The Mumsnet Miscarriage Code of Care(190 Posts)
As some of you will know, we at MNHQ are gearing up for of the next phase of our miscarriage care campaign. (For those who would like to know more about the history of this, have a look here and here.) Later this month we're going to be asking you start making some noise about this; we'll post up more details soon.
SURVEY NOW CLOSED, THANK YOU TO EVERYONE - PLEASE LOOK OUT FOR RESULTS SOON (ANNMUMSNET) But before we do that, we have two requests. First, if you have ANY experience of miscarriage, we'd really appreciate it if you could take part in our survey. There are some fairly tough and personal questions in there, and you may find it upsetting to fill out (and of course, we're very sorry if that is the case; do feel free to close it down without completing it if it gets too much for you). We thought carefully about whether to run the survey, and about the questions that are on it. We decided to go ahead because evidence of MNers' experiences is probably the most powerful way to get our point across to politicians, officials and the wider world. Please rest assured that all survey responses will remain completely anonymous, and won't be linked in any way to your MN nickname or RL identity. All the data in the survey will be treated confidentially, and no individual data will be looked at unless you add your details under Question 18. As some small compensation for those who do manage to fill it in, there are free subscriptions to Grazia magazine to be won.
Second, please take a look at the Code of Care (copied in below). We have reviewed the code following your input on this thread, and we've also taken soundings from some professional and campaigning bodies in this area. As a result of this feedback, we've condensed the code from ten points to five, in the hope that this will make it seem less intimidating to those we're trying to influence and increase our chances of making the code a reality. We've decided to take out the point about routine screening for chlamydia, lupus, blood-clotting disorders and antiphospholid syndrome, as we were strongly advised that this was not needed in nearly all cases; and we've tweaked the point about miscarriage information being held centrally within the NHS, as NHS computer systems just can't do this at present . Instead we've included a point about the information being passed on locally.
We have added in the point about women miscarrying at home being offered adequate prescription pain relief, because so many of you on the previous thread made this point.
So, before we send it out into the wider world, we wanted to run it all past you again. Does the revised code (copied in below) do the job? Is it a good way to get our points across, gain support and start the long journey towards actually putting this code into practice up and down the country? Do let us have any feedback.
1. Supportive staff
GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication techniques (including things NOT to say to women who are miscarrying), basic counselling skills and the psychological effects of miscarriage. Follow-up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage.
2. Access to scanning
Access to scanning facilities in the case of suspected miscarriage should be easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units at all times as standard. Those who are miscarrying naturally at home should have the option of a scan to check that there are no ongoing complications.
3. Safe and appropriate places for treatment
Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. EPAUs should be sited in hospitals' gynaecology, rather than antenatal, departments or next to A&E departments, to ease women's referral route. Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in antenatal or labour ward settings.
4. Good information and effective treatment
Everyone who has a miscarriage confirmed should have the three options explained to them: 'natural' miscarriage; medication to speed up the natural process; and surgery. What each option involves, the amount of pain and discomfort that might be experienced, and the likely timescales for each should be explained clearly, sympathetically and honestly either by trained medical professionals or in a leaflet. Women miscarrying at home should be offered appropriate prescription pain relief. In the case of miscarriage occurring in hospital, doctors should discuss with the parents what they wish to happen to the foetus (i.e. it should not be disposed of routinely without prior consultation). Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC), as many parents find this confusing and upsetting.
5. Joined-up care
Community midwife teams and GPs should be informed immediately when miscarriage has occurred, and subsequent bookings and scans cancelled, to avoid women who have miscarried being chased by HCPs for 'missing' pregnancy appointments.
Just signed up to the site after doing some research into women's experiences of miscarriage. I have just recently suffered a miscarriage at 12 weeks. The way I was treated by the NHS is still too raw and painful to describe in length, but I have written to the hospital complaints department regarding my experience.
I was appalled to find so many women in a similar position and am now interested to hear more on where this campaign by mumsnet is headed at the moment. I intend to lobby my local MP, giving my own personal experience as an example of how women who are suffering miscarriage are being treated by the NHS. Would it help for me to post my letter of complaint to the hospital on here? Just wondered if anyone is interested in hearing about my experience and I would love to know if there is anything further that I can do to help support the campaign.
