The Mumsnet Miscarriage Code of Care

(190 Posts)
RowanMumsnet (MNHQ) Tue 20-Sep-11 12:19:43

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.

2. 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.

3. 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.

4. 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.

5. 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.

Tee2072 Tue 20-Sep-11 13:01:49

I've filled out the survey and was actually very impressed with out sensitive you managed to make the questions. Hard to answer, but as easy as you could, IYSWIM?

I think Item 4 above is really 2 separate points. Good information and effective treatment and shouldn't be lumped together.

Tee2072 Tue 20-Sep-11 13:02:13

Er, 'with how sensitive'. blush

Done. It was very gently written but it still made me cry!

Meant to also say, thanks so much for doing this. I think it's really important

Done.

Clicked post too fast. Meant to add that, actually, I thought it was done extremely sensitively.

deemented Tue 20-Sep-11 13:11:30

Done.

sfxmum Tue 20-Sep-11 13:11:30

done, thanks for continuing this campaign

Done. Thankyou for both handling this sensitively and aiming to improve care.

It was sensitively done though some of the answers were tricky because my last miscarriage was a mmc of a twin who couldn't be removed via ERPC so had to stay there throughout the remaining pregnancy. I guess it would be hard to tailor the survey to that though.

I feel it is so important for women to talk about miscarriage. I felt I was the only woman who'd ever had one, that it was a rare event, then I found out that all my female colleagues had been through it, as had nearly all my friends, but we kept it quiet, carrying around a secret hurt, only opening up to other women going through the same thing.

RunningOutOfIdeas Tue 20-Sep-11 13:13:13

I have completed the survey. Some of the stories posted on Mumsnet showing how badly miscarriages can be handled by a hospital are just so sad. I feel fortunate that my local hospital already seem to follow all the points listed.

CMOTdibbler Tue 20-Sep-11 13:14:48

Done the survey.

In the code, the information leaflet used should be appropriate to the hospital, and have information and contact details relevant to that area. Not just chucking MA leaflets at people (all I got).
No woman miscarrying at home should have to post on an internet forum while bleeding heavily because their HCPs haven't given them information as to what to do exactly if they are in a lot of pain, bleeding very heavily etc

If your information about what will happen to the foetus says that certain things will happen - like invitations to a service for parents - make sure that actually happens. I was very distressed to have to phone the hospital as the leaflet said they would contact me to check about the disposal of my third baby, and that never happened. A shining light in the whole sorry story was the care of the chaplaincy in helping me on that

Taffeta Tue 20-Sep-11 13:27:26

Done. Its marvellous you are doing this.

NessaRose Tue 20-Sep-11 13:27:31

Done.

FunnysInTheGarden Tue 20-Sep-11 13:34:00

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

Bohica Tue 20-Sep-11 13:36:00

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.

Fubble Tue 20-Sep-11 13:45:26

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

lubeybooby Tue 20-Sep-11 13:46:49

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

AnnMumsnet (MNHQ) Tue 20-Sep-11 13:50:31

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

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!!

piprabbit Tue 20-Sep-11 14:08:32

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.

RunningWithScissors Tue 20-Sep-11 14:12:59

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...

2. 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!

Bohica Tue 20-Sep-11 14:27:10

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

WuzzAndBuddy Tue 20-Sep-11 14:37:34

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

BedHog Tue 20-Sep-11 15:25:27

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.

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 sad

AnnMumsnet (MNHQ) Tue 20-Sep-11 15:46:08

BedHog - done

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

Shipscat Tue 20-Sep-11 16:48:25

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 Tue 20-Sep-11 17:16:44

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 Tue 20-Sep-11 17:49:59

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 Tue 20-Sep-11 18:05:04

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. sad

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.

No apology needed - I am so thankful I have my DS smile

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.

Thank you for doing this.

lemonsquish Tue 20-Sep-11 19:02:16

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 Tue 20-Sep-11 19:14:44

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 Tue 20-Sep-11 19:26:37

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 Tue 20-Sep-11 19:43:03

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 Tue 20-Sep-11 19:47:45

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.

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 Tue 20-Sep-11 20:37:00

Done. Thank you for doing this.

SeenButNotHeard Tue 20-Sep-11 22:04:33

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 Wed 21-Sep-11 11:09:08

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.

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 Wed 21-Sep-11 13:25:36

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 Wed 21-Sep-11 13:42:56

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 Wed 21-Sep-11 14:02:02

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 Wed 21-Sep-11 14:10:04

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 Wed 21-Sep-11 14:29:18

Message withdrawn at poster's request.

Flisspaps Wed 21-Sep-11 14:32:10

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

TheORIGINALWoofLady Wed 21-Sep-11 14:36:00

Done

TheORIGINALWoofLady Wed 21-Sep-11 14:37:01

I agree with Fliss, brilliant to put it mildly

MicBlastaB Wed 21-Sep-11 15:04:39

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.

fuzzyfeltfox Wed 21-Sep-11 15:43:58

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 sad 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.

KatieMumsnet (MNHQ) Wed 21-Sep-11 17:22:50

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.

bluebump Wed 21-Sep-11 18:15:34

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.

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.

WuzzAndBuddy Wed 21-Sep-11 18:30:20

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.

ouryve Wed 21-Sep-11 18:38:31

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.

Dozer Wed 21-Sep-11 19:37:28

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.

Dozer Wed 21-Sep-11 19:38:49

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.

GMTS Wed 21-Sep-11 19:46:24

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.

pickgo Wed 21-Sep-11 19:49:05

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.

pickgo Wed 21-Sep-11 19:53:06

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

Camerondiazepam Wed 21-Sep-11 20:55:01

Done, thanks for drawing attention to an issue that's usually swept under the carpet.

Camerondiazepam Wed 21-Sep-11 20:57:53

Forgot to say, I don't ever remember anyone even mentioning what would happen to the remains after the ERPC. At all.

alana39 Wed 21-Sep-11 21:04:35

Done.

Thank you for this. Overall I was quite lucky with treatment but it bothers me that luck comes into it and I've heard so many horror stories from friends.

Done.
My mum had a mc in 1992, wrote 94 in survey hmm whoops.
I had a mc in 2009 and in that time between my mums and my mc nothing seems to of improved. It is time for something to change.

MadamA Wed 21-Sep-11 21:21:08

I have had a m/c (survey done) and also work in the fertility field and am constantly seeing women who have had one or more miscarriages and who are still trying to get pregnant. Well done Mumsnet - above looks good. Another issue (maybe not for this time) is recurrent miscarriage. It's only investigated after 3 m/c's, but actually Prof Raj Rai from St Mary's, who is one of the UK experts, thinks it should be investigated after 2 if the first two pregnancies got to the 8 week stage. A massive resource issue obviously but could pick up a load of women with treatable rec m/c.

BedHog Wed 21-Sep-11 21:24:13

Cameron, did you not have a consent form to sign before your ERPC, saying that the remains would go to the crematorium and then on to the garden of remembrance? They went to great trouble explaining it all to me, even though I'd had a second scan and the embryo had gone by then. It seems so ridiculous that procedures and experiences differ so much around the country.

MissTinaTeaspoon - I felt the opposite about the references to losing the foetus/embryo/baby. I hated it when people referred to my mc (at 10 wks) as 'losing a baby' as it felt as if they were somehow enforcing a level of grief onto me which would be more appropriate to a much later loss, which I wasn't feeling and had no desire to go to that dark place that sadly some people find themselves.

Camerondiazepam Wed 21-Sep-11 21:29:42

Honestly bedhog I don't remember it being mentioned at all but I may well have totally blanked it. I only remember the consent form about all the awful things that might happen to me on the table. Was quite surprised to see the whole "garden of remembrance" thing on this thread tbh.

balia Wed 21-Sep-11 22:25:12

Survey done, with tears, but very worthwhile. I have been pregnant 10 times and - thankfully - have two wonderful children of 17 and 4. I treasure the one scan photo I have of one of the others. I'm sure I went for more scans but didn't think to ask for photos. I wish I could have had those remembrances. Maybe people think it would be macabre.

