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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.
Thankfully when I had my miscarriage, it was handled well, swiftly and sympathetically. (With the exception of the truly dreadful name for the op I needed to have - the ERPC)
Are you planning on promoting the code just within healthcare and political circles, or will you be using your contacts to raise public awareness through the media, in particular 'lifestyle' or Daybreak/This Morning type programmes, womens magazines, radio (Jeremy Vine?) etc?
Have you thought about starting a downing street petition? If you get 100,00 signatures then it could lead to a debate in the house of commons
I have kicked off the Blogger Network with a post to test our link-ability and raise interest amongst other bloggers.
We will all blog about our experiences of miscarriage, and are offering any MNetter who wishes to publish a guest post the opportunity to do so on one of the MN blogs.
On Monday we shall link up our blogs and post a link here.
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!
Really good - precise and to the point. I hope it gets the attention it deserves and makes a real difference. You are also spot on in that it is not just miscarriages, but ectopics and stilbirths that deserve a much better standard of care so the points are also relevant. Perhaps you get The Ectopic Preg Trust to post a link to the code of care on their website, I'm sure they have message boards? Presumably the more voices that stand behind this the better?
Would it be worth trying to get a sleb 'figurehead' to help with the campaign?
I know of several high profile women have sadly lost babies at various stages of pregnancy in the last few years - from the top of my head, Amanda Holden and Lily Allen have had stillbirths, Kelly Brook a late miscarriage, Sarah Beeney and Nadia Sawalah (multiple) miscarriages. There must be many more and one of them might feel the issue is significant enough to help. (Although I appreciate many of them will have had private healthcare)
That sounds great. I especially like the mention about care in future pregnancies. I personally think that any woman who has suffered a mc should be entitled to a 'bonus' scan around the point at which she lost the previous baby. I haven't managed to get pregnant again yet but when I do I can't stand the thought of having to wait until 12 weeks for a scan (particularly as my mc was a mmc) so I'll pay for one earlier but not everyone has that option.
Thank you for this.
katie In all honesty, EDMs are pointless and waste of money; the only purpose they serve is to make lobby companies money. I work in Parliament and we receive countless emails everyday asking us to sign EDMs. Most MPs won't, either on principle, or because they are a Government Minister and can't - it doesn't mean they don't support the issue.
Also, if you have some sort of 'standard' letter being sent to MPs, their staff will just send standard letters back that are drafted by a research service - so most of the time the MP won't even see the campaign text.
I honestly think the petition is the way to go - no idea how many members you have on mumsnet - but pretty sure you must be able to get 100k signatures pretty quickly. You could get people to contact their MPs asking them to make some sort of 'pledge' online to show their supprt - then you know what MPs you are missing or who aren't supporting and people that live in their constituencies can bombard them with messages - or turn up at their advice centres.
PLEASE don't do the EDM route. It is such a waste and this is a brilliant campaign that stands a real chance of success.
I agree to the bonus scan. That would of helped me when pg with dd.
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.
Is there a place to post a link to blog posts about Miscarriage, so we can take comfort from easch others stories?
There is a thread on the blogger network where we are collecting blog posts. I will be putting a link thing on my blog (and you can put the link thing onto your blog). We want to link everyone up.
Here is the post on Bloggers Network
I say this every time it comes up so sorry if I am repeating myself but why can't this be called 'pregnancy loss code of care' rather than just 'miscarriage code of care'? That way it will include people who have ectopic pregnancies too. I feel those of us who have had an EP always get over looked. An EP is just as devastating as a miscarriage.
Good Point iMemoo!
Message withdrawn at poster's request.
Good to see this. I am currently going through a suspected miscarriage. It happened on thurs and I have had to wait until tomorrow (monday) to have a scan at the EPAU. I am in limbo, confused, upset and not had much help or support from professionals since it happened. I am now wondering what tomorrow is going to be like.
Xbox so sorry to hear what you are going through. Similar to mine in 2009 and such a lonely, sad feeling. Thinking of you.
To everyone who thinks this is a great idea - this is already happening through the Miscarriage Association, this work does not need to be re-done you need to support the MA and not do something seperately - working together is the way forward - find what you are doing is a waste of time, money and resources. I urge you to use www.miscarriage-association.org.uk and organisation at the forefront of miscarriage care. I do not work for them - I am among the hundreds of people who use their services.
Imemoo the ectopic pregnancy trust will have information and support for those who have experienced ectopic pregnancies www.ectopic.org.uk
Cat I had never head of the miscarriage association untill you have just posted it.
My ignorance I suppose, but if the hospital had told me about the MA I would have felt I had support? This is a reason as to why I find this campaign most important. I was given no support or advice.
It is great that hundreds of people are using their support, but for many others we havent had that unfortunately.
If mumsnet can change that, then I will be happy to help.
I realise that not everyone has heard of them and that is why I believe it is important for forums like mumsnet to signpost people in their direction where they can get the most up-to-date information rather that re-do what is already being done. It would also be helpful to the MA to know which hospital and/or GP service you used so they know where the gaps are. As a person who has worked with many charities over the years I believe you gain more as a collective than as an individual and that is why I urge to work closely with SANDS, Ectopic Trust, Miscarriage Association and Ante-natal results and choices please see www.babyloss-awareness.org to see what is being achieved by working together
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