Our Miscarriage Care campaign: NEWS

[RowanMumsnet]

Hello

As lots of you will know, our long-running Miscarriage Care campaign asks healthcare providers to implement our five-point Code of Care - based on MNers' experiences and views - for all women seeking healthcare for a miscarriage or suspected miscarriage. (Lots of the points are also applicable to women experiencing stillbirths and ectopic pregnancies.)

We recently ran a big survey to see how things are looking, and next week (commencing June 16) we're going to be kicking up some noise about it, with a strong ask to national politicians in the run-up to the 2015 General Election. So please watch this space and get your sharing fingers ready...

We also wanted to let you know that we've made some changes to Point 4 of the Code, to reflect the fact that the ERPC procedure has been renamed (which was one of our campaign aims), and also to reflect the fact that lots of you feel strongly that women should be allowed to choose surgical management of miscarriage if that's what suits them best. You can see the new version here.

And finally: our hashtag for previous versions of the campaign has been #bettermiscarriagecare, but frankly that's a bit long. So if you have some ideas for short but arresting hashtags, now's the time to give us your suggestions.

Thanks very much - as ever, please let us know what you think.

oh madrigals. hope it is all going ok. I spotted all the way through ds's pregnancy which was terrifying seeing as I had just had a miscarriage too.

the one thing I found difficult was rebooking a booking visit with the midwife. (got pregnant first cycle after miscarriage) and having to cancel the previous pregnancies now not needed 16 week appointment at the same time.

Agree about training for all staff. Had some hideously insensitive treatment by the receptionists in the ultrasound team, which had a knock on effect on my subsequent healthy pregnancies - I dreaded every scan because of the staff.

#miscarriagematters ???

I like "#miscarriagematters" as a hashtag.

Just got one correction that it is spelt fetus. (Foetus is a 'hypercorrect' spelling of the word based on incorrect Latin that used to be used in the UK, but now 'fetus' is used routine spelling here as well.) I think it would be better used just to correlate with all the RCOG/NHS paperwork etc.

Very encouraged to see the progress of this excellent campaign, just as a woman and mother and former HCP with an interest in best practice in health and social care.

All great.

Although in point five do you mean sympathetic rather than empathetic?

Did just wonder after a quick read through if you might include something about care of the woman's wider family as I think everything here is, quite understandably, focused on the woman herself.

For example I know such loss can be devastating for fathers as well. And I well remember phoning up to ask after my friend to be told she was having a D&C. I didn't know she'd experienced pregnancy loss, only that she was worried. I think staff could start more conversations with "Unfortunately or very sadly ...." if there is any doubt as to what the caller might be aware of.

Glad you're doing this. A bad MC 18 months ago ended our hopes of completing our family and its still too raw to comment constructively, so just... keep going...

This looks great. I agree with Madrigals about administrative staff. I had to phone to arrange an early scan due to a threatened miscarriage; I explained that I already had a 12 week scan booked, and the receptionist said 'Shall I cancel that then?'. I had to explain that I hoped not... It's little things like this that make the whole thing worse.

Is it too late to fill in the recent survey? I filled it in a month ago, at home, on day one of a miscarriage that then took a turn for the more interesting, medically. Three days in hospital, much dealing with professionals, then and after and, they have all been really good. I'd like to be able to say how, if still useable?

Great work - I hope you're able to get some real attention on this next week. I also agree that #miscarriagematters would make a good hashtag.

Thanks again to everyone involved in turning the spotlight on to this important issue. I've mostly blocked the whole experience from my mind now and very sadly haven't managed to get pregnant again yet (just passed my EDD) but assuming we do get there and are luckier next time I'll still take comfort from knowing that this campaign will hopefully make the most distressing experience that I've personally ever been through a touch more bearable for other women.

Looks good. Point 5 is especially important and doesn't happen automatically though it really really should. All these points are a good summary and I hope the message gets across.

I like #miscarriagematters too - good thinking allisgood

Just wanted to make a suggestion re. promoting this. There's a really strong Twitter network #wenurses that would be a great way to reach lots of people. Great work, well done.

Thank you MNHQ for keeping on this.

I think #miscarriagematters is great.

Access to scanning at weekends and allowing women their choice of management are the two most glaring issues for me.

I also echo what others have said about staff training needing to encompass all staff including non-clinical ones. In my experience many HCP's have been sensitive and sympathetic, but this has not been the case with non clinical staff.

A couple of glaring examples that come to mind: firstly an EPAU receptionist greeting me with the phrase 'you again' when she saw me sitting with others in the waiting room when I was attending for my fifth miscarriage.

Secondly a cleaner who came into my room as I was in the early stages of labour delivering my son who had died 20 weeks into the pregnancy and comparing it to her own early abortion, noting that 'a lot of us have had to get rid of one at some point'.

I like #miscarriagematters too, and am really pleased you're pushing it, MN :) I was treated so dismissively by all the HCPs during a 21-week mc that, years later, I burst into tears when a nurse simply said "I'm sorry" at a routine questionnaire. She was the first medical person to express any sympathy. I understand things are supposedly better now, but not nearly enough.

