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...

[winebeforepearls]

I can understand it might be upsetting to have small children in EPU, but I don't really know how practical it would be to ask people not to bring them in. I had to bring my dd in for the scan for my 2nd mc as I couldn't arrange childcare at such short notice and DH was away. A lovely nurse did at least keep her occupied while I had the scan, and tbh my daughter was a great comfort while I waited for the second scan.

[Gumbo]

With my 1st m/c I was told by the very young doctor that it would be 'just like a heavy period' . They really need to stop saying things like that and giving women a more accurate description of what is likely to happen, and that it is far more likely to be like you are bleeding after you've given birth - with lochia etc.

Also, there needs to be proper training and systems in place so that all the staff women get to see will have access to the same patient information. This will avoid situations like I had when having a ERPC with my 2nd m/c, upon arrival at the theatre to be told by the surgeon "Your baby is alive". (It turned out he was reading the scan result from the previous week...)

[islamum]

GPs should be given training on men who have suffered, my dh was grieving too, and no services available to him, mc should be a reasonable reason to be signed off work for men too. Also dh should be allowed to stay, my dh was with me all the time.

[whomovedmychocolate]

I've had two miscarriages. The GPs attitude was actually better than the EPU - which round here is the actual antenatal dept, so you have to sit there, with very pregnant women who are having their anomaly scan

Perhaps a good way to deal with it is to have say an hour in the morning which is dedicated to emergency scans before scanning the routine cases if services can't be separated?

Also, I was given no information at all - no-one said to me 'this happens in 1 in 3 pregnancies; you did nothing wrong, it was just a problem with this baby'.

Describing your loss as the loss of a baby is so important too. I was told 'oh good news, no RPOC left over' (using the acronym) I had to ask what that meant and was told it meant there were no retained products of conception. Again I had to ask what that meant - I was really traumatised at the time - so wasn't exactly taking it in, and was told 'you know, bits of cells leftover from the miscarriage'.

Finally I was told to come back in three weeks to see if my baby (my current pregnancy) had survived - three weeks which included christmas. After having two miscarriages and a major bleed I was facing waiting to see if I was carrying another dead baby. No contact details were given in case I bled again (and I have a blood clotting disorder so it's a big deal if I do start to bleed).

I've also recently discovered each miscarriage could probably had been prevented by giving me blood tests as soon as I knew I was pregnant and giving me supplemental blood products but because you don't get to see a consultant till you are at least 20 weeks pregnant it's pure chance whether or not your baby lives or dies.

[spicemonster]

What an excellent post berolina and a great idea. My mother and my sisters had all had MCs so I had support at home but there is a lot more to be done.

I was lucky as I was under the care for both my pgs at St Mary's which has a brilliant and sensitive EPU. Having said that, there are a few things I would like to fix:

I would like:

• for the D&C to be called that still (not sure if it's possible). But to have your longed for baby being taken out of you called 'evacuation of the retained products of conception' seemed a bit bald.
• for A&E doctors to be better trained about miscarriage. When I had a threatened mc with my 2nd pg (which I carried to term in the end) at 15 weeks, the first A&E doctor told me that 'it's very common' and then tried to find a heartbeat with a doppler which he'd never used before and so completely failed at. The second A&E doctor (at a different hospital) tried to give me an internal. Neither of them gave me any hope and it was another two days before I could go to the EPU and have my scan
• EPUs to be open at weekends.
• for men who accompany women to the EPU to STAND UP if there are not enough seats. It's bad enough having massively heavy bleeding but to stand for two hours waiting for your scan is just intolerable. There needs to be signs telling them to give up their seats.
• I agree with no babies either. I appreciate that it makes it hard for women who are bfing but seeing a baby when you're in the middle of losing one was just utterly devastating to me.

Some of those are probably a bit personal to me but the A&E training one is crucial I think.

[barbamama]

I don't think anyone is saying ban children, of course there will be time when the people have no choice (I didn't have children when I mc, could well be me if it ever happens again) - but I don't think there is anything wrong with having a guideline that says please don't bring children with you unless absolutely necessary. Indeed, the Ultrasound dept in my local hospital says that anyway for routine 20 weeks scans.

[spicemonster]

Sorry the grammar in that post was appalling. I still find it upsetting, three years on and despite having a beautiful child in the next room.

