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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:
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.

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.

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:
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.

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.

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?

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!

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

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.

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

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.

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.

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!

billiejean · 22/09/2011 21:53

Done.

YankNCock · 22/09/2011 21:48

I would also have liked a photograph of my early scan, I did ask for one but they said they didn't do it for the early ones, only the 12 week ones. We got referred because I'd lost my symptoms and the blood tests showed my hormone levels weren't doubling in the right amount of time. We went in thinking they would tell us the baby had died, but instead she found a heartbeat! We were so happy. The sonographer mentioned the sac was very small, but never said anything about what that could mean. Maybe it's not her job or her place, but I wish we hadn't been allowed to hope.

When I got home I googled and found a research paper that said a small sac is a very good predictor of miscarriage. That was on a Friday and I started having pain and bleeding on Sunday, MC on Monday. It was such a roller coaster. I just wish at that scan, someone would have said to us 'Based on the blood tests and the small sac, this pregnancy might not be able to continue'. Instead we walked out floating on air, only to crash down even harder.

mamadoc · 22/09/2011 21:34

I agree with what was said about breaking this taboo of never talking about it and not letting anyone know about a pregnancy until 12 weeks.
My first miscarriage I basically only told my dh, my mum and my sister. No-one at work and none of my friends. I missed out on a lot of support doing that and people must have been at a complete loss as to why I was so often on the verge of tears. The second time I was much more open and was surprised how many people I knew who had also been through it and how kind people were. By my third pregnancy I told anyone who I wouldn't mind knowing about a MC quite early on and now I will talk about my experience if it comes up eg if people ask why there's a big age gap between our children.

mamadoc · 22/09/2011 21:24

Survey done.
I agree with all the points in the code

  1. Please clarify that supportive staff applies to what is said in subsequent pregnancies too. My 3rd pregnancy after two MCs was just horrible but no-one acknowledged how I was feeling about it at all.
  2. My 1st MC happened over the Christmas period. I really just wanted to know what was going on/ if there was any hope/ what to expect. The 1st on call GP was kind but had nothing to offer me. If EPU had been open I wouldn't have had to soldier on feeling so alone, unsure and frightened. As it was when I called back because the bleeding was heavier I got another GP whose attitude was basically 'why are you wasting my time, nothing can be done'. When I asked him if I should go to hospital he said 'not unless you pass out!'
  3. It is just so unacceptable that I should have to cancel my own scan appointment. I will never forget screwing up the courage to ring, fighting back tears to say that I wouldn't need the appointment and then being asked 'for what reason?" and having to say the words to some random receptionist.
Pippi965 · 22/09/2011 18:41

All done : )

danceswithfools · 22/09/2011 16:58

I had completed the survey but not read all of this thread because it will make me cry and I am getting the tea ready! Apologies if this has already been mentioned, but please can you put something about molar pregnancies and miscarriage somewhere? My second miscarriage was a partial molar pregnancy and even now, five years later, I find it really upsetting that no-one knows anything about it or how distressing the ongoing monitoring can be. At the time, I felt like a freak every time I had to explain to anyone and it still frustrates me now.

Mouseface · 22/09/2011 16:24

'MNHQ' even!

Mouseface · 22/09/2011 16:23

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

Exactly. I cried so much when they used that term. I lost three little boys, all brothers at 16 weeks, together in 2005 and had to have surgery to remove what was left.

That in itself was horrific, but being told what it is called was far more harrowing to bear. Such a brutal phrase. Truly sends shivers through me.

I totally agree that the name for that' procedure' needs to be changed. It was clearly thought up by someone who isn't a parent or doesn't have a single sensitive bone in their body.

Sad

I have done the survey and would like to thank MNQH for the wording used and the questions asked. Very well done. Smile

BedHog · 22/09/2011 16:13

Our local EPU doubles up as an overflow ward from the gynae unit. I didn't realise this at the time I was in there, so was a little puzzled at the 80 year old woman in the bed next to me. I don't think medical science enables geriatric pregnancies just yet.

WhoresHairKnickers · 22/09/2011 15:00

Done. :( but :) it's being addressed. Good luck MNHQ.

piprabbit · 22/09/2011 14:38

My hospital has a special department for women with pregnancies that are not going well.

It has a couple of rooms for consultations, a separate waiting room, it's own toilets, it's own scan unit and a small 4-bed ward.

It's not a very happy place to be. But at least all the patients, families and staff are coming from the same place.

kat2504 · 22/09/2011 14:38

Our hospital actually does have another ultrasound dept in the main building. presumably they use this for people who are having other parts of the body apart from the uterus scanned. So why can't they send the rmc patients there if they are having a pelvic ultrasound when not actually pregnant? They could even put the EPU next door to it. But no. They decide to use the antenatal scanning clinic instead.

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