Mumsnet campaign for Better Miscarriage Care: the next steps. Can you help?

(151 Posts)
RowanMumsnet (MNHQ) Thu 06-Oct-11 11:31:05

Hello,

As most of you will hopefully have seen from this thread, on Monday, October 10 we're going to be kicking off the Mumsnet miscarriage campaign. With your sterling insight and input, we've put together a five-point code of care (see below), and from now on the focus is going to be on getting it into the inboxes of ministers, MPs, local health authorities and trusts, and anyone else who can help to implement it.

From Monday you'll be seeing a lot of activity about this across Mumsnet and other social networks, and we're going to need as much help as you can give us in making a noise about it. We'll use this thread to keep you updated about what we're doing - and we'd hugely appreciate it if you could use it to keep us updated with what you're doing (campaign-related, that is; we don't need to know about Tuesday's swimming lesson wink). Do also please use it for ideas on what we (and other MNers) can do to keep the bandwagon rolling.

Thanks thanks
MNHQ x

The Mumsnet Miscarriage Code of Care

1. Supportive staff
GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication and listening skills (including things NOT to say to women who are miscarrying), 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 in cases where scanning is clinically indicated. 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. 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.

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. 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 the available options explained to them. 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, HCPs should discuss with the parents what they wish to happen to the remains of the baby (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. HCPs should be mindful of a woman's previous miscarriage/s when assessing her needs during subsequent pregnancies, acknowledging any extra anxieties and dealing with them empathetically.

Although this code is based mostly on the experience of Mumsnetters who have miscarried in-utero pregnancies pre-24 weeks, we think many of its points apply equally to women experiencing stillbirths and ectopic pregnancies.

KatieMumsnet (MNHQ) Mon 10-Oct-11 14:33:01

Hi lottiegb Thanks for all your comments. Really good to get, and helpful to hear your experience. We're really aware that the NHS is far from flush with cash at the moment and spent a long time looking at the points in the code and talking to experts about what they could mean.

Many of the points in the code are covered by existing guidelines, for example, the Dept of Health 'Health Building Note' states that women undergoing miscarriage or suspected miscarriage should be separated from women having routine AN and PN care, and women terminating an unwanted pregnancy.

We're really not calling for new wards for miscarrying mums, but for hospitals to put sensitivity and thought into how women are treated. Around scanning, this does mean it's better when early pregnancy units are away from routine scanning (as many hospitals do) and when patients are treated on wards, that hospitals consider using surgery or obstetric wards rather than post natal wards.

But as you (and CarrieMumsnet on Jermey Vine said) often if there is an explanation and preparation about where you're likely to be scanned this can help a great deal.

You're right, it's one of the areas the media are focussing on - it's not one we've pushed, above the others (our press release led with the pain relief) but we're obviously trying to get as much publicity as possible for the campaign.

Hope that helps x

Boo61 Mon 10-Oct-11 14:34:39

I suffered a stillbirth in 1984 at 36 weeks.I was told on Saturday 15th dec, that my baby had died,very bluntly, was left on my own & each time a nurse/midwife came in they said nothing. I ended up staying on the delivery suite listening to babies until I eventually gave birth to Lucy on Wednesday 19th. I was then shipped off home to be told to have a nice pleasant Christmas with the little girl I had! Lucy was buried the day after boxing day, I have 1 photo & nothing but bad memories of how I was treated in that awful hospital. Much later myself & family moved north & again a stillbirth only this time it was my eldest daughter who went through this horrendous time. How times had changed! I could not praise enough how much the staff at the RVI Newcastle helped the whole family. We had a fantastic midwife who made the point of staying as much as she could. The stillbirth happened again at 36 weeks & was extremely difficult to cope with. My daughter benefited from the knowledge that I REALLY did understand what she was going through. She had to wait at home while still pregnant knowing Harry had died for a couple of days, then we were given a huge lovely room away from babies but still on delivery. How times change, it is common sense that if a mother loses her baby by miscarriage,stillbirth, however, you should show a lot of love & kindness & THINK how she is really feeling! Even after I had to go to ante-natal appt to receive post-mortem results as this was the only time I could be seen. To sit for 1 1/2 hours with pregnant women & babies was stabbing me with a knife in my heart! My daughter however saw her fabulous consultant in an office well away from ante-natal area. It is common sense & simple measures that could help through this life- changing time. The pain stays forever but eases it never goes away!

