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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...
sorry don't think my link worked before
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.
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.
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.
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?
Bamboozled, the guidance has been hijacked by a cost saving agenda, I think. Very sad
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
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.
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?).
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.
But catlover, IME the NHS doesn't think women who miscarry at home need support - so no money required ...
Couscous - That sounds awful
Come to think of it, my 2 successful pregnancies will have cost far more than my 4 miscarriages.
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.
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!
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?
Statistical not drastically - thanks phone
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.
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.
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.
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.
Thanks for all your comments.
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.
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...
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.
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