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NICE are drafting new guidelines about the care of women at risk of miscarriage or ectopic pregnancy: please look and add your thoughts

(139 Posts)
RowanMumsnet (MNHQ) Fri 22-Jun-12 12:03:50

Hello,

Further to our ongoing Campaign for Better Miscarriage Care, we're asking Mumsnetters to feed in to a National Institute for Health and Clinical Excellence (NICE) consultation on its first ever draft guidelines on 'pain and bleeding in early pregnancy'.

Mumsnet is a registered stakeholder in the process and will be feeding your views back to NICE - so this is a real chance for MNers to influence the very first NICE guidelines for healthcare providers in this crucial area. Do please add your comments here, or email them to contactus@mumsnet.com marked 'FAO Campaigns' if you'd rather not post on the thread.

Here's some further explanation taken from the NICE press release:

The National Institute for Health and Clinical Excellence (NICE) is today launching a consultation on a new draft guideline which, when published, will help the NHS in England and Wales provide consistent, effective, high-quality care for pregnant women experiencing pain or bleeding in early pregnancy (before 13 weeks gestation), or who may have an ectopic pregnancy.

NICE is developing its first ever NHS guideline on this sensitive subject and, as part of this process, is encouraging charities, patient groups, NHS organisations and others to register their interest and take part in the consultation by submitting their comments on the draft recommendations, thereby helping to develop the final guideline.

Professor Mark Baker, Director of the Centre for Clinical Practice at NICE, said: 'When a pregnant woman experiences pain or bleeding in early pregnancy, it can be a very frightening time. It's vital she receives sensitive, timely and effective care and support, especially if she goes on to lose her baby, either through miscarriage or an ectopic pregnancy. Ectopic pregnancies can also be potentially life-threatening for the mother if they aren't diagnosed and managed effectively. Unfortunately at the moment, standards can vary across the country and some women may not be receiving optimum care, particularly those who have an ectopic pregnancy but do not exhibit obvious signs of pain or bleeding.

'The draft version of our guideline on the assessment and management of pain and bleeding in early pregnancy is now subject to a consultation phase and we welcome comments from groups who have registered an interest in this guideline. All feedback will help us develop an effective guideline. Once published, it will ensure the NHS across England and Wales can consistently deliver a high level of care and support to pregnant women and their families.'

Recommendations on which NICE is asking organisations and other stakeholders to comment include:

Signs and symptoms of ectopic pregnancy: Be aware that atypical presentation for ectopic pregnancy is common and that ectopic pregnancy can present with a variety of symptoms and signs (as set out in the draft guideline). All healthcare professionals involved in the care of women of reproductive age should have access to pregnancy tests.

Specialist assessment service: A dedicated early pregnancy assessment service (where scanning and decision making about management can be carried out), should be available for women with pain and/or bleeding in early pregnancy.

Ultrasound for determining a viable intrauterine pregnancy: Women with pain and/or bleeding should be offered a transvaginal ultrasound (TVU) to identify the location of the pregnancy and presence of a fetal pole and heartbeat. If a TVU is not acceptable, a transabdominal ultrasound (TAU) should be offered as an alternative.

Management of miscarriage: Expectant management for 7-14 days should be the first line management strategy following confirmed diagnosis of a non-viable pregnancy.

Psychological support: Healthcare professionals providing care for women with early pregnancy complications in any setting should be aware that early pregnancy complications can cause significant distress for some women and their partners. Healthcare professionals providing care for these women should be given training in sensitive communications and breaking bad news.

Groups with a registered interest in this guideline have until Friday 17 August 2012 to comment on the draft recommendations. Following this, development on the guideline will continue with recommendations likely to change depending on feedback received during the consultation.

KatAndKit Sun 24-Jun-12 08:57:43

Yes it can! I had one at 8 weeks where the baby was too small for dates and the heartbeat much too slow. I went back at 10 weeks, the sac had grown but the baby had died. I'd say that was definitive enough.

The phrase "expectant management" does not mean "wait and see if the baby is alive after all". It means "your baby is dead, go away for two weeks and wait for the bleeding to start"

I am aware of the issue about possible misdiagnosis of early miscarriage but to be honest I do not believe the 1 in 23 "statistic". Most women do not have scans at 6 weeks. Between 6 and 12 weeks you usually only get one if you are bleeding so you have a high chance of miscarrying anyway. Most women have a scan at 12 weeks - at that point it is possible to be quite certain if the baby is there or not there and if it is dead or alive.

