Mumsnet Miscarriage Code of Care campaign: Let your local healthcare trust hear your experience

[RowanMumsnet]

Hello

As lots of you will know, three years ago we re-launched our Miscarriage Code of Care campaign, which grew out of Mumsnet posters' experiences and concerns about the care some women receive when undergoing treatment for a miscarriage. And we know that there are still lots of you who are having tough times, and receiving care (whether in or out of hospital) that is less than ideal.

So to help us to plan the next phase of activity on the campaign, we're asking MNers to share their stories of what how they've been treated during their recent (within the last two years or so) experiences of miscarriage.

When we carried out a Freedom of Information exercise in 2012, lots of hospital trusts seemed to be saying that they had implemented many of the terms of our Code of Care - but some recent threads on MN indicate that lots of you are still experiencing poor treatment and care. And where this goes against the stated policies of hospital trusts, we think the management of the trust should be held to account.

So we've decided to trial the idea of working with the website Patient Opinion, an independent health service feedback site which aims to 'pass your stories on to the right people to make a difference'. You can see more information about what Patient Opinion does, and how it works with people's information, here.

We're asking Mumsnetters - where they are comfortable doing so - to post accounts of their experiences, good and bad, using this link. Obviously we realise that this is a very sensitive area, and lots of you will have anonymity concerns, so read on to see how it all works.

If you submit your story, it will be published on a dedicated Mumsnet page on Patient Opinion. Whenever a hospital trust responds to one of the points our users have made, that will be flagged up as well. Accounts of miscarriage-related experiences from other Patient Opinion users will also be shown on this page.

You can choose an anonymous username on Patient Opinion, so nobody will be able to link your account on there to your account on Mumsnet.

Being able to track what sorts of issues people are flagging will hopefully be a powerful tool for us at MNHQ, enabling us to see what sorts of problems are still occurring, and how responses from individual trusts measure up against their Freedom of Information responses. The information will also be really useful to us in deciding where best to concentrate the next phase of the campaign.

So for those of you who feel able to help, do please get posting your experiences. Once we have some published stories (and, hopefully, constructive responses from the trusts) to share with you all, we'll come back with a link to the page where they can be seen.

Thanks - as ever, do please let us know what you think.

MNHQ

[Heatherbell1978]

I had a miscarriage in November 2013 at 6 weeks. I went to A&E initially as it was a Sunday, I was bleeding and I didn't know what to do. I got seen fairly quickly but when they called the gynae ward, they were too busy to see me and I was just sent home with the number for the EPU. Had the most awful night and then called them first thing. They didn't seem too concerned and I had to beg for an appointment that day as I was due to fly to London with work that same day. Once I was there my experience was good but it was the getting there that wasn't ideal. I was scared, it was my first pregnancy and I felt like I was fobbed off a bit to start with.

[becstar77]

I lost my son at 21 weeks in October last year. The initial process, although harrowing, was made bearable by some very kind hospital staff.

Afterwards, you have nothing. You are left totally isolated and totally clueless about what to do, and how to get through it. Everything is left up to you, at one of the very weakest and helpless times of your life. Contacting the relevant charities is only signposted by the charities themselves, who provide all the things you need in the hospital when you are lost and hopeless in the midst of your nightmare. I'm still suffering deeply now, and am only coping because I'm paying through the nose for some top psychiatric help. I'd be in depression without that, so I don't know how the majority get through it.

[lettysmith21]

I was ill for 5 weeks. My husband tooj me to my gp many times and told him there was nothing wrong with me even though I was in pain and bleeding heavily. I was having an ectopic. This resulted in me collapsing and my husband finding me unconsious. I was rushed to hospital and my husband was told I was going to die. I had emergency surgery and releases a week later witha midwife visiting me once as the only after care. I felt like no one cared that this was a baby we had waited 6 years for.

[Dildals]

What about doing something similar for parents experiencing a stillbirth?

[Chacha23]

I reposted my story, worked well this time.

like other in this thread I had an "ok" time with the miscarriage itself (hah), it's really the aftercare I found lacking. I felt so abandoned, with no idea how to deal with the grief.

[GossamerHailfilter]

I have had 2 M/C.

The first was hard but was dealt with really nicely by the EPU. I opted for a D+C and was looked after on a general gynae ward by a heavily pregnant nurse which really upset me. I know it wasn't her fault but it was just so raw.

However the upset was totally eclipsed by the second experience. In our city we have 2 hospitals, I was receiving my car at one and knew I was having a m/c. I was in so much pain that I ended up going to A+E at the other. I was addmitted on the Thursday morning and told that they needed to wait for my notes to be sent over from the other hospital (2 miles down the road). I waiting nil by mouth for 36 hours. I had to have a drip as I was so dehydrated which then blew so my arm swelled up but they wouldn't remove it. The worst thing was that for some reason I couldn't pass everything, a junior doctor examine me and tried to pull out something she thought she could see. I screamed in pain so much that the old lady next to me started shouting. I went down to surgery at 10pm and left as soon as I could in the morning. It was a horrid experience.

Luckily I have had 2 lovely DC's since then and had great care with lots of early scans and reassurance.

