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 just wanted to add my heartfelt appreciation for this thread. Even though I have 2 beautiful DD's, I've had 2 miscarriages over the last 4 months (one at 8 weeks and one at 9 weeks). I think the thing that's made me the most upset is friends comments about, 'how lucky I am to have two healthy DD's' or 'at least you've got 2 already' . As if I'm not entitled to any more babies because I've had my 'quota'. Just because I've got children it doesn't negate the sadness and loss of the babies that I miscarried.

Agree about re-locating EPU away from ante-natal wards. Had ERPC with 1st miscarriage and treated OK. But when being put under doctor chatting to me about how many children I had which made me howl. Then had to stay over night because they thought they's perforated my uterus. 2nd miscarriage was natural and I found it incredibly traumatic as very painful with lots of bleeding. Went back for scan to check it was complete and had little or no sympathy from doc who handed us obligatory miscarriage leaflet and partically shoved us out of the door as he had c-section emergency to deal with. Felt as if I was in his way and he had more important things to deal with.

The one 'good' thing to come out of this is the support I've got from the amazing women on the m/c thread on MN. I don't think I'd have coped half as well without this forum. It is a 'silent' club and not something that you'd openly admit to being part of in real life. But it's so refreshing to able to talk about it openly on here and show all those emotions that one usually keeps under wraps for fear that if you start crying you'll never stop.

For every woman on this thread I applaud your strength to speak openly about this emotive subject. I also am incredibly saddened that so many of you have had to endure heartless treatment from people in the 'caring' profession. Let's hope that this is the start of a positive change that means our DD's will not have to face what we have had to.

HeyThereGG, I knw exactly what you mean about the 'at least you have...' I spent the whole time around the time I had my miscarriages saying 'well, at least I have DD1' for fear of not being grateful enough.

I posted previously about being told more about the physical process. I found this published in the BMJ and found it very helpful in understanding what was going on
www.bmj.com/cgi/content-nw/full/322/7298/1343/Fu3
At the time I meant to contact the Miscarriage Association and suggest that something like this could be included intheir materials, but of course never got round to it...

I wanted to say this thread is a great idea and I hope it brings about some change...

I waited for my scan for 5 hours to be 'fitted in', in a waiting room full of heavily pregnant women, at one point another woman who was possibly miscarrying burst into tears and refused to wait any longer surrounded by all the happy people with scan pictures and that was in a Woman's hospital!

I think everyone's already made all the useful points I would have wanted to make...

It's so awful that so many of us have had similar experiences.

I too was told to go to A&E by NHS Direct. On a Friday night.

I drove myself there, with 11 year old child in tow (my partner was away) and a wadge of tissues between my legs as I had no pads at home. As it was late (already gone to bed) and I was in such a panic I threw my jumper on without a bra naiively thinking I suppose that as it was, at least to me, an "emergency" (as in, I couldn't think of anything worse than losing a much wanted baby) that I'd be ushered in and seen straight away in privacy.

Talk about stupid ..... we sat there for a couple of hours before I was examined. Me feeling dreadfully conspicuous and uncomfortable in what I'd thrown on, and increasingly upset as I had to keep rushing to the loo to change the tissue. Like all of you I was very scared yet it felt to me like no-one cared, and you have to keep it all together in front of everyone else waiting.

I was looked at by a very matter of fact junior doctor who said "oh yes, I think you're miscarrying but until we scan we can't be sure" and "there's nothing I can do" ...... but crucially, no expression of sympathy or regret. She then directed me - still with my son in tow - to wait immediately outside where the A&E cubicles were, where I sat for a further 4 hours feeling totally forgotten about, devastated, and worried as well for my son. During that time, I was treated to up close and personal views of two local teenagers who were paralytic, who'd vomited everywhere and who'd pissed themselves getting the sort of sympathetic care and concern ("there, there" and wiping their face gently with a flannel type of thing) which wrongly or rightly I felt I deserved instead of someone who had stupidly got totally wrecked.

Eventually, my partner arrived, got my son home and I was sent up to a ward, though no-one gave me any info about anything and I had to ask where the loo was ...... stupid, thoughtless details like that ...... like, you're obviously going to want to know where the loo is when you're miscarrying.

I didn't sleep a wink ...... you lie there, still hoping against hope. Again, I felt forgotten about - come morning, no-one came to see how I was, nor to advise when this scan could happen. In fact, the friendliest face was the woman doing the toast (though I couldn't eat).

