This topic is for discussions about campaigns Mumsnet is running or may be planning to run. Go here for other campaigns or petitions.
New NICE guidelines on miscarriage care: what do you think?(43 Posts)
As some of you may have seen or heard on the news this morning, NICE has today published its new guidelines on Pain and Bleeding in Early Pregnancy: in effect, care guidelines for women who may experience miscarriage in pregnancies of less than 13 weeks.
You'll see that NICE is recommending that EPAUs be open seven days a week, which is one of the key points of our Better Miscarriage Care campaign.
Some of you may also remember that we (on Mumsnetters' behalf) fed in to the consultation on these guidelines; many of you were extremely concerned about the draft guidelines' emphasis on expectant management.
We'd love to know what you think about the guidelines, and whether you think they're a step in the right direction. Please do post your thoughts on this thread...
Yes yes yes to EPAU being open 7 days a week. Closing for the weekend is bordering on being inhumane in terms of the stress a long wait results in.
Not sure about expectant management; personally with my mmc at 12 weeks the only option I could get my head around was an operation the very next day. As it happened, it all began naturally on the way to hospital the next morning so the op was unnecessary. However, I cannot imagine having to wait for two weeks for something to happen. That seems unduly tortuous and personally I'm not sure I could have coped mentally. It was horrendous as it was but excellent NHS care and choices made it more bearable.
This is an improvement on the original proposals due to the addition of the option of medical management if expectant management is not acceptable to the woman involved. I also like the emphasis on support, including a 24 hour telephone number.
Will Trusts be obliged now to offer EPUs that are open 7 days a week, or is this just a best practice type of guideline?
Rowan, thank you very much to you and MNHQ for all the campaigning on mc. It is so appreciated.
How very disappointing that in the current economic climate so much of what those of us here have said appears to have fallen on NHS deaf ears.
I am very unhappy that the first line treatment for mc is now expectant management. In the draft guidance it was admitted that this change is purely for cost reasons. Under the new guidelines a woman having a mmc diagnosed at the 12 week scan will have no right to an ERPC until 14 or 15 weeks - at 13 weeks she will be rescanned to confirm mc. At 14 weeks she may be allowed to book an ERPC or she may have to wait until 15 weeks to book. If there is a few days wait she wouldn't actually be able to have the ERPC until 14.5 or 15.5 weeks. What will happen where, like me, such a patient does not mc naturally and is faced with a 2 weeks wait for an ERPC?
Someone previously mentioned the option for medical management. This is not offered at my unit, so women there will initially only have the expectant management option.
The longer opening hours of EPAUs is good, but you still need to see a gatekeeper first eg GP, nurse, midwife or A&E, so there is no direct access except for a small group of patients, including recurrent mc sufferers who rightly get immediate access. I would prefer easier access to these units.
I am overall really disappointed with this guidance, which has much less to do with better care for women and much more to do with saving money. Shame on you NICE
I wish they would scan every woman at about 5.5 weeks to establish location of pregnancy. That would save six lives a year, and many more emergency surgeries.
My ectopic pregnancies were entirely pain free, but I had an instinct all was not well. Had the hospital followed those guidelines they would have not acted until I was in pain - by which time it would have maybe been an emergency, perhaps requiring open surgery. The suggestion in the guidelines is that woman who is bleeding (which can be a sign of ectopic) should not be scanned immediately.
I'm glad EPAUs are to accept self referrals from high risk women.
I am just dealing with my first missed miscarriage (erpc on Friday) and am very glad I do not have to wait two weeks to see if it comes out by itself (per the guideline). That would be far too hard, frankly.
Presumably these are just guidelines, and there is nothing to stop excellent hopitals from going beyond what they say?
I'm going through an absolutely horrendous MC experience at this very moment, which at every stage has been made worse and not better by the NHS. I have a thread in the appropriate section if MNHQ would find it useful.
Pseudo I have just read your thread and I am so very sorry about what you are experiencing. There is so far for the NHS to go to improve mc care.
