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.

I forgot to say that with my last miscarriage I was scanned and told that my uterus was now back to normal size, so the miscarriage was over (despite having been told 3 days earlier that uterus was still very enlarged after the bleeding stopped) So it was a huge shock when 4 weeks later I finally passed the pregnancy sac.

I had been refused hcg level testing to see if the levels were declining. I had to use the unscientific method of using pregnancy tests at home to watch my hcg levels fall very slowly (they only finally went negative after I passed the pregnancy sac a month afterwards).

A simple thing as hcg blood tests would have shown my levels were dropping too slowly, and I might have been offered another scan to check what was happening. That way the sudden extreme pain and the passing of the pregnancy sac at home, would not have been so tramatic.

It is simple things that could help make miscarrying easier.

at first when I went for a scan, they could find nothing, then an internal scan found a five week sac, hopes up only to be dashed later. that needed more explanation and better handling, because I naturally hoped I had got the dates wrong, even though thinking back it would not have been possible to have had a +ve test when i did and been 5 weeks pregnant, but you just don't think clearly at the time.

more people need to acknowledge that to us it was a baby and it was devastating and just because it wasn't ectopic or further along it was not upsetting.

and that includes you mil did you not think that we might just want to grieve in peace without having to meet up with people on holiday just 2 weeks after and be all nicey-nicey or having to talk about it before we are ready? obviously not or there wouldn't have been that i'm-so-upset phonecall and h what did you think you would achieve by telling me that?

some post miscarriage support would not have gone amiss because sometimes it is odd looking at ds and thinking that he would not be here if all had gone to plan.

I agree with thinking 'abortion' should be edited. And 'missed abortion' feels insulting, as if I was confused or scatty and didn't notice, when the truth is we prayed every day this one wasn't going to give up. "Oops, Jaffa, you missed your abortion."

thankyou so much for doing this. i was treated so badly during my 4th mc.

i was offered counselling for my 'natural spontanious abortion' and the first words out the counsellers mouth were..."so your baby is dead"..... i was 22 weeks pregnant and had to deliver him normally. a bit of sympathy would have been nice at that time and also to not have been placed in the ward with all the new mums and babies.
it is a very important thing to show compassion to a woman at a time like that and when you dont receive any its soul destroying.

This will sound a bit silly but it upset me. After my miscarriage I didn't know what to do with my prescription exemption certificate. I, stupidly, phoned them to ask and was told breezily to rip it up and bin it. It was the only official recognition that a life had lived and died to me, and it hurt. Could an instuction, suitable worded, be printed on said document.

I'm so glad you're doing this campaign. It is so important.

they do now have an instruction to return the exemption card in the post if you miscarry before 24 weeks. I have never found the strength to do this though. Can't they imagine how hard it is to say "I've lost the baby so here is your exemption certificate back" in a letter?

After being told I'd had a spontaneous abortion, I was so angry at the use of such an insensitive term I checked the royal college of obstetricians guidelines and they are clear that term is out of date and considered to be insensitive usage (though medically correct). Shame some folk can't follow their own guidelines.

One thing I think would be worth adding to the campaign is a highlighting the issue of miscarriage in sex education at school. Until I had a miscarriage I had absolutely no idea that they are so common. It was such a shock. It would have perhaps been less of a shock if we had been told at school along with the gubbins about how babies are made and contraception. I know a bit of decent sex ed is never going to make a miscarriage easier to bear, but it might just make it less of a surprise, and help people to understand whey they shouldn't tell family and friends too early on.

Why are you focussing only on miscarriage and not other losses such as ectopic pregnancy, blighted ovum etc?

I have filled in the survey, but about my first mc which was on the NHS.

The NHS missed mc was a v mixed experience - a lovely sonographer who gave me a big hug when breaking the bad news, a helpful hospital receptionist finding me a private room to cry in when I got back from the scan in tears, two doctors who were supportive and helpful. A week later when I went back for the op the different receptionist was grumpy and rude, the nurses were very short with me and made it clear that any problems I had in the days after the op should be dealt with by my GP, they didn't want to know (which makes me wonder if they ever find out what their post-op infection rates etc are), the curtains didn't shut on my cubicle (a small point but really not pleasant when you are having an internal examination on a ward!), when I went down for the op a nurse said "you look happy". The anaesthetist and surgeon however were both lovely.

Second missed mc was private (private scan and private operation). It cost us a lot but were treated brilliantly at every step (including the scanning centre - we didn't have to pay straight afterwards but were told we would be sent the bill to pay later which was much easier). When I had the op (which I had within a day) I had a lovely nurse who explained everything several times and really looked after me. My consultant was also very kind and supportive.