I also found the most insensitive people were the midwives I saw when pregnant again (and not all, by any means) who made no mention of my history, or were difficult about my reluctance to be poked and prodded, or implied that it would serve me right if my baby had Downs because in my last, despairing hope of keeping foetus no10 alive I had not informed any health practitioners of my latest pregnancy until I felt 'safe' enough (so was too late for some of the testing). Bitch.

survey done

the only people that were really kind to me at the time of my mc were the hospital chaplains who were the ones who told me where to go to lay flowers for my baby and to be assured that my babies remains would be treated with respect they even issued a certificate which stated that my baby was blessed by them . the other person was the doctor who put me to sleep for the erpc and only because he and his wife had gone through the same and he made it his personal mission to make everyone feel informed at what was happening to them

Part of (4) is confusing.

"Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting."

Are you saying that this is what the surgical procedure should be called, or what the name should be changed away from?

IME, that's what it was called, and I did indeed find the name confusing and upsetting.

VenetiaLanyon Thu 22-Sep-11 09:34:45

I second what MadamA said about recurrent miscarriage - would love to see something about this added to the code

cleas Thu 22-Sep-11 10:34:08

All done. It's nice to know that you guys are trying to improve the way miscarriage is handled. Thank you.
I genuinely believe some sort of sensitivity training may be useful too for sonographers given that they are the often the person breaking the news of a mc to many. All too often they don't know what to say themselves - perhaps they would welcome a bit of support with this? Plus having experienced a molar pregnancy it would be nice to see the information provided improved (anything would be better than none!). I appreciate it may be rare but even a printed off leaflet with some basic information would be better than being left to google information at home alone.

m0nkeynuts Thu 22-Sep-11 10:55:20

Done.

KarenHL Thu 22-Sep-11 11:06:43

I think it's point 3 that resonate with me more. I misc when away from home, volunteering. So I had to visit the local A&E. Following day had to wait in antenatal, had scan told 50/50 whether I was misc. Told to stop crying! And told to return to antenatal while they dealt with notes. Misc two hours later. Did not return there as could not face it.

Went to A&E as recommended when we got home (bleeding was heavier). No information, put in tiny room with lots of gynae equipment for ages presumably until staff finished lunch. Don't mind that, but it would have been nice to have been told/warned that it might take a while to see someone. You're surrounded by all that equipment and your imagination goes into overdrive.

Following day in antenatal for a scan. Taken straight to cons as apparently no hormone left in my wee. Had to leave after that news, straight through/past happy mothers. What bugs me most in that particular clinic is that if they have bad news for you, they try to make you wait until all the 'happy news' is delivered to everyone else, so you leave after everyone else. Bugger the fact you've taken time off for an appt or that you'd like some time to sit and deal with stuff before you have to return to work - no, you're left there for up to 90mins after your appointment slot. If it is that big a problem for the NHS, kindly either see us elsewhere or give us another door to leave from.

Point 4
It took almost a week to find out whether I had actually miscarried or not. The only information I was given was 'we don't know, come back for a scan tomorrow', and 'if the bleeding gets heavier, call us'. It was an issue that scans could not be done on the same day - it just delays everything by another day (plus another day lost in travel & waiting rooms). 45 mins each way to hospitals, plus the 3 hours or you just spend waiting not being told anything. The first time in A&E, the doc came to see us, said he'd be back in a few minutes and promptly took a group of new docs on a tour of A&E, did his speech and then came back to us. I know this stuff has to be done, but why does that take priority over a woman terrified she is miscarrying? At every point no-one was willing to confirm if I was miscarrying, or what would happen if I was. I was absolutely in shock when the foetus 'passed' as I had no idea of what would happen, just that I was bleeding while pregnant and that it could be a misc.

Just in case anything thinks this is old history, it was less than two months ago. PLEASE SUPPORT THIS CAMPAIGN and GET THINGS CHANGED.

WuzzAndBuddy Thu 22-Sep-11 11:23:56

Cleas, I had a molar pregnancy too, I was told the baby with heartbeat that we'd seen on a scan at 6wks 'just wasn't there' on a scan at 11wks...
No one could give me an answer to where it had gone sad Infact, I was asked at one point if I was sure I was pregnant!
It seems no one at Salisbury hospital knew about molar pregnancies and I only found out that thats what I'd had 2months later when I got a phone call from Charing Cross hospital who had become involved when tests had been carried out on the 'products of conception', as they phrase it, after the ERPC...

I was left totally in the dark for 2months, just as we were starting to pull ourselves together after my 2nd miscarriage in 7months, they then dragged it all back up and I had to complete the 6months of tests.

So, my point... blush is that I agree, although not very common, there should be more information available regarding molar pregnancies rather than being scared silly by Dr Google.

kat2504 Thu 22-Sep-11 12:06:22

Things really need to change.
In my local hospital, where I was treated for missed miscarriage in April, the EPU is in the bloody maternity ward! Talk about insensitive, looking at all baby posters when you know you have just lost yours.
I had the misfortune of miscarrying over that time when there were 2 long bank holiday weekends in a row. So I couldn't be admitted to the EPU for the day and went to gynae ward for the joy of medical miscarriage. I had not been properly informed about the horrors that awaited me (period pain my arse) and much of the time, the staff were more interested in watching the Royal Wedding on television.

Thankfully I have had some better treatment at the same hospital. I'm pregnant again and the EPU have been kind and reassuring. However, in the lead up to this point, guess where the recurrent miscarriage clinic is held? That's right, I had the appointment in the maternity wing and had to wait in the antenatal outpatients area looking at people cooing over their scan pictures. Very thoughtful.

Loopymumsy Thu 22-Sep-11 12:56:43

Message withdrawn at poster's request.

I am lucky that I was able to afford a private scan at 8.5 weeks as I was turned down on account of "not having enough miscarriages" to qualify for one.

Having a miscarriage changes everything. Every scan for my DS was exciting and interesting. Every scan for DS2 (post miscarrage) was nerve wracking and tense. Having a scan at 8.5wks made all the difference and should be available to everyone.

Good old Mumsnet. Ignore the critics - this alone justifies your existence!

BoffinMum Thu 22-Sep-11 13:14:34

TBH given the choice of lying next to dying gynae cancer patients or a single bedroom off a postnatal ward, I would pick the latter any time. This happened to me and it was much more cheerful being surrounded by good vibes than seeing other people near death and feeling unentitled to grieve as my problems were in the bigger scheme of things somewhat smaller.

cornflakegirl Thu 22-Sep-11 13:16:58

I'm not sure that I'd want to announce a pregnancy earlier. When I was trying for DC2, I had to tell some close friends that we couldn't go on holiday with them because I was pregnant. I was only 6 weeks, and had had two mcs in the previous months. I told them, but absolutely didn't want congratulations, because I knew there was a good chance that I would have another mc. Sadly, I did mc a couple of weeks later, and I found it quite hard to have to tell them that.

However, my next pregnancy did go full term, and since having DS2, I find it much easier to tell people about my miscarriages.

kat2504 Thu 22-Sep-11 13:18:09

My first miscarriage I had ERPC and in that hospital it was done in the day surgery unit so nowhere near either postnatal or gynae. That was the best way. When I had to go (in a different hospital) into the maternity block in order to miscarry, it was just awful. I also think it is crap for the gynae patients to be treated in the maternity block as often they have things that leave you infertile.
My hospital has a "lump all women's shit together in this old building" philosophy.