To expect a woman to wait 2 weeks for an Erpc having just been told that she has been carrying a dead foetus is barbaric. Personally I was cheerfully told that they could fit me in in 7 days - they seemed to think this was good. For me it was an intolerable wait and I became so upset that they agreed to squeeze me in the next day (for which I was very grateful). However, coming round from the operation in tears, the nurse said 'oh did you want the baby then?'. Confirming my suspicion that I was alongside women who had chosen a termination (about which I do not make a judgement but was horrible). They seemed to view my level of upset as abnormal whereas I view it as entirely normal. Who isn't devastated by a 12 week scan revealing a mmc?
The emotional care is my main concern. It's harder to pin down than how to manage the physical side of things.
Quite apart from any confusion between women seeking a termination and those being treated for mc (which is unforgivable - notes should state this and staff should read), I get that mc is something staff see loads and sometimes view as a routine event.
It may be common, yes - but for most women it is a one-off, traumatic thing to happen and if staff can't show some compassion they shouldn't be working in this area.
Not sure how the emotional support and care will be improved. I suppose that's my overriding thought here- with better mc care the devil is in the detail and these guidelines don't go into that.
I agree with Welovecouscous and WLmum on the point about expectant management as a first line treatment. I recently had an erpc following a missed miscarriage. A few days previously I had had a scan (no heartbeat) and had been told to go home and wait for the inevitable. Ended up in a & e with serious bleeding and contractions only to be rescanned and told that the embryo had still not passed. I was offered erpc the following day and would have been in bits to be have been told to go home and wait again after that experience. That said the hospital staff couldn't have been kinder to me. Sadly that is obviously not everyone's experience.
PseudoBadger I am so sorry for your loss.
Meant to add WLmum to last sentence of my previous post. It sounds as though some staff have an appalling attitude.
I find this terrifying. Is there actually any solid medical evidence for pushing the 'wait&see' option first or is this purely about money?? How can you HAVE to carry a dead baby, knowingly, inside you for two weeks. It's sick and - as someone facing imminent mc - I find it very upsetting.
I had 2 ERPCs following MMCs. My wait both times was less than 2 weeks. The first time my wedding was 2 weeks' away. I didn't fancy miscarrying walking down the aisle.
Shame on you, again, NICE. Keep up the good work, MNHQ.
Boy, the below is the link to the guidance this new NICE stuff is based on:
If you look at pages 109-110 the report is absolutely explicit that the main driver of the change in policy to a recommendation of expectant management is cost. There was no overwhelming clinical case.
Boy I am so very sorry about the fact that you may be miscarrying
Thank you...fx it will by some miracle be ok. But these guidelines just really riles me. God forbid any of them get treated like this & told just to wait!
I have just looked at the costings in the nice consultation draft... an erpc is £200 more than medical management and that is £273 more than watchful waiting (although I HATE that phrase)...
So the women who feel that the best thing for them psychogically would be an erpc are being strung along to save the princely sum of £473.
I've had an erpc, a natural miscarriage and a labour and delivery of stillborn baby and THE ONLY FACTOR that should be relevant to which of these a woman is given is which is going to be the least damaging for them.
Sorry for the shouty capitals there! Can you tell I feel strongly about this?!
louis, I couldn't agree with you more. I had a mmc and chose expectant management in the first instance and would probably do so again. I then had to go down the ERPC route as I just didn't miscarry
My ERPC was a last resort for me, but was so well handled - I switched hospitals for it having complained about the original hospital.
If I mc again I want a choice.
That's what I'm most scared of....that we could all get pushed into expectant management - & then end up having surgery anyway under even MORE unpleasant circumstances. The BUPA site actually says nearly half of all 'wait&see' MCs require surgery to complete. Admittedly BUPA may be biased but they can't misquote figures. Why are NICE making things even more traumatic? A 24 hour service is no good if they can't actually do what we need to help...