As I have said, they have changed the diagnostic criteria for miscarriage and will only say your pregnancy is not viable if the empty sac is quite large. If they are not sure they do rescan you and that is made quite clear on one of the flow charts at the start of the document.

I am not sure why you keep going on about this really. Perhaps you have not been in the position of being told your pregnancy will almost certainly fail, waiting two weeks to have that fact confirmed and then being refused treatment for a further two weeks. That is a whole month of limbo at a time when you are already grieving. Not to mention that after the very early weeks, a natural miscarriage is very painful. They are just seeking to reduce the number of women having surgical management (erpc) in order to save money. It has nothing whatsoever to do with making absolutely certain that the pregnancy is not viable after all.

maples Sun 24-Jun-12 08:58:47

Offred, apologies - I had my bookmark in the right place! The right ref is 109, lines 40-48.

If you read the separate sections on diagnosis you will see the timelines set out for how long there should be between scans to determine diagnosis.

maples Sun 24-Jun-12 08:59:43

I mean I had my bookmark not in the right place - clearly too early in the morning for me!

At 13 weeks pregnant I was told by my local epu that it was too early in my pregnancy to come and see them? I thought that's what an epu was for?

Last time (6 1/2 weeks bleeding and pain) I was told I was probably having an ectopic pregnancy but I would have to wait until the next afternoon to have a scan and find out. I was admitted which is reassuring but I had a drip in and when the blood started going into the drip rather than the other way I had to wait 30 mins for the nurse who was chatting at the station about tv to come and see me. She didn't talk to me either, just changed the drip, huffed and walked away. I was treated appallingly by the nurses and so was everyone else on that ward. Luckily after my scan I found out I was fine but the experience was horrific. There was no actual care at all. I think women need more care than less so don't agree with the 'expectant management' that seems to be the centre of my pregnancy care. Where is the maternity care in this country??? I would love to change the whole system and for women to have more say in their care and more support when they need it.

maples Sun 24-Jun-12 10:15:19

MNHQ I have started an additional thread on the mc board about this to encourage people to come and post here.

I am crosser and crosser about this proposed change to expectant management the more I think about it angry

maples Sun 24-Jun-12 10:16:12

Strawberry I just wanted to say I am so very sorry to hear about your experience sad please do consider telling pals. I did and it was taken very seriously,

AmandinePoulain Sun 24-Jun-12 11:18:36

There was no doubt that my baby had died, none at all. I was meant to be almost 12 weeks, the foetus had no hb, no blood was flowing from the placenta and it was only 8 weeks in size, with no limbs. I would have been devastated to have had to go home and wait it out - this was presented as an option but waiting 48 hours between the 2 sets of pills was torture enough - knowing that I had a dead baby inside me put me in a weird, horrible limbo - was I pregnant or not?! sad

I was scanned twice within an hour, at my request, even though I knew it was over. I think that I mainly received good care - my main gripe was that I had to wait 24 hours for a scan, and the painful cervical examination that I had at the hands of a rude, rough doctor when they weren't sure if the mc was complete. I now feel very lucky that I got a scan at all and that 3 days after the scan I was at home, my treatment finished. I don't really want to consider what it would have done to my recovery if these guidelines were followed angry sad

FoofFighter Sun 24-Jun-12 11:43:59

This -

refused to call a mc when pregnancy was showing at 5 weeks despite the fact I should have been 9 weeks and told the dr this baby was planned and my husband had in fact been working abroad for the past 4 weeks and a 5 weeks pregnancy wasn't physically possible. I was sent away to be rescanned in a week. not only was I not listenend to, I was given absolutely no information about what would likely happen next or who I could contact. as it happened I muddled through the natural mc that ocurred a few days later with no medical advice, confused about who I could speak to (dr? midwife? hospital?) and got all my information from the internet

Exactly what happened to me 3 months ago. brushed aside, sent away with NO info. Said I had to give my baby every chance. Bollocks. it was dead. any fool could see that. Why give a woman false hope? it's cruel. I spent the next few days getting all the info and support I needed from the wonderful ladies on the Mumsnet MC board. this is NOT how it should be!

When I did start to mc and rang for a scan to check all was as it should be, the information hadn't been passed on properly, the same woman who saw me not 4 days since didn't know I had mced and when she did was useless. She gave me a leaflet of mc options. Bit late! She said you have increased fertility in next 3 months - hearsay not medically proven, and in any case totally inappropriate. I was crying through upset and pure anger and unable to talk. She just sat and stared at me trying to dry my snot and tears with my sleeve for a few mins before bothering to go and get me a tissue.