RiffRaffeta Mon 10-Oct-11 14:37:12

Oh Boo

x

KatieMumsnet (MNHQ) Mon 10-Oct-11 14:38:57

And big thanks to Andrew Gwynne MP and Catherine McKinnell MP who've tweeted their support.

Just trying to track down if our EDM in Parliament has been tabled yet, but in the mean time you can find out if your MP is on twitter here and tweet them to get them to show their support for our campaign for Better Miscarriage Care.

Do post and let us know their response

KatieMumsnet (MNHQ) Mon 10-Oct-11 14:40:58

Many apologies and Louise Mensch MP

Mwahahahahahahahouseface Mon 10-Oct-11 14:48:46

When we lost our triplets, all boys at 16+5 weeks, we had no support at all from the hospital. The radiographer told us "There are no heartbeats in any of them, you'll need an operation to take them out" sad

Can you imagine hearing those words when just 8 short days earlier, they were all fine with 'good strong heartbeats, all a good size' etc.....

So I had the ERPC, a God awful experience, and was then put onto the maternity ward. Albeit in my own room, but I could still hear the newborns crying and being soothed by their mothers.

I could see them, all snuggled and safe, being fed, held, loved.

Heartbreaking does not come close.

To make matters worse, a few weeks after we lost the boys, still looking heavily pregnant and feeling it, I got a routine appointment through for my next Midwife appointment at the same hospital.

Clerical errors like that are unforgivable in my book. Absolutely no excuse for that to happen. I was so upset. 'Sorry' can not make up for that sort of thing, not at all.

I just hope that this campaign with stop the shocking treatment that some women and families experience, because it's not just the women who are carrying the baby that miscarriage touches.

I believe that more support should be offered to partners and other children too. Or at least to the woman who has experienced a loss/es, maybe she should be given the tools to help them tell siblings and grandparents what has happened and why?

We all know that young children struggle to understand things, never mind us, and more often that not, all we'll get is 'why'? sad

deeliciousdee Mon 10-Oct-11 15:34:47

Hi everyone, I heard the talk on radio 2 today and straight away I logged on and signed up to mumsnet as I fully agree and support the discussion of miscarriages. I am 28 and have been pregnant 4 times but sadly miscarried each time as I've never got past 6weeks in pregnancy. My first miscarriage was in 2004 and was my worst one. Although it was straight forward, it was very painful and I went straight to hospital only to be told that my water sample they had taken had come back saying that I was not pregnant and was discharged but I knew what had happened and the day after I went to see my gp who examined me and sent me straight back to the hospital after confirming a miscarriage to have a internal to make sure it had all come away. My second was then in 2006 and again was a bad experience as the midwife who had told me that again my pregnancy was going to result in a miscarriage told me I had 2 options. The first being, miscarry naturally or stay in hospital for a d&c, I chose to miscarry naturally as I don't like hospitals and didn't want to stay in. After telling the midwife my decision to go home and await to miscarry she told me to go home and have a few glasses of wine as that would sort me out, that right there was unprofessional and very disturbing to hear after the news I had just been told. I went a week waiting but my mum told me it would be for the best if I took the d&c and with that I went back for the op which was again a very unpleasant experience especially as it was my first ever operation and understandably very scary. The bedside manner was disgusting as i got left in a chair next to my bed for almost 12 hours crying to the point my mum had to leave work and be at my side as I wanted to discharge myself because it felt like nobody cared. My third and fourth was last year and again wasn't pleasant as when I went to hospital t seek help, I got placed in a waiting room with people that were sat waiting for treatment for things like sprained ankles and toothache! I've found it hard dealing with my losses but the worst part I experienced was all those times id been placed in waiting rooms with people who either had sprained ankles and toothache and especially the epau waiting room that seemed to be swarmed with excited couples with big glowing expressions on their faces because for the many women out there such as me, I found that the hardest and most daunting part of it all especially to the point where it gets too much, you get shipped of into a grieving room in front of those people! How undignified is that after all the heartache and anger and upset. PLEASE give all us unfortunate women, and even young girls some respect and let us keep just a little bit of dignity when it comes to sad times like these and treat us the way we should be treated!

