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Have you had a miscarriage since September 2011? Please help with the next stage of our Better Miscarriage Care campaign. SURVEY NOW CLOSED

(61 Posts)

MNHQ have commented on this thread. Read here.

AnnMumsnet (MNHQ) Thu 24-Apr-14 12:33:28

As you may know, Mumsnet has a long-running Miscarriage Care Campaign centred around our five-point Code of Care, which outlines how MNers think miscarrying women should be looked after. In September 2011 we carried out a big survey on the topic, and asked hospitals and healthcare providers to implement the Code of Care - something lots of them said they were adhering to when we did a Freedom of Information exercise in 2012.

So now we want to know what, if anything, has changed since our last survey. Are hospitals living up to our Code of Care, and to their own stated policies?

For that reason, in this survey we're asking for responses from women who have miscarried since our last survey (in September 2011).

If you have a friend who would also be eligible please feel free to pass the link to the survey on to them.

Obviously this is a potentially sensitive subject and we don't want to upset any of you, but we know many of you do feel it is important to campaign to improve services (where improvements are needed), so please do take a couple of minutes to complete the survey if you can do so without causing yourself great upset.

Everyone who completes this survey will not only have our grateful thanks but also - as a small token of appreciation - be entered into a prize draw to win a £50 voucher for the store of your choice.

Here's the link: https://www.surveymonkey.com/s/JM2FSFC
Many thanks
MNHQ

TinyTear Thu 24-Apr-14 13:33:43

Thanks done. Referred to my latest one, but added info on comments about also a previous one... as they were both fairly close together

Armadale Thu 24-Apr-14 18:58:35

I have just completed. Once again thank you for continuing this campaign, it is really needed.

CountessOfRule Thu 24-Apr-14 20:05:17

Done.

AnnMumsnet (MNHQ) Thu 24-Apr-14 20:52:19

thanks

xalyssx Thu 24-Apr-14 21:57:06

Done

jaffajiffy Thu 24-Apr-14 22:43:21

Thanks for keeping on this. It's so important. I haven't filled in the survey as I abandoned the nhs after my first miscarriage in 2010 and had subsequent miscarriages while under private care. I'm not sure you're looking for answers about private care - ?
Thanks again though.

PinaColadas Fri 25-Apr-14 12:18:15

Felt quite satisfying to fill in this survey after I had such awful treatment following my MC (was sent home from scan told to come back in a week after found baby measuring 5 weeks when I knew I was 12 with no preparation for natrual MC which happened 2 days later, then was left to bleed for 12 weeks until they finally gave in and gave me the scan I wanted, found retained profucts finally offered ERPC. Lots of other failures)
Keep up the good work.

StampyIsMyBoyfriend Sat 26-Apr-14 09:33:33

I had two, but previous to 2011 so can't complete survey. Just wanted to say thanks for this! I had a mixed bag with the care I received, the EPU staff were mostly wonderful, it was the 'normal' staff who were sadly lacking. I'm still affected by it now. Discovering at the 12 week scan that your baby has died, but getting grief from the sonographer because my bladder isn't full enough, then being taken through a crowded waiting room and left on our own, I felt so small, so sad and so scared.

DinoSnores Sat 26-Apr-14 20:25:41

I had excellent, really flawless care when I lost a baby at 18 weeks two years ago.

The question about how long you had to wait for a scan was difficult to answer.

For me, and plenty others, I didn't have a scan because I thought I was having a miscarriage so didn't wait for the scan, as it were. In my case, I was having weekly viability scans as it was clear that my baby was going to die at some point before term, but some women will have had their miscarriage diagnosed on a routine scan. It might be good to adjust the survey to reflect that.

Appervine Sat 26-Apr-14 20:59:43

I had all my miscarriages before 2011 so can't complete the survey but I wanted to say how pleased I am that you are continuing this campaign. Thank you.

