Mumsnet campaign for Miscarriage standard code of practice

[carriemumsnet]

When Alan Johnson came a visiting last week, miscarriage and some of the frankly appalling treatment that Mumsnetters have suffered was one of the talking points Following on from sfx's comments (and others) this is what AJ had to say:
"it seems to me from all your comments and from talking to the Mumsnet people here that we really should seek to ensure a common set of standards across the country. I think I'm in at the start of a new campaign and it's something I will talk to Ministers about when I return to the Department. Mumsnet have informed me that I will not be allowed to forget this issue!"

So now it's down to us to come up with that common set of standards- guidelines and procedures that we'd like to see implemented across the whole of the UK.

I'll happily kick off as a veteran of 2 m/c: but do feel free to disagree with my suggestions/add your improvements :

Automatic access to EPU for anyone with a suspected miscarriage (without having to get a GP referral) and EPU's situated away from regular ante natal clinics /labour wards and devoid of images of smiling babies - please.

Access to all affected to a pamphlet/booklet put together by Mumsnet and full of your tips, advice, empathy and reassurance - describing what might happen and letting folks know they're not alone in this.

Over to you...

I haven't had time yet to read all the messages,but would like to add that info on ectopic pregnancies would be useful too.

I had an ectopic several years ago & it was a truly dreadful experience.I was given no information about what might happen,ie post op bleeding,sources of support.

I had to self refer myself to the EPU during subsequent pregnancies,despite being told that it was imperative that I had an early scan,due to my increased risk of an ectopic.My GP was very ill informed & wouldn't refer.

ska, I agree with your point "we are all different". I was one of those who didn't grieve or feel bereaved - the pregnancy hadn't seemed quite right from the start and I knew from the scan after the bleeding that it was a blighted ovum so hadn't developed very far (which made a difference to how I felt - I realise it isn't the same for everyone).

I agree also that information about the physical effects could be much better. After the scan I was offered a choice between a D&C (they called it that rather than ERPC at that point) and just waiting. As I'd never had an operation before and didn't want to have one then, I opted to wait. Not a good choice, as it turned out.

I was offered rather more signed-off time than I wanted to take. I liked my job and wanted to get on with my life, so after a week or so I went into work. I didn't feel too great standing all the way into Westminster on the 159, but I made it. I reached my desk to find a Post-It on the computer telling me that Committee Stage on the Bill I was working on had been brought forward. Just what I needed, a chance to get back into work again. An hour later, the pain and bleeding started. Very heavy bleeding. I explained as far as I felt able to my boss who called a taxi for me. Second stupid mistake of the day - I asked the taxi driver to take me to St George's. Tooting is called Tooting for a reason...

Eventually arrived and managed to get out of the taxi without incurring a heavy cleaning bill. Made my way to the EPAU, sorting myself out several times on the way, only to find that it was closed at that time and I had to go to A&E.

Just about made it there, but felt several times as if I might faint, and wondered how long it would take anyone to find me in those corridors if I did. The queue wasn't very long. I went in to see the triage nurse, explained my situation, she explained very sympathetically that I wasn't their highest priority and asked me to go and wait somewhere. I stood up, blood went everywhere and I moved up the priority list. Bells were rung, people rushed around and I was on a trolley, on a drip, and told that I was In Strict Bed Rest, in no time. There was a black comedy moment when the nurse asked for a blood sample and I asked why she couldn't just use a bucket. I had an injection to stop the bleeding, and was told that I would be having a D&C that day. That happened, after a fair bit of waiting around and not being able to eat or drink. As well as the bleeding and the pain, I was not prepared for the utter misery - as there wasn't any grief involved in my case, I presume it was hormonal.

I was put on a general ward. A teenager was having a very loud conversation about her gynae problems, but I'm not complaining. Her sense of humour in the face of adversity and her fighting spirit helped me fight off my feelings of hopelessness. After the operation I was passing clots so I stayed overnight, in a ward with a pensioner who was pretty much better but hadn't had her care package sorted out. We had a nice chat, and she called the nurse when I fainted while trying to use the commode in the night. I found the company of other patients very helpful, and would not have wanted a private room, or a ward with only miscarrying patients.

I can see that a labour ward would be absolutely the wrong place to be, but I did not experience any strong emotions about pregnant women - I was an emergency case (at least after messing up the triage nurse's shoes), the hospital did save my life, and I wouldn't have been upset by the presence of pregnant NHS staff. I didn't feel any bitterness towards people I knew who were having babies at that time.