Could we gently point you in the direction of this thread, which is being kept up-to-date with campaign news?
KatieMumsnet has also posted on there about how we've been getting input from the Miscarriage Association and other organisations. Not every organisation has signed up to our campaign (for various reasons), but we have approached and had conversations with pretty much all of the campaigning and professional groups we could think of, and had incredibly useful feedback and advice from them.
I think this is a good idea, but think it is a little sad that this does not acknowledge some of the good work already done. I have had 3 miscarriages and although some of the experience was awful, some of the medical professionals that I dealt with were amazing and helped me through very hard times. Perhaps we should look to successful (hard to actually quantify for this subject though as so subjective) models and encourage others to copy? This then serves the objective of the code whilst showing that some areas provide a really good service.
Note also that although this is hard to accept, an immediate scan may not be the answer. In my experience, the hearbeat may be there when the bleeding starts and so really it is better (although painful) to wait a few days. I think perhaps my point here is that everyones feelings in response to mc are not the same and neither are their medical needs. Point 2 sounds a little bit prescriptive to me.
This is just my opinion and I am glad that you are taking the time to recognise something which impacts many, many women. I will point people to the Miscarriage Association as well - I have found their forums and support to be very helpful.
Keep up the good work
Perhaps SANDS could help too. Although they are the Stillbirth and Neonatal Death Society they are very supportive of losses before 24 weeks too.
If I can say in defence of Mumsnet, I am very glad that they are doing this.
When we lost our son I was put off from seeking help from SANDS, as because their name I felt that my loss would be called 'just' a miscarriage in the eyes of the professionals when compared to a 'real' stillbirth or a neonatal loss.
Yet I felt that I wouldn't find the right help at the Miscarriage Association because my loss was after between 20 and 22 weeks and I had given birth to my son, so it felt different to what the term miscarriage meant to me at the time.
So I didn't seek help from either organisation, because I felt like I didn't belong to either group. So I had no really support from other Mums who had been through a loss or from an official organisation until our daughter died neonatally following her premature birth, when I did turn to SANDS and was made very welcome.
If I had found a forum such of Mumsnet at that time, that was keen to offer support and change some of the things that had upset me during my care I think I would have dealt with things much better than I did.
I'm glad that they are doing this, although working together with other organisations can't hurt either.
I'd be more inclined to support this if a professional organisation, ie the Miscarriage Association, was asked to be involved with it.
Sorry Mumsnet why are you doing this. The Miscarriage Association already deals with everything you have highlighted in your campaign they are recognised and respected nationally. Surely putting your weight and support behind the work they already successfully undertake would have more of an impact than you re-hashing the work they already do. It makes me really angry when organisations do not work together - are you more interested in raising your own profile or in working to support change, if it is the latter you will drop the campaign and begin working with the MA. Nowhere do I see mention of the MA.
Sorry to bang on about this, but MNHQ, please could you comment on the idea that this is but a first step in the campaign, and that standardising and improving the investigation and treatment of the causes of miscarriage (which I know you said in your OP that you would leave out this time), will be dealt with at a later date?
Oh I love a bit of alliteration - always doing far too much of it and far too much putting things in threes (I'm sure there's a posh word for that). Anyhow, I'm just a bit nervous of putting Management in the title, think when it comes to NHS it might put people off. We've had a straw poll in the team, and think 'Better Miscarriage Care' just about edges it - so NancyMumsnet is knocking that into a logo as we speak. All starting to get busy, and here is the brand new spangly thread on our final code!
Thanks bamboozled, glad you like it. And thanks for the title suggestion too!
Hi Rowan- sorry - I hadn't read that post - I read the code of care yesterday before the recent post was added - and spent last night thinking about point 2 and discussing it with a friend (prime example of the power of mumsnet!) so jumped online today to add my twopenneth worth without reading anything else!
I think it is a very important point so am really pleased that you had been reconsidering it.
I hope that this gets the attention it deserves and the code of care is taken up.
Thanks for all the work that MNHQ do on the behalf of the rest of us!
As your tag line that you were wanting - how about
'Management of miscarriage matters' - can't go wrong with a bit of alliteration.
Hi bamboozled - just quickly, did you see our post yesterday about the proposed revision to Point 2?
