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.

[BabydollsMum]

Thank you, thank you, thank you. I wasn't strong enough to fight at the time.

[Yaiyai]

Hi everyone I know this is a fairly old thread but I thought it was worth posting. I have a beautiful 9 month old baby but prior to having him I had 5 miscarriages and like most of your experiences they were not pleasant and could have been made a little less painful had the right care been in place. I am now a nurse and care for women who suffer miscarriages up to 20 weeks. I can empathise with my patients and do my upmost to help them through this horrid time. My reason for posting on here is well... I want to improve our care by offering more to our families. Just because a baby is born at 20 weeks or less does not mean it hurts less. What I would like to know is what the hospitals offered you in terms or memory's of your baby and support. I for example would have liked the blanket my little one was wrapped in but wasn't offered, I also would have liked some nice pictures and not just clinical looking ones. I know this is not appropriate for all loses but I would like to know what you all think and I am considering approaching my manager with a plan of action to improve care. Thanks in advance x

[Glosswitch]

I've just been pointed in this direction after I wrote a post about my own miscarriage (linking it to a US proposal to enforce "funeral arrangements" for miscarriage remains, which really disturbs me, as I think it's so important to be able to deal with it in your own way). I find it very helpful to read the stories, and feel so, so sorry for what other people have been through. If I am completely honest, 5 yrs ago (when my miscarriage happened) I would have been scanning a board such as this for mysterious "evidence" that I wouldn't miscarry again. At the same time, no matter how many stories I read, I still managed to feel like I was the only person in the world to whom this had happened. However common miscarriage is, treatment and wider cultural responses could be made so much better.
I told people I was pregnant before the magic 12 weeks. However much that was against "the rules", it was those people - who'd known that for me, the pregnancy was real - who helped me the most. For others, it was never a pregnancy, just a miscarriage. Part of me feels this silence is just to save others from embarrassment. I really hope people here are getting the personal support they need.

[ReallyRachel]

I miscarried at 13wks and I think the worst moment was when I went to see my doctor because I was bleeding and he wrote "Threatened Abortion" on my notes!!! I wanted to scream at him because it sounded like I didn't want the baby, when I did. I was then admitted at about 10pm that night, the day before my scheduled ultrasound, and had to wait until 2pm the following day for my ultrasound at the hospital, even though I had an appointment that day for 11am at home. I wasn't given much information and after being discharged to decide if I wanted it surgically removed or to let nature take it's course, the following day I started haemorrhaging badly and ended up being airlifted to hospital as it was 60miles away. Whilst I was there I passed out and when I came to I had all this staff rushing around me and then in agony I sat up and pushed out what remained of my baby. Luckily my mum caught it in a bedpan and rushed to find a doctor but found a consultant and rushed me up to theatre after taking one look at it. Afterwards I had NO information on my baby, I don't know when I lost it and all I know is a comment from the ultrasound tech saying it looked like I had an empty sac and then the hospital phoned to say I needed some strong antibiotics but they didn't say why or if it was connected to the baby and when I asked they kinda covered up their answer. I think I lost the baby at 7wks as I think I saw something on my notes when I was at the drs once, but I don't know for sure and I'm left with a feeling of guilt afterwards. I was lucky enough to conceive my daughter 2wks after my miscarriage but in hindsight I wished I'd given myself time to grief first but instead all I could think about was getting pregnant again. I've blogged about it at really-rach.blogspot.com/2012/02/mumsnet-miscarriage-campaign-my-story.html

[NoMC]

I just had my 2nd mc, and NHS said there is nothing they can do for me. Tests will only been given after 3rd mc, frankly, I don't think I can go through the 3rd one. NHS is hopeless...

[KateMumsnet]

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 we've realised that this really ought to have its own thread, so we've started one over here - do join us there?

[MonsterBookOfTysons]

I have received two letters from my MP.
Have been struggling to remember writing it on this thread.
I am happy to fax them to mnhq or send them to you if you like? My mp also says if there is anything else she can do to help let her know, but I dont know what to say.

[Thirstysomething]

I have been wanting to do something about no 3 since losing a baby at 24 weeks three years ago.
Nearly every day for two weeks until it was all sorted (complicated) I had to sit in ante-natal clinic waiting rooms, or in the waiting rooms of labour wards at hospitals -- even the foetal medicine unit waiting room was in the ordinary labour ward waiting room, so as I was shaking with sobs after being told my daughter had no chance of a normal life, or even surviving, I was surrounded by fathers waving balloons and grandparents triumphantly ringing everyone on their mobile phones, while newborns were proudly displayed to the world. It made it so so so much worse. Occasionally a sympathetic nurse would let me sit in an empty consulting room, but often there was no room available. This is making me cry again now and I am generally very strong about the experience. Every newborn cry was like having my heart gouged out.
After she died, by a quirk of fate I had to go through that cold labour in the same room that I had given birth to my elder (healthy) daughter in. Again among perfect babies being born. And midwives/anaesthetists etc kept coming in who didn't know the situation who kept saying unbelievably crass things. Not their fault -- the whole situation was obviously nobodies fault, but that is why I would support this campaign in any way I can.
Mothers who are miscarrying, having medical terminations, or hearing bad news about babies who are not going to be born healthy should have the right to be treated somewhere with a private waiting room - even if that room is only a few feet square (as long as it has a soundproof door!). Forget this weeks news of a 'right' to a caesarian!
I am very very lucky and have a second healthy daughter, born a year later, and am now 37 weeks pregnant. Haven't had a lot of time to do any campaigning, but it has always been something I would have loved to have done, so please rope me in if I can help in any way, probably after Christmas now though I am afraid.
PS: ARC were a bit of a lifeline, I think they used to be SANDS. Their leaflets were a big help both to me and to the grandparents, the newsletters helped me realise that I wasn't alone and the helpline was very useful once when I felt I had overused my wonderful support network, but just needed to talk.