BornOfFrustration Sun 27-Apr-14 18:49:03

Just filled it in, thanks for doing this.

springbabydays Sun 27-Apr-14 20:25:05

Done. Ironically the care I received during my miscarriage was better than that received during the birth of my baby. There's clearly work to be done in that area too!

RowanMumsnet (MNHQ) Mon 28-Apr-14 10:31:49

Thanks to everyone who's completed it, and thanks also to those who couldn't complete it but have added comments here.

DinoSnores Thank you for pointing that out. If anyone else finds the scan question unhelpful/inapplicable please do use the comments box to explain so that we can adjust the data where necessary.

jaffajiffy The survey is really about NHS care, but feel free to let us know (on the thread or via contactus@mumsnet.com) if there's anything you think we should know about the private care you received.

DinoSnores Mon 28-Apr-14 13:52:19

Thanks, Rowan. I explained that in the comments box so thanks for adjusting my answer when I put '0-4 hours wait'.

rumbleinthrjungle Mon 28-Apr-14 20:12:37

My last was shortly before Sept '11 but good this is happening. I was so lucky, the hospital couldn't have handled it better or been kinder and I was horrified to read about other experiences of women in their hospitals. My GP on the other hand..... VERY Major training need.

DiscoDancer Mon 28-Apr-14 23:04:16

Marking place to complete survey latersad

MrsJohnDeere Tue 29-Apr-14 09:19:16

Done.

My ERPC was carried out privately so many of the questions didn't really apply. I had to have it done privately because of the incompetence and errors of my local NHS hospital, so thought I'd fill it out to make that point!

ipswichwitch Wed 30-Apr-14 08:15:29

Done. Even though the medical care I received was pretty good, it was the emotional support that was lacking. Sadly not just from the professionals - certain friends, family and work colleagues didn't exactly cover themselves in glory during such an awful time. It's not just the care we receive by the medical profession that needs improvement, but attitudes in general.

TallGiraffe Wed 30-Apr-14 19:42:15

Done, but then I forgot to add this point at the time. Many women (me included) continue to suffer from morning sickness during and after their miscarriage. For me, this was one of the hardest things to cope with, that I was alternating between throwing up and pouring blood out down the toilet. I was hospitalised for my miscarriage and when I mentioned this to the nursing staff, I was told just to carry on as when I was pregnant eating little and often. There are perfectly good anti-emetics available that I could have been prescribed as I was no longer pregnant.

Done. It was emotional to fill in the survey but I am glad I have done it if it helps other women.
It is reassuring that mumsnet are continuing their support.
Thank you.

RiverRocks Thu 01-May-14 08:26:04

I've completed it. Forgot to mention the anaesthetist when I went in for surgery was very unsympathetic though. She firstly asked me how far along I was (!?!) and then told me that I could have 5 miscarriages before having a baby. Not really what you want to hear in that situation!

MAsMum Thu 01-May-14 11:07:23

Thank you for pursuing this. I suffered 4 m/cs after my Ds was born.

I discovered that this is an area of medicine which is not talked about much, is severely underfunded and has lots of unanswered questions. The psychological impact of m/cs is often not recognised.

It is important for m/cs to be talked about as there are some amazing doctors who can offer effective treatments but when you are experiencing m/cs you are not always aware of these.

Allthequeenshorses Thu 01-May-14 11:57:09

Thank you for this. I have completed it. Thank you to mumsnet as well. When filling in and reading back made me see that my key support was here, DH and friends. Nothing at all from professionals.

CuppaTeaAndAJammieDodger Thu 01-May-14 13:19:41

Another one to say thanks - my miscarriage was in 2007, so can't fill it in, but very much appreciate the effort going in to reviewing the care that women receive.

TheBuggerlugs Thu 01-May-14 19:03:09

Well done MN for doing this

I feel very strongly about miscarriage and infertility and happily talk to everyone about it. I make no secret of the face that i've lost 3 babies and have had IVF. Miscarriage effects 1 in 4 women but hardly anyone really knows the truths about it.

