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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.

blondieminx Fri 22-Jun-12 12:09:21

Marking place for later! Subject close to my heart sad.

AmandinePoulain Fri 22-Jun-12 14:03:42

I have concerns about this document. The pathway recommends that women with 'minimal spotting' receive 'expectorant management', or a pregnancy test. At 11 weeks pregnant last year I had one episode of spotting, I was referred to the EPU, where a scan revealed a missed mc. Had these guidelines been followed at the time I may not have been offered a scan - and the mc wouldn't have been diagnosed for another week at my dating scan - not only putting my health at risk but would have caused even more distress. I am 30 weeks pregnant now, I spotted at 5 weeks several times, the wait until 6 weeks for a scan was horrendous, imagine if I'd been told to wait until 12?! I'd have been a wreck for 7 weeks! The document mentions women who have previously had an ep being able to self refer to EPU (and rightly so) but what about mmc sufferers?

Additionally it mentions waiting 7-10 days after diagnosis before offering an surgical (I'm glad the term erpc appears to have been dropped) or medical management - I would not have wanted to wait such a long time - I wanted to be treated ASAP and move on.

I am also disappointed by the lack of recommendation that EPUs operate 7 days a week.

OracleInLeCoracle Fri 22-Jun-12 14:48:12

Marking place.

OracleInLeCoracle Fri 22-Jun-12 14:48:13

Marking place.

KatAndKit Fri 22-Jun-12 14:49:02

I agree, 7-14 days is too long to wait for a miscarriage to be managed. I had to wait 5 days the first time and 6 days the second and even that seemed like too long. Within 10 days, a woman could begin to miscarry naturally. If she was 10+ weeks pregnant and had opted for the surgical management, having to miscarry naturally would make things more traumatic. I chose the operation so I didn't have to go through that. Expectant management is not what many women want. It translates as "fuck off home for a couple of weeks and then we might treat you" to some. When you know you have lost your baby, those two weeks they are recommending you wait it out would be sheer torture to some women who just want to get it over and done with.

AmandinePoulain Fri 22-Jun-12 15:33:11

I thought NICE wanted to improve things sad

elliejjtiny Fri 22-Jun-12 15:54:33

I think expectant management should be offered to women but many women (including me) would prefer to have the surgery asap. With my first miscarriage I ended up in a and e heamorraging and when I had my 2nd miscarriage I was terrified of that happening again so I chose to have the surgery which was done 3 days later.

Is there going to be a campaign about treating women who are currently pregnant but have a history of miscarriage? I asked for an early scan for reassurance with pregnancys 2, 3 4 and 5 after miscarrying pregnancy 1 and was told no but other people on various pregnancy forums were getting them because of previous loss or just because they were worried.

TwoIfBySea Fri 22-Jun-12 16:00:00

Can you email your plan to NHS Scotland too.

Good idea not to leave a pregnant woman for an entire weekend of stress and panic over whether or not it is an ectopic because you can't get a scan done after office hours. Don't send them home on a Friday evening from A&E with that hanging over them.

Oh I don't mean to spoil your weekend nice scan and testing person but did my baby just die?

Sorry but 13 years on the scars haven't healed.

TwoIfBySea Fri 22-Jun-12 16:00:00

Can you email your plan to NHS Scotland too.

Good idea not to leave a pregnant woman for an entire weekend of stress and panic over whether or not it is an ectopic because you can't get a scan done after office hours. Don't send them home on a Friday evening from A&E with that hanging over them.

Oh I don't mean to spoil your weekend nice scan and testing person but did my baby just die?

Sorry but 13 years on the scars haven't healed.

NannyPlumIsMyMum Fri 22-Jun-12 16:50:16

I had to wait 2 days for a scan during daytime , weekday hours of very heavy bleeding.

I later when on to be admitted to hospital because the bleeding was so severe.

I had to sit and eat in a dining room with ladies discussing their experiences of childbirth sad.

I had a botched internal examination from an SHO who left me laying on my back for what seemed like a lifetime while she tried to assess if my cervix was open.

She couldn't manage it. And I had to go through the whole thing the next day.

When the consultant did his rounds at 8.50am I was completely on my own - I naively thought they may wait to give me any news until my DH was there.

Consultant told me " we may have to empty your womb of it's contents " sadangry.

For the rest of that day they allocated me to a student nurse who was on a long day.

She ignored me all day - did not speak whilst even doing my blood pressure.
Did not ask me how I was.

I was so upset that when her assessor broached her about it - she told the assessor she simply did not know what to say to me.

Yes, care definitely needs to be more sensitive .

Disappointed in this really sad

It makes no sense that access to early pregnancy assessment units should be limited to Monday to Friday business hours. I have had to wait in A&E over the weekend before, waiting for 'business hours' so that I could be scanned. Not nice. The hospital where I had DS (UCLH) has an EPU (through A&E referal) open on Saturdays, which is the direction all hospitals should be heading in. They also allow women who have had a MC previously to self-refer to the walk-in EPU for a reassurance scan. I think that any woman should have access to a scan in the case of bleeding, let alone one who has had a MC previously.

