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.

Yes I know these are medical terms but it does not help to hear them when you have just been given bad news and are in a very distressed state. People who work in this area must see how upset women get and have a bit more sensitivity.
And we do know that 1 in 5 pregnancies miscarry in the first trimester, but many if not most women start to imagine a baby as soon as they know they are pregnant. Early testing is in part a cause of this, but I did not need a test to know that I was pregnant at 6 weeks. I think in the past a lot of women did know they had lost a baby, but it just was not recognised by the medical profession.

2rebecca I think you're being quite unhelpful. People who have suffered early pregnancy losses for the most part fully understand what the medical terminology means but as kat says its about sensitivity. Its just the attitude that you show that MN are campaigning against. And as for not thinking of it as a baby, well good for you, clearly others can't be so cilinical with respect to their pregnancies.

Your post has really pissed me off. Is 'habitual aborter' really a term to bandy about on a thread like this?

I only posted it because someone earlier in the thread had been upset at seeing the term on her notes. These are medical terms, to a doctor it's just like calling a chest infection bronchitis or pneumonia or a sore throat pharyngitis. It's just medical terminology. It isn't meant to upset people. Most doctors and midwives will be talking about miscarriages to the patient, but many othen will still be writing "spontaneous abortion" in the notes because that is the correct medical terminology and has been for many years.

It made me feel like "aborting" was some sort of "bad habit" that I had. Like, ooh shit I just can't help my self from aborting my babies. Even the guidelines on these terms have changed and professionals are encouraged to use the new terms.
And it wasn't just written on my notes. This doctor said it out loud to me. When I was having a miscarriage. Fortunately the consultant I saw was more enlightened and they use recurrent miscarriage rather than calling it a clinic for habitual aborters.

The Code of Care is very good but like 2rebecca I'm not sure about the scanning.
To have a 24 hr scanning service with rapid access would only be feasible in very,very large hospitals. Similarly 'purpose built' units (separate waiting rooms,exits etc) would only be feasible if there were only a very few of them in the whole country
Would women want to travel long distances to access them?

2Rebecca, I think that you're clearly demonstrating why the Mumsnet code is necessary.

Of course the medical profession is not deliberately trying to cause upset, and yes these are the medical terms; but part of what makes a good medical professional is being senstitive to the differences to the patient between technical and layman's terms, and why what is appropriate between medical professionals can be unhelpful and upsetting for patients.

2rebecca - I am confused by your attitute. Am I a habitual aborter or have I not been "properly pregnant" 11 times???? As I did not reach the wonderful 12 week mark but only got up to 11 weeks, - was I never properly pregnant in your view???? So the scans showing a feotus with a heart beating,,,,, that is not a proper pregnancy in your view......!!!!!!!!

I have a medical background and personally, do not have a huge issue with the medical terms written in my medical notes, but I have huge issue with you suggesting the correct way that I should be thinking was never (to quote your words) to consider myself "properly pregnant until I had my 12 week scan as I knew 1 in 5 pregnancies miscarries/ aborts before that stage."

I was pregnant each time, and there is no such thing as "Properly pregnant", you are medically pregnant or not. Having a miscarriage or abortion, does not mean that you have to put up with ignorant statements such as yours that try to minimise the grief of the premature loss of a pregnancy.

I am sorry if my last post comes across as , I did not mean it that way.

But I have come across some doctors who try to tell me that only 4 of my 11 miscarriages were important, as they got passed the 5/6 week mark. Those other 4 were somehow superior / more important as they got nearer to the 12 weeks. Just because medically the earlier ones in the past would not have been detected and that they are very likely due to genetic errors and it is the natural way for the body to deal with it by spontaneous abortion, does not mean that that pregnancy did not occur. It was still a pregnancy that was lost, no matter how early. I think it is this point that the doctors sometimes cannot understand.

And yes, I admit that the earlier pregnancy losses are easier in some ways. Physically they are easier, mentally is it less time wondering "will this pregnancy go to term this time" and emotionally it is easier as it is less time building up hope that "this is it, I might have a baby at the end, and how will it be having that baby in my arms".