Was then sent home, told to come back Monday for the scan ..... so I don't understand why I was kept in overnight ? Bled all weekend, had scan - very matter of fact again ..... nothing there. Bye.

I know it's probably irrational but when you are miscarrying you feel a huge sense of urgency in the hope that "something" can be done. Feeling ignored and/or having to wait around for hours is excrutiating - when I mulled it all over in my mind after, I kept kicking myself for not being more insistent (British reserve and all that) and wondered if I had been, would there have been an outside chance ? I kept thinking about how, instead of sitting in A&E for a total of 7 hours or so, would it have made any difference had I laid down ? Probably stupid, but it's things like that about which there is so little information IME. Oh yes ...... once you get on the internet afterwards, there's all sorts of anecdotal information but at the hospital, there's very little advice and/or reassurance given at all.

Compared to some of the experiences related here, my story is nothing yet it remains something I remember accutely 7 years on. It was awful and I just felt irrelevant. Typing this now, I'm surprised at how angry I still feel at witnessing the tender care given to drunks that night whose condition was self inflicted.

I suppose staff at a Friday night A&E probably felt I was getting in the way.

Situate a miscarried lady AWAY from those having elected terminations to avoid comments such as "OH HAVE YOU GOT RID OF YOURS TOO"

There is a tremendous difference between suffering a miscarriage and choosing to terminate an unwanted pregnancy. The two should NEVER mix.

I have had 6 miscarriages. What I found difficult with the first one that the staff nurse in a&e told the whole waiting room I was having miscarriage.I was left to bleed through my clothes in the waiting room. When I finally saw a dr was told it was very common. Then I had to wait another day to get scanned and because there is no EPAU I had to sit with women who were having their twenty week scans. I did however make a huge complaint to the cheif exective and some things were improved. The staff nurse was also dealt with. Following the second miscarrage I saw someone privately and had ERPC privately. I was given upmost respect and dignity. I feel lots of staff are not given adequate training in dealing with women who have miscarriages. |I also found it very difficult to get expert advice and was forced to go privately to see MR. Rai at the st.Mary's recurrent miscarriage clinic. At this point I was told I had a clotting disorder and prescribed the appropriate treatment. I am happy to report I am now 32+3 weeks pregnant and I feel this is due to st. marys care. Their recurrent miscarriage clinic really needs funding and the can help so many women.

Have named changed for this as don't wont to identified. I am Dr who has worked in an A&E with no overnight scanning facilities dealing with miscarriage, I was horrified on my first day there to find out what proceedure was (basically perform a VE which we had no training in, and discharge to come back to EPU). I found it horribley traumatic not being able to tell these women if they had miscarried or not. We actually frequently told them to go to a different local hospital which did 24 hour scanning.

I always tried to be sympathetic and said how sorry I was (both about what they were going through an the appaling facillities). But I recieved no trainig either before the job or at medical school. Reading this thread has realy upset me as I think I may have unwittingly contributed to peoples bad experience of this difficult time. I wholeheartedly agree with your campaign and would like to make a donation to the miscarriage association for education for th medical students and junior Doctors so we can give women a better service.

I totally agree with access to the EPU without a Gp referral, mine just said "It's too early to see anything" depsite friends of mine on forums saying they'd had scans at 5-6wks.
And the use of language and the phrase "It's very common" if one more person had said 1 in 4 to me, I'd have throttled them.

Make overnight and weekend scanning available.

Take all reports of blood loss very seriously.

Treat patients' records sensitively.

Review appointments regularly in a sensitive way.

Ensure medical staff in EPU etc. receive full training about miscarriage and ectopic pregnancies.

I had an ectopic pregnancy - bleeding started on Friday, GP could not diagnose for sure, had to wait all weekend to find out on Monday, by which time my tube had ruptured, if it had been found earlier there is a possibility I could have been treated with methroxate and not had fertility affected through losing a fallopial tube, was told not to worry too much about some blood loss until they did the scan and about a dozen medical staff whisked me off to emergency surgery!

I then had to cancel subsequent pregnancy medical appointments myself, which was hard.

Also had a midwife in subsequent healthy pregnancy who gave me records from my first EP to include in my file by mistake and that was upsetting.

I went for a scan at 12.5 weeks and learned the baby had died. I was treated very well by sensitive scan nurse, and nice consultant who offered natural miscarriage or D & C, and next day I had D & C on different floor of hospital from the maternity ward. The surgeon walked me down personally and talked nicely to me as well!