A fair few of the offensive remarks others have mentioned were made to me, but in a kind way, and I interpreted them accordingly. "It's common", for example, can mean "It's all right to talk about it - people will understand, and a surprising number of them will have been through it themselves". It's those who said nothing at all who really offended me.

I have to say that I am reading this thread with my mouth hanging open! Maybe there is a general difference in early ante-natal care here in Scotland or maybe I've been 'lucky' to have good care after my m/c. When I found at I was pregnant my midwife automatically gave me contact details for the maternity unit at the hospital and was told to contact them if I had any problems at any time day or night. When I did start bleeding I 'phoned as was told to come straight down to the EPU and was seen more or less immediately and given a scan within the hour (this was on a Sunday) when the m/c was confirmed I was admitted to a ward which is designed specially to cater for early pregnancy loss and had an ERPC later that day. It didn't make the m/c any better, but the treatment myself and my husband received helped a bit. I only wish it couldbe like this allover the UK, but it does seem to me (and many other Scottish mums) that ante-natal care south of the border is nowhere near as good as it could or should be .

That's interesting, Teenie - I know it varies in Scotland too (just ask expat!), but experience here has also been great - I wonder if we were at the same hosp?

Sadly am a veteran of 7 mc's and had varying experiences with all of them. The worst was definitely the one where I was shooed out of the hospital and told to deal with it at home...I haemhorraged and had to be rushed back pronto, in a right old state. I'd been sent home with a jar of saline and told to keep any remains of the mc in it and bring it back to the hospital, as they wanted to analyse it so see if it could give us any answers as to why I kept having recurrent mc's. Anyway, despite being hysterical and thinking I was dying as I was rushed back in to the hospital, haemorraging uncontrollably, I clung onto that pot for dear life...I found out two weeks later as I went in to get the results back, that the hospital had lost it.

Other grim moments were those where I was prepped for surgery, starved and not allowed water to drink for over 24 hours as my name got shunted down the surgery list for an ERPC, as it's supposedly an elective procedure, and I had to let other cases go infront of me. One such wait ended up in being sent home without the procedure ever happening (see paragraph above) and in two other instances I finally had my op after waiting over 24 hours. The surgeons were extremely apologetic but there was nothing they could do ...in one case I'd been pushed down the list for someone with an ingrowing toenail. Apparently their op wasn't considered to be elective, so I just had to wait.

Anything anyone can do to stop this kind of inhumane treatment would be good in my book.

artyharry, have you had an answer yet?

I would advise any woman who has had multiple miscarriages to get checked for Antiphospholipid (aka Hughes) Syndrome if they haven't had an answer before. If there's one thing I can get from having it myself is to nag everyone I can to get tested.

I've had more mc's than I want to admit to, and massively varying treatment with all pgs - including the 'booking in' appointment where I was told off for being unco-operative [it was pg with ds2 and I'd had 5mc's by then] The questions they were firing at me were upsetting me to the point where my head was scrambled and wouldn't think, so every response was taking me ages; i couldn't even speak at one part. This is the point at which a woman needs to have her previous mc history taken into account without having to go through it, particularly if as in my situation it was the same hospital throughout. One mc is hard enough, and although so unfortunately as common as it may be, it doesn't make it any easier for the mum-to-be having to go through it as "data" for unsympathetic medical staff.
As to the treatment at the time of mc-ing, most times i was given reasonable care at the time, the one where i was sent home to let it happen 'naturally' being the worst for me.
I want to post some more, but not now. hope that this thread stays around for a few more days please?

I think this is an excellent idea. I have suffered three early miscarriages. We don't have an EPU nearby (my GP told me to go straight to A&E if it happened again). A&E don't have an ultrasound machine and one time I had to go to the antenatal unit to have a scan later in the day (but only after much badgering by me and the registrar). People have generally been kind, but the facilities are appalling.

Also when I got pregnant the fourth time, the midwife almost said that I had not really been pregnant the second and third times because I had miscarried so early. I am sure everyone will agree that it doesn't matter how early it is, once a test is positive you are pregnant and know there is a new life inside you.

For my first miscarriage at 10 weeks I had wonderful treatment - I was in A&E at 6 am and by 12 noon was in theatre having a D&C - unfortunately I was in Luxembourg not the UK. Afterwards I was placed on a small ward away from any mums and babies. I know the NHS is not as well funded as some of the overseas health services, but we do have something to learn from them.

