The Mumsnet Miscarriage Code of Care

[RowanMumsnet]

Hello there,

As some of you will know, we at MNHQ are gearing up for of the next phase of our miscarriage care campaign. (For those who would like to know more about the history of this, have a look here and here.) Later this month we're going to be asking you start making some noise about this; we'll post up more details soon.

SURVEY NOW CLOSED, THANK YOU TO EVERYONE - PLEASE LOOK OUT FOR RESULTS SOON (ANNMUMSNET) But before we do that, we have two requests. First, if you have ANY experience of miscarriage, we'd really appreciate it if you could take part in our survey. There are some fairly tough and personal questions in there, and you may find it upsetting to fill out (and of course, we're very sorry if that is the case; do feel free to close it down without completing it if it gets too much for you). We thought carefully about whether to run the survey, and about the questions that are on it. We decided to go ahead because evidence of MNers' experiences is probably the most powerful way to get our point across to politicians, officials and the wider world. Please rest assured that all survey responses will remain completely anonymous, and won't be linked in any way to your MN nickname or RL identity. All the data in the survey will be treated confidentially, and no individual data will be looked at unless you add your details under Question 18. As some small compensation for those who do manage to fill it in, there are free subscriptions to Grazia magazine to be won.

Second, please take a look at the Code of Care (copied in below). We have reviewed the code following your input on this thread, and we've also taken soundings from some professional and campaigning bodies in this area. As a result of this feedback, we've condensed the code from ten points to five, in the hope that this will make it seem less intimidating to those we're trying to influence and increase our chances of making the code a reality. We've decided to take out the point about routine screening for chlamydia, lupus, blood-clotting disorders and antiphospholid syndrome, as we were strongly advised that this was not needed in nearly all cases; and we've tweaked the point about miscarriage information being held centrally within the NHS, as NHS computer systems just can't do this at present . Instead we've included a point about the information being passed on locally.

We have added in the point about women miscarrying at home being offered adequate prescription pain relief, because so many of you on the previous thread made this point.

So, before we send it out into the wider world, we wanted to run it all past you again. Does the revised code (copied in below) do the job? Is it a good way to get our points across, gain support and start the long journey towards actually putting this code into practice up and down the country? Do let us have any feedback.

Thanks,
MNHQ x

1. Supportive staff

GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication techniques (including things NOT to say to women who are miscarrying), basic counselling skills and the psychological effects of miscarriage. Follow-up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage.

1. Access to scanning

Access to scanning facilities in the case of suspected miscarriage should be easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units at all times as standard. Those who are miscarrying naturally at home should have the option of a scan to check that there are no ongoing complications.

1. Safe and appropriate places for treatment

Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. EPAUs should be sited in hospitals' gynaecology, rather than antenatal, departments or next to A&E departments, to ease women's referral route. Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in antenatal or labour ward settings.

1. Good information and effective treatment

Everyone who has a miscarriage confirmed should have the three options explained to them: 'natural' miscarriage; medication to speed up the natural process; and surgery. What each option involves, the amount of pain and discomfort that might be experienced, and the likely timescales for each should be explained clearly, sympathetically and honestly either by trained medical professionals or in a leaflet. Women miscarrying at home should be offered appropriate prescription pain relief. In the case of miscarriage occurring in hospital, doctors should discuss with the parents what they wish to happen to the foetus (i.e. it should not be disposed of routinely without prior consultation). Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting.

1. Joined-up care

Community midwife teams and GPs should be informed immediately when miscarriage has occurred, and subsequent bookings and scans cancelled, to avoid women who have miscarried being chased by HCPs for 'missing' pregnancy appointments.

All done. It's nice to know that you guys are trying to improve the way miscarriage is handled. Thank you.
I genuinely believe some sort of sensitivity training may be useful too for sonographers given that they are the often the person breaking the news of a mc to many. All too often they don't know what to say themselves - perhaps they would welcome a bit of support with this? Plus having experienced a molar pregnancy it would be nice to see the information provided improved (anything would be better than none!). I appreciate it may be rare but even a printed off leaflet with some basic information would be better than being left to google information at home alone.

Done.

I think it's point 3 that resonate with me more. I misc when away from home, volunteering. So I had to visit the local A&E. Following day had to wait in antenatal, had scan told 50/50 whether I was misc. Told to stop crying! And told to return to antenatal while they dealt with notes. Misc two hours later. Did not return there as could not face it.

Went to A&E as recommended when we got home (bleeding was heavier). No information, put in tiny room with lots of gynae equipment for ages presumably until staff finished lunch. Don't mind that, but it would have been nice to have been told/warned that it might take a while to see someone. You're surrounded by all that equipment and your imagination goes into overdrive.

