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

[RowanMumsnet]

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 [email protected] 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.

Back again to point out that molar pregnancies really shouldn't be left for two weeks either.

Molar pregnancies are not included in this "pathway" as it shows on their flow chart. Obviously they need urgent attention, as do ectopics.

But even for "ordinary" missed miscarriages, this whole guideline seems to be about reducing care to the lowest common denominator.

I'd just like to add that I had no pain with my mmc at 10 weeks, just spotting and a feeling that something was wrong.

I was treated with nothing but kindness and compassion by the EPU at UCLH having been referred there by A&E on a Sunday morning. There was no doubt from my scan that my baby had died at 8 weeks. It was clear that there was no heartbeat and no blood flow from the placenta to the foetus. The staff at UCLH provided me with all the information that I needed and were very apologetic when I was told I'd have to wait 2 weeks for the ERPC. Sadly they had been very busy that weekend. Having had all the information, I decided that I could not wait that long and chose to go privately. I was lucky that my work's policy covers such treatment.

In the end I had two weeks off work following the EPRC. I do not know how much longer it would have been if I'd had to wait a further 2. It seems sad to me that these guidelines, rather than improving care, are seeking to limit women's choice at a time when they are most vulnerable, lost and upset. I can only presume that it is down to cost, and if so, this is so very, very shortsighted.

i have had three mmc's and would hate to wait for treatment. my body has carried dead babies for much longer than 14 days so waiting isn't likely to help me.

i would have to go for a private erpc/abortion rather than wait.

please try to campaign against this as it's just not right.

Oh maples

Probably what they want, for us all to go private as we don't want to carry dead babies around for weeks on end

Women should without doubt be able to directly access an EPU without the need for referral from either the GP or A&E, and they should be able to use this service 24 hours a day, 7 days a week. There is no reason why, in my opinion these EPU's can't be an extension of hospital Gynae services attached to the gynae ward.
Women who are more than 6 weeks gestation with spotting shouldn't be told to go away and repeat a pregnancy test in a week,this is merely protracting the emotional torture surely. Instead they should be having BHCG's done on alternate days with a repeat scan in one week. I too disagree with the 2week wait and see policy, it's too long a period of time.

Taking a pregnancy test is an indicator of NOTHING. you can get a +ve for weeks after a miscarriage.

Agree with fooffighter and maples - I started getting morning sickness about two days before starting bleeding, and three weeks after the baby had died. My hormone levels were still rising.

I do know that some very anxious charters people take weekly First Response tests, to make sure the weeks keep going up (1-2, 2-3, 3+) and don't drop down again before their scan. If you drop from 3+ to 1-2 before about 9w then you have probably started to mc. Not scientific though, compared to dildocam.

I had 2 missed miscarriages and carried on having pregnancy symptoms. With pregnancy #5 I was really struggling with looking after my 3 children and coping with the horrendous ms. Then I had a scan at 13 weeks and found out my baby had died at 9 weeks. This is why I get furious when in some hospitals all women are offered viability scans on the NHS at 7-9 weeks to check for mmc and at some hospitals they faff around for ages with HCG tests and only scan women who have bleeding (more than spotting) and pain. I had to wait for 3 days knowing that the ms I had was for nothing but 2 weeks? A vet wouldn't let an animal suffer like that.

I can tell you that even the tests with conception indicator are not useful for diagnosing miscarriage. i had two missed miscarriages and in both instances, the clearblue tests did not drop the number of weeks. Also it took me two weeks after each miscarriage to get a negative pregnancy testing result. Home tests are no use at all in this scenario.

It took over 2 months for me to get a negative pregnancy test after my last miscarriage. I had a scan to check that there was nothing left - there wasn't. It just took a long time :(

Hello

First off, I'm so sorry it's taken us a while to come back to this - it's been one of those weeks, work-wise, and we wanted to make sure we'd read your comments properly before responding.

That said: we fully acknowledge the strength of feeling here about the expectant management recommendation (and also about opening hours for EPUs and issues around self-referral), and we will make sure that we represent your views on that in the most effective way we can.

We also take on board the other points that have been made and we will include as many of them as possible in our submission.

We have until 17 August to get that in, so do please continue to comment and add any other points that occur to you.

Thanks,
MNHQ

Thanks maples; good point about the thread title, I've edited it

We will make sure we represent all of the views that come through from this thread; we just wanted to post ASAP to address the expectant management issue as that's the one that seems to be worrying MNers the most. But we do intend that our submission will be as full and representative as we can make it.

I can see the value of waiting and rescanning where there is any chance that dates might be wrong and there is a chance that a hb etc may develop.
But with my first and third mcs there was no doubt (1st, was found at 13 week routine scan, no dev past 6 weeks, had had +ve HPT at 5 weeks, 3rd had had scan the week before where hb seen), and I just wanted to have an ERPC as soon as possible to start moving on.
I would have been distraught to be made to wait possibly another month to do that.
And the experience of a 'natural' mc should not be discounted - it is nothing like a heavy period ime. MC#2 was 4 days of very heavy bleeding, passing big clots, lots of tissue, fearing to look in the toilet and so on.

Women should be provided with clear, explicit information about what is normal, what is not, when to seek medical help and from whom (ie it is normal to bleed heavily. But if you soak a sanitary towel in one hour or less, please call the gynae unit on XXXXXXX as you may need to be admitted. Some pain is normal, and you should take y and z as needed. If your pain is not controlled by this, please call the gynae unit etc).
Information should include information about the whole process, followup, and there should be information provided at followup about what may happen in subsequent pregnancies should that be appropriate.
Every woman should have some form of followup, even just to debrief with someone.

The pain surprised me. I take strong painkillers for my back and they didn't even tough the sides of the pain from the contracting

Which could be another recommendation - that ladies are given a prescription for some effective strength painkillers like co-codamol, over the counter stuff just isn't powerful enough.

It would have been nice to have been given painkillers I could actually take, rather than get home, read the label, and find that they were incompatible with bf...