I miscarried at 11 weeks, although had 'warning' through having had a dating scan at 10 weeks which showed that there was no heartbeat. I was told they couldn't fit me in for a D&C for another 3 weeks, so had to go home and wait for a natural m/c to occur. Those days of waiting were the most awful 8 days of my life so far, made worse by not having been able to take control of the situation and have a D&C. I was also completely unprepared (as no-one thought to tell me) for the intense physical pain of having a 'natural' m/c at home. The information I had been given at the hospital simply implied it would be like a heavy period... that was not my experience.

i might be repeating things here as ive given up reading through 11 pages!!

I had a frankly traumatic time when i miscarried one of twins. When i finally gave birth to DS1 i was paraded infront of a group of students as an example of how teenage pregnancies can turn out,. Given the fact that dS1 was on life support within 3 minutes of being born was ignored.

I would love to see more sensitive handling of mums & dads even if one or more babies survives. To hear " wasnt it lucky you only had one" from a B*h of a Midwife after what i went through almost finished me off!!!

I know i was lucky and i know how hard it can be to keep miscarrying without any explanation, i didnt need my problems disscussed on the ward with 20 happy mums!

I had a miscarriage a couple of weeks ago. The thing I would like to change is to have the information about your pregnancy held centrally. When you have to call hospitals, GPs, EPUs - and especially when you have to contact them over the weekend - it can be very upsetting to repeat all your information on every phonecall. If there was a way of centralising the information (and all of the branches of the health service were able to have access)it might help avoid the situation I had yesterday when I received the appointment letter for my 12 week scan. A wee bit upsetting. More joined-upness is required.

I'd agree with everything everyone else has said about not being made to wait in a room full of pregnant women.
some of the people I saw with both mcs were lovely, warm sympathetic and kind. Others were dismissive and cold - acted as though I was being slightly foolish to be so concerned about something so common. One doctor said 'the thing is you weren't really pregnant' when describing a blighted ovum in a cheerful voice as though that made it better.
Also I had a very young doctor the second time who was clearly out of her depth and kept giggling nervously. When I called back a few days later with some questions (too much to take in at the time) I had to really fight to get to speak to one of the nurses (who actually knew what they were talking about) rather than her (who only read from a miscarriage association leaflet in between giggles).

I think we need to talk about miscarriage more. Most people don't realise just how common it is until they and their friends start having children.

I'd agree with everything everyone else has said about not being made to wait in a room full of pregnant women.
some of the people I saw with both mcs were lovely, warm sympathetic and kind. Others were dismissive and cold - acted as though I was being slightly foolish to be so concerned about something so common. One doctor said 'the thing is you weren't really pregnant' when describing a blighted ovum in a cheerful voice as though that made it better.
Also I had a very young doctor the second time who was clearly out of her depth and kept giggling nervously. When I called back a few days later with some questions (too much to take in at the time) I had to really fight to get to speak to one of the nurses (who actually knew what they were talking about) rather than her (who only read from a miscarriage association leaflet in between giggles).

I think we need to talk about miscarriage more. Most people don't realise just how common it is until they and their friends start having children.

I do agree with the poster earlier today who said that they took 'it's common' as reassurance rather than 'just get over it'. For me it definitely helped when all my friends suddenly came from nowhere telling me they'd had miscarriages too. It was like a silent community, and I'd had no idea they'd been going through it. What I did feel was sort of guilty for not being secret about mine, but it made me feel at the time less as if there was something wrong with me.

i had a miscarriage a year ago at 11 weeks.
and i also had to wait over a weekend and bank holiday monday because the radiographer wasn't in to do scans or something...so i had an agonising few days wondering whether my baby was alive or not..then on the monday i was in so much pain that I had to go to A&E because I couldn't cope with the pain at home.
i had to wait in the waiting room for half an hour while i was having contraction like searing pains in my back and abdomen every minute or 30 secs.
when i was finally taken into A&E, the only good thing was that I was put in a large room with sliding doors on my own and didn't have to be around lots of other people (with my mum and dp).
I was left in there for about half and hour or 40 mins before a gynecologist came to see me and she said 'you might be having a miscarriage but we're not sure' and was told I still couldn't have a scan until tomorrow when the radiographer was in. I just felt like saying look give me the gel and then machine and i'll flipping do it myself, it doesn't look that hard !