Earlier pregnancy losses are easier, but they are still pregnancies and still involve a loss of that pregnancy. How much hopes and dreams and emotional investment in that my vary from one woman to another, and in my case from one pregnnacy to another. But each one is a loss and should be recognised as such.

I had a 6 week loss that caused me much heartache and emotional pain but no physical pain, whilst an 8 week one that although physically more to deal with, was emotionally much easier. I have had 5 and 7 week pregnancy losses that I barely noticed, in emotional terms as I have not had the energy to put in any emotional investment more recently. I no longer think that a pregnacy means a potential baby. But it still hurts for people to assume that language used by medical people does not matter, it is the attitute that they have that really hurts sometimes.

Thanks for posting the revised Code of Care - a lot of thought has gone into it. Some points about the Code as it is now:

1. Supportive staff - this does seem to vary a lot, with some staff seemingly unable to use anything other than medical terminology and not want to acknowledge the humanity of our losses. Perhaps they do this as a way of detaching themselves and getting through their working days - and maybe this point should be expanded to include some support for the staff as well, so that they have a way of getting support should they need it. In my experience, staff who "get it" and use sensitive language get it because they've been through it themselves - it shouldn't be a pre-requisite for sensitive care. Scanning staff are particularly key as they are in the front-line and are usually the ones who have to deliver the bad news.

There is also usually no information at all on walls or in leaflets about support organisations such as the Miscarriage Association, Ectopic Trust, Antenatal Results and Choices, or the Stillbirth and Neonatal Death Society, and remembrance services - in hospitals, which perpetuates the feeling that you're the only one in the world this has happened to.

Regarding the follow-up appointments - some hospitals have midwife counsellors but this isn't a standard post in all hospitals - and it should be, if the follow-up appointments are to be offered, they should be with suitably trained personnel. Not sure if this service could be offered without extra cost being incurred. If a hospital is handling 30 women a day who miscarry, where are the staff coming from who could offer a course of counselling? There's also the issue of place: I did not want to return to the hospital where I lost my baby, so soon after the event. There is also the question of who provides the support - personally, preferred to get support from someone who had been through losing babies herself, not a mental health professional. I didn't see my grief as something that needed counselling, but empathy.

Also, some women just want to get out of there and not go back and may not wish to have such follow-up, and certainly wouldn't want a phone call coming out of the blue. It would be more sensitive to make this a service that people can opt into, and be given the option of whether they would wish to have such followup, and if so, whether they would make the call themselves or wish to be contacted by the hospital.

1. Access to scanning - a tricky one because I do agree with the principle of on-demand scanning 24/7 not just Monday to Friday 9-5, but on the other hand, found scans very stressful regardless of the outcome, whenever I had them. I would have prefered to also have the option of having blood tests for HCG level monitoring as a low-tech alternative that could be done at the GP surgery and not require a hospital visit. This would of course have to be repeated 48 hours later to check what the HCG levels were doing, with a scan being ordered if the levels weren't doubling or trebling.

1. Safe and appropriate paces for treatment - totally agree about facilities being separate - not sure how this would work though because I know of women who have found being in a gynae ward distressing too - maybe the answer is to have all care in Early Pregnancy Units that have ultrasound facilities, and beds for care pre and post op/medical miscarriages.

I would also like to have more clarity about what scan operators tell women they are scanning - they cannot say when our baby died, just from one scan, as the sac shrinks when the baby is dying or has died because the level of amniotic fluid falls, which is how they can tell when there's a potential problem. So hearing that the sac is the size of a 6-week pregnancy not 12 weeks doesn't mean that the baby died at 6 weeks - it means that the sac has shrunk to the size of what a healthy sac measures at 6 weeks.

1. Good information and effective treatment - not all hospitals can offer a medically-induced miscarriage (where you're given medication not surgery) and so having all three options available everywhere would eradicate the current postcode lottery.

