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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.

maples Mon 20-Aug-12 14:51:05

Thank you very much for the update, Rowan. I am so hoping they will take what is said here on board as this will make for far worse miscarriage care.

RowanMumsnet (MNHQ) Mon 20-Aug-12 10:31:10

Hi again everyone,

Thanks so much for all your responses. I submitted our official response to NICE on Friday, laying emphasis on the points that have been made on this thread; I'll let you know when I hear something back from them.

MNHQ

maples Tue 07-Aug-12 18:29:36

The deadline for the consultation response is obviously really close now. It would be lovely to hear what happens if you can please MNHQ.

maples Sun 22-Jul-12 00:35:45

Great that you got a response Daisy and hopefully it will encourage others including mw to do so as well.

Daisybell1 Sat 21-Jul-12 23:24:16

Final post from me - I've finally heard back from my MP. He's said he's not involved with the consultation but has forwarded my comments on to Earl Howe (Geoffrey?) who is the Government's lead contact, and who apparently will be responding to the points I've made.

Maybe it's worth emailing more local MPs about this?

lotsofcheese Fri 20-Jul-12 18:39:42

The RCOG guidelines "The Management of Early Pregnancy Loss" published in 2006, are far more sensible, patient-centred and evidence-based too - albeit not up-to-date.

They would be a better blueprint than the draft NICE guidelines, which seem entirely cost-driven & anti-choice

alana39 Sun 15-Jul-12 19:44:35

I am concerned about the wait with expectant management being the norm too.

When I had a mmc picked up at 12 week scan I was told the embryo had stopped developing 3-4 weeks earlier. I actually chose to wait and miscarry naturally. At the time I was happy with the access to services, location of clinic, sensitivity of staff etc.

Unfortunately nothing then happened - the little bleeding I had stopped, and after another week I phoned them to discuss surgical management.

What no one had told me when they said I could call at any time and ask for surgical management if there was no progress was that there were only 2 half day lists a week, and I then had to wait another 10 days before there was a slot. It felt as if they were putting me off in the hope that I would miscarry on my own and save them the bother.

Anyway, the result was that I ended up feeling I had not been able to make a truly informed choice, and these plans do not seem to promote that choice.

Johnnydeppsnewmrs Sun 15-Jul-12 19:30:10

Thanks maples it just made everything so much worse sad. The GP (out of hours) was so lovely and sensitive, and sent me to the hospital as he suspected atopic. I had abdo pain (mild, but as it was one sided and started just before the bleeding, which was quite heavy he said he didn't want to just send me away).
It was just sheer nastyness.
Unfortunatley it sounds like a lot of ladies have gone through worse than me sad Surely Drs who work on Gyaene wards should have berevement training. Thats what the loss of a pregnancy is, no matter how far along you are. It is to that family going through it, the loss of a person.
Staff need to realise berevement training applies here, and they should be caring and sensitive, not belittle a scared and distraught lady. sad

maples Sun 15-Jul-12 19:15:06

Johnny that is awful sad and I am so angry for you.

Unfortunately this guidance is all about saving money.

Johnnydeppsnewmrs Sun 15-Jul-12 18:53:31

Sensitivity definately needs to be addressed. Especially with the Dr who threw a pregnancy test at me and said "what does that say?"
When I said it looked like a faint positive, she snarled at me and said that if I classed that as a positive pregnancy test there is no way I was ever pregnant and I had read it wrong all along. angry
I said, "but I used a clear blue, it said Pregnant! There was no guessing of lines. It was either one word or two, and having had 4 say "positive" I assumed I was pregnant!"
She stormed off, taking the pregnancy test with her, she thrust it under a nurses nose and asked her. She said it was positive.
This was after a very traumatic examination where she was extremely rough, and made me cry in pain.
She then got the nurse to tell me there was nothing they could do, as she didn't want to deal with me again.
She was in the wrong job!

With regards to this paper, I am yet to read it all, but what I have read so far does not seem to address the staff sensitivity issue at all. NICE are missing the opportunity here to really make big changes, and reduce stress for the families that have to go through such a sad event. sad

nosleepwithworry Tue 10-Jul-12 18:22:43

Vast experience of mcs, ive had 7.

For each i had early scans from 6 weeks for bleeding/spotting/no pain.

For each i was hospitalised for pain control.