With the second mc, I also had tests done on the baby to find out the cause. I found knowing the reason a huge relief as my due date got nearer - as I knew that due to the chromosomal abnormality that was found, the pregnancy was never going to have got to the due date, if that makes sense (I think that due dates are a real trauma after a mc - sadness mixed with loneliness as so many friends/family have forgotten when you were due, if they ever knew).

Good luck with the campaign.

Survey completed. Thank you. I did weep, but it was sensitive. Let's hope it helps. Here are my small additions or clarifications to your points, but what is there is good.

1. Definite training essential (shame we can't include employer/company HR departments in that). Counselling should be offered and not just make your way to a dreary local meeting of Miscarriage Assoc support to find out you are so many miscarriages behind everyone else. While I was humbled and realised my situation could be worse I did not find it supportive. Also, no assumptions made without fact on what the scan shows. I was told a definite MM. But when I asked how sure they were it fell very short of 100% and those remaining % were important to me so I went back a week later to check. They were sadly right but that % made a huge difference to my choices. Also contact with a hospital chaplain should be offered.
2. Access to scanning. I think this shouldn't have to go through a GP but you should be able to just take yourself for a scan if you need one, or at least contact EPAU direct. This is possible out of hours... so why not all the time?
3. EPAU/Scans should not have people coming out into the waiting room directly on being told the result of scan. A separate entrance and exit (similar to cancer screening) with a place for contemplation/support after would be better.
4. Good. But also information on when and at what point you can change your mind i.e. if you decide to do things naturally and then feel (medical)intervention is needed. Also full information on possible side-effects and stats on how likely.
5. Definite joined up care. Can there be any information to give to employers as well or how to explain it to employers and what to expect. Can there not be bereavement leave? Definite subsequent booking and scan appointments cancelled by HCP.

Good job MN, thanks.

Like Vivid, I wonder why you are only concentrating on miscarriage, and would recommend speaking to Helen Wilkinson and colleagues at the Ectopic Pregnancy Trust for input and their counterparts in other related charities.

My experience was an ectopic, but to add to point 3; in the (long) wait for my laproscopy I was put in a ward opposite a lagy who had bladder problems and was visited by members of her family including three newborn babies. When my Mum politely asked them if they would mind visiting in the family room as I had become so distressed they complained to staff and I was moved for being 'disruptive'.

Like many other posted I waited in an antenatal outpatients department to be seen by the EPU, whilst bleeding. I had to return to the same place for my blood tests a week after my laproscopy.

Access to a private telephone post-diagnosis may seem a small thing but should be added. We were given this, but I imagine it's not always common place.

Joined up care is crucial. I was taken into a different hospital for my ectopic to the one in which I was registered by when first pregnant. This meant that three weeks after my pregnancy and fallopian tube had been removed, I received an appointment for my 12 week scan and a pack of baby info.

Vivid - blighted ovum is a miscarriage. Its just a way of describing a miscarriage, in that it is an empty gestational sac. I have had three miscarriages one of which was a blighted ovum.

Both of my miscarriages have been recorded as "blighted ovum". The first actually wasn't but that's another matter.
Blighted ovum is not an up to date term and I think others have been recommended such as early pregnancy loss or early embryonic demise.

Done,& thank you for this campaign as we really need to be more open about talking about miscarriage and improve the support & service available.

I hope this campaign is a huge success and the outcome is improved welfare of everyone who is experiencing miscarriage. I work for Infertility Network which provides support to all those who experience infertility and too often we hear how badly people have been treated following miscarriages. If we can help with this campaign in any way we will be glad to do so

Have filled it in and thought it was very sensitive.

My situation is slightly different as I had a miscarriage at 5 weeks three months after I lost my daughter to stillbirth. This was never brought up on the phone by the nurse who was diagnosing me, she obviously had not read my notes. She didnt offer me an appointment just told me to get on with myself really and if I had more pain to go to the hospital. I was very distressed, but maybe didnt come across like that on the phone. I think it all needs a overhaul, I got more support and diagnosis on the conception forum here than I did from my GPs surgery. I think the whole of pregnancy care needs to be overhauled, can we also compaign about this on MN? I think the booking in appointment should be handled differently, with more information and talking about miscarriage and stillbirth. I agree with above posts that we should be able to go to the EPU or maybe they are the people we need to talk to and have contact with from the start. I find the book they give you at the booking in appointment is not very adequate. I think the midwife should talk you through what you need to look out for throughout your pregnancy not just leave it to the book. I also think there should be a pack given to you when you tell your gp that you are pregnant, to get you through to the booking in appointment.

