Mumsnet campaign for Better Miscarriage Care: the next steps. Can you help?(151 Posts)
As most of you will hopefully have seen from this thread, on Monday, October 10 we're going to be kicking off the Mumsnet miscarriage campaign. With your sterling insight and input, we've put together a five-point code of care (see below), and from now on the focus is going to be on getting it into the inboxes of ministers, MPs, local health authorities and trusts, and anyone else who can help to implement it.
From Monday you'll be seeing a lot of activity about this across Mumsnet and other social networks, and we're going to need as much help as you can give us in making a noise about it. We'll use this thread to keep you updated about what we're doing - and we'd hugely appreciate it if you could use it to keep us updated with what you're doing (campaign-related, that is; we don't need to know about Tuesday's swimming lesson ). Do also please use it for ideas on what we (and other MNers) can do to keep the bandwagon rolling.
The Mumsnet Miscarriage Code of Care
1. Supportive staff
GPs, Early Pregnancy Assessment Unit (EPAU) and A&E staff should be trained in communication and listening skills (including things NOT to say to women who are miscarrying), 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 in cases where scanning is clinically indicated. 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. 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.
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. 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 the available options explained to them. 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, HCPs should discuss with the parents what they wish to happen to the remains of the baby (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. HCPs should be mindful of a woman's previous miscarriage/s when assessing her needs during subsequent pregnancies, acknowledging any extra anxieties and dealing with them empathetically.
Although this code is based mostly on the experience of Mumsnetters who have miscarried in-utero pregnancies pre-24 weeks, we think many of its points apply equally to women experiencing stillbirths and ectopic pregnancies.
Aaargh! Just wrote a long post and it disappeared when I hit "post."
No time to re-write.
Briefly, Aberdeen Maternity Hospital has a wonderful ward called the Rubislaw ward for miscarriage/ stillbirth. The staff are excellent. I was there in 1998, 1999 and 2002, and was very grateful that there was such a ward. (It's a ward of separate rooms, one of which even has an extra bed so that DH could stay)
At that time (don't know current practice) potentially distressing scans were scheduled for the beginning / end of the day, to minimise contact in the waiting room with happy pregnant women.
Bonnie - If only all hospitals could adopt that policy. I'm sure that money would be the reason for it not being possible in most cases, oh and lack of appropriately trained staff and of course 'room' for this facility to be built/housed.
I miscarried my 1st in 2000 at 8 weeks then had dd1 and 2 in 2001 and 2004. I had another miscarriage at 17 weeks in 2006. I had dd3 in 2008 and my 3rd miscarriage in 2009 at 3 weeks.
I wasnt offered any aftercare after any of the miscarriages and i think the 1st one affected me the most.
Feeling very sorry for all of you ladies just now, but inspired by this campaign, and the strength of your stories standing together. I hope that the campaign succeeds and your voices are finally heard enough to make a difference for the future, because what is currently happening seems just appalling.
At the risk of being lynched, I would just like to say that it isn't easy being in hospital for a termination, or following one going wrong (as in my case), and being among those who have just lost their babies, or those who are healthily pregnant either. And I expect the still-pregnant Mums feel guilty too kind of. The loss of a much wanted baby has to be the most agonising experience, and my sympathies are without question. My point is that all women are put in together without choice. And all deserve respect regardless of why they are there. And for judgement to be suspended.
Thanks so much for all your posts and support. Really great to know this campaign means so much to you all - really hope we can do a good job! Things still moving along well, Carrie was on women's hour today (at the beginning of the show if you want to listen again), and you can see more of the coverage here
And lots and lots of bloggers are writing so movingly in support of the campaign here
The Health Minister Anne Milton as said about the campaign:
"Miscarriage is devastating for women and their partners, so it is essential that they get the best care to deal with the physical and emotional effects.
''We welcome the Mumsnet Miscarriage Care campaign and Code of Care in raising awareness of this issue. Every woman who has a miscarriage should be given high quality care to meet their individual needs and help them through the trauma."
Which is great - but we know there is much more to do. JustineMumsnet has said this in response
"It's great that the Mumsnet campaign for Better Miscarriage Care is raising awareness of the issue, but our survey results showed many women are left without adequate care, support and treatment and for this to change Andrew Lansley and the Dept of Health need to show leadership to local hospitals and health care workers to ensure they do everything they can to support parents who are going through the tragedy of miscarriage."
