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

[RowanMumsnet]

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

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.

[TinaOnHerBroomstick]

What an insensitive picture!

[BecauseImWorthIt]

That picture (which hasn't been used in the actual paper) demonstrates perfectly what this campaign is trying to prove. That the rest of the world simply has no idea what it is like for women who are having/have had a miscarriage.

To prop the story with pictures of heavily pregnant women is just beyond belief.

[MmeLindor.]

Catmclellan
I don't see this as an alternative to the campaigns run by charities, but as extra. The Miscarriage Association are supporting this campaign here

Mumsnet is a large forum, and so we have the ability to get the word out there.

I also think that charities such as the Miscarriage Association are more suited to helping those who are going through miscarriage at this particular moment. When I had my miscarriage, there is no way I would have been strong enough to campaign for better care.

I will add the links to the charities that you have posted to my blog.

[BedHog]

I think it would be a good idea for Mumsnet to liaise with the Miscarriage Association to see what has been done already, rather than be advised to give up this important campaign because the MA is doing something along the same lines. After all, Mumsnet is more famous, and therefore has more media 'clout' to get the message out there which can only be a good thing.

FWIW, I knew about the MA because that was the leaflet given to me at the scan where they found my MMC. The way it came across though was not so much a support network, but an association you could subscribe to and then receive a magazine about miscarriage every quarter. I didn't want to pay to be reminded about the horrors I'd been through every few months, so decided not to join.

Agree about ectopics being included - I should imagine they are more devastating actually as they are physically more risky and the embryo is essentially healthy, just in the wrong place. I found comfort from the fact that my embryo wasn't genetically viable, if that makes sense.

[MmeLindor.]

Massive mistake by the Guardian with that picture.

The Mumsnet Blogger Network is supporting this campaign, my blog is here with links to the other blogs such as

Pint Sized Rants

Tee

[MmeLindor.]

Bedhog
From what I can see of the MA website, there is no campaigning on there. There is fabulous information but nothing about changing things. Or am I missing it?

I don't see why this is a competition. I have had a comment on twitter already this morning about this, from someone asking why I am undermining work done by other charities.

Why does it undermine them if we raise awareness?

[RiffRaffeta]

Fantastic wizard for writing to local MPs. Took me less than 5 minutes, well done MNHQ. I have said to my MP I will speak locally if itys helpful.

[KatieMumsnet]

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!

[MmeLindor.]

Oh, the email doodah is great. Have added to blog.

[Crumblemum]

I'm just about to email my MP - thankfully never had a miscarriage, but had some scares which were tough enough - and know what my sister went through. Hope everyone gets involved.

[ParadoxicalGirly]

As a sufferer of multiple miscarriages, I would be more inclined to support this campaign if there were input from a professional organisation, ie the Miscarriage Association.

[Tashanurse]

I just read the article in The Guardian about your campaign and wanted to express my 100% support!
I am not a mum (yet). I am a qualified nurse, I started my career in a gynaecology ward as a Health Care Assistant and taught myself how to treat women who are miscarrying (no training was provided at all despite the fact that I had the majority of the contact with these women). I don't think I did a bad job but I did see examples of what your survey has found to. Additionally I know a large number of friends who have been through this distressing and life changing event. Throughout my training I passionately advocated the very 5 points that you have identified. Particularly, training for staff communication, being treated seperately to where women are with new babies (and in some cases undergoing terminations), detailed information of choices and what to expect and follow up support when needed.
Currently I regularly work in A and E and try on an individual level to give women the care they deserve and need but know the need for a nationwide standard and improvements. I am now going to write to my MP and the other actions you suggest but please say if there is anything more i can do!!!!

[MonsterBookOfHorrors]

MP has an email in her inbox :)

[KatieMumsnet]

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).

[TanteRose]

the Graun changed the photo

[MmeLindor.]

I was going to post a comment in reply to the comment on the Indie article, but on second thoughts why bother to reply to that deeply misogynistic bastard. Eugh.

[TinaOnHerBroomstick]

What obnoxious comments underneath the Independent article! I can't reply to it because I don't really know where to begin. I cannot believe that anyone actually thinks like that in the 21st century

[MmeLindor.]

Tina
I was half way through a ranty reply before I thought that it was not worth it.

[TinaOnHerBroomstick]

Quite apart from the emotional need for a scan, my mc was missed. My baby died 3 weeks before I knew a thing about it. I could have developed a life threatening infection before I starting miscarrying. A scan is often the only way to diagnose a miscarriage! Or maybe us women should all just put up, shut up and die.

