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...

[mistlethrush]

I've had 3 mc. 1st was most traumatic - at end of holiday, 10+ weeks, started spotting - got to A&E at local hospital (30 miles away) at 10pm - got pregnancy test and told probably OK, but come back for scan the following morning. Scan the next day showed that things not OK - suggested ERPC and arranged to do it that afternoon - which left us packed up, with no people nearby and dh and I in a state with nowhere for dh to stay on a bh weekend.

Ward I was on was a gynae ward - which was fine, and I got a side room too. However, nurse coming in at 3am to find out 'what the matter was' clearly hadn't read my notes... Hospital promised to let me and GPs know if there was any need for any follow-up. No news from Hospital - so thought things were OK - although they weren't and, because of Hospital promise, Drs also didn't take my repeated visits to them seriously until I turned up with heavy bleeding again. Turned out to be mp which would have been beneficial if it had been picked up earlier - ended up having to have chemo to treat.

2nd & 3rd mc earlier so 'handled' at home. Not much sympathy from Doctors. Both needed follow up at hospital - good experience - EPU away from maternity, although no info etc (despite being Leeds!)

So: Yes, separate department from maternity;
More reading of notes by nurses/doctors before insensitive questions;
better coordination between health services to ensure that if follow up is necessary that it takes place;
automatic cancellation of appointments without having to ring round and diy.

[bossybritches]

Brilliant idea Carrie- so sad to hear of your losses & of all the others on here.

my reply to an insensitive healthcare worker trotting out the "ooh it's terribly common you know" line had a snarl from me....

"so's a broken leg but it still fecking hurts"

[cece]

With my first MC at 9 weeks.

I had to go to GP several times for referrals to EPU over the 2-3 weeks prior to confirmation of MC. This clearly was a waste of GP and my time. Also stress of trying to get a GP apointment in first place when you are bleeding and worried. So self referral would be so much better.

I also had to wait 1 whole week before they could fit me in for an ERPC after confirming there was no heartbeat. There were only two beds for the whole hospital!

I asked about any counselling that might be avaiable - was told we don't offer that.

My second MC at 18 weeks was in a different hospital.

Having to go onto labour ward as the sonographer unit had closed down for night, to have a scan to confirm no heartbeat wasn't very nice at all. We had to wait 10 mins in waiting area with labouring women.

Overall I was given pretty good treatment once the labour had started. They had a special room away from the other labouring women but it was still on the labour ward. When we arrived after my labour had started I had to walk past about 4 or 5 labouring women who were all waiting to be allocated rooms. They all stared at me as I had been rushed to a room and they were waiting. At least I didn't have to wait with them I suppose.

I agree 100% about the sonographers being away from the ante natal clinnic. I had to have several more scans after losing my baby due to complications. I found it incredibly difficult to go back to where pg women were. I particulary found the videos of scans and baby adverts on the TV screens in the witing area very distressing.

The receptionists automatically asking "how many weeks pg are you?" when you turn up at their desk. I had already had my dead baby by then and after the second receptionist asked me in the space of 5 mins I had to be led away to a quiet private room as I became so distressed.

I hope something is actually done about this.

[orangehead]

sphil that sounds so awful. Infact many of these do, so sorry for you that have lost babies.
Bossybritches very good comment.
littlelapin, true there is some people who wouldnt dare say comments like that but from my experience I think you are the minority. I had so many people who I have known along time, are good friends and I know they are really nice people, say some really insensitive things and I know they werent being horrible and they had the best intentions but they just really didnt have a clue because it isnt a subject people talk about its swept under the carpet. My last mc was now 7 yrs ago, and since then I have had 2 friends come up to me seperatly (a couple of yrs after) and apologize for things they said and not being supportive. One because her sister had had a mc and another had experienced it herselves. I had never given either of them any inclination I may of been upset at all but both said they just didnt realize till it had been closer to home

[Jackstini]

Not got thru all thread yet but has given me some immediate thoughts
Am currently 6+2 pg after 1 mmc and 1 chem pg last year. Went to docs this morning and was told - no point in blood test for hcg - won't make any difference if the pg carries on or not. I did get tested last time and to me it made a big difference. Knowing my levels had halved at 6 weeks was a hell of a lot easier than happily going for a dating scan and being told nothing there. (Kind nurse let me out a fire exit when this happened so I didn't have to walk back thru the waiting room of pg women)
Agree with the separation from Maternity. When I had my D&C there was no room on the EPU ward so woke up oposite a pregnant woman
Also have a friend who had 3 m/c. Once they started testing they found out she had Lupus. This sould have been recognised from a simple blood test after her first m/c saving 3 years of heartache. It is apparantly a very common reason (doc told her 1 in 6, don't know truth of this) so why can't women have this blood test after 1 m/c?