Dozer Thu 22-Sep-11 13:49:19

boffinmum and kat2504, that's a good point about locating miscarriage services in with gynae. The gynae wards have people with serious cancer etc. Those patients might find it upsetting to have women with m/c on the ward.

hiddenhome Thu 22-Sep-11 14:01:55

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 sad

CMOTdibbler Thu 22-Sep-11 14:06:21

I forgot to put that when I was going to see the recurrent miscarriage consultant, scans for his fertility clinic, and recurrent miscarriers were done in the antenatal clinic. Just where you want to be in either of those groups. And even though it wasn't general AN time, the staff weren't allowed to switch off the 'baby channel' TV

ColdSancerre Thu 22-Sep-11 14:32:51

Yup same here CMOT, the recurrent mc clinic in the antenatal department is unecessarily cruel. Is there really no alternative to this?

That said the doctor we saw in the rmc clinic I was very happy with, she explained everything, talked, gave us time, listened and referred to our losses as babies. Not 'products'.

kat2504 Thu 22-Sep-11 14:38:34

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.

piprabbit Thu 22-Sep-11 14:38:54

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.

Done. sad but smile it's being addressed. Good luck MNHQ.

BedHog Thu 22-Sep-11 16:13:10

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.

Mouseface Thu 22-Sep-11 16:23:49

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

Mouseface Thu 22-Sep-11 16:24:04

'MNHQ' even!

danceswithfools Thu 22-Sep-11 16:58:50

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.

Pippi965 Thu 22-Sep-11 18:41:14

All done : )

mamadoc Thu 22-Sep-11 21:24:26

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!'
5. 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.

mamadoc Thu 22-Sep-11 21:34:32

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.

YankNCock Thu 22-Sep-11 21:48:44

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.

billiejean Thu 22-Sep-11 21:53:54

Done.

bubby64 Thu 22-Sep-11 22:15:58

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 Thu 22-Sep-11 22:37:10

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 Thu 22-Sep-11 22:59:11

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 Thu 22-Sep-11 23:00:17

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 Fri 23-Sep-11 10:21:00

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 Fri 23-Sep-11 10:26:13

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 Fri 23-Sep-11 12:19:40

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

YaMaYaMa Fri 23-Sep-11 12:47:03

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 Fri 23-Sep-11 16:59:37

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 Fri 23-Sep-11 19:36:45

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 (MNHQ) Fri 23-Sep-11 20:44:38

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

GracieGirl Fri 23-Sep-11 20:51:09

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 Fri 23-Sep-11 22:01:54

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 Fri 23-Sep-11 22:19:56

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.

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.

done.

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 Sat 24-Sep-11 09:24:29

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 Sat 24-Sep-11 13:17:57

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 Sat 24-Sep-11 14:05:00

Taken survey. 2mc in 1 year so far. sad. 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 Sat 24-Sep-11 14:08:10

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 Sat 24-Sep-11 18:44:54

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 Sat 24-Sep-11 19:27:04

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 Sat 24-Sep-11 19:38:24

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.

ducksinarow Sat 24-Sep-11 19:46:24

I forgot to say that with my last miscarriage I was scanned and told that my uterus was now back to normal size, so the miscarriage was over (despite having been told 3 days earlier that uterus was still very enlarged after the bleeding stopped) So it was a huge shock when 4 weeks later I finally passed the pregnancy sac.

I had been refused hcg level testing to see if the levels were declining. I had to use the unscientific method of using pregnancy tests at home to watch my hcg levels fall very slowly (they only finally went negative after I passed the pregnancy sac a month afterwards).

A simple thing as hcg blood tests would have shown my levels were dropping too slowly, and I might have been offered another scan to check what was happening. That way the sudden extreme pain and the passing of the pregnancy sac at home, would not have been so tramatic.

It is simple things that could help make miscarrying easier.

blackeyedsusan Sat 24-Sep-11 22:32:32

at first when I went for a scan, they could find nothing, then an internal scan found a five week sac, hopes up only to be dashed later. that needed more explanation and better handling, because I naturally hoped I had got the dates wrong, even though thinking back it would not have been possible to have had a +ve test when i did and been 5 weeks pregnant, but you just don't think clearly at the time.

more people need to acknowledge that to us it was a baby and it was devastating and just because it wasn't ectopic or further along it was not upsetting.

and that includes you mil did you not think that we might just want to grieve in peace without having to meet up with people on holiday just 2 weeks after and be all nicey-nicey or having to talk about it before we are ready? obviously not or there wouldn't have been that i'm-so-upset phonecall and h what did you think you would achieve by telling me that?

<and breathe>

some post miscarriage support would not have gone amiss because sometimes it is odd looking at ds and thinking that he would not be here if all had gone to plan.

jaffababy Sat 24-Sep-11 23:18:49

I agree with thinking 'abortion' should be edited. And 'missed abortion' feels insulting, as if I was confused or scatty and didn't notice, when the truth is we prayed every day this one wasn't going to give up. "Oops, Jaffa, you missed your abortion."

fostermumtomany Sat 24-Sep-11 23:32:55

thankyou so much for doing this. i was treated so badly during my 4th mc.

i was offered counselling for my 'natural spontanious abortion' and the first words out the counsellers mouth were..."so your baby is dead"..... i was 22 weeks pregnant and had to deliver him normally. a bit of sympathy would have been nice at that time and also to not have been placed in the ward with all the new mums and babies.
it is a very important thing to show compassion to a woman at a time like that and when you dont receive any its soul destroying.

Yourefired Sat 24-Sep-11 23:43:27

This will sound a bit silly but it upset me. After my miscarriage I didn't know what to do with my prescription exemption certificate. I, stupidly, phoned them to ask and was told breezily to rip it up and bin it. It was the only official recognition that a life had lived and died to me, and it hurt. Could an instuction, suitable worded, be printed on said document.

I'm so glad you're doing this campaign. It is so important.

kat2504 Sun 25-Sep-11 07:34:53

they do now have an instruction to return the exemption card in the post if you miscarry before 24 weeks. I have never found the strength to do this though. Can't they imagine how hard it is to say "I've lost the baby so here is your exemption certificate back" in a letter?

ziptoes Sun 25-Sep-11 21:01:23

After being told I'd had a spontaneous abortion, I was so angry at the use of such an insensitive term I checked the royal college of obstetricians guidelines and they are clear that term is out of date and considered to be insensitive usage (though medically correct). Shame some folk can't follow their own guidelines.

One thing I think would be worth adding to the campaign is a highlighting the issue of miscarriage in sex education at school. Until I had a miscarriage I had absolutely no idea that they are so common. It was such a shock. It would have perhaps been less of a shock if we had been told at school along with the gubbins about how babies are made and contraception. I know a bit of decent sex ed is never going to make a miscarriage easier to bear, but it might just make it less of a surprise, and help people to understand whey they shouldn't tell family and friends too early on.

vividgingerchilli Sun 25-Sep-11 21:27:23

Why are you focussing only on miscarriage and not other losses such as ectopic pregnancy, blighted ovum etc?

DoTheStrand Sun 25-Sep-11 22:12:55

I have filled in the survey, but about my first mc which was on the NHS.

The NHS missed mc was a v mixed experience - a lovely sonographer who gave me a big hug when breaking the bad news, a helpful hospital receptionist finding me a private room to cry in when I got back from the scan in tears, two doctors who were supportive and helpful. A week later when I went back for the op the different receptionist was grumpy and rude, the nurses were very short with me and made it clear that any problems I had in the days after the op should be dealt with by my GP, they didn't want to know (which makes me wonder if they ever find out what their post-op infection rates etc are), the curtains didn't shut on my cubicle (a small point but really not pleasant when you are having an internal examination on a ward!), when I went down for the op a nurse said "you look happy". The anaesthetist and surgeon however were both lovely.

