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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:
ChristinedePizan · 20/09/2011 15:34

Glad we both had positive outcomes Bohica but I'm sure we could have both done without that hideous, hideous 'oh god, not again' feeling :(

AnnMumsnet · 20/09/2011 15:46

BedHog - done

MissTinaTeaspoon · 20/09/2011 15:54

Thanks for this. The hardest part for me was having to wait until the next day before I was scanned Sad

Shipscat · 20/09/2011 16:48

Done. Even though my m/c was very early, and 6 years ago (and I now have dc) I'm in tears. I thought I was 'over it', but maybe not.

CombineArvester · 20/09/2011 17:16

Bear in mind that ime there aren't any 'options' for 2nd tri miscarriage after a certain stage- you will have to give birth, they give you no choice and you may well have to have ERPC anyway afterwards to remove placenta.

WuzzAndBuddy · 20/09/2011 17:49

Sorry Christine, only just seen your post Sad
Its worrying that they make those kinds of mistakes.

Glad you both had happy outcomes from such horrid situations.

addictediam · 20/09/2011 18:05

In 3 years ive been pregnant 6 times, from that ive had 1 dd and I'm still pregnant with number 6. I answered the questions for my most recent mc, but since the first mc ive moved to a new area which is much more sensitive and great at dealing with mc.
Its the first I will never forget or get over, I really want to go back and answer questions based on that especially as I've known people still being treated appallingly in the hospital as recently as 2 months ago. :(

I'm completely behind this and really believe some areas need to remember mc are babies, and the mums experienceing mc are real people with real feelings.

ChristinedePizan · 20/09/2011 18:06

No apology needed - I am so thankful I have my DS :)

I don't think what happened to me was a mistake as such - I was begging for a scan and the A&E doctor was very keen to help. But he didn't have scanning facilities available so tracked down a doppler. Using one at such an early stage is obviously very skilled so his attempt to reassure backfired horribly, but he really did have the best of intentions.

If we get point 2 of the charter sorted, then no one will ever have to go through what I and Bohica (and presumably thousands of other women) went through again.

LoveInAColdClimate · 20/09/2011 18:31

Thank you for doing this.

lemonsquish · 20/09/2011 19:02

I just want to point out that in England (I'm not sure about the rest of the UK) according to the Human Tissue Act, products of conception (as a miscarriage is medically known) are not routinely disposed of. There has to be the mother's informed consent for laboratory examination and her wishes for respectful disposal (which in the case of the hospital I work for is cremation) are always adhered to now.

I know it has not always been like this, when I miscarried 11 years ago, there was no explanation, nothing.

FrauLindor · 20/09/2011 19:14

I am so pleased that MN are pushing forward with this. I did not fill in the survey, as I had my miscarriages in Germany and Switzerland.

BobbieSox · 20/09/2011 19:26

I also wish there could be some kind of training for people who deal with you after miscarriage, on subsequent pregnancies.

Had an early 6 week scan with current pregnancy (actually for a cyst but knew I was pregnant). When I asked could I see the baby, awful woman said, "Why would you want to, it's only a couple of cells." Errr....because it's the first time I will potentially get to see my child, and could be the last if the previous time was anything to go by?

( happily not, by the way, I'm now overdue waiting for its arrival!)

Notnapping · 20/09/2011 19:43

Just thought I'd post my experience jumbled I know but there you go...

Started bleeding went to a and e revered for a scan 24 hrs later
Made to wait outside a busy gyne ward after scan confirming mmc crying my eyes out with staff visitors etc walking past for over an hour waiting for a doc
Doc not reading notes and unable to understand English so discussions were very limited
Nurse couldn't understand doc so I had to explain to her all over again
Sent home to miscarry with little idea what was involved
Rushed in at midnight after losing loads of blood mc on the way
Not being told what would happen to baby
Being talked about between a cleaner and nurse as to why I was there outside the room
Being refused accesss to a phone to phone dh to pick me up
Doc was to busy to see me before I left
No one was discharging me as they were " dealing with important cases" apparently
Left telling receptionist I was going, no keys phone ,obey etc as I'd been rushed in
Had to struggle out to get a taxi which dh paid for when I got home
No follow up call AT ALLfrom anybody
No offer of counselling
Found out they did lab tests on the baby at an unrelated gp appointment 3 months later when she was looking for something else

I was 12+5 baby died at 9+ 5
Scan waiting area had pregnant women waiting for scans

BedHog · 20/09/2011 19:47

I forgot to put that the leaflets the nhs give you when you mc about sources of support should include details of sites like Mumsnet, rather than just the Miscarriage Association. I didn't join or contact them because I didn't want some depressing magazine about miscarriage dropping through my letterbox every couple of months, reminding me what I'd been through. Mumsnet gave me much more immediate and relevant support.

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.

ColdSancerre · 20/09/2011 20:37

Done. Thank you for doing this.

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.

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.

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.

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.

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.

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.

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.

imogengladheart · 21/09/2011 14:29

This reply has been deleted

Message withdrawn at poster's request.

Flisspaps · 21/09/2011 14:32

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