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

[HoratiaDrelincourt]

Very important.

My two experiences were pretty good, which says to me that there is no excuse for any trust failing to reach those standards.

[Armadale]

Thank you for doing this. I will post on the link given.

My experience has been that the differing standards between hospital trusts in miscarriage care is absolutely staggering- I have know incredibly caring, professional and competent EPU's and also the complete opposite.

[PseudoBadger]

Will do, had a terrible experience (thread on here) and a fob off from an official complaint to the chief exec.

[Fishandjam]

Will do (though mine was Aug 2011 - is that too long ago?) I had a very good experience.

[HoratiaDrelincourt]

Can't complete this. There is something wrong with the formatting. Once you've put in your details in the first few boxes you can no longer get to the "Sign and send your story" bit. Kind of crucial...

[RowanMumsnet]

@HoratiaDrelincourt

Can't complete this. There is something wrong with the formatting. Once you've put in your details in the first few boxes you can no longer get to the "Sign and send your story" bit. Kind of crucial...

Oh no! We'll have a look now. Anyone else having trouble?

[RowanMumsnet]

Hmm it seems to be working for me (desktop site on Chrome) - which device/browser/site version are you using, Horatia?

[RowanMumsnet]

OK, apologies Horatia; we've spoken to Patient Opinion and it seems this might be something to do with a technical difficulty with the way we've embedded their form. It shouldn't affect most people but unfortunately it will affect some.

Could you bear to post it again using this link please? We promise it'll work this time.

[RowanMumsnet]

@Fishandjam

Will do (though mine was Aug 2011 - is that too long ago?) I had a very good experience.

We're very happy for people to post up good experiences (and we're really pleased to hear you had one), but ideally we're looking for accounts from the last two years or so. But of course if you'd like to go ahead and post anyway, please feel free.

[RowanMumsnet]

Me again... we've altered something technical (widget height, fact fans) in the story-telling link, so nobody should have any problems now; do please let us know if you do.

[Chacha23]

I'm having some issues, the "next"/"submit" buttons appear and disappear at random.

Also, I can't seem to be able to sign my story, even though I'm entering my mumsnet email, password and tried various usernames - not sure what I'm doing wrong?

[RowanMumsnet]

@Chacha23

I'm having some issues, the "next"/"submit" buttons appear and disappear at random.

Also, I can't seem to be able to sign my story, even though I'm entering my mumsnet email, password and tried various usernames - not sure what I'm doing wrong?

Argh. So sorry Chacha23. Could you bear to try again using www.patientopinion.org.uk/youropinion?cc=mn1 instead? It should definitely work on there.

[HoratiaDrelincourt]

Will do - it only stopped working when I added too many keywords and couldn't delete them to get the buttons back.

Mine was only 13m ago (gazes adoringly at 3mo DS) so well within the window.

[Armadale]

Hello, I have now filled in on the website, I followed the link above and unfortunately when I went to send it lost all the data. I had C&P'd it into word, so didn't lose it, but I followed a link on the patient opinion site to repost it, so I don't know if that means it will not be collated with other stories of MC for this, and just listed on the website generally?

I have the login password they sent me as confirmation if you would like me to PM it, if you need to collate with other stories.

[RowanMumsnet]

Thanks so much to everyone who's shared their accounts. The tech difficulties should be well and truly sorted now, whether you post using the MN link or the www.patientopinion.org.uk/youropinion?cc=mn1 link, so please do get posting if you feel able and wiling to do it. Many apologies to anyone who had to do it twice

Some stories are already coming through; we'll post up the link soon.

Thanks
MNHQ

[Chacha23]

will try and write mine again later today - I should have copied it, silly silly me.

[MrsGiraffe12]

Done xx

[Keely19]

I had two miscarriages after my first child. My first pregnancy was normal so I didn't expect any problems next time so when I started bleeding and didn't feel normal I called my midwife who referred me to the hospital straight away. I was told it looked as though I was having a miscarriage and to go home and see how I went! I didn't know what to expect how much I should bleed or for how long, unfortunately I passed the foetus so knew I had miscarried but really didn't know what else to expect so called the hospital who said they didn't have time to speak to me I then called my gp who said it was all normal and couldn't understand why I was so upset/angry! When I got pregnant again I had changed drs & the hospital were really helpful although I did know more what to expect. Then I got pregnant again & the hospital were great lots of early check ups & scans and now I have a lovely 2 year old but def more pregnancies, can't go through that again!