Second missed mc was private (private scan and private operation). It cost us a lot but were treated brilliantly at every step (including the scanning centre - we didn't have to pay straight afterwards but were told we would be sent the bill to pay later which was much easier). When I had the op (which I had within a day) I had a lovely nurse who explained everything several times and really looked after me. My consultant was also very kind and supportive.

With the second mc, I also had tests done on the baby to find out the cause. I found knowing the reason a huge relief as my due date got nearer - as I knew that due to the chromosomal abnormality that was found, the pregnancy was never going to have got to the due date, if that makes sense (I think that due dates are a real trauma after a mc - sadness mixed with loneliness as so many friends/family have forgotten when you were due, if they ever knew).

Good luck with the campaign.

Survey completed. Thank you. I did weep, but it was sensitive. Let's hope it helps. Here are my small additions or clarifications to your points, but what is there is good.
1. Definite training essential (shame we can't include employer/company HR departments in that). Counselling should be offered and not just make your way to a dreary local meeting of Miscarriage Assoc support to find out you are so many miscarriages behind everyone else. While I was humbled and realised my situation could be worse I did not find it supportive. Also, no assumptions made without fact on what the scan shows. I was told a definite MM. But when I asked how sure they were it fell very short of 100% and those remaining % were important to me so I went back a week later to check. They were sadly right but that % made a huge difference to my choices. Also contact with a hospital chaplain should be offered.
2. Access to scanning. I think this shouldn't have to go through a GP but you should be able to just take yourself for a scan if you need one, or at least contact EPAU direct. This is possible out of hours... so why not all the time?
3. EPAU/Scans should not have people coming out into the waiting room directly on being told the result of scan. A separate entrance and exit (similar to cancer screening) with a place for contemplation/support after would be better.
4. Good. But also information on when and at what point you can change your mind i.e. if you decide to do things naturally and then feel (medical)intervention is needed. Also full information on possible side-effects and stats on how likely.
5. Definite joined up care. Can there be any information to give to employers as well or how to explain it to employers and what to expect. Can there not be bereavement leave? Definite subsequent booking and scan appointments cancelled by HCP.
Good job MN, thanks.

cocoachannel Mon 26-Sep-11 12:50:45

Like Vivid, I wonder why you are only concentrating on miscarriage, and would recommend speaking to Helen Wilkinson and colleagues at the Ectopic Pregnancy Trust for input and their counterparts in other related charities.

My experience was an ectopic, but to add to point 3; in the (long) wait for my laproscopy I was put in a ward opposite a lagy who had bladder problems and was visited by members of her family including three newborn babies. When my Mum politely asked them if they would mind visiting in the family room as I had become so distressed they complained to staff and I was moved for being 'disruptive'.

Like many other posted I waited in an antenatal outpatients department to be seen by the EPU, whilst bleeding. I had to return to the same place for my blood tests a week after my laproscopy.

Access to a private telephone post-diagnosis may seem a small thing but should be added. We were given this, but I imagine it's not always common place.

Joined up care is crucial. I was taken into a different hospital for my ectopic to the one in which I was registered by when first pregnant. This meant that three weeks after my pregnancy and fallopian tube had been removed, I received an appointment for my 12 week scan and a pack of baby info.

ColdSancerre Mon 26-Sep-11 13:28:32

Vivid - blighted ovum is a miscarriage. Its just a way of describing a miscarriage, in that it is an empty gestational sac. I have had three miscarriages one of which was a blighted ovum.

kat2504 Mon 26-Sep-11 14:11:42

Both of my miscarriages have been recorded as "blighted ovum". The first actually wasn't but that's another matter.
Blighted ovum is not an up to date term and I think others have been recommended such as early pregnancy loss or early embryonic demise.

ees Mon 26-Sep-11 20:23:13

Done,& thank you for this campaign as we really need to be more open about talking about miscarriage and improve the support & service available.

ACeTeenMum Mon 26-Sep-11 20:24:44

I hope this campaign is a huge success and the outcome is improved welfare of everyone who is experiencing miscarriage. I work for Infertility Network which provides support to all those who experience infertility and too often we hear how badly people have been treated following miscarriages. If we can help with this campaign in any way we will be glad to do so

greenzebra Tue 27-Sep-11 10:23:05

Have filled it in and thought it was very sensitive.

My situation is slightly different as I had a miscarriage at 5 weeks three months after I lost my daughter to stillbirth. This was never brought up on the phone by the nurse who was diagnosing me, she obviously had not read my notes. She didnt offer me an appointment just told me to get on with myself really and if I had more pain to go to the hospital. I was very distressed, but maybe didnt come across like that on the phone. I think it all needs a overhaul, I got more support and diagnosis on the conception forum here than I did from my GPs surgery. I think the whole of pregnancy care needs to be overhauled, can we also compaign about this on MN? I think the booking in appointment should be handled differently, with more information and talking about miscarriage and stillbirth. I agree with above posts that we should be able to go to the EPU or maybe they are the people we need to talk to and have contact with from the start. I find the book they give you at the booking in appointment is not very adequate. I think the midwife should talk you through what you need to look out for throughout your pregnancy not just leave it to the book. I also think there should be a pack given to you when you tell your gp that you are pregnant, to get you through to the booking in appointment.

I watch these american baby pregnancy shows and also from what my Australian sister in law has experienced they get amazing care, they are scanned all the time, they talk to a doctor through out their pg. They seam to have sympathic support, I know its just telly but it doesnt reflect well on our NHS.

adp0211 Tue 27-Sep-11 10:25:42

I thought the survey was very sensitively done. Did bring back painful memories but very worthwhile. I also think the Code of Care looks very sensible.

greenzebra Tue 27-Sep-11 10:38:36

Also maybe it should be changed from miscarriage to early pregnancy loss.

xxmush1983xx Tue 27-Sep-11 11:36:16

Completed the survey - was actually good to get my point across where it would be listened to.

I had a miscarriage at 8 weeks, but I actually started bleeding the day after a positive pregnancy test. I phoned the on call GP and was met with the response of "Ah well, these things happen", and "If you hadn't done the test you would never have known". This made me feel so insignificant and as if I was overreacting, and it was a week before I finally returned to a different GP at the practice and was immediately referred for a scan the next day. Sonographer and nurses were excellent during the scan, as I had to take my daughter to the scan with me. After the scan I was led into a room with my daughter and left there on my own with her for about half an hour. The nurse came into the room and basically told me I was being sent home to pass the pregnancy naturally and to take paracetamol for the pain. I asked for some sort of medical intervention but was refused. After another week of bleeding I passed the baby in ASDA toilets of all places. I still feel I should have had some sort of medical intervention.

I was pregnant again within a couple of months and now have DD2 smile

bigmacandhappymeal Tue 27-Sep-11 12:06:18

Thank you for doing this.

I've completed the survey (well worded and sensitive, thank you) and completely support the 5 points you have suggested. Good luck.

2rebecca Tue 27-Sep-11 14:09:01

The trouble with point 2 is that with a cash strapped NHS if you increase scanning access for women who are having bleeds in early pregnancy at weekends the money will have to come from somewhere else. If medical staff think a woman's life is not at risk then delaying scanning by a couple of days is not going to really change anything in most miscarriages. It may reassure a woman if the scan is OK, often early scans are ambiguous and you need a later scan and it may confirm some women are miscarrying. It rarely changes what you do on a weekend though, plus you can have a normal scan 1 week and miscarry the next. I would rather the money (which will come from the gynaecology budget) was spent on things that make a practical difference, especially gynaecological cancer treatment. Renaming the ERPC procedure sounds sensible. Training staff in point 1 sounds sensible and should already happen, although it sounds as though many women were thoughtlessly treated. Things have improved alot though with miscarriages no longer routinely called threatened or inevitable abortions.

