 21/09/2011 14:37

I agree with Fliss, brilliant to put it mildly

TheORIGINALWoofLady · 21/09/2011 14:36

Done

Flisspaps · 21/09/2011 14:32

I think the Code of Care is brilliant (for want of a better word).

imogengladheart · 21/09/2011 14:29

This reply has been deleted

Message withdrawn at poster's request.

madmouse · 21/09/2011 14:10

I told people about myu mc even though no one yet knew I was pregnant. I told some close friends and also my boss, because I was in at work the day after and a colleague who had been hormonal and crabby at me all week announced her pregnancy the same day and I didn't cope very well.

Unfortunately my boss has Aspergers and managed to suggest that I go home and make a new baby. She's female by the way, but not a mother. She also pushed me to see a doctor, but i refused as I knew what my body was doing and just wanted the distraction.

Matronalia · 21/09/2011 14:02

I had a miscarriage in June this year at 6 weeks and I left the hospital after a scan not knowing whether I was miscarrying or not, with no idea what was happening, how much it was going to hurt, what I had to do - just a conveyer belt of women having internal scans and leaving with a piece of paper with the number to get test results. When I got my test results the nurse said 'thats a miscarriage confirmed then, all the best for future pregnancies - you can get an early scan if you call us up" and that was it. There was no acknowledgement of the fact I was distraught or offer of any support or counselling, the general impression was I had two children already and it was so early it didnt really matter. It was a baby though, just as my other two were and it was loved and it was already one of the family.

I also could have done without making all the phone calls cancelling scans etc and would have liked some information on how to look after myself afterwards. My immune system is very low and I have had mild anaemia plus scarlatina and shingles since June which the doctor says is down to the miscarriage.

Crying here too.

TheORIGINALWoofLady · 21/09/2011 13:42

Is it ok if I do this? I had an ectopic pg, which was hidden/mis-diagnosed by a miscarriage/infection (in that order).

I personally think I lost twins, one uterine and one ectopic.

Wakey · 21/09/2011 13:25

Still crying after filling in the survey and it was 6 years ago and I now have 2 children and 18 weeks pregnant with 3rd but still affects me. It needs to be pushed so that the first point of contact is sensitive because in my experience one you are 'in' the system it was all ok but that first GP appt was hell on earth.

BellaBearisWideAwake · 21/09/2011 13:18

Is there anything (big apologies if I missed it) about referring to previous mcs as abortion once you are having booking appt for subsequent pgs? Because I hated that.

Stripy1 · 21/09/2011 11:09

Because it is traditional to not tell people that you are pregnant during tthe first 3 months of pregnancy I had no one to tell that I had had a miscarrage. I even went back to work the day after. It seemes that it is kept a secret. With the pregnancy I had after the miscarrage I told people from day 1 I felt then I would have support if it happened again.

SeenButNotHeard · 20/09/2011 22:04

Done

Having realised that this is the first time that I have written down some thoughts about my treatment, I hope that no one minds if I add my experience here...

My last mc (number 3) was on Christmas day 2003. I was 11 weeks pregnant and started to experience spotting and very heavy cramps. My dh was worried that it might be an eptopic pregnancy so rang NHS direct and they advised us to go to A&E. My experience there (away from home, in a hospital close to my sister's) was truly awful. We were left waiting in reception for ages, were not offered a scan of any description and I was actually told several times that I was not actually pregnant as a test they completed came back negative. I guess their test was either wrong, or it was a missed mc and my baby had died some weeks earlier.

A nurse actually asked to look at my sanitary towel, and said "ah, not much blood for a miscarriage, are you sure that this is not just your period?"
I was sent home and fully miscarried there 24 hours later. I can't tell you just how much it hurt to feel that, on Christmas Day, of all days, noone really cared.

That said, with my fourth pregnancy (dd is now 6) I received some of the best, most sensitive care in the world, from early scans where the sonographer, who was aware of my history had tears in her eyes when she gave me the photos to midwives who were kind and thoughtful when taking my history.

ColdSancerre · 20/09/2011 20:37

Done. Thank you for doing this.

LittleWhiteWolf · 20/09/2011 20:05

Done.
I feel very lucky that my mmc was handled by and large very sensitively, but there were still enough moments of needless pain. The gyno who saw DH and I after our scan which confirmed the mmc was well meaning but basically told us that as we were young and already had DD (nevermind the mc only a few months before) that we should just "get on with things" meaning we should just hurry back to trying again.

At the EPU, which was essentially the same place as routine scans, just with a gyno on hand, DH and I were put in a seperate waiting room to await the gyno, but still had to walk out of the hospital through the waiting room full of expectant mothers. This added pressure to me as I felt an obligation to pull myself together and fake a cheerful/peaceful expression so as not to worry the other women waiting for scans. Sounds stupid, but there you are.

That all being said I was treated very fairly and sensitively and I wish this were the case for women across the nation.

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