There should be a national standard set of leaflets that are given out, and options talked through: at the moment, each trust/hospital produces their own, and that seems unnecessary and inconsistent. There is of course the difficulty of absorbing information when your brain has just been scrambed by hearing the worst possible news (that your baby has died) - and being asked to make a choice about how you want to lose him/her.

There is such a wide range of experience in terms of losing a baby at home, and how much blood is lost, but in my experience calling it "like a heavy period" is ridiculously misleading.

I agree that the question of what happens to the baby should be discussed - although I would prefer to not see the word "foetus" here - no-one says they're expected a foetus - I think we should be given the option of attending the cremation that the hospital arrange, or having them back, or having our own cremation. I did the latter with the help of the hospital chaplain when I had surgery to remove my baby, and found that very comforting. But I appreciate that not everyone can face this - I would just prefer it to be given as an option to everyone.

The name of the procedure - I agree that ERPC is dehumanising but it is making the point that it's not just about removing the baby, it's about removing the placenta and the chorionic villi and everything else that was created during the pregnancy. This is particularly applicable in cases where the baby has actually already been lost but surgery is needed to remove the placenta etc. I'm really not sure what it should be called instead.

I think that there should be mention of testing the baby's remains for chromosome analysis (to see if there was a chromosome problem with the baby, either inherited or a one-off) as well as for molar cells - and also, that the placenta should be checked for evidence of a blood clotting disorder. I appreciate that this may not always be possible, but as samples are routinely sent to histology for testing for the presence of molar cells, then why not have these as standard as well?

1. Joined-up care - sounds great in principle but what about cases where the woman does not actually want people to know, not even the doctor? I think this should be an optional element rather than an automatic one, to give women the control over the information.

On a general note, I'm puzzled as to how Mumsnet sees the Code of Care working in harmony with existing support organisations - reading the Code does create the impression that there is nothing in place at the moment. Sorry if I've missed another thread where this was explained, but I'm puzzled as to why the Miscarriage Association and Ectopic Trust are not included in it (and indeed, are missing from the Questionnaire). Does Mumsnet hope that all women's needs for care should be met by the NHS? I ask this because I assume that the Health Minister will ask!

I had a mc in August at 9weeks. I had bleeding with DC1, so I wasn't overly concerned. When it got heavier I went to my GP and they booked in an emergency scan - the first appointment was 3 days away! I spent those 3 days not knowing if my baby was still there. At the scan the sonographer was very sensitive and kind, but there was no mention of pain relief. She described it as period pain, which I cope with pretty well. The cramps the next day were very painful and shocking.

I agree with Mamadoc upthread, having to cancel my future appointments was very distressing. I had 3 to cancel and the diabetic ante-natal was the worst. The receptionist kept trying to make me rebook the appointment, even though I kept saying that I didn't need it. I had to say that I had a mc several times to get through to her. Why can't the hospital that confirms the mc co-ordinate and cancel those appointments for me?

From the experiences on here, staff behaviour seems to be a key issue, perhaps there's more the code could say about this.

I still think that some of the more costly things in the Code need proper, evidence-based justification.

I have not read all the thread and clicked on it because I work in an A and E dept and have to deal with women having a miscarriage. Luckily now we have a GAU and women tend to go straight up there once we have assessed rather than wait in A and E. I have had very little training on this and always feel inadequate when it comes to helping women having MC. Most of the nurses never know what to say and although some may come across as being uncaring a lot of the time that is not the case. We just don't know what to say to make women feel better as everyone is different. I find it heartbreaking seeing women go through such a difficult time and it would be good to know what we can say to make it better or should I say less traumatic. I would also like to know what not to say!

Done. And it made me cry. And I forgot to include this.

We lost our son after 20 weeks, but at 8 weeks I had an early bleed.

I was admitted to hospital for a check up and sat in a room used for storage for two hours before being seen.

I was then moved to a cubicle in A&E and then moved out again because they needed the area for some joyriders who had crashed their car. There was no space for me anywhere so I was wheeled on a trolley to a corridor, opposite the lift, within sight of the waiting room and beside some chairs where the families of the joyriders had been seated.