[Jackstini]

Oh - and I had a call from the midwife to find out why I had missed my booking in appointment - a week after I had had a D&C and the hospital had said they would notify anyone necessary

[BouncingTurtle]

Wanted to add my support, I lost my much wanted baby at 9 weeks and had to deal with
a)having to share a waiting room with a sourfaced 14 year old girl who was having her pg confirmed
b)twice having to wait for scan in a room full of some happy and some miserable looking pg woman. I think the latter made me wanted to slap them (I was pretty raw at the time )

Definitely think that miscarrying women should not have to be around healthily pg women or around women having non-medical abortions.

[Monkeytrousers]

I agree MB. I felt very odd about the 'don;t tell anyobne till after 12 weeks 'rule'' - as if you could just pretend it didn;t happen if you did MC. I was told my my gp not to get my hopes up so quickly as it was only a bunch of cells - and she was right in that sense but people get their hopes up, men and women, long before conception even. That shouldn't be denied after MC.

There needs to be a comprehensive rethink within the health service about 'bedside manner' here.

[Blandmum]

Possibly I should have put that a little better. If someone says, 'Never mind you can always try again' you can put a fairly clear bet on the fact that they have never had a MC.

YOu are right, some people have natural tact an empathy. You'd be horrified at how few people do.

I still remember the woman breezing into the office that I worked in saying' God, young women today when are you ever going to have kids, you are all too self absorbed'

of the 4 woman working in that office, I'd just had a MC, another had had extensive cervical surgery and was warned she'd never carry a baby to term, and another was having IVF!

[Izzybel]

Great campaign!

I think that you should definately be able to get a scan straight away, if there is suspected mc.

I have had one mc and had to wait a week to be scanned . I ended up in incredible pain and the GP's attitude was appalling. He told me that "1 in 3 pregancies ended up being a waste of time."

I also agree that women who have miscarried / having a suspected mc should not have to mix with other pregnant women. It was awful, sitting in the waiting room, in terrible pain, with cheery women awaiting their 12 wk scan, waiting for my mc to be confirmed! And even worse afterwards, walking through reception looking at women with their huge bumps and passing the maternity unit shop, with the cute baby clothes and congratulations cards in the window. The same goes for being around women who are havin non-medical abortions.

[Blandmum]

My step MIL never bothered to ask me how I was because her mother saw MC as 'natural contraception'

Most utterly horrifying of all was the comment made to my very dear cousin who lost a baby at full term to placental insuficiency. (the most ghastly of things in the world, I think)The comment was from her MIL who had 7 healthy PGs and children. She said, 'I was never lucky enough to lose any, all of mine lived'

[Izzybel]

at some of the comments that people get from friends and family! I got "you can try again." I hadn't fallen off my fecking bike, I had lost my baby!

[Izzybel]

MB, how awful for your cousin .

[Blandmum]

Tis was 35 years ago and she still remembers it with great bitterness.

[shoshe]

Jackstini I had 13 M/C over 13 yeasr, and lost two children (one after IVF) from being very prem.

11 years after the last M/C I was diagnoised with Lupus.

You are right, it is alot more common than thought, I would not have had to go through all that if I had known. (not that women with Lupus cannot carry, but alot more care is needed)

This way for me a long time ago, and although from the sound of it, care after M/C is still not good, back in the 80's it was atrotious.