I don't believe this could save money, as there will be increased costs from a&e admissions, and women needing support as they miscarry at home. I have had two mc and both ended up as expectant management due to delays and/or my body going for it with gusto (soI have not had to wait, which would be dreadful). One i was admitted to hospital overnight with severe pain (worse than labour) and blood loss and the other I managed at home, knowing what to expect. But I am pretty ok with the sight of blood and am a committed home birther! The cost of trauma in subsequent anxiety, depression and visits to GP must also be factored in. Surely the cost of my overnight stay is similar to the cost of medical management at hospital or an erpc?
But can someone clarify, on a brief read I got the impression expectant management may be recommended only for pregnancies of five weeks or less. I could see this as reasonable, though the mental health of the individual and their feelings must be taken onto account.
Thanks for all your comments.
Cat on p 19 where they state the new rule that expectant management must be offered first there is no gestational age stated, so unless I have misunderstood it applies to all mcs before 13 completed weeks of pg.
The MIST trial showed I think irrc that 1/3 of women suffering mc needed hospital admission. That was where women chose expectant management and I would think this would be higher where women haven't chosen it, as there will be more (understandable) patient anxiety and stress.
The economic cost of women missing work/unable to care for children while bleeding/in pain for several weeks has not been considered.
Hi ladies, I want to make it clear that I don't disagree with any of the comments about expectant management being recommomended because of cost - so this isn't to justify the NHS decision. But, I would like to highlight that there are risks to ERPC. I suffer from something called Asherman's Syndrome, which is basically scarring inside the uterus caused by ERPC (amongst other things). Asherman's is often described by doctors as rare, but the limited research available indicates that as many as 25% of women who have an ERPC on a 'recently pregnant uterus' (e.g. after a mc) can go on to develop Asherman's.
Asherman's can be very distressing as it causes infertility. Quality of diagnosis and treatment is very varied in the UK and people can often end up trying to conceive for years via methods like IVF which will not work. It can also be extremely painful and lead to other complications, so it is a risk to take seriously.
As I said, this is not to disagree with the points about cost savings, more to highlight the risks of ERPC and raise awareness of the potential consequences.
Endedupageek, I am so sorry you had Asherman's and I hope you have had or will have successful treatment. I know from a lady on the recurrent mc thread's experience that it can be very hard to get a diagnosis
I absolutely agree that there should be more awareness of Asherman's and the risks of ERPC - it was the Asherman's risk that made me opt for a natural mc rather than an ERPC - unfortunately my body refused to play ball and have the natural mc so I was forced to have an ERPC anyway.
In respect of risks of ERPC the MIST study showed I believe that there was no statistically significant difference in fertility after 5 years (ie live births) between the ERPC group and the natural mc group. So while an ERPC can very sadly cause difficulties with fertility for some women, at a drastically level there is no major fertility difference.
I am in favour of choice of treatment method and for me personally an ERPC would always be a last resort.
Statistical not drastically - thanks phone
Looking at the £473 cost of erpc. If I hadn't had one with mc#3 I would have been off work for the time they made me wait with dead baby inside (I know this, as I know what I did with other mcs and I could not function until I knew the pregnancy was 'over'). Isn't that a loss to the economy, or am I a lot softer than other women who miscarry and carry on working throughout?
Ha. So far I've cost the nhs (on a 11+6 mc):
2 x lengthy gp appointments
1 x A&E admission (although tbh I think they owe me money for that debacle;
1 x overnight stay
4x epu scans
1x cancelled erpc (they lost a whole day admission and theatre slot!)
And my employers have lost me for 4 weeks. Not very cost effective!
I don't think the NHS is very good at looking at hidden costs, Pseudo
I know someone who had an ERPC under local anaesthetic on the advice of the hospital - no medical reason personal to her - they just said it is always good to avoid GA. both she and her dh had to have counselling which will have been expensive.
They were actually asked if trainee drs could watch as ERPC under local is so rare and they agreed at the time but also found that very difficult.