For the first 4 i was put onto a gynea ward, with gynea trained nurses.

For the remaining 3 i was put onto a general surgical ward after the gynea ward was shut down..FOLLOWING the brand new build of a "womens & childrens unit" that did NOT include any gynacological wards! shock wtf.

On the general surgical wards, i was put in the middle of a ward, between matectomy and bowel resection ladies. Not in a side room, while i miscarried in pain behind curtains.
There were no gynae trained nurses, therefore none of them checked my vaginal blood loss, i could have bled to death right there, and no one would have known. Blood pressure check once, no more after that.

Discharged to nothing, no follow up, no referal for check of bloods, checks for infection, checks for retained products, nothing.

There should be, as standard a ward for miscarrying women, there are loads and loads of us, these wards would be full all of the time. Run by Gynae trained nurses NOT midwives, not surgical trained nurses as they just are not trained to a specific standard which is needed to nurse miscarrying women.

It should be possible to have a scan at weekends, that wait is just torure.

The whole system stinks and i am not sure that NICE are hitting the nail on the head. Why dont they ask us?

flickor Tue 10-Jul-12 18:08:23

Ok - had a miscarriage a month ago and to be honest I would not wish my care or treatment on anyone. Hideous. Without going through the trauma - and I have made my point to the senior midwife and hope to pass these onto the maternity feedback committee there needs to be three things

1) Every expectant mother should be given detail about miscarriage and also clear guidance about who to call, what to expect and how they will be treated.
Websites/posters and someone to talk to. It hurts and 25% of pregnancies end like this.

2) A and E is not the place for women who are actively bleeding - the antenatal clinic should be open twenty four hours - my body decided that 2 pm would be a good time to abort a foetus not between 10-5 on week day.

We need more clinics/information. Surely there can be an on call midwife ?. It might not be a broken bone but we need care.

3) Midwives should also be more proactive in their care - after a 2.30 am visit to a walk in centre + three trips to A and E etc, she should not then call me on my phone and a blithe "how are you doing when you have just lost a foetus. Think that the whole email revolution has" not yet hit the NHS.

bugsylugs Sun 08-Jul-12 23:47:48

Have not read it all but have had 5 mc so a topic dear to my heart. Might be worth contacting other stakeholders to let feelings be known miscarriage org is one

maples Fri 06-Jul-12 23:52:26

Another very good post Daisy.

Just can't stop thinking about this whole draft, it has upset me so much. I keep thinking about what I went through when I chose expectant management.

From when my mc was first suspected and they gave me an 80/20 likelihood of mc until the ERPC was 4 weeks. If I had not changed hospital to have the ERPC it would have been nearer 6 weeks sad on top of this I had terrible treatment at the mc unit which I had to raise with pals.

I can honestly say I suffered indescribably. Physically with pain, frightening rushes of blood and mentally with the sadness of losing a child and the unpredictability of whether I would mc at work, on public transport or alone at home.

My trust in the medical profession has been so dented by this draft guidance.

Daisybell1 Fri 06-Jul-12 08:10:25

Thank you. Having had time to think more about this, I think that it centres around dignity.

In extremely upsetting circumstances, we are all entitled to be treated with dignity, and part of that dignity comes from having a choice. Being sent home and being told to wait is not the best option for all women - for some it will be, but for others it's not, and it is not right to deny those women a choice of treatment.

Although I had the erpc, I would have had medical management if the erpc had not been available. The reason for medical management not being my first choice was that the hospital was a 2hr round trip away and so it was not feasible to be making that trip on several days. In the same vein I was unhappy about possibly miscarrying naturally so far from medical help.

So when offering women treatment for a miscarriage, there needs to be consideration of all the relevant factors - mental health as well as physical, family circumstances and geographical location.

maples Fri 06-Jul-12 07:32:38

Daisy just wanted to say I am so very sorry to read about your loss sad

What a good idea to copy your post to your MP - maybe more of us should do the same.

Daisybell1 Thu 05-Jul-12 22:27:21

I have to say firstly that I have not read the guidelines fully, secondly this is very raw as I had an erpc on Monday.

I thought I was about 8-9 weeks pregnant when I had pain in my c-section scar. My community midwife got me an epau appt 2 days later. Not too bad a wait but not ideal. If I had been bleeding or in real pain, then it would have been unbearable.