If a woman starts on a bank holiday weekend it can be up till Tuesday! My last one was easter weekend, epu was closed from Thursday afternoon until Tuesday morning. There should be some scanning equipment on the gynae ward, or the gynaecologist on duty there should have access to the ultrasound room at weekends. It doesn't have to be 24 hours and it shouldn't be any old doctor on A&E doing the scanning, as it does need training, but I agree there should be some facility to get a scan within a day or two.
I think 7 day availability for ultrasounds is much more important than it being available 24 hours per day. Even if the weekend appointments are rotated between several hospitals within a reasonable distance. At the moment, if a woman starts bleeding on a friday afternoon for example, she will often have to wait 3 days until monday to get a scan. Waiting overnight is acceptable, 3 days during a stressful time is not, especially when it is thought stress can affect the pregnancy, and the woman's mental health.
Can I make a really important point? I think that the work that you are doing is fantastic and will hopefully change the way that women experiencing miscarriages are treated. The code of care is excellent - but I feel that point 2 REALLY needs looking at. To have ultrasounds available 24 hours a day in A&E will cause more harm than good. An ultrasound machine is only as good as the operator that uses it. We are talking about an incredibly exact science - where a 2 mm difference can make a difference as to whether a pregnancy is viable or not, dates being imprecise can totally change what stage of development is being looked for etc, and often a scan by a well meaning untrained doctor can give a false reading. Surely it would be better to have a designated EPAU per area, county wide, that are able to provide an expert to do the scan so that women with suspected miscarriage are advised to travel there - rather than providing inadequate scans at every A&E? An incorrect scan done by an inexperienced operator for such an important matter can cause such emotional harm, let alone the medical implications. I would never let a gynaecologist on call set my broken leg - so why on earth would we be pushing for every medical professional on an A&E rotation to be expected to provide a first rate scan? Please please think about this.
Thanks so much for all your comments. Rowan is finessing code as we speak, so will come back and update on that later. On a more trivial note we've been going around the houses trying to get the right title for the campaign - it needs to be short and to the point, and a title that engages, makes people want to get involved- so far our better ideas include
Caring about miscarriage
Miscarriage care (campaign)
what do you think? Any budding slogan writers out there who can help us out?
I think that the amendments are good however, the "communicated to the patient with tact and understanding, and with a full explanation of the reasons.' part is the main issue I feel. Lack of tact and understanding are the problem with how most women are treated.
By putting more empasis on this, I would hope that it would get the point across for the need for more tact and understanding, my fear is that the people who need to hear this the most are the ones that might not take it on board, but instead use the code to say that "the codes says you don't need a scan" and leave it at that, and leave out the tact and understanding.
But I am glad that the emphasis is clear on the need for tact and understanding, so, I like the amendment.
As an aside, I have had many early scans and most of them have caused more stress rather than less. This led me to begin to refuse early scans on the basis that I have never had an early scan that was reassuring even with my pregnancies that went to term. I do believe that early scans are not a good thing generally, you only need to do a search on MN pregnancy threads to see that is the case. Early scans can help reassure a minority of women who are not recurrent miscarriers and who do not have a tilited uterus and who are having a normal pregnancy. Unfortunately a large number of women do not get the same reassurance and are left with more stress, which, in itself, is not good in terms of miscarriage.
Therefore, when an early scan is done the emphasis should be put on the fact that: what is seen is down to the machine and tilt of the uterus, rather than if a miscarriage is happening or not. It should be a chance for the woman to see the pregnancy and not for a prognosis for that pregnancy.
I'm happy with the code as it stands
The info I received following MMC was rubbish, luckily MN was a huge help at an awful time
I think the amendments are appropriate.
I can accept the fact its not always in the womans best interests to be scanned in a busy A&E dept by someone who isn't the best person to do it but all it would take is some explanation.
Not to just be told 'an appointment has been made for you in X amount of days', it makes you feel like they're just not interested. Even if its not the case, even when in reality its just because thats the most appropriate course of action, it just makes you feel shit.
I do agree with Venetia too, is it always necessary for the 'rule' to be 3 miscarriages before investigation?
Could it not be based on patient age and history?
I understand the statistics of first pregnancies, the ratio of miscarriages to viable pregnancies and all that but surely that can't be applied to every woman that walks through the door?
One size just doesn't fit all, as this thread has proved.
