This topic is for discussions about campaigns Mumsnet is running or may be planning to run. Go here for other campaigns or petitions.

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.

maples Sat 23-Jun-12 01:04:31

Having just gone back and re-read 7.4, the recommendation that expectant management be the first line treatment for mc is purely being made on a cost basis.

I do not think this is appropriate - women should retain the option of all methods of management, particularly as this change is not because of any benefit to mc women.

IMHO taking choice of management method away from women in this way is likely to lead to significantly more distress.

maples Sat 23-Jun-12 01:18:39

One further point - the guidance refers to training in breaking bad news for hcps. Some of the research cited in the guidance shows people were particularly unhappy with the manner of receptionists.

I had to report a very bad episode with reception staff to pals. Training for admin staff who work in epu should also be part of the guidance.

lotsofcheese Sat 23-Jun-12 08:21:15

Ditto the comments regarding women having a choice about how their miscarriage is managed & being INVOLVED in decision-making

I would like to reiterate that for some women, a 14-day wait for a non-viable pregnancy to miscarry naturally is cruel & barbaric. Whilst for others it is acceptable.

Hence importance of discussing OPTIONS & involving women in decisions.

I felt so vulnerable when finding out about my miscarriages at EPAU; I would have hated to be "herded" towards natural miscarriages in 14 days, just because the guidelines said it.

It's not a "1 size fits all" solution, the way it's being presented as such.

KatAndKit Sat 23-Jun-12 08:48:37

I think being asked to wait 14 days and go through a natural miscarriage would have damaged my mental health significantly more. Miscarriage is bad enough already from a psychological point of view without being forced into an "option" that you are not happy with.

sunshinesue Sat 23-Jun-12 09:51:45

firstly, I have had two miscarriages, both missed, both pregnancies stopped developing at 5 weeks, discovered at 9 & 11 weeks. the only sign for both was a tiny amount of brown spotting. I think I spent long enough carrying an unviable pregnancy in both cases without being made to wait further. this current pregnancy has seen several episodes of significant bleeding but at 16 weeks seems to be progressing well, so in my experience amount of blood loss is not indicitive of a pregnancy's likely success or otherwise. Scans should be offered for any amount of bleeding.

I was under the care of 2 different health trusts for my mc and had vastly different experiences. the second being far better than the first.

first - 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 as I'd felt completely brushed aside by the medical professionals I had seen. Individual staff members were kind and I don't feel my physical health was put at risk but at no time did I feel supported or that my emotional health was of any concern.

second - LISTENED to me when I said the apparently 5 week pregnancy they saw was not possible. got 2 consultants to examin me and confirm this. was spoken to at length by a gynaecologist and consultant afterwards about my options. gave leaflets about what to expect. offered to fetch the hospital chaplain. offered to take my to the hospital book of rememberance for babies lost in pregnancy. called my back within a few minutes the next morning with an appointment for erpc 2 days later after I had called them to say I'd changed my mind about wanting to mc naturally. gave me a private room to wait for my op in when the day came.

emotional recovery from the second mc was far, far easier than the first. the stress and trauma first time lead to poor physical health, my work suffering and a very rocky time in my marriage. second time around I was able to cope with things very much better and that is entirely down to the wonderful staff and processes at Southmead hospital (Bristol). I really cannot thank them enough and am sure that if my second experience had been as bad as my first I would not be pregnant now.

igggi Sat 23-Jun-12 10:09:09

Can't believe they are proposing a "first choice" system of expecting women to miscarry naturally. Will save money I suppose. I've had 2 very early mc where I'd already started to mc, and wasn't offered a choice with those - but the 2 later ones who'd had heartbeats I was given the expectant/medical/surgical choice. For one I waited ten days for the mc to start. I couldn't bring myself to work during that time, far too distraught. When next mc was confirmed, I opted straight away for an ERPC so I didn't have to go through that again. How awful if I'd had to fight to get one.
Expectant management also means no tests carried out on the embryo to determine cause of mc.
Haven't completed survey yet, but will - seems hard to see this as a positive step forward though sad

maples Sat 23-Jun-12 10:34:13

MNHQ I have been mulling this over again this morning and I think there has never been a greater need for your mc campaign. How very sad that when the campaign was begun to try to improve mc care this retrograde step on methods of management should be proposed. Please please campaign strongly to prevent this. I am sure if people on the mc board see this thread and were made aware of this particular recommendation they would feel very very strongly about it.

Is there any scope for posting a message on the mc board about this thread pointing out this particular change? I don't want to do this myself as I didn't want to start a thread about a thread.