[GossamerHailfilter]

I have to agree that aftercare was lacking too. I was given a Miscarriage Association leaflet at EPU the first time, the second time nothing at all.

[PalaceGirl]

I miscarried last April and was devastated, however the care I received from my local hospital and doctor was surprisingly supportive. I'm now pregnant again and looking positively forward to a summer baby.

[stepmumgem]

I don't feel like I had a very good experience... had a miscarriage with my first pregnancy. At 6 weeks I had suspected ectopic pregnancy so was admitted to hospital to find ruptured cysts on my ovaries. At the scans baby was very small but they didn't seem concerned and brushed off any questions I had then and at further appts. After a car crash and telling professionals from that moment on that something wasn't right and I needed them to check (this was not an option) we finally got to the 12 week scan date. It was confirmed here that I had a 'missed miscarriage' at around 9 weeks (same week as the car crash - coincidence possibly but can't help but think if only things had been checked).
When I was taken into the hospital for the op to remove the baby they took me down to the Labour suite (where I could hear women having babies) and did the procedure. They then put me on a side room in the ward where everyone had their newborn babies. To me this is absolutely ridiculous because you are trying to grieve and get through the process yourself and surrounded by all these women who have what you couldn't. I was then discharged a few hours after as I couldn't handle being there and was handed a leaflet about miscarriage.
The treatment during my stay I would not describe as warm or caring to be honest and I felt as if I was a burden to the staff just being there.
Since then I have found out I am pregnant and the miscarriage has not been mentioned although it still really hurts. I've tried bringing up how I feel and what I'm scared about but again brushed off. Every time I feel a pain or go to the toilet I expect it to be happening again and when I don't feel this baby move for an hour or so I start panicking that again my baby will be gone and I don't even know. I wish there had been more support offered at the time because I think my emotional recovery would have been much easier.

[momomomomo]

My experience was of a 'missed miscarriage'. I went in for a 12 week scan full of hope and excitement only to be told the baby had died at 7 weeks, there were no signs. I was taken into a private room to be told my options. The hospital were v kind and very sympathetic. When I later phoned from home to say I was miscarrying they advised me, if possible to wrap myself up in a blanket, take some painkillers and try and get through it, but that I could come in if I needed and they were always on the phone. I cried all the way through the EPRC experience, they were lovely.
The part that I struggled with was the inability or unwillingness of my female peers to talk about their experiences. I needed to feel that I was not alone.

[BunnyTamer]

Just typed it all out and it didn't submit, back to the first page without anything I've filled in. Will have to try again another time as I can't face typing it all out again.

[Chacha23]

Oh my god stepmumgen, I cannot believe they had you stay in the labour ward for the ERPC. That is just cruel. It makes me so angry on your behalf.

--
Since then I have found out I am pregnant and the miscarriage has not been mentioned although it still really hurts. I've tried bringing up how I feel and what I'm scared about but again brushed off. Every time I feel a pain or go to the toilet I expect it to be happening again and when I don't feel this baby move for an hour or so I start panicking that again my baby will be gone and I don't even know. I wish there had been more support offered at the time because I think my emotional recovery would have been much easier.
--

I could have written the exact same thing

[andrearobinson1986]

After 4 normal pregnancys with health babies as the out come I found out I was pregnant with baby number 5 when my youngest was 8 months. I was only 3 weeks when I found out. 2 weeks after finding out I started spotting. Went to epu and had a scan but couldn't see baby as wad to early on. Sent home still bleeding for 2 weeks. After 2 weeks 8 was scanned and told everything was fine just a bit snug. Seen my little baby's flickering heart. Sent home and told to ring my gp if I carried on bleeding. Went to my gp as advised 3 weeks later and told I had an errosion on my cervix and could possibly bleed till term. 1 week later I started loosing clots (sorry for tmi) so back I went to ecu. To be told things didn't look optimistic. All bloods come back "normal" to return in 48 hours for scan. I was Ment to be 10 weeks 5 days but my pregnancy measured 6 mm and told to go home "to let nature run its cause" decided I couldn't so asked to be booked in for surgery the following week. The whole experience from sat to finish was the biggest rollercoaster of my life. One ill never forget :(

[RowanMumsnet]

@Armadale

Hi Rowan, did you see my enquiry upthread? I'm really keen for my experiences to be counted as I entered them on patient opinion just for this appeal, and am not sure now if they will be...

Sorry we missed this Armadale. Your story should be in the mix anyway hopefully, but do PM me with your Patient Opinion log-in details if you like and we'll check with the team there to make sure.

[RowanMumsnet]

@Dildals

What about doing something similar for parents experiencing a stillbirth?

Thanks for the suggestion Dildals. Do please use the same process for posting on Patient Opinion, but using the appropriate tags for your experience - we'll see if we can look at those stories at the same time and pick out the common themes.

[RowanMumsnet]

Thank you to everyone who has shared their story here. If your experience of miscarriage was within the last two years or so, please do post it up on the Patient Opinion site as well; it will help us to pick out any trends, and it should also (hopefully) mean that someone from the relevant hospital trust will read your account.

We're really sorry the posting process didn't work, BunnyTamer - please let us know if you have the same problem again.