anyway then she left, and a nurse came in and tried to put a canular in my hand (im v. scared of needles and always pass out when i have injections) and she couldn't get it in the vein so just kept stabbing and stabbing at my hand and I was passing out....(while muttering fucking hell, what are you doing? that fucking hurts!!' until she finally stopped and left the room saying she'd get te gyne to do it when she came back (all this time, still waiting for some pain relief which i desperately needed!)

finally the gyne came in gave me an internal exam and then put the canular in and gave me some morphine which was SO helpful but i had to wait over an hour to get it!

then another hour or so goes by (bit hazy/asleep) by this point)

a DIFFERENT gyne comes in and talks to me about something...saying that maybe it's a placental something and it might just be a threatened miscarriage and blah blah so we can't be sure. i was sure that i was having a miscarriage because i was in SO much pain.

was transferred to a maternity ward..they gave me some sandwiches.

had to stay overnight with out my dp or my mum : ( which was horrible.

i wanted some more pain relief in the night but every time i pressed the button a nurse would come and say she couldn't give me any because the gyne wasn't around to prescribe it.

then in the morning a different doctor came around (male) and said 'right we've got your scan booked for this morning, don't worry everything is probably fine, bleeding is ver y common in early pregnancy, we will just scan you and check that you're baby is ok and you can go home'

so me and my dp were over the moon! we thought we'd been worrying about nothing and actually everything is going to be ok!

then we go in for the scan and the radiographer says 'im sorry there's nothing there'

we have to walk back seeing posters of smiling babies, pregnant women etc and then when we get back onto the ward some women starts asking my mum if i'm ok and what happened etc? how nosy!!

then im given a few boxes of painkillers to take home, a peice of paper with 'complete miscarriage' written on it and sent home.

most of the trauma i still have over my miscarriage is all centered on the experiences i had in that hospital and not knowing where my baby went....what happened...why the doctors kept telling me different things etc. nothing. no leaflet, no counselling, no follow-up.

after reading some stuff on the internet about how to deal with a miscarriage i rang the hospital,explained my situation and asked if i could have a copy of the scan they took at 8 weeks and she said oh im sorry it doesn't even look like a baby it's just measurements of a part of the head of the back or something, you wouldn't be able to make it out. and that made me feel even worse that the only record of my baby ever existing is kept in some file in that hospital and maybe they've even deleted it and they won't even let me see it. : (

i think this campaign is such a good idea, especially for young women (i was 18 when i miscarried) who don't know what to expect or what is normal/abnormal etc.
i think the way you are treated/spoken to at the hospital make such a difference.

Also a few weeks after my miscarriage I was shopping in sainsburys and on one of the big advertising boards outside was a giant black and white photo of a very sad looking woman cradling her arms as if holding a baby but there was an empty space in her arms.....

at first i thought i was imagining it and was actually going mad but as i got closer i saw at the bottom it said ' 1 in 4 pregnancies end in miscarriage' - Tom's - The Baby Charity.

I think that's what the charity was called anyway.

Does anyone else think that is insensitive???

I mean sure it highlights miscarriage so maybe people will be more sympathetic and take it more seriously when it happens to someone they know but what about all those 1 in 4 women having to see something that LARGE and blatant and emotional right in your face when you're trying to be normal and do your shopping? !

Pixella, I would probably try again to get your scan picture if you feel strong enough. I got mine at a later date, the staff were brilliant at tracking it down. After all you are legally entitled to any copies of your medical notes, Im sure that would apply for scan pictures too

justjules, for me it is a baby from conception. When I told an elderly friend that I had had a m/c at 7 weeks, she laughed and said "you cannot possibly say you were pregnant, it was too early" !! Apparently she had had a few herself but didn't think of them as babies until they were above 4 month old (pre-scan times, probably). That may spare some the heartache, but I think differently.
I was also made to wait 4 days bleeding and in pain to have a scan, just to be told there was nothing in there anymore.
Right now I am 7 weeks again and not very well, so this topic is close to my heart

tattiesovertheside, if understand right medical notes are being centralised on a computer system so that whoever treats you has full access to your notes. Problems will always come when they don't bother to read your notes before seeing you.

How sad to read so many stories of unsympathetic health staff. All seems very similar to my experience - whilst waiting for a D&C following a 3rd missed miscarriage picked up at my 12 week scans, in a room full of young girls awaiting terminations, in the hospital where I had given birth to my 1st DD, I had a little cry. Two of the nursing staff stopped to have a look at me and commented to each other " what is she crying for?" as though this woiuld be a strange thing to do felt like giving them both a big kick. The other 2 miscarriages were also not treated with much sympathy - I feel that a campaign to support women to go through the worst time in thier lives somewhere less public and away from maternity units would be a huge step forwards.