I should say again that my comments about choice of management are despite the fact that I chose expectant management for 14 days myself and would do so again. At the end of those 14 days I could no longer eat, hadn't slept properly for 48 hours. I went to my appointment to decide on next steps having had one hour of sleep and nothing more than an apple in the last day sad

Waiting to mc was very very hard. The constant pain and unpredictable bleeding particularly.

In our culture women know there is the choice of active management and taking this away from women now will be very very traumatic.

Haven't read it completely yet but 7-14 day wait for erpc seems barbaric!

toovey40 Sat 23-Jun-12 13:18:24

i have had 2 mc and 1 ruptured ect the mcs were dealt with very well i was given the option of erpc the next day after confirmation of mc or to leave it to nature , the nurses were all very good giving me loads of hugs . on the other hand i was asked to go home as i couldnt be scanned for the ec until the next day i had been bleeding heavily for a few days i had a coil fitted which increased my chances of ec . i went back for the scan to be told it was ec and needed an em op by the time i was op on it had ruptured ( WGH), i went on to have another baby and because of my history was given lots of care i was given a scan at 6 weeks , started bleeding soon after but was given scans nearly every other week luckily everything was good this was at SMH

elliejjtiny Sat 23-Jun-12 15:12:04

I think women who have a suspected miscarriage need to be given proper information about what might happen next. When I had my first miscarriage I went in for a scan after a tiny bit of spotting at 12 weeks and there was an empty sac measuring 6 weeks. I knew what my dates were exactly but the dr said to come back in 2 weeks for another scan and I might miscarry in the meantime. I was expecting something similar to a period so the pains that were worse than 2 of my 3 subsequent labours terrified me. So did the blood loss that soaked through 2 massive sanitary towels, my knickers, trousers and an incontinence pad every 20 mins for several hours. I wish I'd known that could happen.

igggi Sat 23-Jun-12 15:13:33

Have read the NICE version now and found it depressing reading. I gather this is meant to be a step forward?
Use of progesterone is interesting. Other than that, it all sounds bad (I didn't focus on the ectopic area as I have no experience of that). Wait limits between scans laid out. Expectant managment being the norm. And possibly the most frustrating, not getting seen in an EPU till someone has referred you (fair enough in principle, but in practice - you need to get a GPs appointment first, how long might that take some women?)
Awful awful awful.

CuppaTeaJanice Sat 23-Jun-12 17:22:51

If they are proposing most miscarrying women should opt for expectant management, are they going to tell them the truth about what could happen? Or will they, as they currently do, vaguely say 'it's a bit like a heavy period', and call it a 'natural' miscarriage in a way that sounds all uncomplicated and lentil-weavery?
Will they say that you might lose so much blood you pass out and have to be blue-lighted to hospital, or you might experience pains as bad as labour? Or the embryo might pass intact in recognisable form? Or tissue might get stuck in your cervix causing you to go into shock? And at some point you'll have to pull that chain and flush what would have been your baby down the toilet?

I also think there needs to be some differentiation between treatment of mcs at different stages - purely from a practical pov, a mc at 5 weeks is going to be far easier to 'evacuate' than one at 11 weeks.

elliejjtiny Sat 23-Jun-12 18:21:21

CuppaTeaJanice that sounds like my first miscarriage (baby died at 6 weeks, miscarriage at 12 weeks). Thank goodness I was able to have the operation with my 2nd. My friend had a similar experience but with more pain and bleeding when she miscarried twins at 13 weeks who had died at 6 and 7 weeks). She was told that with a missed miscarriage then the womb lining and placenta keep growing so that's why there is loads of blood loss and pain and it gets worse the longer you leave it. The way they want to do it involves women being scanned at 13-14 weeks at dating scan, discovering mmc and then potentially miscarrying 2 weeks later, at 16 weeks. I can't imagine how painful that would be physically never mind emotionally.

inlovewithdaddypig Sat 23-Jun-12 21:45:20

this sounds like very depressing reading. It doesn't sound like any kind of attempt to improve matters to me - merely to standardise extremely poor treatment of a certain group of vulnerable women across England and Wales.

Firstly, I live in Scotland so my comments would apply across the UK (as treatment should be the same).

Comments as follows...

- it is appalling to expect any woman to wait more than a few days once she knows her baby has died. (Personally I had to wait 5 days and it was a horrible experience). Women should be offered active management as an option straight away.

- early pregnancy units should be open 7 days a week. Women miscarry, and have ectopic pregnancies, 24 hours a day, 7 days a week.

- scans should be available 7 days a week. A women who is told it is likely she has miscarried should NOT be made to wait the weekend for a scan.