I am particuarly troubled by the recommendation of expectant management for 7–14 days as the first-line management strategy following confirmed diagnosis of a non-viable pregnancy. The only word I can think of to describe this is cruel. All well and good if the patient is happy with this course of treatment, but I wouldn't have been. In the case of my MCs, the waiting at various stages added to my distress. It smacks of being left to deal with it by yourself.

I also don't like the sound of sending someone off to do a pregnancy test at a later date, and waiting long periods for ultrasounds. Sounds like a recipe for further stress and heartache.

There is plenty more I could say on the draft, but it has left me too disheartened.

lotsofcheese Fri 22-Jun-12 17:44:09

Will these be used as a stick to beat us with? I expect so!!!

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.

I speak from experience - waiting a week from a non-viable scan to surgery was horrendous - two weeks, I could not have endured. It resulted in a further week off work & much distress for me. In my 2nd miscarriage it was 24 hours, so much better & allowed me to move on quickly - with less time off work.

This just seems to me to be a big drive towards medical management - because, guess what, surgery is more expensive!!

I was advised to go for surgery in my 1st miscarriage, and given the option of waiting 5 days for medical management on a ward, or surgery the next day. I could not face the wait & was worried about having a natural miscarriage while trying to look after a toddler, so chose surgery 2 nd time too.

From personal experience, had these guidelines been followed, I would have an undiagnosed molar pregnancy & a missed miscarriage picked up at 13.5 weeks instead of 11.5.

These guidelines are a giant step backwards for pregnant women at risk of or experiencing a miscarriage. They will be used to fob us off, disempower us & offer the lowest possible standards of "care"

Please state your objections!

nextphase Fri 22-Jun-12 21:25:52

I've only read the NICE guidelines, and not the full document, but

1.14.28 - I'd most probably have died if I'd been left 7-14 days from my HCG bloods to a repeat home pregnancy test. I had a pregnancy of unknown location, a small rise in HCG after 48 hrs. Admitted to ward after blood results known. Emergency admission to surgery 5 hrs later with a very close to rupture ectopic pregnancy, and "just" stomach cramps.

I agree with the comments above about weekend access to EPU.

Yes, yes, yes to written information - about everything that is said, or at least where to go for advice. I was left with nothing, and my mind took in very little of the information, other than I'd lost my baby, and had reduced fertility due to removal of a tube - and in fact, if they had accurate information about the effect on fertility, it would help - being told untruths about half my chances of conceiving gone didn't help recovery.

Midwife training in subsequent pregnancies following ectopic hasn't been mentioned. On my subsequent pregnancy, I asked for a referral for an early scan, and was refused as unnecessary as no ectopic symptoms. Luckily I was allowed to self refer, or the weeks between a positive test and a 12 week scan would have been one long symptom and knicker watch.

This is slightly out of the scope of the document, but when a early scan leads to a continuing pregnancy, at a booking appointment, don't take a 7 week viability scan as the dating scan, and then spend every appointment after that asking why I didn't have any stickers with my hospital number on -I didn't have them as I didn't follow the normal path, and have a scan identified as a dating scan, so didn't get the information and identification labels as the scan I had was viability not dating. Not sure that's clear, but I'm not sure how to clarify further, sorry.

Great they are considering guidance, not sure its right yet.

libelulle Fri 22-Jun-12 21:38:24

Do they mention plans for women who fall pregnant having had an ectopic pregnancy in the past? Because there is a 10% chance of recurrence, at least. Yet I was told by my local teaching hospital that it was policy not to offer 'reassurance' scans (ffs) to women 'with a history of miscarriage' (they include ectopic in this)
until 8 weeks at the earliest. They were unmoved by the fact that by 8 weeks, many ectopics will have ruptured already, some with very little warning. Why not make it a guideline that all women who have suffered an ectopic pregnancy should be offered an automatic scan at 6 weeks in their next pregnancy?

blondieminx Fri 22-Jun-12 22:43:31

There are some positives there: setting the standard that women with pain and bleeding to be given scans is very sensible. We know even just from the small sample on this thread that doesn't happen in all areas. Another plus is making sure that all staff caring for women using this area of the NHS are given extra training on senstive communication.

I'd echo what others have said, the length of time being proposed for women who have had a confirmed miscarriage to be left bleeding and heartbroken is just cruel. Two weeks sad

Ultimately I feel that women undergoing miscarriage should always have the CHOICE of either medical management or surgery, in the same way that women carrying to term now have the choice of VB or C-section enshrined into NICE guidelines. For every woman who wants to "get it over with" there will be another who hates the idea of an operation. Everyone is different and the key to better miscariage care is offering women at such a devastating time:

(i) quick and easy access to EPU service (operating 7 days a week) via self-referral;
(ii) sensitive staff who actively listen before offering treatment options, including prompt scanning;
(iii) sensitive location of the EPU - i.e. not accessed via the antenatal clinics/delivery suite (speaking from experience, it is heartbreaking to know you are likely losing your baby but have to walk past loads of women with bumps to get to the scan to confirm this); and
(iv) signposting to counselling services / organisations like the Miscarriage Association/SANDS as appropriate, together with details of what to expect over the coming days in terms of pain and possible complications.