Redbird12 Thu 01-May-14 20:20:57

I had 2 m/c in 2012. Due to NHS not offering me a follow up scan for several days with the ERPC subsequently being over a week later, i decided to go private for op. I know this survey is about the NHS but there is also the question about why people feel the need to go private and is it past care or wait times on the NHS that have pushed them?

RowanMumsnet (MNHQ) Fri 02-May-14 09:32:27

Thanks to everyone who's completed it and for all the comments. It's an interesting point about people feeling pushed into private care - kicking ourselves slightly that we didn't include that.

Do please share the survey with anyone who you think might be able to complete it for us; the more responses we get, the better idea we'll have of the national picture.

Monstamio Fri 02-May-14 14:50:01

Done - thanks Mumsnet.

Mine was a story of two halves - superb care in the EPU - sympathetic sonographer and midwife, private consulting room to wait in so no sitting surrounded by bumps etc. But a totally different story the day of the op. The only person to show any sympathy or even acknowledge what I was in for was the consultant, who looked me in the eye and said "I'm sorry" when he read my notes during the morning rounds. That made all the difference.

The nurses, however, didn't acknowledge it at all and the anaesthetist kept calling the op a D&C and saying it was just "a minor procedure". Well surgically it might be minor and I'm not claiming it was open heart surgery (though heart-breaking in a different way), but to me it was a pretty fucking big deal and should have been treated as such.

Done, but I forgot to add - I didn't cope very well emotionally with the mc. After 19 months of trying and finally getting pg with clomid we thought we were there, and returning to work and social lives that contained pg women due around the same time was very hard to deal with. There was no counselling available at the epu, it had been stopped due to funding. I spoke to the gp about counselling and he just said it was normal to be upset and if he referred me for counselling I'd probably be ok by the time I got to the top of the waiting list anyway. I was given the number for the mc association but it was only open during office hours when I was at work. I didn't have too many issues with the nhs regarding the practical side of things, but there was a total lack of emotional support.

CallingAllEngels Sat 03-May-14 20:18:51

I can't fill this in because both my mc have been outside the UK but thank you for this campaign HQ.

squizita Sun 04-May-14 13:52:02

Thanks for organising this survey. I must say i was lucky (as lucky as you can be with several miscarriages in 2 years) - bar some idiot junior A&E staff, all of mine were dealt with 'textbook' which made my diagnosis and ability to 'hold' a pregnancy with medication possible.
But I hear so many shocking stories and ignorant GPs through MN and the Miscarriage Association, I am saddened that care is utterly shoddy in some hospitals.
My bugbear is women who are 6+ weeks pregnant being told they have had a 'chemical' pregnancy not a miscarriage: APS (a major cause of recurrent loss which also carries a thrombosis risk) often manifests itself at about 6 weeks: the GPs are just trying to save themselves money/hassle but lying to women in the process... and possibly risking future pregnancies. angry

squizita Sun 04-May-14 14:06:45

Is there any space in the survey about A&E. They were the WORST for me, however the Gynie team and EPU were very good indeed.

Young 20-something men... needing help to understand pregnancy tests/blood, telling me I 'definitely' had ectopic (didn't and symptoms were nothing of the sort), patronisingly/slowly explaining what a chemical pregnancy was (WRONGLY I was 7 weeks gone) as if I was a little girl when I was a recurrent miscarrier and knew more than them...
I actually saw the gynie registrar tell one off through a crack in the hospital curtain so it's not just emotional memory - they are woefully badly trained, lack empathy (youth/lack of experience) and did actually place me at clinical risk at one point.

somewherewest Sun 04-May-14 20:24:11

I had a surgical management of miscarriage in Watford in November 2013, with an overnight stay. I had turned up at the hospital that morning for a 12 week scan thinking I was going to see a healthy baby. The big issue for me was the nurses' total lack of compassion and empathy. I know the NHS doesn't have the resources to send someone to hold my hand all night, but just bloody eye contact, a smile, someone taking the trouble to say they're sorry for what happened to me. Its just a different attitude.