My miscarriage was a traumatic experience - and even more so because of the poor service offered by the NHS. I experienced pain and bleeding on a Friday evening. Was told no scan until Monday (I just "knew" the baby had died but needed to know.). I asked for a scan that night or the next day and was told no one available. I then asked what they did with suspected ectopics i.e. there must be some scanners available and was told to "mind my own business". after protesting I was scanned the next day (and told the bad news). why does everything have to be a fight?

why do we have to feel guilty for miscarrying?

I honestly believe that if men were the ones to suffer a miscarriage then none of these delays and "made to waits" would happen.

Offred Sat 23-Jun-12 22:38:13

Isn't the wait because of the recently documented inaccuracy of miscarriage diagnoses and because some women have been told incorrectly that their pregnancies were not viable and had miscarriage management unecessarily? Surely it is better to be really sure than to make a mistake?

KatAndKit Sat 23-Jun-12 22:42:18

No, this wait is being proposed after the confirmation of a non viable pregnancy. They are already sure, perhaps because they have already done two scans a week or two apart. They are sending you home to see if you miscarry naturally in two weeks ( a large percentage of non viable pregnancies probably will miscarry in that time)
If they are not sure they re-scan a week or 10 days later. The new guideline appears to take the issue you mention into account as it has the new guideline cut-off points for diagnosing a miscarriage.

ConfusedMumDotCom Sat 23-Jun-12 23:02:09

Waiting 14 days for an ERPC is barbaric. That's is why I went privately the day after my mmc at 11 weeks was confirmed, I could not wait the 14 days the NHS had offered me.

Offred Sat 23-Jun-12 23:19:50

But kitandkat the research that had prompted this was about incorrect diagnoses of miscarriage after the two scans. It was about the unreliability of ultrasound in diagnosing miscarriage even after two scans 7-10 days apart. It extrapolated that 1 in 23 diagnoses may be incorrect and recommended a wait and see approach.

KatAndKit Sun 24-Jun-12 07:58:08

Yes but they have changed the diagnostic criteria for miscarriage and this new guideline takes that into account. to be quite honest, if they can see your baby is actually dead there is little point waiting and seeing for two weeks as it wont magically come back to life. Most of this "misdiagnosis" involves scans at about 6 weeks when visualising the heartbeat is not so easy and dates can easily be out. A couple of weeks after that it is usually fairly obvious. I speak from the point of view of having had two missed misscarriages diagnosed by ultrasound. The first one did involve coming back in two weeks for a second scan, even though the situation was almost certainly hopeless. However, once the second scan was performed, I would not have wanted to wait another two weeks to miscarry the dead baby. i had already waited two weeks by that point. Dragging it on for a whole month would have been senseless.

The recommendation is not about diagnosing miscarriage. It says that women who have a definite confirmed non-viable pregnancy should wait and see if they miscarry naturally in two weeks. This is not about waiting and seeing if the baby is alive after all.

Offred Sun 24-Jun-12 08:12:09

It is not just about the heartbeat though, it is also about the size/growth and an empty sac. The point of the research was that there is no such thing as a "definite confirmed" non-viable pregnancy. That ultrasound scans just cannot provide that level of clarity in early pregnancy and that that was leading to an estimated 1 in 23 women being diagnosed. Their specific recommendation was that a wait and see approach should be adopted and given that is what is being suggested here in this guideline I fail to see how they aren't connected which is all I am saying. That recent scandal about viable pregnancies being misdiagnosed because of the inaccuracy of ultrasound is behind the new guidelines to wait and see.

maples Sun 24-Jun-12 08:16:17

Read 7.4 offred - this is not about diagnosis but about treatment after that and it is spelled out that this is entirely for cost reasons.

KatAndKit Sun 24-Jun-12 08:20:49

i have had two non viable pregnancies. i assure you it was possible to defintely confirm them by ultrasound. if you go back for a second scan a week later and the fetal pole has disappeared and the sac is empty then you can be quite sure that the embryo that was previously there has now been lost. so why be forced to wait two weeks further before you get treatment?

maples Sun 24-Jun-12 08:21:58

Read page 126 offred and then comment - it is spelled out there.

maples Sun 24-Jun-12 08:25:29

In my case I had a mmc confirmed at 12 week scan. Sac and placenta were the right size for that gestation but everything else measured only 5/6 weeks. I had had a positive pg test as per my dates and approx gestation confirmed by a digi pg test.

Two weeks after 12 week scan another scan showed still no heartbeat and placenta starting to break down.

In many cases there is no doubt at all sad

Offred Sun 24-Jun-12 08:32:45

I don't see what you are directing me to on page 126?

But maples that is not early pregnancy (i.e. before 12 weeks). Ultrasound diagnosis in early pregnancy cannot provide a definitive diagnosis.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now