I laid on the trolley and sobbed my heart out thinking our baby was gone while two or three different families argued with each other about whose fault it was their children were in hospital.

Staff and patients were coming and going, many of them staring at me and the rowing families and my DH wasn't told where I was, he came back from the toilet and I was just gone. There was a screaming teenage girl in my cubicle and he thought it was me screaming through the curtains and was sure our baby was dead.

Finally a doctor came and told me that they thought the bleeding had stopped and that I would need to come back for a scan two days later to find out if I was still pregnant. She also pointed out that at 8 weeks there was nothing they could do and if the bleeding started again it would be better for everyone if I just stayed at home to get on with it or wait for the scan if the bleeding didn't start again.

The scan gave us good news but for those two days waiting I felt terrible and was convinced the baby had died and nobody cared, and that I had lost him while taking part in some kind of side-show of entertainment for the people in the waiting room who were watching me cry and those other families argue.

I think that was the first sign of problems, our son hung on until past 20 weeks but my first scan (done at 15 weeks rather than 12 because we moved house) there were signs that something was wrong that I believe were overlooked by a scan technician who was very rude and dismissive of my concerns when she put my pregnancy dates back by over three weeks.

I don't think that anyone who may be miscarrying a baby should be left to do it in a corridor and made to feel as though they are wasting the doctors time by being there.

"but my first scan.."

Sorry, that should say second scan, although it should have been the first one/12 week one if not for the bleed and the early one at 8 weeks and the house move that delayed it.

Happylander the others might not agree, but I think a sincere "I am so sorry for your loss" is probably the kindest thing you can say to a woman going through this. Acknoweldging that it wasnt just a foetus, that the woman has experienced a real bereavment that hurts is all most of us want at the time. What not to say is "it happens to loads of people" and "you can always try again".

I would like to see more honesty regarding the choice between having a d and c or erpc I think its called and a natural miscarriage. I was told it would be a bit painful and I would experience some blood loss. I ended up in screaming pain as the baby got stuck and having to have emergency surgery from a haemmorage. It made it all so much worse and had I known there was even a slight risk I wouldnt have made that choice. It was so bloody scary.

The one shining light in the whole process for me was afterwards. I asked for the baby back to bury and the vicar came to see us. More then anyone else he was so kind, compassionate and understanding, taking the loss seriously. Every woman should be given the chance to let go of their baby and grieve. I am not even remotely religious but having a funeral gave me a chance to acknowledge the loss of the future I had so longed for.

I agree, just saying "sorry for your loss" is the kindest thing, without trying to find some optimistic side. There is no bright side at the time for the woman. Those things about how common it is and how the next pregnancy has a good chance can wait until the worst is over.

I agree that 'I'm so sorry for your loss' is about the best you can say. Although if you're not 100% sure that it's a mc (as happened to me in A&E) and have no means of verifying it, I think all you can say is 'I'm so sorry, it looks like a miscarriage but you will need to have a scan to make sure'.

Hello everyone,

Thanks again for all your comments and contributions; sorry we haven't been on more often to acknowledge them, but we?re in the final run-up to the campaign launch and we?re a bit frantic We have been reading and taking everything on board, as we hope will be apparent when we launch next week.

Some of the comments on here, and some of the feedback we've had from professional and campaigning organisations, focus around when scanning should be offered/available. The points made include:

1. Very early pregnancy scans are extremely tricky, and are often ? even in the hands of trained staff ? wrongly interpreted, which is no good to anyone, least of all the woman concerned.
2. When EPAUs aren't available, or aren't open, and women present to A&E, the staff there are less likely to be skilled in the use of scanning equipment in the diagnosis of miscarriage, particularly before the eighth week of pregnancy. Without further expensive training, poor scanning techniques risk making things worse (see point 1).
3. If women facing miscarriages (and their partners) were treated with greater empathy and understanding, and given clearer information about what scanning can and can't achieve in their circumstances, it might be that the need for early scanning would not be so great.