[RowanMumsnet]

@Keely19

I had two miscarriages after my first child. My first pregnancy was normal so I didn't expect any problems next time so when I started bleeding and didn't feel normal I called my midwife who referred me to the hospital straight away. I was told it looked as though I was having a miscarriage and to go home and see how I went! I didn't know what to expect how much I should bleed or for how long, unfortunately I passed the foetus so knew I had miscarried but really didn't know what else to expect so called the hospital who said they didn't have time to speak to me I then called my gp who said it was all normal and couldn't understand why I was so upset/angry! When I got pregnant again I had changed drs & the hospital were really helpful although I did know more what to expect. Then I got pregnant again & the hospital were great lots of early check ups & scans and now I have a lovely 2 year old but def more pregnancies, can't go through that again!

We're sorry to hear about your experience Keely19 - the Better Miscarriage Care campaign is all about asking healthcare professionals to have empathy and respect in their dealings with women who are miscarrying. Congratulations on your two-year-old though!

[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...

[Bridget14]

I sadly m/c on the 17th of April 2013, was completely devastated!
I had a perfect normal first pregnancy so didn't think twice about having another perfect one!
But sadly that was not the case,

I remember spotting and calling and getting an early scan for that day we went in, I just knew it wasn't right, I was measuring at 5 weeks when really I should of been 10,
The scanner said "we will scan you again in two weeks but it might not work out"

I thought that was a little harsh, then I started really badly bleeding went back in dying the night, they didn't se that bothered, I didn't get a scan or anything I had bloods taken and had to wait for results before I could go home and the woman poppe her head in and said "your bloods are normal you can go" we were thinking normal for what!? Being pregnant or having a m/c was told I needed to call back in morning for scan that day or stay in over night and get it done in morning I choose to go home and call when I did there was no appts till a few days after!

I then sadly m/c in my home on the 17.04.2013 it was horrible and broke me! I went in for my scan to tell me what I already knew, she was sympathetic but they kept referring to it as a fetus it wasn't really a baby! To me it was my baby! An it hurt when they kept stating it wasn't! I was giving information on how to cope, and if she seen me before he "waiting time" she wouldn't e concerned about the pregnancy,

I am 32 weeks pregnant & from the start I have been terrified! My midwife at the start was great but now she is like get on with it get over it! I'm very upset about this as when I say my cocerns it's brushed to the side!

I'm hoping that my baby will be happy & healthy in 8 weeks time!

I feel for every single person who has suffered a m/c and after this baby I will not have anymore as I can't do the worrying again!

I feel like there should be more understanding with being pregnant after a m/c and also a better treatment for people going through one!

[oopsadaisyme]

I have had three miscarriges, all of which were horrific and I received zero care.

My first, I was 19 - I found out I was pregnant at 8 weeks, and started bleeding a week later - I went straight to the hospital, they gave me an internal scan, said baby was fine and sent me home -

I stopped bleeding, then two weeks later I was out for a friend with coffee, I started bleeding again and she took me to the hospital, who said they could not see me without a referral from my doctor (After I was only there two weeks previous)??? - we drove all the way back to my doctor who saw me as an emergency, told me I was loosing my baby, then we drove all the way back to the hospital - I had another internal scan, a doctor told me I was loosing some lining but could still see baby and heartbeat and 'this happens sometimes' - I got sent home, and miscarried on the toilet -

Went for a scan the next day, just to be told 'my cervix was clear' -

The only care I got was a cuddle from the receptionist who had seen me the day before and I collapsed on her in tears..

The next time, I was 25, and just got told over the phone by doctor I was miscarrying, and just 'sit on the toilet and hopefully it will 'all' come out...

Number three pretty much the same as number two -

[oopsadaisyme]

I'd just like to add, no after care was offered, no help, nothing - I suffered terribly afterwards with depression because of my miscarriages - terribly - nightmares, guilt, everything -

Aftercare of people who have suffered a miscarriage I believe is paramount, its a bereavement - but after receiving no care whatsoever during a miscarriage, I did and do not expect anyone to care afterwards -

Thank you mumsnet for bringing this up x