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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)
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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 firstname.lastname@example.org 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.
Marking place for later! Subject close to my heart .
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.
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.
I thought NICE wanted to improve things
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.
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.
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.
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 .
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 " .
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
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 714 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.
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!
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.
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?
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
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
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 womens 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.
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.
- 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 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.
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.
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
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.
Some hospitals do not have all treatment paths, not done
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.
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 (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?
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.
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.
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.
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.
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.
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
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
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!
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
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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?
Read page 126 offred and then comment - it is spelled out there.
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
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.
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.
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.
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.
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
Strawberry I just wanted to say I am so very sorry to hear about your experience please do consider telling pals. I did and it was taken very seriously,
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?!
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
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.
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
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 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 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.)
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.
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.
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)
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
Sorry not like a heavy period more like a waterfall
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.
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.
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.
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>
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
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.
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 dont 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.
Well said tea - what a fantastic post.
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.
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
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.
I don't have any experience re the "expectant management" issue, but can imagine that if I was in that awful position I would certainly want it to be over as quickly as possible which means being given the option of medical management.
Plus from a purely economic perspective a "natural" miscarriage can take days which means missed work, childcare etc - this will cost the country far more than offering the option of surgery.
Regarding early bleeding/pain: I had 3 early scans at my local EPU due to early bleeding. I am very lucky and my local hospital have a walk in clinic Mon to Sat mornings so I was able to get scanned quickly and easily. From speaking to others on here I know that is unusual and I was very grateful to have such a great unit close to me.
Each time I was not self referred but was told to go by a medical professional (first time by my GP; second time the sonographer told me to come in when I called about repeated bleeding; third time 2 midwives encouraged me to go after yet more bleeding). I had no pain and only light bleeding each time and the scans were massively reassuring and I was so grateful.
Now it seems that the new guidelines say I would not be given a scan due to no pain? If so, what a retrograde step.
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.
Confused mum very sadly nice actually say in the guidance that this recommendation is made for costs reasons
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.
Good point foo fighter - you could have a positive test and have completely mc, couldn't you?
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.
Good point about the hormone levels and ms. My baby died before 7 weeks, ERPC at 13.5 weeks and I still had ms then. Sac and placenta were still growing so my bump was getting bigger and I bet a pg test would have been positive
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.
MNHQ please can you consider a survey on views on the new 7--14 day expectant management rule and campaigning to get this dropped
We still have not one poster in favour of this.
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
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.
Rowan thank you very much indeed for your post. Hope your hectic week is calming down. Great news that you will be making these points loud and clear in respect of this draft.
I'm sure you've also taken on board the degree of concern about the question of diagnosis - that it is very worrying that women with spotting will be told to use of tests. With a missed mc that means nothing. Most people here feel people who are spotting should be offered a scan if they want one.
Just one further thought - the use of the word "improving" in the title of this thread could be mistaken as a value judgement on the content of the guidance. Tbh when I first saw that I almost didn't read it - just thought "oh good - minor improvements".
Would it be possible to change the title of the thread to take that word improve out and to highlight the significance of the changes?
Pg tests not of tests - apologies for iPhone
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
After my ERPC I was given diclofenac which was just fantastic at taking away almost all the pain. I wish I had gone to the GP for something stronger than paracetemol when I was trying expectant management.
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...
Just echoing the points others have made about enforced expectant management. Women need to be offered a choice for how to deal with a miscarriage once it has been confirmed. The stress of carrying a foetus which you know has died and waiting for the trauma of the miscarriage to begin is exceptionally difficult to bear.
I've had 3 miscarriages, 1 natural and 2 ERPCs following a diagnosis of a MMC. The week between the first and second scans to confirm the 2 MMCs have been amongst the worst 2 weeks of my life. In both cases I was offered an ERPC within a couple of days which was was enormously helpful in terms of getting the worst over with physically and starting to move on emotionally.
I also second what Confused said about the quality of care at UCH, I was treated with kindness and sympathy by the EPU there. I think UCH could provide a good benchmark for best practice.
My miscarriage care at North Middlesex however was at the oppostite end of the spectrum. The receptionist at the EPU refused to allow me to be seen as my referral fax from the GP hadn't arrived because they'd run out of paper for the fax machine. Yes, really. I wish I had put in a formal complaint now but was too sad at the time to face it.
I don't think my EPU gave me good advice about what to expect with my natural miscarriages - twice I was told "it's probably over already" after having small amounts of bleeding with 6 week mcs - they were so so wrong! And they were also wrong when I phoned for advice when the bleeding with a confirmed 8 week mc suddenly stopped - er, no, it wasn't over that time either, it was a lull before I passed the sac and baby complete with lots of pain and bleeding. One reason I think they give poor advice is that they just don't know the true situation, due to never doing any follow-up that would tell them what a miscarriage at home is actually like, how much blood loss or pain or how long it lasted. Why is following us up afterwards not automatic?
yy to the painkillers, I had prescription strength co-codamol (30/500) and they didn't help much. I had to wait hours to get that because I'd already taken paracetamol at home and they said I couldn't have anything else (no idea why, although I had a lot of needle marks in my arms by this point from when various people had tried and failed to get a line in or take blood over the past couple of days so maybe they thought I was a drug addict). I was terrified about giving birth in that hospital because I thought I wouldn't be allowed any drugs although in the end I only needed the pool for DS1 and gas and air for DS2 and DS3 because giving birth was a picnic compared to my first miscarriage, even DS2 who was back to back.
Definately clear instructions and explaining what might happen, none of this bleeding like a period and a little discomfort.
A follow up appointment for all women who want one. I was told that they would do tests on DC5. When I asked about a follow up appointment I was told I couldn't have one.
