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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:
billiejean · 22/09/2011 21:53

Done.

bubby64 · 22/09/2011 22:15

Done, but hadn't realised how upset I would be when filling out the form, In tears just thinking about it even though the questions were sensitivly put and it was almost 5 years ago!
I still get very angry and upset by the way I and my DH were treated, like lepers rather than newly berheved parents!

bubby64 · 22/09/2011 22:37

Sorry again, spelling really bad. I also meant to put that as I miscarried twins 4 weeks apart, the staff in the early pregnancy unit were brilliant, it was only the ward staff who were ill informed and insensitive! the one person on the ward who was like angel was the domestic cleaner, she had more care and sensitivity in her little finger than the rest of the staff put together, and I still bless her to this day.

musicposy · 22/09/2011 22:59

Done, though it made me very upset filling it out. That was because it brought back some of the awful things that were said to me by so-called professionals. The only really kind person was the hospital chaplain, she was lovely. I never forget the nurse at the scan when they found the baby had died, who said "that's what you expect at your age". Just awful, insensitive, shocking treatment. That was only one part - I could be here all night listing the rest.

Things have to improve. Even though it was upsetting, I think if Mumsnet can change how even one person is treated, it will be worth it.

pumpkin1981 · 22/09/2011 23:00

done!! offcially i was a still birth as i miscarried at 26 weeks so i think the campain should be for miscarrage and stillbirth as many of the points raised are valid for stillbirth too. its harowing for anyone in either situation and our care for women in these situations is abysmal. i want to make a difference and am now on a path to retrain as a midwife and i want to have special training in berevement care as well as my life experience so that i can prevent other mothers being treated the way i was

WilsonFrickett · 23/09/2011 10:21

I haven't had a mc so can't fill out the form, but my best friend has just had one and I agree 100% with the points above. I think it's a great campaign.

FWIW another friend mc'd at the same hospital 6 yrs ago and the information the two women were given was night and day apart, I remember crying with DF1 at the shocking language on the leaflet, going through the info with DF2 last week it was much, much better. Very clear and the right tone IMO. So things can change, lets change them faster eh?

Sorry for everyone's losses.

YankNCock · 23/09/2011 10:26

bubby and musicposey, I cried filling it out too, and it was three years ago. Actually it was 3 years and 1 week to the day, and it reminded me that I hadn't thought of it on the day this year, which made me feel even worse. I've got nothing to remember aside from two dates, September 15, the day I miscarried, and May 3, the due date.

DH never remembers and doesn't seem to get why I want to remember. I'm not sure I get why I want to remember. Confused

NotCallingHimNigel · 23/09/2011 12:19

Done! Thank you so much for this campaign :) I think those new guidelines are fantastic - my care has breached several of them, sadly. I did rather fill up that box!

YaMaYaMa · 23/09/2011 12:47

I completely agree with getting rid of the 'just in case' thing. I told my family when I found out I was pregnant early on. My mmc was picked up at 12 week scan and my brother said to me 'well maybe that'll teach you not to say anything so early next time'. Unbelievable and totally unexpected reaction.

But why cant we tell anyone? If I hadnt told anyone and then suddenly announced that I'd miscarried, wouldnt that be weird?

lieseylou · 23/09/2011 16:59

I completely agree with people about needing to make it more 'normal' to talk about mc - if it happens so much it shouldn't be such a taboo subject but...
Not sure about telling people outside of close family and friends before 12weeks. When I miscarried we'd told quite a few ppl I was pregnant and it was really hard to then tell them I'd mc'd. Especially when I'd forgotten we'd told them and a month or 2 later they asked how many weeks I was and how the baby was etc. With this pregnancy (33weeks and counting) we told far fewer ppl before 12 weeks because we'd experienced mc.

Having said that maybe if it was more normal to talk about mc in general and people were more aware then maybe it wouldn't b an issue.

Thanks for the campaign MN.

spinaltap · 23/09/2011 19:36

Done.

Thank you so much MNHQ for doing this. I wholeheartedly agree with all the recommendations and I hope they are implemented. Enough is enough.

While the hospital staff I came across were caring, the 'system' desperately needs changing to be more sensitive towards miscarriage. I had to wait all day on a ward with pregnant women - one constantly vomiting - before they could fit me in for an ERPC. It was a horrendous experience on top of what was already the worst time of my life.

RowanMumsnet · 23/09/2011 20:44

Hello everyone

Thanks so much for posting and for adding your comments - the feedback is incredibly helpful. We will look at it all over the next week or so and come back to you. Do please keep posting in the meantime.

We're so sorry to hear of some of the awful things that are still happening to parents losing their babies (although it is also cheering to hear that some hospital trusts are very much getting it right).

MNHQ x

OP posts:
GracieGirl · 23/09/2011 20:51

Done. I cried too.

I agree with the point made by I can't remember who, about private clinics and paying before the scan. It's impossible remembering your pin and seeing to type it when you're crying that badly! And I'm sure the others in the waiting room weren't helped by seeing me.

On the plus side, the sonographer didn't bat an eye lid when I wanted a scan photo of my dead baby.

I also agree that you shouldn't need to keep pregnancy a secret to 12 weeks. A few close family/friends are needed to help you through it in case you miscarry. I felt really bad telling a friend who didn't know I was pregnant that I'd miscarried, he turned out to be massively supportive during the two limbo weeks of waiting for the miscarriage to happen. It didn't happen, in the end I had an Erpc.

Hopefully your campaign will let people know that there is a lot of support to be had at mumsnet. I don't think I'd have got through it in one piece without the 15 girls on a mumsnet thread who miscarried alongside me.

chillikate · 23/09/2011 22:01

Part 1. Might want to consider adding out of hours service to that. They were my first nport of call and could have done with a better level of understanding.

musicposy · 23/09/2011 22:19

More stuff I didn't include keeps coming back to me now. It was only last year but I think I blocked so much out.