I watch these american baby pregnancy shows and also from what my Australian sister in law has experienced they get amazing care, they are scanned all the time, they talk to a doctor through out their pg. They seam to have sympathic support, I know its just telly but it doesnt reflect well on our NHS.

I thought the survey was very sensitively done. Did bring back painful memories but very worthwhile. I also think the Code of Care looks very sensible.

Also maybe it should be changed from miscarriage to early pregnancy loss.

Completed the survey - was actually good to get my point across where it would be listened to.

I had a miscarriage at 8 weeks, but I actually started bleeding the day after a positive pregnancy test. I phoned the on call GP and was met with the response of "Ah well, these things happen", and "If you hadn't done the test you would never have known". This made me feel so insignificant and as if I was overreacting, and it was a week before I finally returned to a different GP at the practice and was immediately referred for a scan the next day. Sonographer and nurses were excellent during the scan, as I had to take my daughter to the scan with me. After the scan I was led into a room with my daughter and left there on my own with her for about half an hour. The nurse came into the room and basically told me I was being sent home to pass the pregnancy naturally and to take paracetamol for the pain. I asked for some sort of medical intervention but was refused. After another week of bleeding I passed the baby in ASDA toilets of all places. I still feel I should have had some sort of medical intervention.

I was pregnant again within a couple of months and now have DD2 :)

Thank you for doing this.

I've completed the survey (well worded and sensitive, thank you) and completely support the 5 points you have suggested. Good luck.

The trouble with point 2 is that with a cash strapped NHS if you increase scanning access for women who are having bleeds in early pregnancy at weekends the money will have to come from somewhere else. If medical staff think a woman's life is not at risk then delaying scanning by a couple of days is not going to really change anything in most miscarriages. It may reassure a woman if the scan is OK, often early scans are ambiguous and you need a later scan and it may confirm some women are miscarrying. It rarely changes what you do on a weekend though, plus you can have a normal scan 1 week and miscarry the next. I would rather the money (which will come from the gynaecology budget) was spent on things that make a practical difference, especially gynaecological cancer treatment. Renaming the ERPC procedure sounds sensible. Training staff in point 1 sounds sensible and should already happen, although it sounds as though many women were thoughtlessly treated. Things have improved alot though with miscarriages no longer routinely called threatened or inevitable abortions.

About time we made some noise about this. Have a thought for the hospital staff though; It must be hard to work somewhere where you're exposed to such loss every day. Perhaps it is fear of allowing it to affect them, or it numbs those who do and that's why so many of us have such devastating experiences at their hands. When you need a shoulder and to be told you are not alone you're isolated and lumped with pregnant people who should not have bear witness to such loss, or worse - people who have chosen to terminate when your world is dissolving.

Done and I like the code of conduct.

Done here as well.

In tears again and especially after reading other stories so similar to mine - I was actually corrected by the scan tech when asking (tearfully) 'was my baby going to be okay' - she said 'it's a foetus actually at this stage but it's not viable and probably hasn't been for a couple of weeks'. It was MY BABY. FFS.

Still makes me feel sick now.

Having said that so many of the NHS staff were absolutely wonderful, it was just the scan where the loss of a much-wanted baby was treated like a routine cervical smear.

The scan tech wouldn't have been deliberately trying to upset you though. I think alot of the problems women miscarrying have is because the medical technology is different to the lay terminology.
The act of miscarrying had been called aborting by doctors and nurses for over 100 years. What lay people call "abortions" are called terminations by health staff. In the days before frequent NHS terminations people had to get their pregnancy terminated illegally and the result of this was an "illegal abortion" but the abortion was the miscarriage, not the procedure that caused the miscarriage.
Most medically trained people automatically call babies in utero foetuses, that's just what they are called, they become babies once they are born, although when I was pregnant I would talk about "my baby" I would expect any medical staff examining me to discuss foetuses and be comfortable with that.
Anyone medical would see "inevitable abortion" "missed abortion" "incomplete abortion" "habitual aborter" on a patients notes and know that these were what lay people called miscarriages.
I think the very early stage at which women can now detect pregnancies adds to the stress as 20-30 years ago you wouldn't detect a pregnancy until about 6 weeks and alot of women miscarry at 5-6 weeks. I didn't really view myself as properly pregnant until I had my 12 week scan as I knew 1 in 5 pregnancies miscarries/ aborts before that stage.