Couscous - That sounds awful
Come to think of it, my 2 successful pregnancies will have cost far more than my 4 miscarriages.
But catlover, IME the NHS doesn't think women who miscarry at home need support - so no money required ...
Aliphil, you made me laugh (well better that than cry!) At the very least they need to update their leaflets to say 'you may not bleed much, or you may be astonished at the quantities of blood you lose...and you may think it's all over because you've bled a bit, but you could be quite wrong about that'.
Also, I've found that NHS staff wouldn't believe me last time that I had fully had the miscarriage at home before I received the medical management tablets, until I produced the sac which I had fished out of the loo and wrapped up for them (sorry if tmi). I only knew to do that because it was my second time round, and I was only able to do that because I am really quite un-squeamish and had read about this issue on MN. I think it will be very difficult to manage this problem of knowing if it is a complete miscarriage or not because it relies on the woman having knowledge the leaflets don't share with her about what a miscarriage is like (and which I don't think the NHS seriously expects women to have), and because it relies on NHS nurses trusting the accounts of women who don't have wide experience. Either that or they do a lot more scanning, and we know the scanners are under pressure already.
I think they are utterly barmy.
I don't remember whether I got a leaflet. I did get a scan and blood tests, but only after several hours sitting in A&E at the hospital where NHSDirect had told me to go (not my local as I was at work) which had no gynae/maternity facilities ...
I was told by a few NHS staff, "Of course, it's these sensitive pregnancy tests; 20 years ago you'd never have known anything was wrong" (actually I think bleeding for a month might have been a bit of a giveaway) and when I told my GP who knew we'd been ttc for a long time (and who has actually been great about everything else I've ever seen her about), "But that's wonderful! Now we know you can conceive!" (yes, and also I have just lost my baby - could you be more insensitive?).
I had a follow up scan for my ERPC privately. The referral letter to the us clinic stated we wanted to know if all ok as we didn't want to lose any time for continuing to TTC due to my age.
The scanner asked 'was it planned?'
My response (in my head) was WHAT?? Why is that relevant and read my notes.
It seems that although the Nice guidelines are meant to have listened to women and it was hoped would lead to women receiving bettercare with increased sensitivity, in fact the guidelines, if followed, will lead to a restriction of choice for women when suffering miscarriages/ectopic pregnancies. The Ectopic Pregnancy Trust is flagging up just this point in a letter to the BMJ http://www.bmj.com/content/345/bmj.e8136?tab=responses
Bamboozled, the guidance has been hijacked by a cost saving agenda, I think. Very sad
Yes, the restriction of choice for miscarriage is bad enough, after reading the ectopic pregnancy trust letter it looks like the cost agenda has led to NICE advising treatment for ectopic pregnancy that could be damaging if not managed very carefully. I had thought NICE were supposed to listen to patients?
Goodness, Bamboozled, I hadn't appreciated that will read letter. That is the worst thing about this guidance, then.
I do think the advice on management is clinically a bit dubious for mmc too. My understanding iirc was that the MIST trial showed only 25% of mmc found at the 12 week scan mc naturally miscarry within 2 weeks. In other words, mmc sufferers will be sent away to suffer pain and bleeding but for most the mc will not in fact happen naturally anyway.
Thanks, I hadn't read the MIST trial but from what I can see half of the people who had expectant management ended up being admitted to hospital as an emergency. But it's not all about money. There seems to be no information about the emotional impact on women depending on the type of treatment they have, so how can NICE make recommendations in the absence of such important information, when it seems obvious that the impact will be different from patient to patient as this thread seems to show.
That's interesting about the advice you are given when miscarrying at home. I've been told 3 times now that "it's probably all over" after a small amount of bleeding with a confirmed (scan or hcg tests) miscarriage. In each case, there was a lot more pain and bleeding to come. But how would they ever know what an expectant miscarriage is like, as no-one ever followed it up with me? So they continue in their ignorance.
sorry don't think my link worked before
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.