Well done mumsnet, and thank-you! This looks great! I also think the revised point 4 is very important and could improve the mc experience for many (I had direct experience of a very badly managed mc as surgical management was not offered/considered until a very late stage).

Another fan of #miscarriagematters.

Will get writing to my local provider and msp.

Thank you again for your fantastic work on ths!

I had a miscarriage in Australia and I have to say my care met all of those criteria it made what was an intensely horrible time sort of special in a way. It was only after spending time on the miscarriage board that I realised that my care was unusual.

Thanks for taking this up mumsnet.

Looking great, thanks for taking up this fight! ERPC was a term that was used to me and it's horrible!

Can we include something around GP knowledge? A locem doctor told me a mc at 11 weeks would be "like a period". Imagine my terror when it wasn't!

Also can we fight for IVF help for women who've had mcs? My CCG restarts the clock on IVF treatment if you've had a mc even if it's under fertility drugs. Because I've had a mc I would have to wait 3 years for IVF now.

I also think it should be easier to have early scans if you've mc'd in the past. Rather than waiting until 12 weeks worrying again.

Wishing you all healthy pregnancies for the future.

X

Many have made a great point about training admin staff. The drs and nurses I saw at the epu were fantastic. Very sensitive and caring. The receptionist... Not so much. She wasn't unpleasant, just a bit offhand. E.g. When I first arrived having found my way that is the maze of a large London teaching hospital, she dealt with the person in front of me and then faffed with some paperwork before even acknowledging me. Not a huge deal but I was upset, bleeding and in pain and feeling a bit fragile! I could have done without standing at the counter like an invisible woman. A bit of courtesy and sensitivity is needed. To her its obviously just another day at reception. To me, it was a visit to find if I was losing another much wanted ivf baby.

Have only just found out about this campaign and must say what a great job you're doing. I am still going through a miscarriage that started two weeks ago. I was taken to the EPU from A&E and was just left to lose my baby in the waiting room. I realise that people had appointments but I was bleeding extremely heavily, in pain and very distressed. Being expected to wait in a tiny waiting room with women at various stages of pregnancy for 2.5 hours (including seeing happy couples walking out with their scan photo) wasn't a fantastic experience. When I told the nurse I was passing clots (basically I knew I was passing the baby) she just put on what she thought was a sympathetic face and told me all the other people were emergencies. I don't actually remember seeing anyone else being brought there in a wheelchair with blood running down their legs!

Point 5 is so important. I was assured that my GP would be informed of what had happened, only to go into my appointment a week later with him loudly congratulating me on my pregnancy and me bursting into tears. When I asked the EPU why my details hadn't been passed on I was told they should have been. Brilliant!

Thank you for all the hard work. This issue is so important. Because it is unfortunately common it can be treated in an offhand way with no consideration for the devastating physical and emotional effects for the people involved.

Can anyone clarify what is meant by "clinically indicated" wrt scanning?

I noticed that when I was pg following mcs, and requested a scan, I was told they didn't like "too many scans" as no one could say for sure what the effect was on the embryo. However if it was a scan they were wanting me to have, suddenly "oh no, ultrasounds are completely safe otherwise we wouldn't do them".
Cost saving exercise that ignored the cost to my mental health, IMO.

Great work mumsnet

Thanks MN, as a recurrent miscarrier I have a lot of experiences that I'm happy to share. It's so important that the care is managed appropriately, and it's so frightening when you are 'new' to this. You shouldn't have to fight to get the information.

A big issue I'm finding is that the specialists don't agree with each other once you get to the unlucky 1%, so you never quite know what the right advice/treatment is, and you can't always get them to agree to give you prescriptions recommended by others.

Happy to talk, write, promote, fundraise etc. Unless I should happen to fall pg again, in which case I shall be sitting quietly on a cushion, worrying... :/

Hello

Thanks very much for all the responses and we're really (really) pleased that you think we're on the right track.

#miscarriagematters is great but still long - we're thinking #miscarriagecare - hope that works for you all. (Realise it's only a few characters shorter, but every character counts on Twitter!)

We completely take the points about the importance of better training for all staff who will come into contact with a miscarrying woman and her spouse (where applicable). We're going to be talking a lot about this on social media and (hopefully) in the press and broadcast media so we will try to bring up that point forcefully.

Thanks for the corrections ('fetus' and 'sympathetic') - we will take a look.

Juggling - the Miscarriage Association is doing some work on partners at the moment and we've been supporting that and will carry on doing so. We'll definitely look for opportunities to talk about the impact miscarriage can have on partners and spouses.

lottiegarbanzo - it is too late for the survey we're afraid, but if you want to mail us on [email protected] we will talk to you off-board about whether you'd like to volunteer as a case study or something similar. We're keen to highlight good practice - it shows other hospital trusts that it can be done!

Thanks for the #wenurses hashtag suggestion rascalrae; we'll pass it on to our Twitter supremo.

catlover - the GP point is hopefully covered under 'training for all staff', but the IVF point has come up a few times so again we'll see if there are opportunities to highlight it.

Finally, all good wishes to those of you who have been affected by this in the past or are going through it at the moment. MNers have got your back and we really think the campaign is slowly but surely making a difference.