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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:
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.

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

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!)

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.

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.

LoveInAColdClimate · 20/09/2011 18:31

Thank you for doing this.

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.

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.

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.

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.

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.

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

AnnMumsnet · 20/09/2011 15:46

BedHog - done

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 :(

BedHog · 20/09/2011 15:25

Done. Could you make the text boxes a bit bigger? It's difficult to write an essay about your experiences if you can only see the last couple of sentences, and a pita to keep scrolling up and down to remember what you've put.

WuzzAndBuddy · 20/09/2011 14:37

Done. I totally agree, it was so well written and suitably sensitive.

I really hope this campaign is a huge success, the system needs a bloody good shake up, women (and partners) just shouldn't have to go through some of the awful experiences on the first thread Sad

Bohica, glad to hear such a beautiful outcome from a horrid experience Smile

Bohica · 20/09/2011 14:27

When I asked at one scan appointment if I could have a scan picture I was charged £2.50.

£2.50 for the first and last time I would ever "see" my baby.

So sorry to hear I'm not the only one who was told the wrong outcome Christine

RunningWithScissors · 20/09/2011 14:12

Good campaign, but a couple of points:

  1. Disappointed that you've backed away from the idea of standardising responses with regards to looking for miscarriage causes / treatments. Could this be brought in at a later stage? For example, my GP was not well-informed as to the role of the thyroid in recurrent miscarriage, and it's possible straightforward treatment with levothyroxine. And if you're getting a bit long in the tooth you possibly don't want to wait for 3 losses before you're investigated for potential causes...
  1. Don't just make it about the NHS; I have also had difficult experiences at private clinics; for example I vividly remember sobbing my heart out at the receptionist while struggling to make a payment for the scan which had found that the baby's heart had stopped beating, as she sat amidst a sea of photos of happy new born babies....it would be so much better to take the payment before the scan!
piprabbit · 20/09/2011 14:08

I think it is important that HCPs recognise that any miscarriage, no matter how early, should be treated as a miscarriage. Not because very early miscarriages necessarily require medical treatment - but because of the emotional effect on the woman can still be significant.

It is also important for GPs to properly record very early miscarriages as such, in order to have a complete picture if the woman ends up suffering from recurrent miscarriages. It is very difficult knowing as a woman that you have had several miscarriages, but the GP failing to take your word as they are not in the system and therefore leaving you to have more miscarriages before deciding to refer you.

ChristinedePizan · 20/09/2011 14:07

Bohica - I had exactly the same experience. Had an A&E doctor on a Saturday trying to find a heartbeat when I was 15 weeks, said he couldn't and that it wasn't my fault etc. Went into the EPU on Monday and there was my DS squirming around, happy as larry.

If you don't know how to use a doppler, don't!!

AnnMumsnet · 20/09/2011 13:50

glad the survey is fine....[weak smile] and Smile for bohicas dd2

lubeybooby · 20/09/2011 13:46

Done - also think it was senstively handled and well done mumsnet for the campaign. Keep up the good work

Fubble · 20/09/2011 13:45

Done - here's hoping we can make a difference!

Bohica · 20/09/2011 13:36

Done.

Number 2 is a massive issue to me as well as choice. we were never given any choices with our MC's, I had an erpc everytime.

After 5 mc's one living DD, another mc I fell pregenant again. At 14 weeks I started to bleed heavily with lots of cramps and we naturally thought "here we go again"

My problem is that the staff also thought "here we go again" when I was wheeled onto the ward and a portable scanner was found. The staff member confirmed we were mc'ing and we were left in a side room with DH cleaning me up whilst a staff shift change took place and a erpc booked.

New doctor came into the room to introduce himself and I told him like I had with the previous doctor that most of my pain was in my back on the left hand side. I'd previously had an eptopic so thankfully the new doctor scanned me again and found a heart beat.

DD2 is now 7yrs old.

TRAINED STAFF.

Sorry to shout.

FunnysInTheGarden · 20/09/2011 13:34

All done. Thanks for keeping this in the public eye, it's very important.

Swipe left for the next trending thread