Above all of the other recommendations, to me, LISTENING to your patient and believing them when they say there is no way you could be 5 weeks pregnant at 9 weeks pregnant and actioning it THEN, and also having compassion are the most important bits that needs addressing.

Incidentally my only symptoms were a little bit of brown spotting. NICE should know that every mc presentation is different, there is no set pattern, and especially not with ectopics from what I have read from Aitch's excellent posts on the matter.

Stretfordmum Sun 24-Jun-12 15:58:57

I found out I was having a missed miscarriage at the 12 week dating scan. We had no signs that anything was wrong so it came as a big shock. We were advised that we were only measuring at 5 weeks and as the heartbeat only develops at week 6 we would have to wait a week and come back for another scan. We were adament that our dates were right and that we were 12 weeks - so we knew the baby had died and we were having a miscarriage. But the hospital staff said there was a one in one thousand chance that the baby could live. They would not do anything until the next scan.
The waiting was awful - we knew there was no point hoping it would be all ok and just wanted it over. I even asked for an abortion to try and speed up the process sad
At the second scan they confirmed the miscarriage and sent me home for two weeks (expectant). They really didn't want to offer medical or surgical options - which I would have taken.
About 10 days later I ended up being admitted as I was in a lot of pain and bleeding excessively. I ended up collapsing and blacking out on my way to the scan room sad I had to push for medical intervention and they tried (successfully) to put me off surgery (siting complications). Ive never met anyone whose had these so think they were just pushing their views and not listening to my need to get the miscarriage over and done as quickly as possible. Then I was sent home for two weeks until a final scan to confirm it was all completed.

I t

Stretfordmum Sun 24-Jun-12 16:04:31

I also took up the offer of Counselling afterwards - which really helped me deal with the emotional impact.

Since that miscarriage we've had great experience of the Emergency Gynea or Early Pregnancy Unit at St Mary's Hospital, Manchester. I would like to recommend their service to NICE as they are excellent. I've had scans, HCG tests and even IV fluids for Hyperemesis with this pregnancy. Their staff are very supportive and don't make you feel silly for all the things you are worried about. It's runs like an A&E dept so you can "self refer". They do lots of the good practice in the NICE report and the things other posters have suggested (eg scans not in the main
Ultrasound dept with other often heavily pregnant women.)

Curlyfrizzball Sun 24-Jun-12 19:19:43

I had to go to the GP several times before a scan was booked, when I had bleeding and occasional pain at 6 weeks. The scan appointment was good and I think the person who told us that it may be an ectopic pregnancy was very sensitive. I have no complaints about anything that happened from then until I was admitted to hospital on the Sunday evening 48 hours later with increased pain and general panicking (!) Although it was a weekend, I did have a phone call on the Friday evening to check if I was ok, and they told me several times just to go to A&E if anything changed at all. It was the longest 48 hours of my life even so, but I don't think they could have done much more.

I had my second lot of bloods taken on the Sunday and immediately afterwards, was doubled over in pain, so we just walked straight into A&E and I was (eventually) admitted. The receptionist in A&E was very unhelpful - just looked at me doubtfully when I said I had a suspected ectopic, and implied that if I was walking around and not writhing in pain on the floor, I must be fine. She was fine a while later though when she came to tell me that the emergency gynaecologist was on her way in, and knew my name as someone who might come in! The gynae was lovely, when she arrived.

The main thing that was a problem was the after-care, which was pretty much non-existent. It was at least 24 hours post-op that I was told that the tube had ruptured and so had to be removed, and that was only after asking about 4 different nurses/doctors. My discharge letter said the foetus was 9 weeks, though we thought it was only 6 - we never got an answer to why it said that and how old the foetus was - they didn't really seem to understand why we wanted to know.