So we'll keep pushing for more support from the Dept of Health nationally.
A parliamentary EDM has been tabled by Valerie Vaz MP, Louise Mensch MP and Lorely Burt MP, so gold stars (and big thanks) to all of them! MPs will be able to sign from tomorrow, so do keep emailing your MP, and we'll publish a link of who's signed (and who hasn't), and that will give us a really good list of people to help bring changes locally.
Phew, think that's everything, but any questions or ideas, do just shout!
And thanks again xxxx
I've e-mailed my MP with the link to the campaign page.
Such heart wrenching stories on here, I really hope that this is just the start of much needed changes in the way that most hospital and HCPs treat and manage miscarriage.
I have emailed my MP with a link to the campaign page also. i truly hope things can change from this.
Thank you for this mumsnet.
I've had four miscarriages. The care I received for the first was atrocious. Luckily since then I've found much nicer hospitals with more sympathetic and well-trained staff. I've emailed my MP and promoted your campaign on facebook. I do hope the NHS take notice.
I was treated before and after my ERPC on a gyno ward which was the best option I think.
Just had my first miscarriage and my treatment at my local EPU was excellent. I was treated gently and with sympathy and that, I feel, has to be the very foundation of whatever a miscarrying woman has to go through. For the medical staff to be kind, sympathetic, and calm...no rushing of decisions or information provision.
Having a unit which is separate from the labour unit, no matter how small, is a very intelligent idea, especially given how common miscarriages seem to be.
I've been alerted to this via twitter this and want to add my support. Although I would not like to tread on the toes of the excellent work of the MA - a charity that really needs support. I've just started writing a blog about my experiences in 2008 with 2 missed misscarriages. The EPAC staff were fab but elsewhere in the hospital was horrendous, I complained afterwards but didn't have the emotional strength to follow it up further. I wish I had.
I now have two beautiful daughters but not a day goes by that I don't think about the mmcs and the impact it has had on my life (and my behaviour as a mother) since. Next year I will be running the London Marathon in aid of the Miscarriage Association which is the reason I've started the blog. I was given a leaflet at the hospital about the MA following the first MC and I am stunned to learn that this is not always the case. That is why we need to support them - so they can get their information out there. And make a difference.
Is this campaign being endorsed by the MA? I agree with pp, you should work together.
Not sure about the MA, but I think that raising awareness of the issue is a good thing, and getting the message out there is more important than worrying about stepping on toes. I am sure that the MA will appreciate all the publicity that they can get.
If you would like to link up the MN blogger network, you can do so through my blog here.
We already have 19 stories on the blogger network, some from MN bloggers, some from bloggers who are not on the network.
I really think that we have to forget about affiliations and just join in publicising the issues at stake here.
You can now see if your MP has signed up to the Early Day Motion in support of the campaign here. Not sure it's 'live' might be updated daily, but keep your eyes peeled.
If you get a response from your MP directly - please do post it here so we can see who's supporting the campaign.
Barbiegirl thanks so much for your post and blog, hope you're able to link up with MmeLindor. Yes, pleased to say we've been talking lots to MA, they've given lots of input to the code, and you can read their quote about the campaign here. We're definitely aiming to compliment their work and improve what we can for woman miscarrying
Ooh and here is a rather lovely page of all the bloggers talking about the campaign
My MP has replied:
Thank you for this. I am sorry to hear of your own experience with the NHS
in this area.
I have regular meetings with the local NHS and senior management at both
Darent Valley and Pembury Hospitals. I shall certainly raise the
Miscarriage Code of Care with them.
Michael Fallon MP
Thanks for letting us know RiffRaffeta. Gold star to Michael Fallon. WIll be good to hear the NHS's responses.
I'll ask him to keep me updated.
I was just reading MmeLindors blog and thinking about the excellent care I recieved when I miscarried earlier this year when I remembered about a pretty shoddy member of staff at the hospital. I was going to the hospital with DH to get a scan at the EPAU. I was pretty certain that I was miscarrying and naturally extremely upset about it. I walked into the reception area of the Royal Surrey EPAU unit and had the misfortune to encounter the least sympathetic, utterly uncompetent moron. I was very upset and could barely get my words out. It took me a few moments to calm myself enough to speak and during that time, she looked at me like I was something on her shoe. She kept saying, "Yes?" and looking at me with complete contempt; it was pretty fecking clear why I was there for goodness sake!!! I can't believe that I have now just remembered this and I'm ENRAGED!