Whizzz Mon 10-Oct-11 16:56:15

Well I haven't been on MN for a very long while, but have just seen the campaign & wanted to add my support.
I miscarried at around 7 weeks a good few years back & was treated with very little understanding at my local hospital. I discharged myself as I found it heartbreaking to be expected to stay overnight on a ward full of expectant & new mums.
Best of luck MN & I really hope that this can change things for the better.

Mwahahahahahahahouseface Mon 10-Oct-11 17:18:16

Deelicious sad xx

Secondtimelucky Mon 10-Oct-11 17:46:41

I've emailed my MP. Not that I hold out much hope. The only people he answers are developers wanting help with planning (allegedly, IMO, etc, etc).

I was 'lucky' in that my miscarriage was early, and I got pregnant again very fast. So I look at my daughter and know she wouldn't be here but for that. But my treatment by the hospital was unforgivable. So much so that I made an official complaint and organised my antenatal care and (home)birth to try and avoid setting foot in there ever again.

I was not told what was happening in the EPU. I waited for hours and bumped into a friend there for a 12 week scan (the EPU is separate, though includes fertility treatment, etc, but you walk through it to the normal scanning rooms hmm). When I was finally scanned, they said they would scan me and then talk to me in another room about the results. But the radiographer scanned me, and then, when she had finished, left the screen turned into the room and walked out, so I could clearly see for myself that there was nothing there sad. When I did see the midwife/nurse, she told me that there was "no evidence of a pregnancy", as if I'd been making it up that I was 8 weeks pregnant. I yelled that I wanted to go home and stormed out in floods of tears.

God awful experience. Still, it convinced DH on the idea of homebirth grin. He too was adamant he didn't want to be at the hospital again.

deeliciousdee Mon 10-Oct-11 18:27:43

Mwahahahahahahahouseface, thank u for the sad and the xx, im sorry to read that u have lost triplets. These stories are very sad to read and it breaks my heart to read them as i know exactly how it feels to have to go through it. I saw a consultant at the begining of this year and basically got discharged after being told that my miscarriages are my fault as im a smoker! I know what i believe and i know its not my fault as ive never got past 6wks and to be honest its put me off wanting to try again cos as u will understand urself, its hard to stay n think positive even after u have lost 1, let alone 4. thinking of u n thank u again. please feel free to stay in touch as its nice to be able to talk to people who understands. xxxx

lollopybear Mon 10-Oct-11 18:36:11

Message withdrawn at poster's request.

LTLTLT Mon 10-Oct-11 18:51:22

Am in full support of the campaign. Really hope it makes a difference.

CristinadellaPizza Mon 10-Oct-11 18:54:58

I want to thank everyone who has shared their stories so far and those who are still to come.

I am crying here because so much of what you write resonates with me and the pain shines through every single one of them.

Thank you MN for this campaign. I will get campaigning this evening. I really, really want this to be a success. We need it to be.

Emmac50 Mon 10-Oct-11 19:36:23

I think it's absolutely amazing how such a common thing that happens can be treated so badly.

We had a miscarriage last month and The whole process up to leaving after the erpc was carried out so professional. Unfortunately when I went to doctors they weren't so and basically told me I wasting their time. I wanted answers to my questions plus discuss contraception. I thought that was the job of the gp oh well. Not once throughout the process was I offered counselling just that I had to talk to my husband. Which I was doing of course but it would have been good to get it dealt with properly.

