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.
I've filled out the survey and was actually very impressed with out sensitive you managed to make the questions. Hard to answer, but as easy as you could, IYSWIM?
I think Item 4 above is really 2 separate points. Good information and effective treatment and shouldn't be lumped together.
Done. It was very gently written but it still made me cry!
Meant to also say, thanks so much for doing this. I think it's really important
Clicked post too fast. Meant to add that, actually, I thought it was done extremely sensitively.
Done. Thankyou for both handling this sensitively and aiming to improve care.
It was sensitively done though some of the answers were tricky because my last miscarriage was a mmc of a twin who couldn't be removed via ERPC so had to stay there throughout the remaining pregnancy. I guess it would be hard to tailor the survey to that though.
I feel it is so important for women to talk about miscarriage. I felt I was the only woman who'd ever had one, that it was a rare event, then I found out that all my female colleagues had been through it, as had nearly all my friends, but we kept it quiet, carrying around a secret hurt, only opening up to other women going through the same thing.
I have completed the survey. Some of the stories posted on Mumsnet showing how badly miscarriages can be handled by a hospital are just so sad. I feel fortunate that my local hospital already seem to follow all the points listed.
Done the survey.
In the code, the information leaflet used should be appropriate to the hospital, and have information and contact details relevant to that area. Not just chucking MA leaflets at people (all I got).
No woman miscarrying at home should have to post on an internet forum while bleeding heavily because their HCPs haven't given them information as to what to do exactly if they are in a lot of pain, bleeding very heavily etc
If your information about what will happen to the foetus says that certain things will happen - like invitations to a service for parents - make sure that actually happens. I was very distressed to have to phone the hospital as the leaflet said they would contact me to check about the disposal of my third baby, and that never happened. A shining light in the whole sorry story was the care of the chaplaincy in helping me on that
All done. Thanks for keeping this in the public eye, it's very important.
Number 2 is a massive issue to me as well as choice. we were never given any choices with our MC's, I had an erpc everytime.
After 5 mc's one living DD, another mc I fell pregenant again. At 14 weeks I started to bleed heavily with lots of cramps and we naturally thought "here we go again"
My problem is that the staff also thought "here we go again" when I was wheeled onto the ward and a portable scanner was found. The staff member confirmed we were mc'ing and we were left in a side room with DH cleaning me up whilst a staff shift change took place and a erpc booked.
New doctor came into the room to introduce himself and I told him like I had with the previous doctor that most of my pain was in my back on the left hand side. I'd previously had an eptopic so thankfully the new doctor scanned me again and found a heart beat.
DD2 is now 7yrs old.
Sorry to shout.
Done - also think it was senstively handled and well done mumsnet for the campaign. Keep up the good work
glad the survey is fine....[weak smile] and for bohicas dd2
Bohica - I had exactly the same experience. Had an A&E doctor on a Saturday trying to find a heartbeat when I was 15 weeks, said he couldn't and that it wasn't my fault etc. Went into the EPU on Monday and there was my DS squirming around, happy as larry.
If you don't know how to use a doppler, don't!!
I think it is important that HCPs recognise that any miscarriage, no matter how early, should be treated as a miscarriage. Not because very early miscarriages necessarily require medical treatment - but because of the emotional effect on the woman can still be significant.
It is also important for GPs to properly record very early miscarriages as such, in order to have a complete picture if the woman ends up suffering from recurrent miscarriages. It is very difficult knowing as a woman that you have had several miscarriages, but the GP failing to take your word as they are not in the system and therefore leaving you to have more miscarriages before deciding to refer you.
Good campaign, but a couple of points:
1. Disappointed that you've backed away from the idea of standardising responses with regards to looking for miscarriage causes / treatments. Could this be brought in at a later stage? For example, my GP was not well-informed as to the role of the thyroid in recurrent miscarriage, and it's possible straightforward treatment with levothyroxine. And if you're getting a bit long in the tooth you possibly don't want to wait for 3 losses before you're investigated for potential causes...
2. Don't just make it about the NHS; I have also had difficult experiences at private clinics; for example I vividly remember sobbing my heart out at the receptionist while struggling to make a payment for the scan which had found that the baby's heart had stopped beating, as she sat amidst a sea of photos of happy new born babies....it would be so much better to take the payment before the scan!
When I asked at one scan appointment if I could have a scan picture I was charged £2.50.
£2.50 for the first and last time I would ever "see" my baby.
So sorry to hear I'm not the only one who was told the wrong outcome Christine
Done. I totally agree, it was so well written and suitably sensitive.
I really hope this campaign is a huge success, the system needs a bloody good shake up, women (and partners) just shouldn't have to go through some of the awful experiences on the first thread
Bohica, glad to hear such a beautiful outcome from a horrid experience
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