At the follow-up appointment I had a few weeks later, we saw a registrar who didn't seem able to answer any of my questions. Fortunately, I'd already had them all answered through the ectopic pregnancy support website, which is excellent. (I didn't know about mumsnet then!) No-one asked asked how I was coping emotionally. I think there should be more recommendations on follow-up care, other than just giving written information - this is good, but not enough. Also, routine 6-week scans on all subsequent pregnancies, due to the increased risk of another ectopic. I did get a 6-week scan when I was pregnant with DD, but I had to fight for it, and I doubt I'd be able to get one again next time.

cleanandclothed Sun 24-Jun-12 20:54:14

Have to agree with everyone else, expectant management (if not specifically wanted) for 7 -14 days is horrendous. I have nothing but praise for my experience, and am worried that this guideline might mean a future miscarriage would be much worse. I had a private scan at 6+ weeks as I just 'felt something was wrong'. Scan showed not as much growth as might be expected but was (obviously) not conclusive. Remember some women may be certain about dates (including ovulation point to within 48 hours) for various reasons including home ovulation kits. Don't patronise those that are certain. I then had a second private scan 10 days later to which confirmed the miscarriage. Only problem was the private clinic didn't offer any guidance on what to do next - so I phoned my wonderful GP, got put straight through to a doctor after explaining to the receptionist, told to (self-refer) to my EPU. EPU were great, scanned me again although were clear to explain the previous scans together were conclusive, talked me through expectant management, medical management, or surgery. I chose medical management, although good to know from them surgery would have been available within 2-3 days, so pretty much same timsecale for each. I felt I kept control of the situation, and the quick timescale allowed me to share the news with who I wanted to and not with anyone else.

But having to wait 2 weeks!! I don't think I would have made it into work for starters. And you can't take 2+ weeks off without quite a lot of comments - has the 'cost analysis' taken into account missed work days? I would have felt much much worse feeling the need to explain to everyone, dealing with their sympathy, and then knowing they were waiting for me to get pregnant again. Effect on mental health incomparably worse.

So please:

Self-referral available to EPU
7 days EPU (or 6 miniumum)
All options offered with a timescale of 5 days after confirmed miscarriage (ie medical available asap, surgery within 5 days, expactant only if desired)

bugsylugs Sun 24-Jun-12 22:14:46

Not read the draft yet will obviously. Have just suffered my 5rh mc. Last 3 all whilst on progesterone so would be mmc but
For good care. I have always
Gone for expectant works for me but agree not really like a heavy waterfall (waiting for carpet cleaners insurance
Job) I have little or no pain. Last one I took 'products' to hospital. This time could not bear flushing and am wondering what to do with Beanie.

Am outraged medicine is meant to be about patient choice, eliciting people's fears and expectations from all the posts this is not covered it is dictating as labour can be.
Surgery not first choice will not only be cost but also safety but that is why you have informed consent. Hope when I read it is not as depressing as I fear it will be

bugsylugs Sun 24-Jun-12 22:15:33

Sorry not like a heavy period more like a waterfall

igggi Sun 24-Jun-12 22:46:57

cleanandclothes I assume we are just meant to continue working while we wait expectantly for the mc to start?
I had 3 mcs once in a year, my employers would have loved me being off for 2 weeks waiting and then another actually miscarrying, each time.

LLJ4 Sun 24-Jun-12 23:33:34

I went into work between first and second scans. I don't think I was much use, but I was there.

It sounds like my hospital (COCH) is already pretty good - self-referral via A/N IIRC; EPAU in same building and same entrance as A/N, L/D etc but part of Gynae ward rather than baby zone; lots of information given in leaflets for later consumption, rather than just telling you; swift referral for ERPC/MM after confirmation; etc.

Waiting two weeks, rather than two days, from confirmation to beginning mm would have sent me over the edge. I started bleeding on Maundy Thursday so was not scanned until the following Wednesday when they had caught up. By the confirmation scan a further week later (needed for them, not me with very specific charting and a 3+6 bfp) I had been bleeding for a fortnight.

The worst bits were: delivering it into my hands several days after mm, in a public toilet, with DS1 toddling around me, and not knowing what to do with it - still traumatised by that experience; and coordinating bf around mc.

Sounds ridiculous but when I "knew" I had failed my unborn child I felt an overwhelming need not to fail the live one. EPAU could not tell me if the mm drugs were compatible with bfing as nobody had ever asked before (!) and access to bf DS1 while I was on the ward was tricky and sensitive.

elliejjtiny Mon 25-Jun-12 00:34:30

LLJ4 I was like that too. When I miscarried for the 2nd time I was desperate to continue bf DS3 who was 11 months old at the time. I just pumped and dumped after the GA but I told every nurse and dr who I saw that I didn't want meds to dry up the milk for the baby I'd miscarried because I was still bf DS3.

jaffajiffy Mon 25-Jun-12 08:40:30

Is it really less costly to make women wait two weeks before taking action? I suspect only if one assumes women aren't part of the workforce. And if cost is the only criterion used for this recommendation, NICE should be ashamed of themselves. <three MC in and saving up to go private where at least I can choose>

angry

maples Mon 25-Jun-12 09:25:09

MNHQ really hoping you can reply today to confirm you will campaign to oppose this unilateral change to expectant management - please!