Having read the draft guideline I would comment as follows:

"1.2.2 Dedicated early pregnancy assessment services should accept self-referrals from women who have had a previous ectopic or molar pregnancy. All other women with pain and/or bleeding should be assessed by a healthcare professional before referral to an early pregnancy assessment service."

This effectively means you create 2 classes of miscarriage sufferers, and put in a barrier to accessing care. Implementing this would mean that women like my friend who had her first child with no hiccups and knew something was wrong with the second pregnancy (it was, MMC) would not be able to self-refer. It would also mean that if there are no GP appointments available within 48 hours, it's entirely possible that the woman had gone 3+ days of worry and pain/bleeding before anyone assisted her in any meaningful way. Women must be able to self refer.

"1.4.15 Give women a 24-hour contact telephone number so that they can speak to someone who understands their needs and can advise on appropriate care.
1.4.16 Provide women who have a confirmed miscarriage with written and verbal information about where to access support and counselling services (including links to useful websites)."

Excellent, these are very good ideas and that sort of support is exactly what is needed! Credit where it's due smile

4.1 National Audit of EPU provision - again, this is great to see!

4.4 "Miscarriage is distressing for most women, and the type of management itself might affect women’s need for counselling, with a resulting cost to the NHS." - precisely why women need prompt, sensitive care.

The psychological support interests me. Lack thereof resulted in the break up of my marriage followed by ten (yes, 10) years of psychotherapy to help me overcome not only the loss, and sense if loss, but the hideous apathy of the healthcare providers at the time.

maples Sat 23-Jun-12 00:28:55

Some very good stuff here and some disappointing decisions.

Good things - emphasis on sensitivity and dignity, 24 hour phone support, continuing to offer choice about mode of management, offering option of progesterone and dropping the awful term ERPC.

Bad things:

- no self referral allowed to epu for previous mmc sufferers. The experience of attending a 12 week scan to be told baby has died was heartbreaking sad please reconsider this
- no ultrasound scan for spotting without pain. This will mean people are often left anxious where there is a mmc only to have mmc confirmed at 12 week scan.
- no recommendation for weekend epu cover. Shame because it is very frightening and upsetting to be left bleeding over the weekend without advice

Suggestions of things to add

- please can nhs give Mumsnet details to people having mc. The mc boards here are a life line.

Posting more in a moment - posting this section now so I don't lose this.

maples Sat 23-Jun-12 00:31:09

Where info is given on the various management options please can some of the data from the MIST study be included? I was given no info on fertility outcomes of various methods, for example. I had to have ERPC after expectant management failed to work and had to find info on fertility outcomes myself from google.

maples Sat 23-Jun-12 00:33:23

IMO the guidance need to take account of the fact that done hospitals do not have all treatment paths available. At my centre there was no info available on medical management as that was not available there. To get any information you were required to transfer your entire treatment to another hospital further away that did offer it. This is not a good way to treat anxious mc women

maples Sat 23-Jun-12 00:37:55

Although the guidance recognises the deep impact of mc I find the language used to try to explain this rather faint and lacking.

I did not mourn the loss of a 'relationship' or 'role'. I felt I was mourning the loss of a child. The profound sense of loss I felt was not 'akin' to other grief, it was grief of a visceral, painful kind.

Please could this wording be reconsidered and more sensitively phrased. It may also be worth adding that to older mc sufferers a mc may result in the pain of fearing never having a child at all or never completing a family.

maples Sat 23-Jun-12 00:38:36

Some hospitals do not have all treatment paths, not done blush

maples Sat 23-Jun-12 00:49:20

It seems to me that the guidance actually institutes a policy change of women being made to try expectant management for 2 weeks before being allowed to opt for ERPC or medical management. A significant number of women will mc at home in that time.

I personally wanted to allow the 2 weeks to see if nature would take its course and did so, but I think this should be a choice, not a policy decision.

I cannot see how this benefits women who are mc.

maples Sat 23-Jun-12 00:54:36

Something else which seems to me to be missing from this is guidance on how quickly ERPC or medical management should be carried out once chosen by the patient (unless I have missed this).

I was told that due to staff shortages I couldn't have an ERPC until 15.5 weeks sad (mmc confirmed at 12 week scan, expectant management did not result in progress of the mc).

The unit later apologised, but I had to go private to get my ERPC earlier.

Surely this should not be happening and there should be guidance covering the wait for an ERPC?

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