This is so valuable. I was so alone and bereft after my miscarriage. What a good idea. Good luck ! So many Mums will benefit .
My friend had a miscarriage away from home and when she asked the nurse (Manchester hospital) for advice about recovery etc she was given a leaflet written for people who have had abortions! Unforgivable! It would help if nurses had a little basic compassion and I hope this campaign will increase awareness. Big hugs to everyone posting on here with their own experiences.
That is terrible, how awful for your friend.
I have posted the last two guest blog posts, from Sarah
and ending on a positive note Kirsty praises the NHS
If you have had a positive experience, would you add a short comment to that final post - feel free to name the hospital.
It would be good to do a positive list of hospitals where they get it right.
Crawley and east surrey hospital in Redhill were really good with really professional doctors and nurses. it was a shame east surrey was dirty but other than that... My doctors weren't and it's a shame that there's no follow up visit to the doctors or midwife after either
This is a fab idea. I had a MC in 2008 at 6 ish weeks.
GP was fab and arranged EPU appointment when I started bleeding heavily. Although separate from the maternity ward the EPU was just outside the labour and postnatal ward so all the labouring mums, mums with babies and happy visitors were coming past.
EPU nurses/ midwives. radiographers - fab.
Made to come for scans and bloods every other day for up to a fortnight. Once I was made to wait for a Dr in the waiting room of the maternity ward from 7AM til 5PM and had not eaten or drunk anything as I'd been told I might need to be sedated.
After 2 weeks of this and 2nd day in the waiting room I inisited on seeing a Dr (turned out that it would be unsympathetic Bit*h of dr who deliver DD1 and told me I had a psychological barrier to pushing and ended up with a 4th degree tear! who I would still like to murder but that another story).
All this time I was bleeding heavily and was pragmatic in realising that there was no future for that baby. I had even offered to sign a letter for a termination to get it on with.
In the end the Dr asked me if I wanted a laporoscopy so I told her that she was the qualified one and I just wanted this to be over and I had a methetrexate injection. The whole final process took seconds and I had to stay for 20 minutes in a side room on my own. No counselling, no support, was made to feel like a nuisance.Left on my own to sort it out.
My GP however, what a fabulous man!. Gave me a 2 week sick note because he acknowledged that my hormones would be all over the place and the community midwive offered support too. Hospitals are shocking!
I have a friend who recently went threw a misscarage this is a great campain well done!!
have you put together a similar plan for the friends and family of the woman who is going threw this. we all want to be supportive but just sometimes it is not easy to know what to do.
Thank you mumsnet for raising the awareness of what is sadly an experience so many of us go though at some point.
Having gone through two miscarriages, I've had really mixed experiences with health care professionals. With my first miscarriage a female A&E doctor told us that we shouldn't feel that we were being punished by God for not being married (I'm not religious and thought this line wholly inappropriate); to being sat with heavily pregnant mothers and being asked to participate in a 'healthy pregnancy' study whilst waiting for a scan; and being told by my female GP that women don't need to take time off work for a miscarriage because it's just part of life and something one needs to get on with. These experiences were not only distressing at an already painful time but led to a real sense of shame and confusion at a time when I just wanted information about what had happened, how to look after myself and how to try again. It took me a long time to come to terms with the loss as a result of the advice I received. Thankfully, I have an incredibly supportive and patient family and partner (now husband) who helped greatly. We sought help from the miscarriage association (really, really fantastic) and did our own research to understand what had happened. With the second miscarriage we were lucky to receive excellent care from a team of really supportive, understanding and kind nurses and gynaecologists from our hospital's EPU who made dealing with my second miscarriage so much easier and less painful.
And this is the key - those who were tactless were not from the EPU, were of a much older generation who maybe hadn't had training for some time. I hope this doesn't sound demeaning and I'm sure that there are lots of wonderfully caring older GPs and A&E doctors out there, I've just been unlucky. But I think it just highlights the inconsistencies within the NHS at present.
Mumsnet, all the very best with your efforts. I sincerely hope that your campaign translates into caring support and treatment for all who suffer pregnancy loss. It means an awful lot to me, on a personal note, that this is being raised and addressed.
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