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Mumsnet campaign for Better Miscarriage Care: the next steps. Can you help?

19 replies

RowanMumsnet · 06/10/2011 11:31

Hello,

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 Wink). Do also please use it for ideas on what we (and other MNers) can do to keep the bandwagon rolling.

Thanks Thanks
MNHQ x

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.
  1. 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.
  1. 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.
  1. 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.
  1. 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.

KatieMumsnet · 06/10/2011 20:55

Hi BedHog yes we're starting the slightly painful process of elbowing our way onto as many programmes and into as many newspapers as possible.

Very warm response so far, but I can never be confident about how this will turn out on the day (and how many people will ditch us in favour of Jodie Marsh's new body or similar). Have a slightly strange obsession with Jeremy Vine (he was a favourite for me during my maternity leave (please don't judge)) so is definitely on the list. We'll try and let you know all we're doing.

Thunderboltkid we did think about a downing street petition but we're going to try first with an Early Day Motion - a rather archaic bit of parliamentary procedure that allows MPs to pledge support. We thought this was a good idea, as we can all try and make sure our MP signs up, and then make sure they're working locally to support the code. As the NHS gets more devolved, think having someone sticking up for the code locally will be key.

Finally MmeLindor thanks for getting all the bloggers up and running!

Keep your eyes peeled on Monday!

KatieMumsnet · 07/10/2011 19:52

Hi ThunderboltKid, agree with lots of what you say re EDMs but we thought it was quite an easy way of seeing who's signed up and who hasn't. Agree we need to keep that online too, to cover off ministers etc. I'm hoping that come next Fri, MNetters can have a quick glance at a page here, see if their MP has signed up or not, and if not fire off a quick email to get them on board, shamed by their neighbouring MP if they already have signed up.

I haven't looked in detail at the 100k thing, but at the time we started talking of this, it had just launched, and everyone was doing it, so we didn't want to get lumped in with the 'bring back hanging' brigade etc, and I wasn't sure it was going to work at all. We'll see how we go on Monday, and keep our options open.

Bedhog we did consider celeb, but then thought, actually MN isn't really that celeby, so we'd keep it about Mumsnetter's experiences. Rest assured though, we'll be tweeting everyone and anyone vaguely resembling a celeb come Monday though, and please do the same.

KatieMumsnet · 10/10/2011 09:04

Hi All

Thanks for all the comments - great the campaign is finally up and running. Thanks to everyone who's blogged, posted and filled in the survey to make the campaign a reality. Not always easy, but all the contributions have helped us get some great press today, the first step hopefully to actual change.

We're really pleased to have so much support from lots of different organisations involved in this field, including the Ectopic Pregnancy Trust, Tommy's and the Miscarriage Association - there is so much need for all of us, and as our survey results showed, much more that we can all do together.

So and I know it's early, but, I've just emailed my MP, tweeted and added to my Facebook (how have I missed those handy little buttons on our page for so long).

Please do the same - really need to make some noise now!

KatieMumsnet · 10/10/2011 10:59

Just to let you know Carriemumsnet will be talking about the campaign on the Jeremy Vine show today (12-2, Radio 2) and Lisa a Mumsnetter, featured in the Independent, will be on ITV news (1.30pm).

KatieMumsnet · 10/10/2011 14:33

Hi lottiegb Thanks for all your comments. Really good to get, and helpful to hear your experience. We're really aware that the NHS is far from flush with cash at the moment and spent a long time looking at the points in the code and talking to experts about what they could mean.

Many of the points in the code are covered by existing guidelines, for example, the Dept of Health 'Health Building Note' states that women undergoing miscarriage or suspected miscarriage should be separated from women having routine AN and PN care, and women terminating an unwanted pregnancy.

We're really not calling for new wards for miscarrying mums, but for hospitals to put sensitivity and thought into how women are treated. Around scanning, this does mean it's better when early pregnancy units are away from routine scanning (as many hospitals do) and when patients are treated on wards, that hospitals consider using surgery or obstetric wards rather than post natal wards.

But as you (and CarrieMumsnet on Jermey Vine said) often if there is an explanation and preparation about where you're likely to be scanned this can help a great deal.

You're right, it's one of the areas the media are focussing on - it's not one we've pushed, above the others (our press release led with the pain relief) but we're obviously trying to get as much publicity as possible for the campaign.

Hope that helps x

KatieMumsnet · 10/10/2011 14:38

And big thanks to Andrew Gwynne MP and Catherine McKinnell MP who've tweeted their support.

Just trying to track down if our EDM in Parliament has been tabled yet, but in the mean time you can find out if your MP is on twitter here and tweet them to get them to show their support for our campaign for Better Miscarriage Care.

Do post and let us know their response

KatieMumsnet · 10/10/2011 14:40

Many apologies and Louise Mensch MP

RowanMumsnet · 10/10/2011 21:36

Thanks bamboozled - we are shattered cautiously pleased Smile - long way to go yet though!

Thanks so much for all the input, and for sharing your stories on here. I had a read of some of the bloggers' posts earlier on and it was all a bit gobsmacking.

MNHQ x

KatieMumsnet · 11/10/2011 14:57

Hi Again

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

KatieMumsnet · 12/10/2011 12:16

Hi There

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

KatieMumsnet · 12/10/2011 12:29

Ooh and here is a rather lovely page of all the bloggers talking about the campaign

KatieMumsnet · 12/10/2011 13:51

Thanks for letting us know RiffRaffeta. Gold star to Michael Fallon. WIll be good to hear the NHS's responses.

KateMumsnet · 17/10/2011 15:49

Hello all

Thanks so much - again - for your support and for sharing your experiences, and to MmeLindor and all the lovely bloggers who've written about miscarriage. Nessa, and anyone who is going through it right now, we're thinking of you here at MNHQ.