Wineandchoccy Sun 04-May-14 22:02:00

Done - thank you

I am having a miscarriage now, I found out at my 12 week scan last Thursday and decided I would have medical management but nature decided otherwise and I started bleeding on Friday.

My care has been excellent though the sonographer, midwife, consultant were lovely and my GP rang and left me her mobile number in case I needed her over the bank holiday.

I think help/support could be better for husbands/partners though.

FatalCabbage Sun 04-May-14 22:39:03

thanks wineandchoccy Sorry you're going through that.

Cuppachaplz Mon 05-May-14 12:14:19

Filled in for most recent, which awful, and I found the hospital very upsetting, and very drawn out.
I have had several before which managed far better. It may be down to location, but for me things have not improved.

nickdrakeslovechild Tue 06-May-14 09:33:27

Done, I started bleeding just before 12 weeks over the weekend. Phoned the community midwife who said as it was under 12 weeks I would have to just wait and see what happens as it wasn't an emergency. Carried on spotting over the weekend so got hospital referral on the Monday at the early pregnancy clinic who did the scan and found I had had a missed mc at about 7 weeks. Saw the nurse who said to go home see how it progressed and would have an erpc the following week.
Those days in between bleeding and in pain were awful. Once I got admitted to the hospital for the erpc things were better. As we were leaving they said as soon as we got a positive pregnancy test to go back for a reassurance scan which we did and was great.
When I started bleeding again a few weeks later we rang the hospital rather than the midwife and they said pack your bag and come straight in. Luckily the scan showed a heartbeat and I went on to have a healthy baby. The problem for me was the community midwife and their attitude that as it was under 12 weeks it didn't matter. When you are losing a child, emotional and in pain it does bloody matter!

Monstamio Tue 06-May-14 22:00:33

Ironic timing but I had to add to my comments above. Today I have been contacted by a health visitor to arrange a visit ahead of "the birth"... of the baby I miscarried in November. Unbelievable.

Monstamio Tue 06-May-14 22:01:33

Ironic timing but I had to add to my comments above. Today I have been contacted by a health visitor to arrange a visit ahead of "the birth"... of the baby I miscarried in November. Unbelievable.

Monstamio Tue 06-May-14 22:02:55

Ironic timing but I had to add to my comments above. Today I have been contacted by a health visitor to arrange a visit ahead of "the birth"... of the baby I miscarried in November. Unbelievable.

Monstamio Tue 06-May-14 22:03:36

whoops sorry... damn phone!

StampyIsMyBoyfriend Tue 06-May-14 22:44:48

monstamio sad

Complain. Channel that anger.

I had similar when I had to have miscarriage bloods repeated, despite having the referral letter on screen right in front of her, the nurse asked how many weeks pregnant I was... My face said it all.

squizita Wed 07-May-14 08:34:38

Nickdrakes Not only emotionally painful, but actually quite dangerous. Some 'normal' losses can actually be ectopics or molar pregnancies (*very rare* but also dangerous) so any woman under 12 weeks presenting with pain/bleeding should be scanned and seen. That is policy: for good reason. As a nation we have incredibly low death/infertility rates from ectopics and molars precisely because hospitals are cautious.

TheRainDrops Wed 07-May-14 22:45:35

Despite my hospital having a reasonably good EPU set up I was left with precious little practical info when my MMC was discovered last November, I literally left the hospital with no info on what to expect at all, no info on who to call, what to do etc. It was rubbish.

I also echo what barking says about emotional support, especially for women dealing with infertility issues on top of the trauma that miscarriage brings to every woman. Counselling was not mentioned or offered by a single professional I spoke to.

thatwhichwecallarose Fri 09-May-14 17:28:21

Completed.