Treatment at the epau was ok, a scan revealed I was only measuring 5-6 weeks and there was a second baby which had already died. The most difficult thing was the location of the epau - in with everyone else getting scanned, complete with them waving around their pictures etc.

The week waiting for the second scan was the worst of my life, it took forever. I knew deep down that there would be a bad outcome which there was. I have to praise the unit at this point - the sonographer was extremely compassionate, as were the staff (plus I was one of the last appointments to be seen in the joint clinic - they were moving the epau upstairs away from the main clinic that afternoon - a much more compassionate location.

I was offered all three options and immediately chose erpc. I have a 9 month old for whom I would have childcare the following week. Expectant management is completely impractical - I felt that life could not be put on hold for 2 weeks whilst my body decided whether or not to miscarry naturally. I was worried about leaving the house, taking my baby swimming etc in case it started.

The emotional trauma of waiting would also have been unbearable. Once the bad news confirmed I felt that it was best for me to have the operation, at a time which suited my family best, which led to me being in the best place to achieve a good recovery.

The erpc was, in all, a good experience, and the staff were very sensitive. I was on a gynecology ward, away from pregnant women and everyone was very compassionate and they all expressed their sympathies for our loss. This makes the only insensitive incident (where I was shown into a delivery room for a last minted jab) stand out.

So to sum up, women should have access to epau services on a self-referral basis, these services should not be confined to office hours only, and that there should be freedom of choice in how miscarriage is treated.

I have copied this to my MP.

lotsofcheese Thu 05-Jul-12 22:18:25

Apart from costs to employers. And what cost to women's emotional health?

Taffeta Thu 05-Jul-12 19:42:28

Thats what I see when I read it. Cost savings. sad

maples Thu 05-Jul-12 15:58:49

Lotsofcheese I couldn't agree with you more. Just wanted to add that there is no clinical evidence for the change. The guidance is completely open that it would be a change made purely for costs reasons.

lotsofcheese Thu 05-Jul-12 12:56:19

And the unpredictable nature of expectant management would also make it extremely difficult to look after existing children whilst having a miscarriage (as well as working).

I feel strongly that women should be involved in the decision-making process, and have a CHOICE re: OPTIONS rather than this "one-size fits all" approach.

I really hope NICE will accept this anecdotal evidence from women who have been through the experience, rather than just focusing on clinical/cost evidence.

Taffeta Thu 05-Jul-12 11:37:06

"The recommendation re: 7-14 days waiting for expectant management are particularly cruel: how can you function for that long, particularly in a working environment, waiting for "nature to take it's course". Employers will be unhappy about increased levels of sickness, as women are signed off, with their lives on hold & unable to work."

Dreadful, NICE. Waiting 14 days. Shame on you all. sad

JoKempster Wed 04-Jul-12 22:32:33

The NICE guidelines do have a lot of good points which shouldn't be overlooked (and I do support), but I am writing specifically to protest against the suggestion that "Expectant management for 7-14 days should be the first line management strategy following confirmed diagnosis of a non-viable pregnancy".

After having a missed miscarriage confirmed, I was offered the choice of expectant management or having the ERPC. I had my scan on the Monday and then surgery on the Thursday. I am the sort of person who would usually pick the 'natural' way, wanting nature to take it's course. But this was such a horrendous experience. The limbo of carrying a dead baby (and fearing that baby could be passed at any moment) seemed to go on forever and yet it was only 3 days, I cannot imagine how someone would manage to last 2 weeks. It would be awful whatever the woman's situation - going back to work would be impossible, and the thought of the passing the baby whilst having a toddler at home is unimaginable.

Expectant management should always remain an option for those who wish to do so, but please do not enforce that option on women who do not want it.

Please also bear in mind that women who have just found out they have had a missed miscarriage are extremely distressed and vulnerable - it is essential they are given all the information to make an informed decision for themselves, and are not pushed into an option which may end up traumatising them even further just to save costs.

I appreciate costs need to be cut somewhere but there has to be a better solution than this.

maples Wed 04-Jul-12 16:42:40

True! I can't help but think there are so many people who would want to post if they were aware of this change. sadsad

igggi Wed 04-Jul-12 15:45:09

This has been bumped off the list that appears at the top of active convos. Probably not the type of thing people go looking for.

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