Please do email your MP if you haven't already done so (you can check here to see if they've signed the EDM). And do let us know on this thread if you get a direct response from him or her, so we can keep our list of supportive types up to date.

CristinaaarghdellAaarghPizza, would you mind letting us know who your MP is so that we can pop her on our list - do feel free to PM if you'd prefer?

RowanMumsnet · 19/10/2011 19:04

Hello hello

Secondtimelucky - I think we're going to try the carrot rather than the stick for now (ie we're unlikely to compile a list of people who haven't replied, although it would be interesting to hear of people who've said a flat 'no'!)

BIWI: do you think you could try to wheedle something a bit stronger out of him? Maybe a commitment that he will raise it in meetings/correspondence with appropriate agencies? Suggest that a nice story about him supporting the campaign might go down rather well in the local paper ('the BIWI Bugle and Gazette', as I like to think of it)?

CombineArvester - Yay! and thanks for letting us know.

MNHQ x

RowanMumsnet · 20/10/2011 17:08

We're very sorry to hear that, browneyesblue. Hope you are doing OK. And thanks for taking the time to write to your MP.

We've had a flurry of EDM signers in the last couple of days, as well as a few more MPs indicating support in other ways (including Diane Abbott asking a question in the House about it); you can see the current roll of honour here. Do please keep the pressure up!

Thanks
MNHQ

RowanMumsnet · 26/10/2011 17:17

Hello

CeeMac - we're sorry to hear about your experience. We do include the counselling point under point 1 of the code ('Follow-up appointments and/or counselling for those who feel they need it should be routinely offered after miscarriage'), but thanks for the suggestion!

down2earthwithabump - that's great, thank you. We've added Dawn Primarolo to the roll of honour, but if you'd like to prompt her to sign the EDM as well, the link is here. Do please let us know if you hear anything more from her.

ALovelyBunchofCoconuts - another marvellous response, thanks for letting us know. The link to the EDM is above if you want to prompt him to sign it as well. Again, please let us know if you hear any more from him about how the local healthcare authorities respond.

The Twitter hashtag is #miscarriagecare - so if you're asking someone to send out a supportive tweet, please ask them to include that in the body of the message somewhere. If they can squeeze it in, it would also be great if they could mention @MumsnetTowers in the tweet as well, as we're more likely to pick up on it that way.

Thanks,
MNHQ x

RowanMumsnet · 21/11/2011 12:14

Hello

Thanks fiona - it's disappointing, but good to know where we stand!

And thanks also ALovelyBunchofCoconuts: again, not great news, but interesting. If you're happy to do so, we'd love to see the letter - you can email us on [email protected], or put it up in full here if you like?

Stella Creasy, the Walthamstow MP, has passed on to us the following response from Anne Milton, Minister for Public Health and responsible for maternity policy:

'Micarriage is a devastating event for women and their partners and I know how important it is that people consistently get good care. It is important that throughout, they receive care based on current evidence, in appropriate locations, which supports both their physical health needs and emotional wellbeing.

To assist healthcare professionals, in 2008 the Royal College of Obstetricians and Gynaecologists published Standards for Maternity Care and for Gynaecology. Local clinical leadership is fundamental to the implementation of these standards, including the design and management of a collaborative miscarriage care pathway focused on quality outcomes to meet the emotional and support needs of a woman and her family as well as ensuring physical safety.

The Department has commissioned the National Institute for Health and Clinical Excellence to produce a clinical guideline for the NHS on the assessment and initial management, both physical and emotional, of pain and bleeding in the first trimester of pregnancy. I am pleased that Mumsnet is a registered stakeholder in this work, which is due to be published in November 2012.

There are places where practice is excellent, but we know that it needs to be consistently excellent across the country.

The Mumsnet Miscarriage Care campaign and the Code of Care will help to maintain awareness of this important issue and re-emphasise the value women place on the delivery of high-quality services that are responsive to their individual needs.'

**

We think this is fine so far as it goes - we fully support the RCOG and NICE guidelines (in fact most of the points made in the Code of Care are already in published guidelines) - but we think that this issue needs national political leadership as well as local leadership, and we're going to be trying to bring pressure to bear to help this come about.

KateMumsnet · 24/11/2011 11:43

Thanks again for all your work so far - we've had some great coverage and loads of support. Now the difficult bit - actually changing things - begins.

You probably remember that our Miscarriage Code of Care stresses the importance of communicating sensitively with miscarrying parents. In particular, many of you found the term "evacuation of retained products of conception", used to describe the surgical management of miscarriage, very upsetting.

Following on from our campaign, the Department of Health have agreed to consider alternative terms suggested by MNers. We do understand that this might be distressing but, if you can, please do post your thoughts here - it could be an important first step to real progress.

The DH are interested in all suggestions, though bear in mind that the language needs to be very precise and clear; parents have to formally consent to this procedure, so it's crucial that the phrase isn't open to misinterpretation.

As an example, in some of their literature the RCOG use the term 'pregnancy tissue'. Is this preferable, do you think, or is there a better term?

And if you don't want to suggest an alternative, please do check if your MP has signed up. It would be really powerful if we could get a 100 signatures before Christmas.

MNHQ x

KateMumsnet · 24/11/2011 21:01

Hello again

MonsterBookOfTysons and ChristineDePizan - yes please, it would be brill if you could scan and email to campaigns @ mumsnet dot com.

Thanks very much for your thoughts so far on the re-naming of ERPC issue. A little late in the day Blush we've realised that this really ought to have its own thread, so we've started one over here - do join us there?

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