[PaperView]

I prefer the term pregnancy tissue. It IS (was) a pregnancy and will always be seen as such by the affected women. And it counts as a previous pregnancy to the midwives if you are lucky enough to conceive again.

[piprabbit]

For a start, could they not use removal instead of evacuation. AFAIK they are synonyms and I personally don't find removal quite such a repulsive word.

I slightly prefer pregnancy tissue to retained products of conception as it carries with it the implication that the situation is being recognised formally as being an actual pregnancy, not just a sort of medical blip.

[ChristinedePizanne]

I've had a letter from my MP forwarding her reply from the Under-Sec for Health. I will scan it in shall I and send it on?

[KateMumsnet]

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

[ALovelyBunchOfCoconuts]

Ok Rowan, when I get enough spare time, I'll sit and type it out for you :) But it's quite lengthy so may take an age

[RowanMumsnet]

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.

[ALovelyBunchOfCoconuts]

I have had a reply from my MP regarding the EDM. He says he isn't allowed to sign it so therefore hasn't.

He has also forwarded a letter to me from my NHS Trust which really effed me off if I'm honest. I don't think they are really seeing the changes that need to be made.

They just waffle on about how and when EPAU becomes available (Yes 9-5) and if at weekends ladies who are mc-ing can go to A&E (yes and wait til the next day for a scan) They go on to say how the standards of care are already in place but sorry to hear about my rough time. Not offering to look into anything or improve anything.

I don't think they are seeing the bigger picture at all. They say that when a mc is diagnosed you see a MW, get given a leaflet, arrange aftercare with GP but mention nothing about the MW or GP being totally dismissive having no compassion whatsoever. It isn't necessarily the procedure that needs changing but the people that carry it out.

But anyway, the letter was a waste of time and they aren't really doing anything. Not impressed.

Hope everyoone else is having better luck than me.

How's it all going your end MNHQ?

[Fiona365]

I wrote a nice letter to Mr Cameron (he's my MP) about this.
And then I got a reply. A letter, no less. However, it's disappointing waffle:
"Thank you blah blah."
"The Department of Health has made provision of safe, quality maternity services a priority in the draft NHS Outcomes Framework. I want to assure you that the Government if doing everything possible to stamp out instances of sub-standard care in materinity services. The number of midwives is at historically high levels, a record number of midwives are being trained, and new stanards of care are being development for antenatal services.
I am confident that these measures will help to ensure that women have access to high quality care and the support to meet their individual needs to help them through the trauma of miscarriage."
So no support for the code of care.
It sounds like lots of MPs are being supportive, shame the PM isn't.

[RowanMumsnet]

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

[ALovelyBunchOfCoconuts]

Right, I have had a read of all the info on the code of care pages and have re-used the Write to Them widget to contact him again. Have thanked him for his support, thanked him for contacting the relevant people and said I looked forward to reading their responses in the near future. I have also asked him to publicly comment, perhaos on Twitter if he tweets, and provided him with the # thing. I also said that there is an EDM that we would like the MPs to sign and asked him to that when he gets his next opportunity.

Really hope he can do that :) Have met him personally a few times and his children go to same school as my brother and they are a lovely family and I really hope he gives this his full support.

[ALovelyBunchOfCoconuts]

Also, I don't 'tweet' and have no idea how it works. If I was to ask my MP to perhaps release a statement on Twitter does he need to know anything? Does he need to do it on a certain place? Does he need a # thing?

[ALovelyBunchOfCoconuts]

I have received a letter from my MP John Hayes. He has written:

"There is a Parliamentary convention that Government Ministers do not sign campaign pledges. However, I have written to the local NHS Trust and the PCT enclosing a copy of your email, requesting their urgent comments on the matter. Thank you for bringing this matter to my attention. I shall be sure to forward copies of their replies that I receive directly to you. If I can be of any service in the meantime do not hesitate to contact me"

So that is a very positive start and I hope my local trusts that he has contacted take it seriously.

Like downtoearth I too forgot to ask about the EDM. So I will need to ask him to sign that. So MNHQ how do I let him know about that and how does he go about doing it?

[down2earthwithabump]

I have just received a letter from my MP Dawn Primarolo who has stated "Thank you very much for your email in connection with your concerns about support for women who have experienced miscarriage... I certainly share your concerns, and absolutely support Mumsnet's campaign. I can confirm that I have written to raise this matter with the Secretary of State for Health. I will let you know when I receive a response but please do not hesitate to contact me in the meantime should the need arise."

However, I am now not sure whether I mentioned her need to sign the Early Day Motion . Mumsnet How can I get her to do this? What is the link or what does she have to do to sign it? I am happy to write to her again. Can you add her to the list of MPs in support of the campaign please.

Thanks.

[CeeMac]

RowanMumsnet perhaps you could add this to the list ????

[CeeMac]

I also think it important that part of the professional network be the provision of counselling for those that want it. I suffered a miscarriage in the early part of last year and although my family were very supportive I would have welcomed the chance to speak with a professional if the opportunity was there.

[RowanMumsnet]

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

[browneyesblue]

I've sent an email to my MP. I'm not sure if I made much sense, but I gave it a go.

I miscarried on Monday and posted about my some of my experiences here. It was one of the posters who responded who mentioned the campaign to me. I was discharged late yesterday, so decided to read up on it.

One thing that I didn't mention in my thread was that when someone finally did tell me I had miscarried (a day after I had had the tests - results were ready after 30 minutes), she just mentioned it in passing. It had been so long that she just assumed I already knew. I had pretty much figured out for myself that I had miscarried, but it was another blow to be 'officially' told in such a casual way.