One thing I didn't add was how alone I felt before my procedure. As it was on a female ward, there was no where my husband could wait with me. And we weren't told how long it would take so he was sat outside for about 10 hours.

number27 Fri 09-May-14 23:38:15

done, thank you mn for this. Miscarriage is just not thought of as anything significant sometimes, especially before 6 weeks.

elliejjtiny Sat 10-May-14 19:31:37

I filled it in for my December 2011 miscarriage. It was handled so much better than my miscarriage in 2005.

ClaireStA Mon 12-May-14 18:00:08

Done. I've had two miscarriages in the last year...and both so different physically and emotionally. As told, I referred to the last one but it all really brought home EVERY experience is different

Coumarin Tue 13-May-14 01:20:45

Done. Although just realised I forgot to add to fairly important things. One was that they allowed my DH to stay long past the visiting times and let him stay by my ward bed whilst I was having 'the op'. They even brought him a cup of tea and some biscuits. That was the one good thing they did tbh.

Also forgot to say that I was kept in as my blood pressure was high and the next morning the Doctor brought a group of students with him on his rounds who stood there staring at me and taking notes whilst he asked me about my miscarriage. That was horrible.

Thank you for doing this.

GoooRooo Tue 13-May-14 16:34:20

Done. I thought the care I had was excellent. I do think there is a lack of info on what to physically expect during a miscarriage though. The sonographer answered all my questions, e.g "will I see the fetus?", "how much will I bleed?", "how will I know if it's over", etc but I felt sorry for her with me grilling her through tears!

paperbaghag Tue 13-May-14 18:36:26

Can't fill this in as my mmc was in December the year before. Thing I remember most was the doctors being baffled I was so upset. They asked me if the baby had been planned - it wasn't. I'm not sure if they then thought I would be feeling ok about it?? It was a bit weird. I was devastated.

Apart from a phone call to tell me when my d&c was and then one the day after to check my bleeding I didn't have any other care or offers of care. I don't know if that was normal.

beecrazy Wed 14-May-14 18:23:31

To read all the messages about the awful experiences women are still having to go through makes me both sad and angry.
I had seven miscarriages including one at 22 weeks many years ago and my treatment each time was horrendous (including being put on side room of labour ward on Christmas eve following the 22 week mc and saw no nursing staff all day, also once at 12 weeks put in a geriatric dementia ward as the only space available for 2 days)
To think that nothing has improved in all that time and the thing that stands out is the attitude problem of the people supposedly caring for you. Empathy bypass seems to be endemic in the 'caring profession'.
A gentle smile, a hug or just a touch of the hand would go a long way to help when you're in such despair.

Bodicea Wed 14-May-14 19:21:49

I would like to add that the new rules where there have to be two scans a week apart no heart beat is detected on the first scan on even a reasonable well developed fetus are ridiculous. They are an insult to the health professionals that do the scans and put patients through a lot of heart ache waiting for the inevitable second scan. (cant remember the exact rules as on mat leave and not read the policy in a while - they were introducing it as I was going off). I say this as a sonographer and someone who has experienced two miscarriages.

gotthearse Wed 14-May-14 21:21:25

Nurse:what are you doing here, this is an early pregnancy clinic for women who are pregnant. You're not pregnant, so why are you here?
Me: because I was told to come here. And you're the first person to tell me my baby is gone (heading for door in tears)
Nurse: would you like a leaflet?
Me: no.

gotthearse Wed 14-May-14 21:22:30

That's was in 2008.

Done thanks

RowanMumsnet (MNHQ) Thu 15-May-14 11:38:07

Thank you so much to everyone who filled in the survey, shared it and commented here. We've got enough responses now so we will close the survey today - please watch this space for the results.

flowers

RowanMumsnet (MNHQ) Thu 15-May-14 11:41:47

shock Blimey gotthearse, that's truly shocking (sorry, posted before reading yours)

Justonemoretime Sat 17-May-14 18:18:45

I've had 3 in that time frame, happy to help with research... Lots to say, good and bad...!

Justonemoretime Sat 17-May-14 18:22:31

I must just say the the EPU at UCH, London is amazing. All services should visit and see how they do it there.

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