MissedOne Tue 27-Sep-11 21:31:29

About time we made some noise about this. Have a thought for the hospital staff though; It must be hard to work somewhere where you're exposed to such loss every day. Perhaps it is fear of allowing it to affect them, or it numbs those who do and that's why so many of us have such devastating experiences at their hands. When you need a shoulder and to be told you are not alone you're isolated and lumped with pregnant people who should not have bear witness to such loss, or worse - people who have chosen to terminate when your world is dissolving.

Alwaysworthchecking Tue 27-Sep-11 21:38:30

Done and I like the code of conduct.

Done here as well.

In tears again and especially after reading other stories so similar to mine - I was actually corrected by the scan tech when asking (tearfully) 'was my baby going to be okay' - she said 'it's a foetus actually at this stage but it's not viable and probably hasn't been for a couple of weeks'. It was MY BABY. FFS.

Still makes me feel sick now.

Having said that so many of the NHS staff were absolutely wonderful, it was just the scan where the loss of a much-wanted baby was treated like a routine cervical smear.

2rebecca Thu 29-Sep-11 11:44:31

The scan tech wouldn't have been deliberately trying to upset you though. I think alot of the problems women miscarrying have is because the medical technology is different to the lay terminology.
The act of miscarrying had been called aborting by doctors and nurses for over 100 years. What lay people call "abortions" are called terminations by health staff. In the days before frequent NHS terminations people had to get their pregnancy terminated illegally and the result of this was an "illegal abortion" but the abortion was the miscarriage, not the procedure that caused the miscarriage.
Most medically trained people automatically call babies in utero foetuses, that's just what they are called, they become babies once they are born, although when I was pregnant I would talk about "my baby" I would expect any medical staff examining me to discuss foetuses and be comfortable with that.
Anyone medical would see "inevitable abortion" "missed abortion" "incomplete abortion" "habitual aborter" on a patients notes and know that these were what lay people called miscarriages.
I think the very early stage at which women can now detect pregnancies adds to the stress as 20-30 years ago you wouldn't detect a pregnancy until about 6 weeks and alot of women miscarry at 5-6 weeks. I didn't really view myself as properly pregnant until I had my 12 week scan as I knew 1 in 5 pregnancies miscarries/ aborts before that stage.

kat2504 Thu 29-Sep-11 11:48:48

Yes I know these are medical terms but it does not help to hear them when you have just been given bad news and are in a very distressed state. People who work in this area must see how upset women get and have a bit more sensitivity.
And we do know that 1 in 5 pregnancies miscarry in the first trimester, but many if not most women start to imagine a baby as soon as they know they are pregnant. Early testing is in part a cause of this, but I did not need a test to know that I was pregnant at 6 weeks. I think in the past a lot of women did know they had lost a baby, but it just was not recognised by the medical profession.

ColdSancerre Thu 29-Sep-11 12:06:51

2rebecca I think you're being quite unhelpful. People who have suffered early pregnancy losses for the most part fully understand what the medical terminology means but as kat says its about sensitivity. Its just the attitude that you show that MN are campaigning against. And as for not thinking of it as a baby, well good for you, clearly others can't be so cilinical with respect to their pregnancies.

Your post has really pissed me off. Is 'habitual aborter' really a term to bandy about on a thread like this?

2rebecca Thu 29-Sep-11 12:11:40

I only posted it because someone earlier in the thread had been upset at seeing the term on her notes. These are medical terms, to a doctor it's just like calling a chest infection bronchitis or pneumonia or a sore throat pharyngitis. It's just medical terminology. It isn't meant to upset people. Most doctors and midwives will be talking about miscarriages to the patient, but many othen will still be writing "spontaneous abortion" in the notes because that is the correct medical terminology and has been for many years.

kat2504 Thu 29-Sep-11 12:17:49

It made me feel like "aborting" was some sort of "bad habit" that I had. Like, ooh shit I just can't help my self from aborting my babies. Even the guidelines on these terms have changed and professionals are encouraged to use the new terms.
And it wasn't just written on my notes. This doctor said it out loud to me. When I was having a miscarriage. Fortunately the consultant I saw was more enlightened and they use recurrent miscarriage rather than calling it a clinic for habitual aborters.

Finallygotaroundtoit Thu 29-Sep-11 19:17:38

The Code of Care is very good but like 2rebecca I'm not sure about the scanning.
To have a 24 hr scanning service with rapid access would only be feasible in very,very large hospitals. Similarly 'purpose built' units (separate waiting rooms,exits etc) would only be feasible if there were only a very few of them in the whole country sad
Would women want to travel long distances to access them?

VenetiaLanyon Fri 30-Sep-11 11:34:37

2Rebecca, I think that you're clearly demonstrating why the Mumsnet code is necessary.

Of course the medical profession is not deliberately trying to cause upset, and yes these are the medical terms; but part of what makes a good medical professional is being senstitive to the differences to the patient between technical and layman's terms, and why what is appropriate between medical professionals can be unhelpful and upsetting for patients.

ducksinarow Fri 30-Sep-11 11:59:40

2rebecca - I am confused by your attitute. Am I a habitual aborter or have I not been "properly pregnant" 11 times???? As I did not reach the wonderful 12 week mark but only got up to 11 weeks, - was I never properly pregnant in your view???? So the scans showing a feotus with a heart beating,,,,, that is not a proper pregnancy in your view......!!!!!!!!

I have a medical background and personally, do not have a huge issue with the medical terms written in my medical notes, but I have huge issue with you suggesting the correct way that I should be thinking was never (to quote your words) to consider myself "properly pregnant until I had my 12 week scan as I knew 1 in 5 pregnancies miscarries/ aborts before that stage."

I was pregnant each time, and there is no such thing as "Properly pregnant", you are medically pregnant or not. Having a miscarriage or abortion, does not mean that you have to put up with ignorant statements such as yours that try to minimise the grief of the premature loss of a pregnancy.

ducksinarow Fri 30-Sep-11 12:18:47

I am sorry if my last post comes across as angry, I did not mean it that way.

But I have come across some doctors who try to tell me that only 4 of my 11 miscarriages were important, as they got passed the 5/6 week mark. Those other 4 were somehow superior / more important as they got nearer to the 12 weeks. Just because medically the earlier ones in the past would not have been detected and that they are very likely due to genetic errors and it is the natural way for the body to deal with it by spontaneous abortion, does not mean that that pregnancy did not occur. It was still a pregnancy that was lost, no matter how early. I think it is this point that the doctors sometimes cannot understand.

And yes, I admit that the earlier pregnancy losses are easier in some ways. Physically they are easier, mentally is it less time wondering "will this pregnancy go to term this time" and emotionally it is easier as it is less time building up hope that "this is it, I might have a baby at the end, and how will it be having that baby in my arms".

Earlier pregnancy losses are easier, but they are still pregnancies and still involve a loss of that pregnancy. How much hopes and dreams and emotional investment in that my vary from one woman to another, and in my case from one pregnnacy to another. But each one is a loss and should be recognised as such.

I had a 6 week loss that caused me much heartache and emotional pain but no physical pain, whilst an 8 week one that although physically more to deal with, was emotionally much easier. I have had 5 and 7 week pregnancy losses that I barely noticed, in emotional terms as I have not had the energy to put in any emotional investment more recently. I no longer think that a pregnacy means a potential baby. But it still hurts for people to assume that language used by medical people does not matter, it is the attitute that they have that really hurts sometimes.

jwssubs Fri 30-Sep-11 13:00:54

Thanks for posting the revised Code of Care - a lot of thought has gone into it. Some points about the Code as it is now:

1. Supportive staff - this does seem to vary a lot, with some staff seemingly unable to use anything other than medical terminology and not want to acknowledge the humanity of our losses. Perhaps they do this as a way of detaching themselves and getting through their working days - and maybe this point should be expanded to include some support for the staff as well, so that they have a way of getting support should they need it. In my experience, staff who "get it" and use sensitive language get it because they've been through it themselves - it shouldn't be a pre-requisite for sensitive care. Scanning staff are particularly key as they are in the front-line and are usually the ones who have to deliver the bad news.