More reassurance for women going through pregnancy after loss. Open access to EPU for reassurance scans and compassion from HCP's rather than being told not to be silly. IME a large proportion of women who have had miscarriages get PND when they have a subsequant baby. I think this can be reduced with better pregnancy after loss care.
Just to add that I am very glad to hear some had good care at Uch but I had an awful experience there which was reported to PALS. I think like many London hospitals it is probably patchy and while there are great clinicians it is all down to who you see on the day. They were the people who tried to make me to 15 weeks to have the ERPC due to staff shortages.
And wanted to follow up Ellie's point about Pnd. I can see women who have mc could probably much more vulnerable to this. I also think follow up is important because of the anxieties in subsequent pg
Copied from thread on mc board: For what it's worth, I agree with you that removal of choice is a very bad thing. I miscarried early and completely both times and so did not need to be offered a choice, but the thought of having a two week window of watching and waiting forced on me after being told a later pregnancy had failed fills me with dread. I'm not sure I'd choose active management if it came to it, but even thinking about not having that choice is awful. Hope you get more responses elsewhere.
Thanks for the sympathy patsy - they did apologise after I called them to say I was going to go to another hospital. I'm glad you had better treatment.
I have had 2 mc. One was a late mmc, which was treated with medical management the day after diagnosis.
The second was earlier, and was effectively treated by expectant management. Because of the first mc, I was very aware of what was going on, but I realised something strange was happening with pg tests, on day period was due, that were not picking up a pregnancy either. I saw GP, who did HCG tests, which showed very low levels. Ectopic pregnancy was a possibility for me, so I was sent for a scan. Up to this point, I was very happy with my treatment.
Thankfully, the scan showed that it was not EP, but 'just' a poorly developing embryo. I was told I was likely to mc, and told to come back 2 weeks later for another scan and possible EPRC, if nothing happened in the mean time.
The following weeks were incredibly difficult. I was on edge all the time, never knowing if and when the mc might strike. I am a SAHM, so had to care for my 2 year old throughout, worrying about what I would do for childcare if it got bad when it started. If I worked, i imagine there would be different, but equally difficult concerns about carrying on ad nirmal. Every morning I woke up with a feeling of dread and deep sadness. When the MC did arrive, I was relieved to be out of limbo, which then made me feel guilty and sad because this was a very much wanted child. It was a horrible time, which I would not wish on anyone.
The actual mc was not very painful, but was mentally hard. There was no physical follow up from hospital, just a phonecall to check on me. I saw my GP, but this was on my inititation because I thought I had retained products, which I did.
I was told that this treatment was the only option for me because the mc was diagnosed so early. I appreciate that this was probably an unusual situation. But it really was one of expectant management without alternatives. And it made the whole experience much worse.
I am pregnant again, 21 weeks, and I am struggling with mental health issues, mainly anxiety. I do believe that this experience was one contributing factor, because it was such an ordeal. It just ground me down.
If this became standard, my own experience tells me a lot of women would suffer. And with finance hat on, probably not much money would be saved over all, just costs shoved onto GP's and community healthcare professionals who would have to deal with the fallout.
It would be much better to allow self-referral to epu particularly after first contact. my experience of this was appt with GP after substantial bleeding, referral to epu, had to wait (unplanned pg and wasn't sure of my dates and guessed 5 weeks) asked to wait 2 weeks as scan (external) not useful before 7 weeks, 2 wks later still pos home pg test, back to Gp for another referral to epu. Very lucky to find 9wk viable pg. the 2 appts with Gp just wasted his time really, we all knew he couldn't tell me anything one way or other, though he was very nice about it.. The epu nurse was great though and didn't make any assumptions about anything, but I think the receptionist could have done with some extra training on dealing with distressed women and their anxious partners, there was an episode while I was waiting which didn't make nice viewing.
It would be much better for women and more cost effective to allow self-referral to epu particularly after first contact. my experience of this was appt with GP after substantial bleeding, referral to epu, had to wait (unexpected pg after fertility issues with first child, and wasn't sure of my dates and guessed 5 weeks) asked to wait 2 weeks as scan (external) not useful before 7 weeks, 2 wks later still pos home pg test, back to Gp for another referral to epu. Very lucky to find 9wk viable pg (hes 3 now)The 2 appts with Gp just wasted his time really, we all knew he couldn't tell me anything one way or other, though he was very nice about it.. The epu nurse was great though and didn't make any assumptions about anything, but I think the receptionist could have done with some extra training on dealing with distressed women and their anxious partners, there was an episode while I was waiting which didn't make nice viewing. A lot of it seems to be dependent on how women/couples are counselled and generally treated during this incredibly difficult time.
Husbanddoes I agree the appointment with the GP is pointless - it seems to be designed only to keep patients out of epu - ie telling them they don't meet the criteria to go to epu (e.g. People who have bleeding but no pain).
Bumping in the hope of more posts on this.
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.
True! I can't help but think there are so many people who would want to post if they were aware of this change.
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.
"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.
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.
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.
Thats what I see when I read it. Cost savings.
Apart from costs to employers. And what cost to women's emotional health?
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.
Daisy just wanted to say I am so very sorry to read about your loss
What a good idea to copy your post to your MP - maybe more of us should do the same.
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.
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 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.
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
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.
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! 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?
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.
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.
Johnny that is awful and I am so for you.
Unfortunately this guidance is all about saving money.
Thanks maples it just made everything so much worse . 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 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.
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.
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
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?
Great that you got a response Daisy and hopefully it will encourage others including mw to do so as well.
The deadline for the consultation response is obviously really close now. It would be lovely to hear what happens if you can please MNHQ.
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.
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.