Following day in antenatal for a scan. Taken straight to cons as apparently no hormone left in my wee. Had to leave after that news, straight through/past happy mothers. What bugs me most in that particular clinic is that if they have bad news for you, they try to make you wait until all the 'happy news' is delivered to everyone else, so you leave after everyone else. Bugger the fact you've taken time off for an appt or that you'd like some time to sit and deal with stuff before you have to return to work - no, you're left there for up to 90mins after your appointment slot. If it is that big a problem for the NHS, kindly either see us elsewhere or give us another door to leave from.

Point 4
It took almost a week to find out whether I had actually miscarried or not. The only information I was given was 'we don't know, come back for a scan tomorrow', and 'if the bleeding gets heavier, call us'. It was an issue that scans could not be done on the same day - it just delays everything by another day (plus another day lost in travel & waiting rooms). 45 mins each way to hospitals, plus the 3 hours or you just spend waiting not being told anything. The first time in A&E, the doc came to see us, said he'd be back in a few minutes and promptly took a group of new docs on a tour of A&E, did his speech and then came back to us. I know this stuff has to be done, but why does that take priority over a woman terrified she is miscarrying? At every point no-one was willing to confirm if I was miscarrying, or what would happen if I was. I was absolutely in shock when the foetus 'passed' as I had no idea of what would happen, just that I was bleeding while pregnant and that it could be a misc.

Just in case anything thinks this is old history, it was less than two months ago. PLEASE SUPPORT THIS CAMPAIGN and GET THINGS CHANGED.

Cleas, I had a molar pregnancy too, I was told the baby with heartbeat that we'd seen on a scan at 6wks 'just wasn't there' on a scan at 11wks...
No one could give me an answer to where it had gone Infact, I was asked at one point if I was sure I was pregnant!
It seems no one at Salisbury hospital knew about molar pregnancies and I only found out that thats what I'd had 2months later when I got a phone call from Charing Cross hospital who had become involved when tests had been carried out on the 'products of conception', as they phrase it, after the ERPC...

I was left totally in the dark for 2months, just as we were starting to pull ourselves together after my 2nd miscarriage in 7months, they then dragged it all back up and I had to complete the 6months of tests.

So, my point... is that I agree, although not very common, there should be more information available regarding molar pregnancies rather than being scared silly by Dr Google.

Things really need to change.
In my local hospital, where I was treated for missed miscarriage in April, the EPU is in the bloody maternity ward! Talk about insensitive, looking at all baby posters when you know you have just lost yours.
I had the misfortune of miscarrying over that time when there were 2 long bank holiday weekends in a row. So I couldn't be admitted to the EPU for the day and went to gynae ward for the joy of medical miscarriage. I had not been properly informed about the horrors that awaited me (period pain my arse) and much of the time, the staff were more interested in watching the Royal Wedding on television.

Thankfully I have had some better treatment at the same hospital. I'm pregnant again and the EPU have been kind and reassuring. However, in the lead up to this point, guess where the recurrent miscarriage clinic is held? That's right, I had the appointment in the maternity wing and had to wait in the antenatal outpatients area looking at people cooing over their scan pictures. Very thoughtful.

I am lucky that I was able to afford a private scan at 8.5 weeks as I was turned down on account of "not having enough miscarriages" to qualify for one.

Having a miscarriage changes everything. Every scan for my DS was exciting and interesting. Every scan for DS2 (post miscarrage) was nerve wracking and tense. Having a scan at 8.5wks made all the difference and should be available to everyone.

Good old Mumsnet. Ignore the critics - this alone justifies your existence!

TBH given the choice of lying next to dying gynae cancer patients or a single bedroom off a postnatal ward, I would pick the latter any time. This happened to me and it was much more cheerful being surrounded by good vibes than seeing other people near death and feeling unentitled to grieve as my problems were in the bigger scheme of things somewhat smaller.

I'm not sure that I'd want to announce a pregnancy earlier. When I was trying for DC2, I had to tell some close friends that we couldn't go on holiday with them because I was pregnant. I was only 6 weeks, and had had two mcs in the previous months. I told them, but absolutely didn't want congratulations, because I knew there was a good chance that I would have another mc. Sadly, I did mc a couple of weeks later, and I found it quite hard to have to tell them that.

However, my next pregnancy did go full term, and since having DS2, I find it much easier to tell people about my miscarriages.

My first miscarriage I had ERPC and in that hospital it was done in the day surgery unit so nowhere near either postnatal or gynae. That was the best way. When I had to go (in a different hospital) into the maternity block in order to miscarry, it was just awful. I also think it is crap for the gynae patients to be treated in the maternity block as often they have things that leave you infertile.
My hospital has a "lump all women's shit together in this old building" philosophy.

boffinmum and kat2504, that's a good point about locating miscarriage services in with gynae. The gynae wards have people with serious cancer etc. Those patients might find it upsetting to have women with m/c on the ward.