I don't know if this has already been said but the one thing that would have helped me was the leaflet the midwife gives you about what to expect from your scan. It says something like 'The scan will tell you: a) whether you are pregnant or not'... In my ignorance, I had always thought that if you had a miscarriage, you bled. I didn't know you could carry a baby who had died for several weeks, and not bleed. If the leaflet had said, 'The scan will tell you: a) whether you are pregnant or not and b) whether the baby is alive and well' or something, then I feel I would have been prepared for the possibility that it may have died - which I honestly was not expecting.

I had no after care, not even a leaflet, probably because they were short-staffed and busy by the time I finally managed to get out, but I think I was treated remarkably well compared to most people. I wish now I had taken more than 3 days off work though.

Asilentdoctor it is good to hear information from the otherside of the fence as it were. Also good to have the lack of training acknowledged.

Me again. Others have mentioned this but why di you have to cancel your booking appointment yourself? It's horrible for the woman involved, because I cry every time I say the word miscarriage or 'I'm not pregnant anymore' and each time I could hear that the antenatal booking lady was uncomfortable having to ask me why I was cancelling and then embarassed when I got upset.
On a more positive note and apologies if this has been mentioned already but Lesley Regan's book, 'Miscarraige: What Every Woman Needs to Know' is great. If Prof Regan could be involved in the campaign it would be great too - she is very high profile these days.
Another thought: acknowledgement that the woman's partner has had a loss too. If support for women may be minimal, but there is nothing for partners.

After two mc's myself...
I'd like to know that the hospital has updated records accordingly so that grieving mums don't get letters through their front door with antenatal appointments in them...happened to me both times, different hospitals, different health authorities and 9 years apart, on top of that, the second one sent the letter twice.
Scans need to be done away from the happy expectant mummies too. My heart just broke as I waited in a crowded waiting room, bladder full and in terrible, terrible pain to hear what I most dreaded at that time.
Doctors in the EPU also need to listen to the concerns of their patients.
They also need to be given an anti D if that is necessary. I had to fight to get a blood test to see if I needed one - I DID and was given one at the 11th hour(there is a time limit of 72 hours post Mc). The last thing you want to do is have to fight when all you really want to do is curl up at home and die...strong language I know, but so painfully true for me.
Have miscarriage support group meetings within the hospital which can be attended if the mum(and dad)feel the need. My first one had this and it was so helpful.

And I'm sorry if I've repeated anything already said...I can't read through as I still find it all so upsetting thinking of the babies that I should've had...

Probably someone already said this but... some sort of point of contact with a gynae nurse or doctor if you're having a miscarriage with no medical intervention, and the option of a scan to ensure that everything is gone once the bleeding stops.

I have had two mc's since March of last year. The first was a missed mc. The radiographer told us that she thought the remains looked like a molar pregnancy. I didnt know what that was. We were sent upstairs to wait in Gyne day ward. So no pregnant ladies to look at.
We sat for hours. A nurse came in a gave me a form to fill in. No sympathy just looks of pity. The doctor who eventually came in was obviously uncomfortable and could hardly speak any English. He didnt explain what a molar was, just took blood and told me to go home.
The nurse had to come in and tell us to ring at 12 the next day for blood results.
I made the mistake of looking on the web the next day. I rang hospital in tears and only then did the nurse explain to me what was going on. She was lovely but why did I have to find all that out on my own and only when I was crying did someone take notice.
I ended up having a ERPC the next day. Three days this went on for.

Why do we have to find out information for ourselves.
We should be treated the same as anyone else who has a medical problem. I bet cancer sufferers dont get judged the way we do.
I would like to see;
A standard level of care for every one across the country.
Scans at the first sign of bleeding regardless of gestational age.
Information given to both parents not just leaflets handed out as you stagger from the ward in shock.
A smile and some basic level of human kindness would be great You have just lost a baby.

Sorry I am ranting now. Makes me so so so angry. If we were men it wouldnt be this shit.

I had a mc at 8 and half weeks. The care I had at Nottingham I think on reflection was pretty good because:

GPs (one was an emergency gp) were excellent, matter of fact but sensitive

Scan, done the next day (although at the time I remember being devastated I couldn't go that afternoon, reading this thread it's confirmed what I know now - I was very lucky)

EPAU was totally separate from maternity

Staff, perfect in the way they treated me.