I know people have already made this point but -

• please can GPs/A and E/health staff/midwives be trained to TELL you what to expect PHYSICALLY (not just hand out leaftlets, good as they can be)

Throughout starting to miscarry on a work conference, having to check myself into the maternity hospital in Dublin next morning for a depressing scan, then flying home, going to own GP (who was great and pushed for another scan next day), then going back for D and C next day, no-one really told me what a miscarriage would entail.

The D and C didn't work but the hospital claimed it had. Three days later I started to feel dreadful but went back to work.

The next day I had bad stomach cramps but thought it was constipation, from the general anaethetic.

Only after a whole day of worse and worse pains did I realise that they were coming at 5 min intervals and clocked they had to be contractions

I passed a lump/sac/the foetus - it was small, but I knew it was my pregnancy.

We didn't know what to do - should we keep for tests (which some books/leaflets say to)? So we trotted into doctors next day, and she was absolutely thrown, said yes, then rang up later and said 'sorry, no, there's no point'.

• so let's have clarity about that to - what to do with the produce of the pregancy and at what point the doctors want to be involved.

We buried it and it felt better. And I felt better once my body had sorted itself out.

But I wish I'd known - that a miscarriage hurts, you don't just ooze blood like a heavy period, that there probably will be some kind of sac or lumpy blood.

Lol to everyone who's been through it.

I haven't been able to read the whole thread, but I am currently having my second miscarriage (in space of 9 months). I spent 3 and a half hours yesterday in A&E and wasn't offered so much as a glass of water, let alone any advice or emotional support (apart from one lovely nurse who held my hand while being examined).
Dcotors told me there was no medical reason for me to have a scan and when I said I would prefer to have one to get a clearer idea of what was going on (wasn't sure at the time if it was a m/c or just bleeding), they said they didn't do scans just to "please patients".
After leaving my vision became blurred, I was dizzy and crying hysterically, and DH took me back to A&E. I thought something physically was happening to me but now I can see that this was my emotional response to being treated like my m/c was a routine everyday occurence, and being given absolutely no advice or support. Their attitude was essentially, well there's nothing medically which we can do, so just go home and come back when there's something we can do.
I am obviously still going through this now so haven't had time to think through my anger about what's happened. Just feel very bruised and fragile right now, and wish that somebody had recognised that while I was in hospital. I know I was in A&E where care isn't intended to be holistic, but something as simple as being given a leaflet on what to expect would have made a world of difference. Luckily I had DH with me; I only hope that a woman on her own wouldn't be treated so casually.

I had 2 2nd trimester m/c before they found out that I had an auto-immune condition - AntiPhospholipid Anti-body syndrome. Now have a 2 year old DD, as a result of daily heparin injections during pregnancy, asprin and lots of care from hospital - including regular scans,antenatal appointments undertaken by consultant and induced early. I had a terrible time with the hospital and the 2 m/c. I would like to see:

Dedicated EPU not next to maternity services. Properly staffed 24 hours - why do m/c happen so often at night?
Trained staff who can act sensitively.
Dissemination of m/c research to GPs, EPUs
Blood tests offered as routine after 1st m/c - why should we have to wait for 3 until this is done (I was very fortunate in some ways as hospital "lost" the first baby's body and did not do the requested post-mortem, so was seen by a consultant who felt a bit sorry for me and ordered blood tests against their normal rules - if he hadn't very high chance of 3rd m/c - as results came through too late to safe 2nd baby)
In-hospital - access to counselling including good explanations of causes of m/c
No long waits for "ERPC" (another example of insensitive medical terms)
Better access to scans - it felt like the hospital was doing me a favour!
No 4-7 hour waits in EPU before seen by doctor, only to be told scan needs to be arranged over next couple of days.

Even though I consider myself to be blessed with my very special DD, my m/c experiences still make me well-up if I really think about it. Some of this is down to a bereavement/grief response, but I'm sure if I had been treated differently I would have come to terms with it better. This is despite good counselling provided by GP and great friends and colleagues who sought me out and told me their experiences.

I would repeat an earlier post get checked out earlier if you have had 2 m/c or 2nd trimester - and be persistent, be a real pain - cry whatever to get tested.