Personally I would rather have the scan option even if it were early on, as although you may not see much, you may well do and even knowing something puts your mind at rest a little. I've had miscarriages before and would definitely have appreciated the choice there. Even if there is no "clinical need" a woman's emotional and mental state is also extremely important and if she wanted a scan for her own peace then that should be granted.
I've paid for private scans as early as 5 weeks and there was something to be seen on it so I don't think it being early on in pregnancy has a great deal to do with it. They were internal scans but it made all the difference to me.
Looks good, Rowan, but I still think that you're really missing a trick with regards to the follow-ups, and that this is incomplete i.e. why women have miscarried, and standardising what does or what doesn't need to happen next with regards to tests and treatment for different age groups.
For example, is it really necessary to have 3 miscarriages into your late 30s / early 40s before someone takes your need for answers seriously?
Or is 2 enough?
And there's so much conflicting advice as to when beginning to try again is sensible too.
Perhaps specifically don't include as part of this code, but consider these subjects as a Mumsnet code part II?
I think that sounds really good.
Thanks again for all your comments and contributions; sorry we haven't been on more often to acknowledge them, but were in the final run-up to the campaign launch
and were a bit frantic We have been reading and taking everything on board, as we hope will be apparent when we launch next week.
Some of the comments on here, and some of the feedback we've had from professional and campaigning organisations, focus around when scanning should be offered/available. The points made include:
1) Very early pregnancy scans are extremely tricky, and are often even in the hands of trained staff wrongly interpreted, which is no good to anyone, least of all the woman concerned.
2) When EPAUs aren't available, or aren't open, and women present to A&E, the staff there are less likely to be skilled in the use of scanning equipment in the diagnosis of miscarriage, particularly before the eighth week of pregnancy. Without further expensive training, poor scanning techniques risk making things worse (see point 1).
3) If women facing miscarriages (and their partners) were treated with greater empathy and understanding, and given clearer information about what scanning can and can't achieve in their circumstances, it might be that the need for early scanning would not be so great.
Given these points, we were wondering if we should tweak Point 2 as follows:
'Where scanning is clinically necessary, access to scanning facilities in the case of suspected miscarriage should be made easier. This could mean Early Pregnancy Assessment Units (EPAUs) opening seven days a week, and/or portable ultrasound and trained medical staff being available in A&E and gynaecological units. When women have miscarried at home and have experienced severe symptoms, they should be offered a scan to check that there are no ongoing complications, and that the miscarriage is complete. Where medical staff do not believe that a scan is clinically indicated, or that it would be unlikely to produce reliable results, this decision should be communicated to the patient with tact and understanding, and with a full explanation of the reasons.'
However, this remains your code, so we don't want to make this change without your broad agreement. As ever, we'd be extremely grateful for your thoughts.
I agree that 'I'm so sorry for your loss' is about the best you can say. Although if you're not 100% sure that it's a mc (as happened to me in A&E) and have no means of verifying it, I think all you can say is 'I'm so sorry, it looks like a miscarriage but you will need to have a scan to make sure'.
I agree, just saying "sorry for your loss" is the kindest thing, without trying to find some optimistic side. There is no bright side at the time for the woman. Those things about how common it is and how the next pregnancy has a good chance can wait until the worst is over.
Happylander the others might not agree, but I think a sincere "I am so sorry for your loss" is probably the kindest thing you can say to a woman going through this. Acknoweldging that it wasnt just a foetus, that the woman has experienced a real bereavment that hurts is all most of us want at the time. What not to say is "it happens to loads of people" and "you can always try again".
I would like to see more honesty regarding the choice between having a d and c or erpc I think its called and a natural miscarriage. I was told it would be a bit painful and I would experience some blood loss. I ended up in screaming pain as the baby got stuck and having to have emergency surgery from a haemmorage. It made it all so much worse and had I known there was even a slight risk I wouldnt have made that choice. It was so bloody scary.
The one shining light in the whole process for me was afterwards. I asked for the baby back to bury and the vicar came to see us. More then anyone else he was so kind, compassionate and understanding, taking the loss seriously. Every woman should be given the chance to let go of their baby and grieve. I am not even remotely religious but having a funeral gave me a chance to acknowledge the loss of the future I had so longed for.
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