Given these points, we were wondering if we should tweak Point 2 as follows:

'Where scanning is clinically necessary, access to scanning facilities in the case of suspected miscarriage should be made 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. When women have miscarried at home and have experienced severe symptoms, they should be offered a scan to check that there are no ongoing complications, and that the miscarriage is complete. Where medical staff do not believe that a scan is clinically indicated, or that it would be unlikely to produce reliable results, this decision should be communicated to the patient with tact and understanding, and with a full explanation of the reasons.'

However, this remains your code, so we don't want to make this change without your broad agreement. As ever, we'd be extremely grateful for your thoughts.

Thanks
MNHQ x

I think that sounds really good.

Looks good, Rowan, but I still think that you're really missing a trick with regards to the follow-ups, and that this is incomplete i.e. why women have miscarried, and standardising what does or what doesn't need to happen next with regards to tests and treatment for different age groups.

For example, is it really necessary to have 3 miscarriages into your late 30s / early 40s before someone takes your need for answers seriously?
Or is 2 enough?

And there's so much conflicting advice as to when beginning to try again is sensible too.

Perhaps specifically don't include as part of this code, but consider these subjects as a Mumsnet code part II?

Personally I would rather have the scan option even if it were early on, as although you may not see much, you may well do and even knowing something puts your mind at rest a little. I've had miscarriages before and would definitely have appreciated the choice there. Even if there is no "clinical need" a woman's emotional and mental state is also extremely important and if she wanted a scan for her own peace then that should be granted.

I've paid for private scans as early as 5 weeks and there was something to be seen on it so I don't think it being early on in pregnancy has a great deal to do with it. They were internal scans but it made all the difference to me.

I think the amendments are appropriate.
I can accept the fact its not always in the womans best interests to be scanned in a busy A&E dept by someone who isn't the best person to do it but all it would take is some explanation.
Not to just be told 'an appointment has been made for you in X amount of days', it makes you feel like they're just not interested. Even if its not the case, even when in reality its just because thats the most appropriate course of action, it just makes you feel shit.

I do agree with Venetia too, is it always necessary for the 'rule' to be 3 miscarriages before investigation?
Could it not be based on patient age and history?
I understand the statistics of first pregnancies, the ratio of miscarriages to viable pregnancies and all that but surely that can't be applied to every woman that walks through the door?
One size just doesn't fit all, as this thread has proved.

I'm happy with the code as it stands

The info I received following MMC was rubbish, luckily MN was a huge help at an awful time

I think that the amendments are good however, the "communicated to the patient with tact and understanding, and with a full explanation of the reasons.' part is the main issue I feel. Lack of tact and understanding are the problem with how most women are treated.

By putting more empasis on this, I would hope that it would get the point across for the need for more tact and understanding, my fear is that the people who need to hear this the most are the ones that might not take it on board, but instead use the code to say that "the codes says you don't need a scan" and leave it at that, and leave out the tact and understanding.

But I am glad that the emphasis is clear on the need for tact and understanding, so, I like the amendment.

As an aside, I have had many early scans and most of them have caused more stress rather than less. This led me to begin to refuse early scans on the basis that I have never had an early scan that was reassuring even with my pregnancies that went to term. I do believe that early scans are not a good thing generally, you only need to do a search on MN pregnancy threads to see that is the case. Early scans can help reassure a minority of women who are not recurrent miscarriers and who do not have a tilited uterus and who are having a normal pregnancy. Unfortunately a large number of women do not get the same reassurance and are left with more stress, which, in itself, is not good in terms of miscarriage.

Therefore, when an early scan is done the emphasis should be put on the fact that: what is seen is down to the machine and tilt of the uterus, rather than if a miscarriage is happening or not. It should be a chance for the woman to see the pregnancy and not for a prognosis for that pregnancy.

Hi Everyone

Thanks so much for all your comments. Rowan is finessing code as we speak, so will come back and update on that later. On a more trivial note we've been going around the houses trying to get the right title for the campaign - it needs to be short and to the point, and a title that engages, makes people want to get involved- so far our better ideas include

Caring about miscarriage
Miscarriage care (campaign)
Miscarriage action

what do you think? Any budding slogan writers out there who can help us out?