Not one reply here yet to say a woman wants this.

This is not improving mc care angryangryangry

lotsofcheese Mon 25-Jun-12 09:35:50

Yes, NICE are supposed to be evidence-based. However, looking through the evidence in the guidelines, many of the trials are small & of poor quality. Certainly not enough evidence to be making such sweeping statements on.

teaandchocolate Mon 25-Jun-12 10:11:47

I am also shocked and actually quite upset that these guidelines recommend women being left for 7-14 days after confirmation of a miscarriage. It is cruel and barbaric, and I agree with others that although it may save the NHS some money, it certainly will not help employers who will be faced with women being off work for up to a month, possibly more. What about the long term psychological effects of this for these women who would get no choice in their treatment?

I have had 2 missed miscarriages and so am speaking from experience. The first was picked up at the 12 week scan and the hospital were not great from an emotional perspective but to their credit they gave me a choice of waiting, medical management or surgery. I immediately chose surgery as felt that as the baby had died 4 weeks before I just wanted it to be over as quickly and painlessly as possible. The surgery was carried out 2 days later. Despite this quick and effective treatment, I still suffered emotional problems as a result of my experience and ended up taking 2 weeks off work a couple of months later as I was not coping. I have no idea how I would have managed if I had been told to go away for 2 weeks to wait and see what happens.

The second miscarriage was picked up at a 9 week scan - this was private as I had moved areas and in this health authority women, even those with a history of mc, are not offered an early scan unless there is severe pain and bleeding. The midwife and GP made me feel like I was trying it on by asking for a scan, despite having very irregular cycles. After the mc was confirmed I was told that on the NHS in this area, there is at least a weeks wait for either medical management or surgery and I was pushed (with various scare stories) by the doctor who scanned me to go for medical management, despite the fact I had previously had an erpc and was ‘happy’ with that experience. I ended up going privately for surgery as it was covered by my health insurance but still had to wait 4 days which was utter torture, particularly as I continued to suffer with bad morning sickness. If I had been made to wait longer, I don’t know if I could have coped.

I really hope that NICE listens to the views expressed on this thread and understands that what women who have been through the agony of miscarriage want is (unbiased) information, choice, compassion and fast response times. I really hope we get it.

maples Mon 25-Jun-12 10:27:01

Well said tea - what a fantastic post.

igggi Mon 25-Jun-12 10:27:14

Carrying a baby you know to be dead is awful. I have never felt any kind of healing could begin to take place until the mc is over and you stop being pregnant. I felt like my body had become a grave the one time I waited ten days to mc naturally. Time just stopped. Didn't work, and ignored my other dc. It was actually a relief to start bleeding, though noone (especially not the epu I phoned) prepared me for the delivery of an intact pregnancy sac and the decision about what to do with it.
We don't choose to miscarry, we should at least get a choice about how it is handled.

DowagersHump Mon 25-Jun-12 13:39:40

By the end of my first week of 'waiting', I'd booked myself in for a private abortion. That's how badly I wanted to be able to move on with my life. I'd already been carrying my dead foetus for five weeks by the time I had my 12 week scan (actually it was 13 weeks - couldn't be fitted in before then) and waiting another week would have been intolerable.

To make what I went through 'a recommendation' is disgraceful

40notTrendy Mon 25-Jun-12 14:34:16

Another voice here to say please God no to the 2 week wait. Reading other's stories in here makes me realise my care was good in many respects. EPAU separate from maternity ward, only had to wait Mon-Wed for the appt (at the time I was horrified I had to wait that long but I now realise it wasn't so bad) and was offered either a urine test, blood or scan. Once the scan confirmed the mc, the 3 options were explained well to me. I chose surgery, it was right for me. I was booked for the following day. Sadly the ERPC failed, which I didn't know until a week later when I received a phone call. The 2 nights I had to wait until they could repeat the procedure were the worse of my life. Knowing the baby had died and it was still inside me was beyond any pain or emotion I've ever known. To live any longer with that knowledge would be unbearable. And yes, cruel. My experience wasn't perfect (there were a few other issues, minor-ish) but would have been radically different and emotionally damaging under these guidelines.

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