The Mumsnet Miscarriage Code of Care

"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.

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.

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!

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 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?

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 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.

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.

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.

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?

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.

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.

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?

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.

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.

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.

Done and I like the code of conduct.

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.

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.

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.

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 :)

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

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.

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 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