[sanchita]

I had a miscarriage 4 months ago - first time i have been pregnant and i was so overjoyed as we had been trying 10 months and only just got married. My GP was very good and understanding but the care i received during and after was horrendous. In particular the A&E experience - waited over 3 hours and nobody gave me any pain relief or any kind of support as the experience became worse the longer i was at hospital. No adequate advice from the moment we were told it was a 'failing pregnancy'. I think more women who can talk about the experience should do - in particular to their friends as i never knew miscarriage was a long process - i just thought it was a one off event. I hope this campaign starts to gain momentum again as there is still so much that needs to be done to help woman who feel so scared and vulnerable.

[Daisy362]

I was treated appallingly. I had to wait in a&e while bleeding heavily for hours. When I was finally called in they asked me to take a pregnancy test and rather casually said it was negative. They didnt seem to realise how important being told that I had definitely miscarried was to me. I said I had never been in hospital before this so it was a weird experience and the nurse informed me that 'that's what happens when you decide to have children'. I was also told that I would be discharged shortly as I was 'not ill'. Overall I felt there was a massive lack of sensitivity and a lack of awareness of the devastation miscarriage causes. I was offered no emotional support and left to deal with everything alone

[Chacha23]

Also totally agree that we should talk about MC more. When I got pregnant I knew (abstractly) that miscarriages were relatively common, but I didn't know anyone who had ever MCed, or so I thought anyway. So it seemed like something that doesn't really happen to normal people, and I kept wondering why it had happened to ME.

But then I slowly started finding out that a lot of people I knew, even in my family, had had miscarriages before. They had just never mentioned it. Even my own mum!!

[squizita]

I'm a recurrent miscarrier and have sent my story.

One thing that I've noticed from MN is a lot of women - and GPs are confused about what is a 'chemical pregnancy' and what is an early loss. They'll blithely dismiss a miscarriage as a 'chemical' if there's not a large foetus. Like, they think you can have a 'chemical pregnancy' at 6 or 7 weeks, so don't get aftercare and/or advise women to go through it repeatedly because it's not recurrent miscarriage it's 'oh so common chemical pregnancy'.

Ironic and dangerous - considering my 7 week loss resulted in 5 months of treatment for retained, possible partial molar materials and a cancer scare.

Not to mention, many recurrent early miscarriers have underlying health causes with their thyroid, blood or lupus. And the losses are tragic but also a valuable signals to clinics of other conditions.

Also, it's a slap in the face for a woman mourning her loss.

If a sac has grown, even a small one, it's not a chemical pregnancy. If you're on week 5, it's definitely not. There are reasons both emotional and clinical why this needs to be both GPs and women's minds!

[squizita]

To clarify "They'll blithely dismiss a miscarriage as a 'chemical' if there's not a large foetus." not the unfortunately woman MCing, the GP or a poster on MN repeating what hers told her.

[RowanMumsnet]

Hello

Just wanted to say a big thank you to everyone who's posted their experiences up so far: do please continue to do so if you haven't yet.

You can see a record of recent accounts of miscarriage experiences on Patient Opinion here, and as you'll see, there are responses from members of staff on some of them.

We'll be reading through all the accounts and seeing if we can spot any overall trends that will help us to think about the next phase of the miscarriage care campaign.

Thanks again
MNHQ

[RandomInternetStranger]

My first experience was terrible. It was my first mc and I didn't know what to do, if I needed to do anything, all I knew was I'm rhesus negative and XH was positive and that I could develop antibodies to rhesus which I'd need an anti d jab for. So I went to A&E not knowing if it was an emergency or not. I was obviously upset at losing the baby and scared as it had never happened before and I didn't know how serious the rhesus thing was. The doctor who treated me had a student with him which was not great at such a sensitive time and he treated me like crap, like a hysterical, over reactive, stupid little girl. He even said "don't be silly, you were barely pregnant if it was only 7 weeks and it's all gone now, I can't find anything, are you sure you were even pregnant?" I was devastated. I didn't bother going to the GP or hospital for the next 3 mcs after that as the last thing I needed was that attitude again. It still upsets me now to think of it and I wish I'd said something at the time.

[Lifeasafish]

I miscarried Aug 13, first pregnancy after nearly 3 years of infertility investigations and a round of IVF.

My 6 week scan at the IVF clinic showed I would miscarry and I was provided with a letter to take to A&E so they could refer me to the EPU to confirm that the pregnancy wasn't ectopic.

A few hours after discovering my longed for baby wasn't to be, my local A&E did not act upon the advice from the IVF clinic and instead I was informed by a gynae doctor in A&E that I had never been pregnant and I should go home and wait for my period.

Two days I waited at home for the MC to begin. I was not given any advice or options on how my MC could be managed.

9 months later I am still waiting for an explanation of why the clinic's advice had been ignored, what the procedure was for my presentation and why I had been treated so callously while overtly distressed.

My treatment hindered my mental and emotional recovery and that MC is still more painful than my second (IVF) miscarriage a few months later as my treatment was fine second time around and I was able to choose not to MC naturally.

I guess I should chase my complaint again now...