I'm really glad you are doing this and it's such a shame that there's so many of us in the same situation. I hope things change and I certainly hope none of us are in this situation again

Xx

bamboozled Mon 10-Oct-11 20:38:13

What a fantastic amount of press this has received -sensible reporting and great quotes to back up your points from very senior health care professionals- you have really got it right - Well done Mumsnet! Are you all grinning at MNHQ?

Mwahahahahahahahouseface Mon 10-Oct-11 20:38:51

sad so very hard to read these stories but every one is another layer of hope that those in control of what we as women have to endure, will sit up and listen and build the wall of strength for better treatment and conditions.

BTW - I'm usually mouseface, this is my Hallowe'en name. smile

Dee - what you were told is unforgivable. No consultant worth their salt should ever tell his/her patient that smoking is the sole cause of miscarrying a baby, never mind four. You should have been offered investigations and tests at that point, not being told that. Yes, we all know that smoking is bad for you and baby but to throw it in your face like that is so unprofessional.

I'm so sorry that you had to go through that. xx

RowanMumsnet (MNHQ) Mon 10-Oct-11 21:36:52

Thanks bamboozled - we are shattered cautiously pleased smile - long way to go yet though!

Thanks so much for all the input, and for sharing your stories on here. I had a read of some of the bloggers' posts earlier on and it was all a bit gobsmacking.

MNHQ x

LynnCSchreiber Mon 10-Oct-11 21:41:56

If anyone is unsure about this campaign, then you only have to read some of the posts on this thread to realise that it is a good thing.

So sorry for the losses of the MNetters who have posted here today.

justaboutstillhere Mon 10-Oct-11 21:46:28

It's such an important campaign. So glad it is happening.

I find myself unable to write about my experiences, to my astonishment! Will try, but just to say - thank you for what you are doing.

buffybo Mon 10-Oct-11 21:56:06

I went through hell in April this year while having a Misscarriage, I even complained to the PALS at the hospital and they gave no help just saying that everything was done as it should have been done.
With this in mind when I have my next child I will be attending a differant hospital (further away)

DrSophie Mon 10-Oct-11 22:56:42

As a doctor myself, having worked in the field of obstetrics and gynaecology, I would like to offer my support to your campaign. I think it paramount that women who are unfortunate enough to miscarry, receive prompt, appropriate and sensitive care. I was however disappointed to hear your representative on the Jeremy Vine show on Radio 2 today, voice her opinion on where this care should be carried out. It is neither appropriate nor safe for this care to be administered on a general medical ward as she suggested. It is not ideal for these woman to be admitted to a post natal ward with mums and babies, but this ensures the correct level of care can be provided by specialist doctors and nurses, and in the case of emergency, care can be delivered at the earliest opportunity. This could not be provided on a general medical ward by staff not trained in such areas.

LynnCSchreiber Tue 11-Oct-11 07:33:05

DrSophie
That is interesting, but I don't quite understand why that should be the case. As far as I know, there are some hospitals in UK who do not treat women with miscarriages on maternity wards - certainly when I had my miscarriages in Germany/Switzerland I was on a regular surgical ward.

What is so specialist about miscarriage care that a surgical ward team would not be able to do?

Not being arsey, just trying to understand your statement.

DrSophie Tue 11-Oct-11 08:23:20

I absolutely agree, care on a general surgical ward my well be appropriate and this is something that should be considered. It's interesting to hear that this is what happens in other European countries. A general medical ward however, where patients are suffering from heart attacks, pneumonia etc is not safe though, as staff in this field are not trained in these areas. Perhaps this is a misunderstanding, in which case, ignore my rant, but I felt it should be addressed! Again, I thoroughly support this campaign.

LynnCSchreiber Tue 11-Oct-11 08:40:53

Ah, I see. I was not making the distinction between a surgical and a medical ward - perhaps these are terms that some members of the public are not aware of the difference?

Yes, I can see that a medical ward would be the wrong place. Thanks for clarifying.

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