There is also usually no information at all on walls or in leaflets about support organisations such as the Miscarriage Association, Ectopic Trust, Antenatal Results and Choices, or the Stillbirth and Neonatal Death Society, and remembrance services - in hospitals, which perpetuates the feeling that you're the only one in the world this has happened to.

Regarding the follow-up appointments - some hospitals have midwife counsellors but this isn't a standard post in all hospitals - and it should be, if the follow-up appointments are to be offered, they should be with suitably trained personnel. Not sure if this service could be offered without extra cost being incurred. If a hospital is handling 30 women a day who miscarry, where are the staff coming from who could offer a course of counselling? There's also the issue of place: I did not want to return to the hospital where I lost my baby, so soon after the event. There is also the question of who provides the support - personally, preferred to get support from someone who had been through losing babies herself, not a mental health professional. I didn't see my grief as something that needed counselling, but empathy.

Also, some women just want to get out of there and not go back and may not wish to have such follow-up, and certainly wouldn't want a phone call coming out of the blue. It would be more sensitive to make this a service that people can opt into, and be given the option of whether they would wish to have such followup, and if so, whether they would make the call themselves or wish to be contacted by the hospital.

2. Access to scanning - a tricky one because I do agree with the principle of on-demand scanning 24/7 not just Monday to Friday 9-5, but on the other hand, found scans very stressful regardless of the outcome, whenever I had them. I would have prefered to also have the option of having blood tests for HCG level monitoring as a low-tech alternative that could be done at the GP surgery and not require a hospital visit. This would of course have to be repeated 48 hours later to check what the HCG levels were doing, with a scan being ordered if the levels weren't doubling or trebling.

3. Safe and appropriate paces for treatment - totally agree about facilities being separate - not sure how this would work though because I know of women who have found being in a gynae ward distressing too - maybe the answer is to have all care in Early Pregnancy Units that have ultrasound facilities, and beds for care pre and post op/medical miscarriages.

I would also like to have more clarity about what scan operators tell women they are scanning - they cannot say when our baby died, just from one scan, as the sac shrinks when the baby is dying or has died because the level of amniotic fluid falls, which is how they can tell when there's a potential problem. So hearing that the sac is the size of a 6-week pregnancy not 12 weeks doesn't mean that the baby died at 6 weeks - it means that the sac has shrunk to the size of what a healthy sac measures at 6 weeks.

4. Good information and effective treatment - not all hospitals can offer a medically-induced miscarriage (where you're given medication not surgery) and so having all three options available everywhere would eradicate the current postcode lottery.

There should be a national standard set of leaflets that are given out, and options talked through: at the moment, each trust/hospital produces their own, and that seems unnecessary and inconsistent. There is of course the difficulty of absorbing information when your brain has just been scrambed by hearing the worst possible news (that your baby has died) - and being asked to make a choice about how you want to lose him/her.

There is such a wide range of experience in terms of losing a baby at home, and how much blood is lost, but in my experience calling it "like a heavy period" is ridiculously misleading.

I agree that the question of what happens to the baby should be discussed - although I would prefer to not see the word "foetus" here - no-one says they're expected a foetus - I think we should be given the option of attending the cremation that the hospital arrange, or having them back, or having our own cremation. I did the latter with the help of the hospital chaplain when I had surgery to remove my baby, and found that very comforting. But I appreciate that not everyone can face this - I would just prefer it to be given as an option to everyone.

The name of the procedure - I agree that ERPC is dehumanising but it is making the point that it's not just about removing the baby, it's about removing the placenta and the chorionic villi and everything else that was created during the pregnancy. This is particularly applicable in cases where the baby has actually already been lost but surgery is needed to remove the placenta etc. I'm really not sure what it should be called instead.

I think that there should be mention of testing the baby's remains for chromosome analysis (to see if there was a chromosome problem with the baby, either inherited or a one-off) as well as for molar cells - and also, that the placenta should be checked for evidence of a blood clotting disorder. I appreciate that this may not always be possible, but as samples are routinely sent to histology for testing for the presence of molar cells, then why not have these as standard as well?

5. Joined-up care - sounds great in principle but what about cases where the woman does not actually want people to know, not even the doctor? I think this should be an optional element rather than an automatic one, to give women the control over the information.

On a general note, I'm puzzled as to how Mumsnet sees the Code of Care working in harmony with existing support organisations - reading the Code does create the impression that there is nothing in place at the moment. Sorry if I've missed another thread where this was explained, but I'm puzzled as to why the Miscarriage Association and Ectopic Trust are not included in it (and indeed, are missing from the Questionnaire). Does Mumsnet hope that all women's needs for care should be met by the NHS? I ask this because I assume that the Health Minister will ask!

Evilberry Fri 30-Sep-11 14:08:12

I had a mc in August at 9weeks. I had bleeding with DC1, so I wasn't overly concerned. When it got heavier I went to my GP and they booked in an emergency scan - the first appointment was 3 days away! I spent those 3 days not knowing if my baby was still there. At the scan the sonographer was very sensitive and kind, but there was no mention of pain relief. She described it as period pain, which I cope with pretty well. The cramps the next day were very painful and shocking.

I agree with Mamadoc upthread, having to cancel my future appointments was very distressing. I had 3 to cancel and the diabetic ante-natal was the worst. The receptionist kept trying to make me rebook the appointment, even though I kept saying that I didn't need it. I had to say that I had a mc several times to get through to her. Why can't the hospital that confirms the mc co-ordinate and cancel those appointments for me?

Dozer Fri 30-Sep-11 20:27:43

From the experiences on here, staff behaviour seems to be a key issue, perhaps there's more the code could say about this.

I still think that some of the more costly things in the Code need proper, evidence-based justification.

Happylander Fri 30-Sep-11 21:23:38

I have not read all the thread and clicked on it because I work in an A and E dept and have to deal with women having a miscarriage. Luckily now we have a GAU and women tend to go straight up there once we have assessed rather than wait in A and E. I have had very little training on this and always feel inadequate when it comes to helping women having MC. Most of the nurses never know what to say and although some may come across as being uncaring a lot of the time that is not the case. We just don't know what to say to make women feel better as everyone is different. I find it heartbreaking seeing women go through such a difficult time and it would be good to know what we can say to make it better or should I say less traumatic. I would also like to know what not to say!

Done. And it made me cry. And I forgot to include this.

We lost our son after 20 weeks, but at 8 weeks I had an early bleed.

I was admitted to hospital for a check up and sat in a room used for storage for two hours before being seen.

I was then moved to a cubicle in A&E and then moved out again because they needed the area for some joyriders who had crashed their car. There was no space for me anywhere so I was wheeled on a trolley to a corridor, opposite the lift, within sight of the waiting room and beside some chairs where the families of the joyriders had been seated.

I laid on the trolley and sobbed my heart out thinking our baby was gone while two or three different families argued with each other about whose fault it was their children were in hospital.

Staff and patients were coming and going, many of them staring at me and the rowing families and my DH wasn't told where I was, he came back from the toilet and I was just gone. There was a screaming teenage girl in my cubicle and he thought it was me screaming through the curtains and was sure our baby was dead.

Finally a doctor came and told me that they thought the bleeding had stopped and that I would need to come back for a scan two days later to find out if I was still pregnant. She also pointed out that at 8 weeks there was nothing they could do and if the bleeding started again it would be better for everyone if I just stayed at home to get on with it or wait for the scan if the bleeding didn't start again.