However, the ERPC I had failed. Can't remember the expression they used at the time but it involved 'missed' and 'the products'. It would have been helpful to be told that this can happen when staff are explaining your options, it's apparently on the leaflet I was presumably given, but couldn't bring myself to read. I had to go through it all again.

I really support everyone who is saying that a follow up appointment should be offered.

Also, it was very confusing when I asked when I could start trying for another baby because, like most on here, I was told 6 months, 1 month, 2 months, etc etc it wasn't until I found mumsnet that I realised the truth!

A minor suggestion - catching sight of the image of my baby on the screen at the scan will haunt me forever. I wish the sonographer had turned the screen away from me. They should ask if you want to see.

I had a m/c and then D&C at Queen Charlotte's in London and whilst I was treated very sensitively by the majority of the nursing staff, I was appalled that my DH was sent away for 2 hours at one point, so everybody on the ward could 'rest'. Nobody rested, as it happened but beside the point..

The upshot was that I was left contemplating everything and feeling completely alone, which just made me feel worse, and was difficult for my DH as we couldn't support each other. I couldn't cope with being on my own at that point I was in such a state.

Not sure how to overcome this issue, except to say that the ward sister should treat people a bit more sensitively. If a patient looks like they're about to fall apart - don't pull the curtains around them, banish the supportive husband, leave them to stew for 2 hours and ignore polite requests for pain meds or the return of their supportive partner - its just common sense isn't it??

I think this is a good opportunity to improve treatment at an awful time, I really hope something valuable comes out of it.

tiredAli ... totally agree regarding the scan. I was scanned by a GP after the midwife couldn't detect a heartbeat. I wish he had turned it away from me before he started. The sight of that little baby just floating there all curled up. Making me cry now thinking of it. He was about 16 weeks and I saw him when I delivered him, but that scan picture is forever imprinted on my brain. I'm not sure if I'm glad I saw it or not ... just sad really.

and another thing... after having a D&C you should be advised to take a certain amount of time off after work, and actualy given the sick note, if that is what you want. Apart from the anaesthetic, its obviously hugely emotional and so working isn't really viable for everyone straight afterwards. I wasn't advised, didn't remember to ask and then I went back in to the office after 2 days and then felt really dizzy and sick and ended up having to go home again when in hindsight, I should just have rested.

ronshar - not that this helps but last year dh and myself were told that he had an inoperable brain tumour that was "pretty bad" in its severity. We were given some print outs from cancerbackup.org. So we went home, googled, demanded second opinions and had lots of questions for the next appointment. So my point here is that cancer sufferers aren't treated any differently. That's not a good thing either.

More support for future pregnancies is a must. When I wanted an early scan after having had a previous missed miscarriage (pregnancy lasted until almost 14 weeks but baby had died at 8), I was told that this would not be done.

Luckily my midwife was sympathetic to my extreme anxiety and told me that we could beat the system if she referred me to the Early Baby Unit with miscarriage symptoms. Had she been caught she could have been in deep trouble, but because of her actions I was able to see that my baby at 9 and a half weeks was alive and healthy. This reduced my anxiety hugely.

I have to praise the baby unit on that occasion too (Southampton), I was impressed by the nurse who brought me my baby's pictures and asked me not to open it until I left the building as, "Not everyone gets good news.". I would have appreciated such consideration when I lost my baby.

Sadly that happened in another hospital where I was treated abominably - having had a scan confirming that the baby was dead the consultant then left me sitting in a corridor and stood in front of me and 3 other patients, and discussed my case loudly with another doctor without acknowledging my presence once. Had I not been almost catatonic I would have done something about it at the time.

Just some basic sympathy and consideration can go a very long way.

This misconception is partially down to my own ignorance but I'm clearly not the only one... It would be extremely helpful to be told when you initially see the GP to say you're pregnant, that the chance of a MISSED miscarriage is about 1/7 (subsequently told this from a gynae). I wrongly believed the chances were 1/100,(something I'd read on MN talk - my own fault for not checking it out).

I would have been far more prepared for a MMC at 12 weeks, had I realised that it was quite possible to be feeling all the symptoms of pregnancy and yet have actually lost the baby. As it was it was just a huge and horrible shock at a time when I had hoped to see a scan and share the good news.

Miscarriage should have a higher profile, medically. It seems to me that the correct information imparted at the right time, and with sensitivity would have enormously helped several people on this forum, and no doubt many others, but this is just the first step.

I hope you can are able to keep us up to date with progress on this. Thanks.