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...

[OracleInaCoracle]

Firstly, Im so glad that this is being bought to the attention of the powers that be. and tbh there is nothing I could add. these stories are all so sad...

[Monkeytrousers]

I have nothing to add but just wanted to say thank god. This is one of the areas where explicit misogyny is allowed to reign.

[spicemonster]

Oh god chunkychips you've just reminded me. I was brought by ambulance to A&E as I started bleeding really heavily at a wedding and they called me an ambulance. When I got there, they wanted me to sit in the general waiting area, in my wedding outfit covered in blood, just bleeding everywhere until I could be seen (and obviously I wasn't an emergency). It was only the woman paramedic (thank you Cheryl) who insisted that I be given a trolley in the actual A&E while I waited to be seen that saved me from that ordeal.

[yurt1]

I had a m/c that was actually handled quite well. The EPU was easy to get a referral to and was situated on the gynae ward. I was allowed to be given a chance to m/c naturally (which I did) and had easy access back to the EPU to check that everything had gone.

All the waiting was done either surrounded by people going through the same sort of worried, or older women in for hysterectomies who clucked over me.

It presumably didn't cost much to site the EPU in gynae rather than maternity and perhaps made it all much easier.

[EBenes]

I found all the medical people I came into contact with very nice and helpful. They were sympathetic and kind. I was happy to go away and let the miscarriage progress naturally, with no intervention to speed things along. However, the one thing I would have liked was more warning about how much it hurt. I was told it would be 'like bad period pains, but that seems worse to some women if they've been taking the pill and aren't used to period pains'. I haven't been taking the pill and am very used to period pains. I thought I was going to die from the pain, and if I hadn't been staying with my parents (my mum is a practice nurse) I would have panicked a lot more than I did. As it was, I passed out for a few seconds and couldn't believe the pain. NOT like period pain.

Also, I asked, quite lightly at the time, if I would see 'bits of baby or anything' and was, again kindly, told oh no, nothing like that. I saw a whole baby. It took me a long time to get over the guilt.

I know it's important not to scare people who won't have these experiences, but when they come without warning, they are terrifying and so, so sad.

[Spidermama]

Great campaign.

I've had two miscarriages. I'll never forget the trauma of being told at the scan the baby was dead then coming out into a room of pregnant women and trying not to catch their eyes.

I'll also never forget the A&E woman getting increasinly irritable with me because I didn't want to have any pain relief. For me it's important to feel my body's signals, especially at such a scary time. I need to know what's going on so I can feel in control.

In the end she said, 'Well I don't know what on earth you're here for then'. Feeling small I let them give me pethidine and it was horrible. It made me feel sick, did nothing to alleviate the pain of the contractions, and denied the the opportunity to recover in between them.

It went by in a haze and I had months of confusion, asking dh questions daily, trying to make sense of it and wondering where my dead baby had gone.

I learned to stay away from the hospital and had my second miscarriage in the comfort of my own home with a basin. It was a world away from the horror of my first. Yes I was sad and bereft at my loss but I kept the sac and gave it a proper burial myself which helped enormously with the grieving process.

So my second idea would be to encourage hospitals to try to get anything resembling the sac or even some other contents so that there can be some form of physical letting go.

[expatinscotland]

Sorry, coming late to this thread.

Please DO NOT locate women who are actively miscarrying or waiting for their ERPC in labour wards.

They are not in labour. They are losing their child.

It's not that difficult to locate them in a GYN ward.

And yes, I agree completely with Carrie, it's incredibly insensitive to have women with threatened miscarriage waiting for their scans in antenatal clinic waiting rooms or coming out of their scan to face a corridor of pregnant women.

If you're doing this to cut costs, I can assure you, I cost the NHS much more than they saved having to make trips to my GP and psychiatric consultant for depression resulting from my experiences. I drank loads, too, to blot out the experience, that could cost me and the health service pretty big time later on.

[berolina]

Just been catching up with it. So much misery, indignity and lack of care Am speechless.

I do think HCPs dealing with miscarriage would do well to remember (thus have this point emphasised in their training) that they are dealing with a woman's loss. My one experience of real insensitivity came during the confirmation of my first mc. I was understandably upset and crying. The doctor asked me my age and when I told him, said 'oh, you're young, you can have plenty more'. Factually he was right, but the undertone was very much 'get over yourself'. The rest of my care for that mc was fine.

I have always found it helpful, as a sufferer of repeated but not recurrent mc, to be reminded that mc is a sadly very common event and that there is a huge potential for things to go wrong - but also go right - in the very early stages of pg. My lovely, empathetic but matter-of-fact gyn said after no. 3 that his old boss used to say '10 [successful] pgs [go along with] 10 mcs'. That sort of being able to contextualise my experience helped me. It would probably be just the wrong thing to say to others. It is important for HCPs to look at the individual woman and what might help her now - of course it is not always possible to know in detail, but you can often get a very good idea quickly -, and above all avoid anything which makes light of her loss.

[charliecat]

what expat said.

[expatinscotland]

FWIW, after my m/c, I was again sitting in the SAME CORRIDOR waiting for another scan due to bleeding in this pregnancy.

Full of preggos.

And there was a consultant and a midwife discussing a woman whose pregnancy was ectopic. Right there.

She was just around a corner!

FGS. I felt terrible for her and peeped in just to tell her I was so sorry this was happening to her and that some people at least understood how awful that is. She wsa sitting there in tears.