[cremolafoam]

Following 4 gruelling years of IVF i had a delayed miscarriage at 13 weeks.I went for my 12 week scan and it was discovered that the baby had died.I was refered that day to the gynae ward for an 'evacuation' Even the terminology makes me feel sick.1 hour after being told that my baby had died i arrived on a ward full of pregnant women. The sister admitting me said- and this will for ever stick in my mind-
right love YOURE HEAR FOR WHAT?- OH YES AN EVACUATION- NEVER MIND DEAR - HOW DID YOU LET THAT HAPPEN LOLLOL .
I had to hold dh back form assaulting her.
Not once during my stay was i offered a shoulder to cry on or a person to speak to about my fears or disappointment.After 6 hours of sitting in a chair next to my bed and weeping- I was nearly hysterical and could no stop crying. I can see now itwas the hormones i had been taking and the lonliness and feeling of being completely abandoned.I had tried so hard to do everything right with the IVF( which is so punishing) and yet I felt I had failed.
I continued to weep for the 3 days I was there.(diabetes meant i was on a drip and was thus bed bound watching the preganat ladies and listening to them talking about babies and knitting bootees.)
Finally the isolation got to me and in a fit of rage I sbaged a junior doctor who tried to placate me.She had no notion whatsoever of what IVF was about and made some semi religious comment about messing with God & nature.

I would like:
a seperate ward for those women who have had miscarriages or are suffering form fertility problems
automatic and immediate access to a named councellor who calles with you every day you are in hospital
much better education for nursing and medical staff- most have no idea about fertilty treatments, but seem to be able to offer an opinion on it.
more information from real people about how to cope.
Its not much to ask is it.

[DungunGirl]

I think that having a sonographer available at the hospital on the weekends is a must.

I started bleeding suspected I was having a miscarriage on a saturday, called up 'westcall' ( out of hours surgery at hospital) and got seen by a Doctor ( thank God! )

BUT had to wait until Monday for a scan. It was the most stressful 2 days of my life.

[cmotdibbler]

This thread just makes me weep with anger at the way women and their partners are treated.

I hope Alan Johnson reads these stories, and then makes the head of every gynae/obs unit in the land read them to realise how casual cruelty can stay with a woman forever.

I remember waking up from my first ERPC, hearing a small child crying and sobbing (DH wasn't there as they hadn't told him that they were taking me to a different ward after theatre). The nurse told me to pull myself together and stop crying.

My first baby would have been 3 next week. No one else will remember, or I think, care.

[Blandmum]

The line that most politicians will take is that there is no money available.

Leaving aside the point that there should be money made available, and as Expat eloquently and movingly pointed out spending a little on care of people post MC would save more money long term is dealing with the consequences, part of the Hippocratic oath says,
'First, do no harm'

Even if they can't make things better by providing extra support, at least teach people to deal with the situation with a modicum of tact. Tell HCP that things like 'Oh well, you can try again' and 'It is very common' are patronising at best and devastating at worst. So don't say them!

I've spent time at the local hospice with dh, and the people there just treat you with gentle kindness. It isn't rocket science, they just don't blunder about making things worse

[katierocket]

Jesus there are some horrendous stories on here. And yet you so rarely read anything about it in the mainstream media - is there a perception that a miscarriage just isn't that traumatic. Sounds like there is every need for a campaign and a code of practice. Go mumsnet.

[katierocket]

Actually Martionbishop puts it perfectly and it's worth repeating her comments

"M/C is so often hushed up, isn't it? We are encouraged not to tell anyone that we are PG until we get past the first trimester just incase. We are almost expected to hide out loss to save the embarrassment of others.

Which leads to the unspoken (and sometimes spoken) conclusion that it is no big deal."

[cmotdibbler]

The thing is, apart from open access to EPAU (and actually I think that it shouldn't be totally free access, but that it should be easier for GPs to get appointments, and that those with a previous mc should have phone access to someone who can book them an appt if necessary), it doesn't cost very much at all to provide a good service.

Putting an US and sonographer in gynae outpatients or xray dept rather than ANC ? No cost

EPAU situated off A&E rather than ANC ? No cost, plus easier referral route for A&E and extended hours cover.

Training of nurse specialists to perform standard scans for EPAU /out of hours A&E? Low.

Provision of information ? Low - leaflets available from MCA on many subjects at very low cost, plus some local specific information.

The only real cost is in providing aftercare and support, but I think the service at Nottingham found that it could be done by one nurse in addition to other things she did for the EPAU.

But the real difference would just to be treated with kindness and dignity - which costs nothing.