[barbamama]

I know, me too. Also reading other people's experiences is upsetting me tonight. Clearly it is a very distressing time whtever the stage of pg and to hear how people were traumatised even more in some cases (Gumbo is heartbreaking. This is a great idea, I hope it leads to improvements for everyone - not the usual postcode lottery.

[VeniVidiVickiQV]

Portable u/s should be available in A & E and Maternity units as STANDARD (with doctors who know how to use them....). It would free up an awful lot of scan time.

[lackaDAISYcal]

Perhaps that's something else we can put to Alan Johnson then; more funding for The Miscarriage Association, as they appear to be doing a lot of the things that the NHS isn't.

and surely if some units can provide a good service, then ALL units can?

Jules the midwife who dealt with me both times chatted with DH and I for over half an hour the first time, and then said we were free to stay in the room for as long as we needed, and to give her a shout if we had any more questions. We also went away with a handful of leaflets from the MA, which were useful in the days after. The care was fantastic I must admit.

I'll give them a call in the next few days and see what information I can get about their protocols.

[spicemonster]

VVV - I agree. That would have made a huge amount of difference to me. I went to a 2nd A&E unit because when I rang, they said they had a portable U/S machine. They didn't. So that was 2 x 5 hours in A&E units where they couldn't actually do anything or tell me if my baby was still alive. What a stupid waste of resource

[Habbibu]

Ninewells Hospital in Dundee can also be used as an example of wonderful practice. I've lost 2 babies there - 1 at 21 weeks (anencephaly), and a miscarriage at 8 weeks.
Scans arranged at very short notice, EPU and suite where procedures take place well away from maternity units.
Private (or at worst, 2 bed) rooms in suite.
Sympathetic, friendly and well-informed staff.
Profuse apologies for having to use theatre on labour ward.
Post Mortem appointments in Gynae clinic, not antenatal.
Midwife counsellors on staff, who do long-term follow up care.
For dd1 the hospital provided a beautiful memory box, with photos, a blanket, hand and foot prints and a poem.
Teamwork and obvious consistency of approach across maternity services with respect to loss of babies.

Just to add my thoughts on having children in EPU - I do sympathise, but having dd with me kept me sane during the various scans I had in my recent miscarriage - she reminded me that things can go right - pregnancy with her was very scary, following the loss of her sister, and a bleed at 9 weeks.

[lucysmum]

• protocal for making sure your midwife (if you have been assigned one_) knows what has happened ! The day after I had spent two days in hospital after miscarrying the midwife turned up for my booking in appointment all cheery, no idea i had been in hospital.

• some way of telling somebody what to expect if they do miscarry and when they need to seek urgent help rather than sitting it out at home. difficult one this as newly pregnant woman does not want info about m/c but in my case I was all for sitting it out at home until the next morning. it was only when i passed out and got blue lighted to A&E did i realise i was loosing an unusually dangerous amount of blood (4 unit transfusion afterwards). It is such a taboo subject that although i had friends who had miscarried i did not know what to expect and assumed what i was experiencing was normal.

[Oblomov]

Our EPU at St Peters In Chertsey, Surrey is a disgrace.
They refused to scan me even though my GP had phoned them.
And they are only open Mon-Fri 9am-1pm.
NO SCANS are done outside of these hours. No good if you miscarry at the weekend. You have to wait until Monday morning.
They are unsympathetic and clinical, like you are just a number.

[orangehead]

I have had 3, and generally I felt I was treated well the consultant I was under was fanastic, she even did tests after my 2nd miscarriage even though she said no she couldnt at first. But I was so upset and said I didnt think I could try again she changed her mind. I definnetly agree with not waiting till you have had three for tests. The a and e doc I had was horrible, went into great detail about in the olden days women mc all the time and they didnt even know as they didnt have preg tests back then, wtf has that got any relevance to me right now. Also had a very insensitive gp when I went to see him with stomach cramps a week before my 2nd mc. So yes better training for gps and a and e staff and self referral to epu. I also left hospital with no info and all the info I got was from the miscarriage association (I wasnt a mn back then, I wish I was though)who informed me of a support group at the neighbouring hospital which I found a great help. Also agree shouldnt be in some ward as preg women or women having termination or even in waiting room with them, its just cruel. A friend of mine had a stillborn and with her following preg she got admitted at 32 weeks on a ward with women and their new born babies it was torture for her

[ladylush]

Some women have to take their kids to EPU as there are no childcare alternatives.