The scan gave us good news but for those two days waiting I felt terrible and was convinced the baby had died and nobody cared, and that I had lost him while taking part in some kind of side-show of entertainment for the people in the waiting room who were watching me cry and those other families argue.

I think that was the first sign of problems, our son hung on until past 20 weeks but my first scan (done at 15 weeks rather than 12 because we moved house) there were signs that something was wrong that I believe were overlooked by a scan technician who was very rude and dismissive of my concerns when she put my pregnancy dates back by over three weeks.

I don't think that anyone who may be miscarrying a baby should be left to do it in a corridor and made to feel as though they are wasting the doctors time by being there.

"but my first scan.."

Sorry, that should say second scan, although it should have been the first one/12 week one if not for the bleed and the early one at 8 weeks and the house move that delayed it.

prettyfly1 Sat 01-Oct-11 22:10:35

Happylander the others might not agree, but I think a sincere "I am so sorry for your loss" is probably the kindest thing you can say to a woman going through this. Acknoweldging that it wasnt just a foetus, that the woman has experienced a real bereavment that hurts is all most of us want at the time. What not to say is "it happens to loads of people" and "you can always try again".

I would like to see more honesty regarding the choice between having a d and c or erpc I think its called and a natural miscarriage. I was told it would be a bit painful and I would experience some blood loss. I ended up in screaming pain as the baby got stuck and having to have emergency surgery from a haemmorage. It made it all so much worse and had I known there was even a slight risk I wouldnt have made that choice. It was so bloody scary.

The one shining light in the whole process for me was afterwards. I asked for the baby back to bury and the vicar came to see us. More then anyone else he was so kind, compassionate and understanding, taking the loss seriously. Every woman should be given the chance to let go of their baby and grieve. I am not even remotely religious but having a funeral gave me a chance to acknowledge the loss of the future I had so longed for.

kat2504 Sun 02-Oct-11 08:41:14

I agree, just saying "sorry for your loss" is the kindest thing, without trying to find some optimistic side. There is no bright side at the time for the woman. Those things about how common it is and how the next pregnancy has a good chance can wait until the worst is over.

CristinadellaPizza Sun 02-Oct-11 10:03:27

I agree that 'I'm so sorry for your loss' is about the best you can say. Although if you're not 100% sure that it's a mc (as happened to me in A&E) and have no means of verifying it, I think all you can say is 'I'm so sorry, it looks like a miscarriage but you will need to have a scan to make sure'.

RowanMumsnet (MNHQ) Tue 04-Oct-11 10:52:35

Hello everyone,

Thanks again for all your comments and contributions; sorry we haven't been on more often to acknowledge them, but we’re in the final run-up to the campaign launch and we’re a bit frantic We have been reading and taking everything on board, as we hope will be apparent when we launch next week.

Some of the comments on here, and some of the feedback we've had from professional and campaigning organisations, focus around when scanning should be offered/available. The points made include:

1) Very early pregnancy scans are extremely tricky, and are often – even in the hands of trained staff – wrongly interpreted, which is no good to anyone, least of all the woman concerned.
2) When EPAUs aren't available, or aren't open, and women present to A&E, the staff there are less likely to be skilled in the use of scanning equipment in the diagnosis of miscarriage, particularly before the eighth week of pregnancy. Without further expensive training, poor scanning techniques risk making things worse (see point 1).
3) If women facing miscarriages (and their partners) were treated with greater empathy and understanding, and given clearer information about what scanning can and can't achieve in their circumstances, it might be that the need for early scanning would not be so great.

Given these points, we were wondering if we should tweak Point 2 as follows:

'Where scanning is clinically necessary, access to scanning facilities in the case of suspected miscarriage should be made 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. When women have miscarried at home and have experienced severe symptoms, they should be offered a scan to check that there are no ongoing complications, and that the miscarriage is complete. Where medical staff do not believe that a scan is clinically indicated, or that it would be unlikely to produce reliable results, this decision should be communicated to the patient with tact and understanding, and with a full explanation of the reasons.'

However, this remains your code, so we don't want to make this change without your broad agreement. As ever, we'd be extremely grateful for your thoughts.

Thanks
MNHQ x

kat2504 Tue 04-Oct-11 10:54:01

I think that sounds really good.

VenetiaLanyon Tue 04-Oct-11 11:14:22

Looks good, Rowan, but I still think that you're really missing a trick with regards to the follow-ups, and that this is incomplete i.e. why women have miscarried, and standardising what does or what doesn't need to happen next with regards to tests and treatment for different age groups.

For example, is it really necessary to have 3 miscarriages into your late 30s / early 40s before someone takes your need for answers seriously?
Or is 2 enough?

And there's so much conflicting advice as to when beginning to try again is sensible too.

Perhaps specifically don't include as part of this code, but consider these subjects as a Mumsnet code part II?

Personally I would rather have the scan option even if it were early on, as although you may not see much, you may well do and even knowing something puts your mind at rest a little. I've had miscarriages before and would definitely have appreciated the choice there. Even if there is no "clinical need" a woman's emotional and mental state is also extremely important and if she wanted a scan for her own peace then that should be granted.

I've paid for private scans as early as 5 weeks and there was something to be seen on it so I don't think it being early on in pregnancy has a great deal to do with it. They were internal scans but it made all the difference to me.

AhCheeses Tue 04-Oct-11 20:07:53

I think the amendments are appropriate.
I can accept the fact its not always in the womans best interests to be scanned in a busy A&E dept by someone who isn't the best person to do it but all it would take is some explanation.
Not to just be told 'an appointment has been made for you in X amount of days', it makes you feel like they're just not interested. Even if its not the case, even when in reality its just because thats the most appropriate course of action, it just makes you feel shit.

I do agree with Venetia too, is it always necessary for the 'rule' to be 3 miscarriages before investigation?
Could it not be based on patient age and history?
I understand the statistics of first pregnancies, the ratio of miscarriages to viable pregnancies and all that but surely that can't be applied to every woman that walks through the door?
One size just doesn't fit all, as this thread has proved.

EldonAve Tue 04-Oct-11 20:16:21

I'm happy with the code as it stands

The info I received following MMC was rubbish, luckily MN was a huge help at an awful time

ducksinarow Wed 05-Oct-11 07:44:59

I think that the amendments are good however, the "communicated to the patient with tact and understanding, and with a full explanation of the reasons.' part is the main issue I feel. Lack of tact and understanding are the problem with how most women are treated.

By putting more empasis on this, I would hope that it would get the point across for the need for more tact and understanding, my fear is that the people who need to hear this the most are the ones that might not take it on board, but instead use the code to say that "the codes says you don't need a scan" and leave it at that, and leave out the tact and understanding.

But I am glad that the emphasis is clear on the need for tact and understanding, so, I like the amendment.

As an aside, I have had many early scans and most of them have caused more stress rather than less. This led me to begin to refuse early scans on the basis that I have never had an early scan that was reassuring even with my pregnancies that went to term. I do believe that early scans are not a good thing generally, you only need to do a search on MN pregnancy threads to see that is the case. Early scans can help reassure a minority of women who are not recurrent miscarriers and who do not have a tilited uterus and who are having a normal pregnancy. Unfortunately a large number of women do not get the same reassurance and are left with more stress, which, in itself, is not good in terms of miscarriage.

Therefore, when an early scan is done the emphasis should be put on the fact that: what is seen is down to the machine and tilt of the uterus, rather than if a miscarriage is happening or not. It should be a chance for the woman to see the pregnancy and not for a prognosis for that pregnancy.