They should find something else to call ERPCS. When I found out what it stood for I was really upset. My 12 weeker was a baby not a product

I forgot to put that when I was going to see the recurrent miscarriage consultant, scans for his fertility clinic, and recurrent miscarriers were done in the antenatal clinic. Just where you want to be in either of those groups. And even though it wasn't general AN time, the staff weren't allowed to switch off the 'baby channel' TV

Yup same here CMOT, the recurrent mc clinic in the antenatal department is unecessarily cruel. Is there really no alternative to this?

That said the doctor we saw in the rmc clinic I was very happy with, she explained everything, talked, gave us time, listened and referred to our losses as babies. Not 'products'.

Our hospital actually does have another ultrasound dept in the main building. presumably they use this for people who are having other parts of the body apart from the uterus scanned. So why can't they send the rmc patients there if they are having a pelvic ultrasound when not actually pregnant? They could even put the EPU next door to it. But no. They decide to use the antenatal scanning clinic instead.

My hospital has a special department for women with pregnancies that are not going well.

It has a couple of rooms for consultations, a separate waiting room, it's own toilets, it's own scan unit and a small 4-bed ward.

It's not a very happy place to be. But at least all the patients, families and staff are coming from the same place.

Done. :( but :) it's being addressed. Good luck MNHQ.

Our local EPU doubles up as an overflow ward from the gynae unit. I didn't realise this at the time I was in there, so was a little puzzled at the 80 year old woman in the bed next to me. I don't think medical science enables geriatric pregnancies just yet.

They should find something else to call ERPCS. When I found out what it stood for I was really upset. My 12 weeker was a baby not a product

Exactly. I cried so much when they used that term. I lost three little boys, all brothers at 16 weeks, together in 2005 and had to have surgery to remove what was left.

That in itself was horrific, but being told what it is called was far more harrowing to bear. Such a brutal phrase. Truly sends shivers through me.

I totally agree that the name for that' procedure' needs to be changed. It was clearly thought up by someone who isn't a parent or doesn't have a single sensitive bone in their body.

I have done the survey and would like to thank MNQH for the wording used and the questions asked. Very well done.

'MNHQ' even!

I had completed the survey but not read all of this thread because it will make me cry and I am getting the tea ready! Apologies if this has already been mentioned, but please can you put something about molar pregnancies and miscarriage somewhere? My second miscarriage was a partial molar pregnancy and even now, five years later, I find it really upsetting that no-one knows anything about it or how distressing the ongoing monitoring can be. At the time, I felt like a freak every time I had to explain to anyone and it still frustrates me now.

All done : )

Survey done.
I agree with all the points in the code

1. Please clarify that supportive staff applies to what is said in subsequent pregnancies too. My 3rd pregnancy after two MCs was just horrible but no-one acknowledged how I was feeling about it at all.
2. My 1st MC happened over the Christmas period. I really just wanted to know what was going on/ if there was any hope/ what to expect. The 1st on call GP was kind but had nothing to offer me. If EPU had been open I wouldn't have had to soldier on feeling so alone, unsure and frightened. As it was when I called back because the bleeding was heavier I got another GP whose attitude was basically 'why are you wasting my time, nothing can be done'. When I asked him if I should go to hospital he said 'not unless you pass out!'
3. It is just so unacceptable that I should have to cancel my own scan appointment. I will never forget screwing up the courage to ring, fighting back tears to say that I wouldn't need the appointment and then being asked 'for what reason?" and having to say the words to some random receptionist.

I agree with what was said about breaking this taboo of never talking about it and not letting anyone know about a pregnancy until 12 weeks.
My first miscarriage I basically only told my dh, my mum and my sister. No-one at work and none of my friends. I missed out on a lot of support doing that and people must have been at a complete loss as to why I was so often on the verge of tears. The second time I was much more open and was surprised how many people I knew who had also been through it and how kind people were. By my third pregnancy I told anyone who I wouldn't mind knowing about a MC quite early on and now I will talk about my experience if it comes up eg if people ask why there's a big age gap between our children.

I would also have liked a photograph of my early scan, I did ask for one but they said they didn't do it for the early ones, only the 12 week ones. We got referred because I'd lost my symptoms and the blood tests showed my hormone levels weren't doubling in the right amount of time. We went in thinking they would tell us the baby had died, but instead she found a heartbeat! We were so happy. The sonographer mentioned the sac was very small, but never said anything about what that could mean. Maybe it's not her job or her place, but I wish we hadn't been allowed to hope.

When I got home I googled and found a research paper that said a small sac is a very good predictor of miscarriage. That was on a Friday and I started having pain and bleeding on Sunday, MC on Monday. It was such a roller coaster. I just wish at that scan, someone would have said to us 'Based on the blood tests and the small sac, this pregnancy might not be able to continue'. Instead we walked out floating on air, only to crash down even harder.