Having had 3 m/c I would like to see consistent empathic practice with information giving and if applicable appropriate infertility investigations. Scanners should be available daily including weekends. Doctors and NHS Direct (who were very unhelpful ime)should have lists of hospitals with EPUs and opening times. Their lists are not accurate, nor are doctors lists.

Clinics/GPs should liaise with Midwives so that women who have m/c do not get phonecalls/letters asking them why they didn't attend their booking in appt/scan (even though the woman has left a message on the answer phone explaining why they cannot attend the appt.)

[KashaSarrasin]

I've had 2 m/cs, plus bleeding in this current pregnancy (now at 20wks). I've visited my local EPU 4 times in the last 12 months, and each time I've had to wait 4-5 days for an EPU appointment, the waiting is unbearable not knowing if your baby is alive or not

No one should have to wait more than 24 hours (or at a push maybe 48 hours) for a scan following bleeding. I've been told that my local EPU, at a large hospital, has slots for just 8 appointments a day and runs only 5 days a week. The equipment is there, but the funding for staff and sonographers isn't, which is just daft.

[donbean]

Defo away from pregnant women...Our EPAU has women with problems in late pregnancy, so i ahd to tell a mw that i had arrived for my "abortion pill" while sat knee to knee with a woman who was about 12 months preggers by the look of her!

Also a reveiw of the bloody bloods, i had to keep going back to EPAU to have bloods taken only because my levels were 500...they dont discharge till its 25 or less. ffs, i had had a complete mc and was almost back to normal...but they were going to make me go back, i refused.
Review of the paperwork, one pack/set of papers for one whole problem. Instead of lots of bits of paper filed in notes. Having to tell the same story over and over and over, more upsetting every time.
This is a dead good idea, i am too a veteran, just had my 3rd mc 3 weeks ago.

[oregonianabroad]

agree with everything that has been said, and am so pleased to hear that this is being taken up as an issue.

a long list of things NOT to say should also include:

*you can try again
*it happens all the time
*it wasn't meant to be
*it's not a big deal
*did you want it?
*probably for the best

(all of which were said to me when I had an incomplete m/c, and a truly horrific medical experience after as a result)

etc, etc...

[CantSleepWontSleep]

Every woman should have 3 options explained to them once m/c confirmed - natural m/c, tablet to bring it on, ERPC. The process and likely timescales for each should be explained clearly. I was 'fortunate' in that these options were explained to me, but so many threads on here have made it obvious that not everyone gets this same service.

[orangehead]

Just remember a couple of other things, I agree men should be allowed time of work to, my husband wasnt and I had to go and stay with my mum. With my 2nd mc I went to a and e bleeding to be told I wasnt pregant I was just having a heavy late period we continued arguing for a few mins that I was indeed pregant. To which he said right we will do a blood test, and two hours later he came back saying I had a strong positive.
Tbh the best docotor I ever saw was a student one after my scan had just shown my 3rd baby had died. She did look very awkward and said 'its crap' a couple of times (i know unprofessional) but she showed real compassion and seemed really concerned for me, so much better then some docs who hardly even look at you from they notes

[CantSleepWontSleep]

Oh, and don't tell women that they need to wait 3 months/1 month/whatever before trying again. This is just to make dating a future pregnancy easier for HCPs.

Again I was lucky in this respect. I asked how long we needed to wait before trying again (dh was in the room with me at the time), and with a slight twinkle in her eye the doctor advised waiting until we got home .

[wonderstuff]

((donbean)) god this is so sad, WHY aren't all hospitals good, its not rocket science is it?? My experience was so awful and the hospital was great, can't imagine how much worse it must have been for others

[orangehead]

I am here again, the sonographer that told me my 1st baby had no heartbeat, said 'dont worry I will see you in a few months with your next'. Its a horrible thing to say to anyone who has mc but I was in complete shock as it was just a rountine 12 week scan, and I had only seen my baby moving and its heartbeat the week before on a scan as I had a bit of a bleed. I hadnt even got my head round that my baby wasnt alive let alone even thinking about another. Ooh Im getting angry and upset now. But a standard code definetly needs to be in place to avoid these things