KatieMumsnet (MNHQ) Wed 05-Oct-11 09:59:34

Hi Everyone

Thanks so much for all your comments. Rowan is finessing code as we speak, so will come back and update on that later. On a more trivial note we've been going around the houses trying to get the right title for the campaign - it needs to be short and to the point, and a title that engages, makes people want to get involved- so far our better ideas include

Caring about miscarriage
Miscarriage care (campaign)
Miscarriage action

what do you think? Any budding slogan writers out there who can help us out?

bamboozled Wed 05-Oct-11 12:43:48

Can I make a really important point? I think that the work that you are doing is fantastic and will hopefully change the way that women experiencing miscarriages are treated. The code of care is excellent - but I feel that point 2 REALLY needs looking at. To have ultrasounds available 24 hours a day in A&E will cause more harm than good. An ultrasound machine is only as good as the operator that uses it. We are talking about an incredibly exact science - where a 2 mm difference can make a difference as to whether a pregnancy is viable or not, dates being imprecise can totally change what stage of development is being looked for etc, and often a scan by a well meaning untrained doctor can give a false reading. Surely it would be better to have a designated EPAU per area, county wide, that are able to provide an expert to do the scan so that women with suspected miscarriage are advised to travel there - rather than providing inadequate scans at every A&E? An incorrect scan done by an inexperienced operator for such an important matter can cause such emotional harm, let alone the medical implications. I would never let a gynaecologist on call set my broken leg - so why on earth would we be pushing for every medical professional on an A&E rotation to be expected to provide a first rate scan? Please please think about this.

BedHog Wed 05-Oct-11 13:20:53

I think 7 day availability for ultrasounds is much more important than it being available 24 hours per day. Even if the weekend appointments are rotated between several hospitals within a reasonable distance. At the moment, if a woman starts bleeding on a friday afternoon for example, she will often have to wait 3 days until monday to get a scan. Waiting overnight is acceptable, 3 days during a stressful time is not, especially when it is thought stress can affect the pregnancy, and the woman's mental health.

kat2504 Wed 05-Oct-11 13:37:18

If a woman starts on a bank holiday weekend it can be up till Tuesday! My last one was easter weekend, epu was closed from Thursday afternoon until Tuesday morning. There should be some scanning equipment on the gynae ward, or the gynaecologist on duty there should have access to the ultrasound room at weekends. It doesn't have to be 24 hours and it shouldn't be any old doctor on A&E doing the scanning, as it does need training, but I agree there should be some facility to get a scan within a day or two.

RowanMumsnet (MNHQ) Wed 05-Oct-11 13:40:11

Hi bamboozled - just quickly, did you see our post yesterday about the proposed revision to Point 2?

bamboozled Wed 05-Oct-11 14:33:37

Hi Rowan- sorry - I hadn't read that post - I read the code of care yesterday before the recent post was added - and spent last night thinking about point 2 and discussing it with a friend (prime example of the power of mumsnet!) so jumped online today to add my twopenneth worth without reading anything else!
I think it is a very important point so am really pleased that you had been reconsidering it.
I hope that this gets the attention it deserves and the code of care is taken up.
Thanks for all the work that MNHQ do on the behalf of the rest of us!
As your tag line that you were wanting - how about
'Management of miscarriage matters' - can't go wrong with a bit of alliteration.

RowanMumsnet (MNHQ) Wed 05-Oct-11 17:04:59

Thanks bamboozled, glad you like it. And thanks for the title suggestion too!

KatieMumsnet (MNHQ) Thu 06-Oct-11 12:21:52

Oh I love a bit of alliteration - always doing far too much of it and far too much putting things in threes (I'm sure there's a posh word for that). Anyhow, I'm just a bit nervous of putting Management in the title, think when it comes to NHS it might put people off. We've had a straw poll in the team, and think 'Better Miscarriage Care' just about edges it - so NancyMumsnet is knocking that into a logo as we speak. All starting to get busy, and here is the brand new spangly thread on our final code!

VenetiaLanyon Fri 07-Oct-11 09:52:59

Sorry to bang on about this, but MNHQ, please could you comment on the idea that this is but a first step in the campaign, and that standardising and improving the investigation and treatment of the causes of miscarriage (which I know you said in your OP that you would leave out this time), will be dealt with at a later date?

catmaclennan Sun 09-Oct-11 23:15:07

Sorry Mumsnet why are you doing this. The Miscarriage Association already deals with everything you have highlighted in your campaign they are recognised and respected nationally. Surely putting your weight and support behind the work they already successfully undertake would have more of an impact than you re-hashing the work they already do. It makes me really angry when organisations do not work together - are you more interested in raising your own profile or in working to support change, if it is the latter you will drop the campaign and begin working with the MA. Nowhere do I see mention of the MA.

ParadoxicalGirly Mon 10-Oct-11 12:34:07

I'd be more inclined to support this if a professional organisation, ie the Miscarriage Association, was asked to be involved with it.

Perhaps SANDS could help too. Although they are the Stillbirth and Neonatal Death Society they are very supportive of losses before 24 weeks too.

If I can say in defence of Mumsnet, I am very glad that they are doing this.

When we lost our son I was put off from seeking help from SANDS, as because their name I felt that my loss would be called 'just' a miscarriage in the eyes of the professionals when compared to a 'real' stillbirth or a neonatal loss.

Yet I felt that I wouldn't find the right help at the Miscarriage Association because my loss was after between 20 and 22 weeks and I had given birth to my son, so it felt different to what the term miscarriage meant to me at the time.

So I didn't seek help from either organisation, because I felt like I didn't belong to either group. So I had no really support from other Mums who had been through a loss or from an official organisation until our daughter died neonatally following her premature birth, when I did turn to SANDS and was made very welcome.

If I had found a forum such of Mumsnet at that time, that was keen to offer support and change some of the things that had upset me during my care I think I would have dealt with things much better than I did.

I'm glad that they are doing this, although working together with other organisations can't hurt either.

Redbear76 Wed 12-Oct-11 12:55:05

I think this is a good idea, but think it is a little sad that this does not acknowledge some of the good work already done. I have had 3 miscarriages and although some of the experience was awful, some of the medical professionals that I dealt with were amazing and helped me through very hard times. Perhaps we should look to successful (hard to actually quantify for this subject though as so subjective) models and encourage others to copy? This then serves the objective of the code whilst showing that some areas provide a really good service.

Note also that although this is hard to accept, an immediate scan may not be the answer. In my experience, the hearbeat may be there when the bleeding starts and so really it is better (although painful) to wait a few days. I think perhaps my point here is that everyones feelings in response to mc are not the same and neither are their medical needs. Point 2 sounds a little bit prescriptive to me.

This is just my opinion and I am glad that you are taking the time to recognise something which impacts many, many women. I will point people to the Miscarriage Association as well - I have found their forums and support to be very helpful.
http://www.miscarriageassociation.org.uk/phpBB3/index.php

Keep up the good work

RowanMumsnet (MNHQ) Wed 12-Oct-11 19:55:56

Hello everyone,

Could we gently point you in the direction of this thread, which is being kept up-to-date with campaign news?

KatieMumsnet has also posted on there about how we've been getting input from the Miscarriage Association and other organisations. Not every organisation has signed up to our campaign (for various reasons), but we have approached and had conversations with pretty much all of the campaigning and professional groups we could think of, and had incredibly useful feedback and advice from them.

Thanks
MNHQ

nmartin Thu 05-Jul-12 20:50:47

Hi everyone,

Just signed up to the site after doing some research into women's experiences of miscarriage. I have just recently suffered a miscarriage at 12 weeks. The way I was treated by the NHS is still too raw and painful to describe in length, but I have written to the hospital complaints department regarding my experience.
I was appalled to find so many women in a similar position and am now interested to hear more on where this campaign by mumsnet is headed at the moment. I intend to lobby my local MP, giving my own personal experience as an example of how women who are suffering miscarriage are being treated by the NHS. Would it help for me to post my letter of complaint to the hospital on here? Just wondered if anyone is interested in hearing about my experience and I would love to know if there is anything further that I can do to help support the campaign.
Thanks.

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