[MmeLindor.]

Absolutely, Tina. And the nonsense about women wanting separate wards - when I had my second m/c I was in a surgical ward, so with women who were having hysterectomies and other non-pregnancy related ops.

We are not asking for miscarriage only wards, just separate from the labour wards.

[lottiegb]

The code seems a good idea but a couple of things strike me about the way it is being publicised in articles I've read. I haven't seen your press release, so don't know how much this is about papers choosing their own line, though that can be pre-empted and countered to a degree by your emphasis and examples.

Some differentiation between the physical, psychological and 'sensitivity' effects of poorly handled miscarriage might be helpful, with separate examples. Secondly, awareness that this campaign is being launched in a climate of public sector funding cuts is essential if it to be taken seriously, so acknowledgement that some changes are cheaper and might be expected more quickly than others, with emphasis that some (e.g. better communication) are low or no cost and may even improve NHS efficiency.

Lots of people will instinctively understand that miscarriage can have serious psychological effects but a proportion of people will find that hard to grasp, so it needs to be explained in a way that quantifies it a bit, makes it comparable to other experience and widely relevant (e.g. mentioning the male experience and family context).

Almost everyone will understand a story that says medical care for a physical problem is not adequate (e.g. lack of scans for complications, lack of pain relief). I'd see those aspects as good hooks on which to catch readers, then reeling them in gently with the other elements.

The sensitivity aspect needs to be handled carefully as it can work two ways. On one hand it is potentially the easiest and cheapest to tackle and the idea of NHS staff sometimes being insensitive will chime with many people and with wider discussions. On the other hand it can come across as a bit precious and demanding of special, potentially expensive, treatment (e.g. creating separate waiting areas), at a time when services are being cut.

The separate treatment areas part of the code strikes me as the least realistic as, while separation from heavily pregnant patients might be possible, out-patients (perhaps including some undergoing miscarriages) cannot be prevented from having young childen with them. Especially if their partner is with them, this may be their only child-care option and simply follows from the fact that hospitals are public places.

I read the Indie article and horrible comments (the worst now removed). There is a sub-set of message-board users who habitually post hateful comments about women, they always will but are easily ignored.

What disappointed me about the article though, was that, for the reasonable reader, there wasn't a great deal of real substance to grasp, demonstrating why the issue is real and worthy of action. There is a lot of emphasis on 'distress', quite a subjective concept, not well defined. There is nothing to explain why waiting for a scan or for treatment matters medically. Miscarriage may not be discussed widely or considered in a joined-up way but does this actually lead to treatment being worse than for anything else? I do think that for most readers, as least as a starting point, more objective and quantitative evidence and less emphasis on emotion will be more convincing.

[MmeLindor.]

I agree Lottie.

I am concerned that the emphasis is on the separate wards, and not on the other issues.

Some women have had experienced terribly insensitive HCPs, not been given scans when they should be, having to wait for days until they are seen or until they are offered a ERPC.

[lottiegb]

Looking at the code, I realise I'm not entirely clear what is being asked for regarding separate treatment areas. It says women undergoing miscarriage '...should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy'.

That goes further than not being treated on labour wards.

The Indie article quoted Lisa Francesca Nand (presumably from a case study prepared by Mumsnet) saying 'If you miscarry in a weekend, as I did, you can't get a scan and when you do, you often sit there with people with children, which is insensitive.' I don't doubt the unpleasantness of the experience but this is widening the issue considerably.

My own experience was of sitting for five hours in the waiting area of the obstetric ward of a large hospital after initial examination, waiting for a scan (no-one visibly heavily pregnant, some with partners and children, all subdued), then being sent to the scan area when they were ready for me and back to obs for discussion of results. I've been back since for a routine 12-week scan, with 20-weeks approaching fast, so there were clearly pregnant women there. I didn't spend time with them, so found this experience 'acceptable' (good thing I took a book though!) but it doesn't meet the code. Would a separate scanning facility be required, or a separate waiting area, or was my experience made acceptable by good management?

[getfittomorrow]

The treatment of women with fertility problems alongside pregnant women and those who have / are waiting to find out if they have miscarried is an equally important and closely related issue.

I have experienced both fertility problems and, later, miscarriage. Treatment of women with fertility problems alongside pregnant women is also extremely traumatic and unnecessary.

Bournemouth Hospital - very poor for this
Bath RUH - completely separate units and sensitive care - very good

Please add this to your campaign, mumsnet, as it is part of the same problem.

[KatieMumsnet]

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