Spinaltap I had just the same as you. After my scan there was nowhere to put me except back in the waiting area. I asked, but they said they had nowhere. I had to sit there for 3 hours waiting for the doctor to finish his appointments and speak to me whilst other pregnant women came in, had their scans, and went out cooing over their scan pictures.

It was awful, truly awful, and I agree that even if individual nurses were nice to me (and some weren't), the system was set up in such a way it felt as if it didn't give a shit. The worst thing that's ever happened to me in my life and I had to just sit there and wait in a corridor with happy pregnant women. Sad.

I've had a bad day or two since this, MNHQ, because I think there's so much I've just buried through lack of any real support, and this has brought it back. But it needs to be done; you'll help other people through doing this and I applaud you for doing it, even if it is personally upsetting. Like Graciegirl it was the mumsnet miscarriage thread that was my lifeline; the only place where I was not utterly alone. I'll always be grateful for that.

WhoresHairKnickers · 23/09/2011 23:20

I didn't really have anyone with my first Mc which was a Mmc, but at that time, the hospital were wonderful and they held regular miscarriage support group meetings (nursing staff volunteers) that were just fabulous for support and advice. My last Mc was so different though, with no support at all.

swallowedAfly · 24/09/2011 08:27

done.

swallowedAfly · 24/09/2011 08:27

and i think i'll hide thread now - went to start typing out loads of stuff here but actually don't want to get into it all again.

sorry to everyone for their losses and experiences.

jaffababy · 24/09/2011 09:24

I've done the survey. Thanks for trying raise awareness. I think MC should be made part of common discourse in order to break the weird silence and confusion around it all. I wouldn't have coped without my MN thread, not at all.

A small point on the survey. Most of the questions were about the NHS, which meant I couldn't answer them. We had discovered problems with a small (but heart beating) foetus during a private scan we'd paid for before going on holiday, so we stayed private for HCG tests and then the awful scan confirming it was all over. Our consultant took my tests to the lab himself and rang us at 830pm on a saturday to give us results, which was very kind. He gave me the medical mgt pills too, and again the survey didn't capture medical mgt really. I had a very straightforward (but heartrending) process in the comfort of my own home. (I know, if you can afford it that's great) but I guess I'm saying the survey didn't allow my experience to be captured. Perhaps make it clearer that you're trying to survey the NHS experience?

Reading everyone else's experiences is very sad. Let's do what we can to make things better.

pixiewitch · 24/09/2011 13:17

done.
I'm so glad you are taking this up M/N. Someone has to, as there are far too many 'horrid' stories out there that just shouldn't happen.
Thank you.

belgina · 24/09/2011 14:05

Taken survey. 2mc in 1 year so far. :(. I think my care was over all quite good & sensitive. My only issue was the difficulty in getting in touch with the EPAC nurse and her getting back to me quickly enough with results. Twice I was told to expect a call and it never came.
I'm very Shock at mums who miscarried at home not getting a scan. My 1st misc was a missed miscarriage and I decided to let nature take it's course. I had a scan afterwards to confirm it was complete.
My 2nd miscarriage was on holiday abroad. Again I was offered a scan afterwards to confirm it was complete. Why isn't everyone offered this Confused
I do like all points. Being someone who works in a hospital, I know it can logistically be difficult for trusts to keep misc and termination women separate on the ward, but it can be done.

belgina · 24/09/2011 14:08

Just also want to add that I agree with the need to abolish that ridiculous habit of not telling until you're sure. Surely when things go wrong is exactly when you need people around you to know so they can treat you sensitively and understand why you might be not yourself/off work, ...

summerof76 · 24/09/2011 18:44

There's a point that I would really like to see in the code of care. A "missed miscarriage" should not be referred to as a "missed abortion". I was shocked and upset to see this in my GP's notes, and whilst I understand that it is a medical term, I think that it is very inappropriate especially for a woman whose baby was very much wanted.

kat2504 · 24/09/2011 19:27

I don't think the medical profession should use the word abortion at all for any miscarriages. I was none to pleased to be diagnosed as a "habitual aborter" in my notes.

ducksinarow · 24/09/2011 19:38

As a woman suffering from recurrent miscarriages I have found the level of care of staff varies greatly. Some are sensitive and will try to do all they can to stop any extra stress (being on antenatal ward), as much as they can.

Many sadly are incompetent.

One time asking, a junior doctor at an appointment regarding my m/c's, what the result of my ultrasound scan of my womb showed. The junior doc looked at a histology report and said "you'll be glad to know it is not cancer" !!!

I have been repeatedly mis-scanned by registrar or SHO doctors, the consultants or sonographers being unavailable. The mis-scanning included one episode of a registrar measuring my ovary and saying unfortunately that the sac looked empty. Fortunately she did go get the consultant to come and confirm what she was seeing...... and fortunately the consultant at least did know a bit more about what he was looking at and found the sac and feotus.

During many outpatient and EPU appointments, when I have known I have been miscarrying, I have been kept waiting for hours with pregnant women with huge belly's walking past the whole time. On one occassion I was in the same room as a woman in labour having contractions, while my uterus was contracting with the miscarriage, it was not easy, as her pain would end with joy, whilst mine was inevitably going to end in sorrow.

I am now at the point where I will not go to the hospital unless it is vital, as my husband and friends can help me through the miscarriages so much better and cause less pain than the hospital staff.

Recurrent miscarriage is hard, but the hospital staff seem to be able to make it so much worse.

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