[chunkychips]

I agree EBenes, wasn't expecting the pain, mine were exactly like labour pains. Awful to read what people have had to go through. It's just a deeply shocking experience. Also agree with expat, repercussions go on for a long time.

[chunkychips]

I agree EBenes, wasn't expecting the pain, mine were exactly like labour pains. Awful to read what people have had to go through. It's just a deeply shocking experience. Also agree with expat, repercussions go on for a long time.

[Blandmum]

Its the almost casual brutality of it all that beggers belief, isn't it?

Yes, we all know that it happens, we all know that it isn't uncommon, but for each of us it is an individual loss.

How we recover depends so much on how the whole issue it handled. It isn't that you want a huge fuss but simple respect and compassion isn't too much to ask for, is it?

My mother had a M/C 50 year ago, mine was 13 years ago, and not seems to be any better now.

How utterly dreadful!

[evenhope]

I've had 2 missed m/c. The first was at 10-11 weeks. I started bleeding (bright red) at a wedding on a Saturday. Didn't think it was worth going to A&E at the weekend so left it until Monday morning. We were due to go away Monday afternoon.

Having left it until Monday the EPU's lists were full with people who'd gone in over the weekend . At our hospital you have to shout all your details through a glass screen, so everyone in the waitingroom hears your business. I complained about that. I was seen by a junior doctor who put me in a bed then went off to "look for a tape measure" (?) There was no scan available and no midwife so the doctor came back with an appointment for EPU the next day.

We decided not to hang about and miss the first day of our holiday but when we got there the bleeding was worse. Rang NHS Direct and they directed me to the nearest hospital. They were lovely. Reception was private and they took me straight through. We'd arrived at shift change so we had to wait but they took me to the gynae ward and found a portable scanner. It was quite clear there was nothing there but they gave me an appointment for the EPU a couple of days later.

Their EPU was nowhere near the AN area. I was scanned again and they were very sympathetic. I saw a doctor who explained what would happen next and what the options were. He told me to wait a week then ask to be rescanned but just before that I started to bleed heavily (on a BH).

Back to our A&E. Called in to triage and the blood shot down both legs. I had to ask for something to clean myself. Got put in a room and left. They had no pads (I'd taken loads but was soaking through 2 an hour) and nothing to clean up with. Then they wanted to take more blood.

Once I got onto the ward (was admitted immediately) everything went smoothly and everyone was lovely.

Second one went in the same way and had to book ERPC for the next week because they were so busy.

Main complaints related to dignity, privacy and compassion. A senior midwife told us we were too old to have another baby after the 2nd mmc and to go away and do something else (We went on to have our DD 12 months later)

I was surprised at how much blood there was- that would have been useful to know.

[kittywise]

I've had 6 m/c's and a lot of the time I referred myself to the epu, they didn't ask any questions and were really great.

Women who are miscarrying or suspect they are need to get answers QUICKLY and have any necessary procedures done QUICKLY.

I must say here in Brighton they are very good

[Blandmum]

I wonder if doctors would be surprised at the depth of feeling in this thread?

I don't mean that in a nasty way.

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.

I find that you can immediately tell if a woman has had a MC when she hears the news of some other woman's loss. Those lucky people who have never had one say things like' Its natures way' or 'Never mind'. Those who have say, 'Oh God, I'm so sorry'

[sfxmum]

every time I mention my mcs to women I always end up hearing their stories, like you say it is all hushed up and it really should not be, the loss and grief is real no matter how common and sharing it really eases the burden

[sphil]

Completely behind this campaign.

I had two m/c before having DS1 and 2. The first at 7 weeks was handled with great sensitivity. The second, at 17 weeks, was not. M/w couldn't find heartbeat and sent me up to the local hospital for a scan. However, it wasn't a regular pregnancy scanning day and the sonographer on duty wasn't at all keen to do it for some reason. I had to stand outside the door listening to her and the consultant arguing about whether she would do the scan or not. When I eventually went in she avoided eye contact with me for the whole time, even when she told me the baby had died. The consultant met me outside, told me he was sorry and then left me alone in a room for 25 minutes! I eventually wandered into his room and asked if I could go home - he was so surprised to see me I really think he'd forgotten I was there.

I was told I had to deliver the baby because it was a late m/c. The m/wives at the hospital (Royal Sussex) couldn't have been more lovely. However, after the baby was born they told me that he/she had probably died at 12 weeks and I could have had a D and C. I've always thought that the sonographer (or the consultant) should have been able to tell that from the scan and I could have avoided going though labour.

[ClairePO]

That's very true Martianbishop - I immediately knew my boss and his wife had been through it as he was so incredibly understanding.

I think of a comment I read today on the mc section directed at a dear lady who had lost her baby, 'you shouldn't have got your hopes up until you were 12 weeks' (comment in rl not on mn obviously). God how awful. From the minute you find out you're pregnant its a baby. How can you not get your hopes up.

[chunkychips]

Yes, you do get a different response from people who've been through it definitely. Have never understood the 'don't tell anyone until you've got past 12 weeks'. If something does happen and you m/c the people you would have told you were pregnant are the same people you will want to talk about it to if you do m/c. It's not as if it's something to be ashamed of.

[JodieG1]

MartianBishop - From an early post you made, I remember that feeling, hoping against hope. Brings it all back. I remember bleeding in the bath and begging/praying that I wasn't losing my baby. It was awful.