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See all MNHQ comments on this thread

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

150 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.

OP posts:
welliesandpyjamas · 14/10/2011 08:48

EPU in Cardiff, in the Heath and in Llandough, are marvellous. Kind and sympathetic.

welliesandpyjamas · 14/10/2011 08:51

Sorry if it's been mentioned already, but I think it would be very constructive for anyone in any sort of medical training, and also those preparing to work in customer facing administrative roles in hospitals/clinics, to read or hear about both positive and negative experiences of miscarriage and remember them when they do come in to contact with women in these situations. Not all staff will have personal experience to help make them sympathetic.

NessaRose · 14/10/2011 20:27

I started miscarrying on saturday. I am STILL waiting for my scan, the hospital have booked it for monday 8 days since it started. In sheer despation I called my GP and asked her to see if she could get it brought forward for me, she said at 2pm that the hospital would not see me this late on a friday! I asked her to think about my mental state and she refused to call them. She did however make me a appointment to see her on monday morning. I will not be seeing her again.
Sad

imoanruby · 14/10/2011 20:53

I think this is a fantastic idea, i miscarried very recently at seven weeks. I spoke to NHS Direct as i was at home. A doctor called me back and ran through what was happening with me and then he asked me "what are calling us for, what do you want to know" ?! I explained that i was distressed and didn't know what to do and i was told there was nothing i could do - no point going to the hospital and he couldn't have been less interested if he tried. He made me feel like a stupid pathetic woman for even bothering them it was awful.

Rollon2012 · 14/10/2011 22:36

This is really good, I hope good changes and permeneant changes are made.

BecauseImWorthIt · 15/10/2011 12:40

I have just e-mailed my MP. Let's see ...

CristinaaarghdellAaarghPizza · 15/10/2011 16:28

I've had a reply from my MP saying she is 'shocked at the appalling care that you have described in your email concerning the support that is given to women concerning miscarriage treatment. It is clear that there should be sufficient training to heighten the abilities of staff to cope with the prospect of miscarriage and the mental and physical trials that are associated with thsi devastating loss. Thank you for bringing this issue to my attention. I will send on the Secretary of State's response in due course.'

So that's good :)

Abbiesmummy07 · 15/10/2011 22:35

I would be in favour of a petition. I have had 3 MC and one ectopic all of which were not handled very well. First one the consultant actually took a phone call mid conversation 'telling me it was 'dead' and I would have to have an evacuation'....then coming back to me from his call to his daughter about his evening plans and then rambled something about the Iraq elections!! I was in shock.

My ectopic was not diagnosed in one hospital I went to. The EPU was the only one open in a one hour drive radius on a bank holiday and then had to go through A&E to get a scan. They told me it was a pregnancy of unknown location and def wasn't ectopic! I then went about just waiting to miscarry until I had really bad pain. I then had a follow up at a nearer hospital (where I had my daughter previously) and had 3 scans (in the EPU, surrounded by post natal and other pregnant ladies) before confirming ectopic. I decided to be 'managed expectantly' but wasn't told anything other than to dial 999 if I had significant blood loss / pain and had to return to the EPU every 48 hours for blood tests, until my HCG was considered safe. This went on for nearly 2 months....all at the same time having to go to the EPU seeing babies / pregnant people etc. I know I can't avoid babies and pregnant women, but this really does make you have to be the toughest / bravest person you could ever imagine having to be.

I would like to lobby for better treatment for women who suffer and have suffered. I would also like to add something - it's about the classification of Ectopic pregnancy and the '3 consecutive misscariage' rule before testing.

I would like to be tested why I keep having miscarriages, however as I had my daughter between mc1 and 2 / 3 + ectopic they wont test me. They do not class ectopic as a miscarriage, so it doesn't count as the ' consecutive 3' to the NHS. To me I still don't have a baby, so it was a loss to me! I do get one thing that you have put in your pledge, if I do get pregnant again - I don't have to be referred to the EPU and will be as soon as I confirm my pregnancy.

Sorry if this was long and not totally on topic, however I feel the points you have in your charter is a breath of fresh air and makes me feel that we haven't been forgotton.

McKTastic · 15/10/2011 23:35

Article on BBC news website yesterday (sorry am clueless at how to link from my phone but if you google BBC, Miscarriage & October 2011 it'll come up) More about actual diagnosis - if you plan to look it up it's not a particularly pleasant read as it discusses misdiagnosis. Towards the end of the article it states :-

"The National Institute for Health and Clinical Excellence is currently developing guidelines for the care of women who experience pain and bleeding in early pregnancy. There is already guidance available from the Royal College of Obstetricians and Gynaecologists.

This will include the role of ultrasound in determining the viability of a pregnancy and will draw on this research. New guidelines are due in November 2012."

I thought I'd post here to share with MNHQ as there might be opportunity to overlap with what you're hoping to achieve - am not sure how these things work/if it's possible or indeed appropriate to link in with NICE - if not please ignore!

Good luck with the campaign. We MMC'd twins ** last year.

Mama5isalive · 16/10/2011 00:32

felt quite sick after recent story of women being told baby has died and having ops to remove healthy living babies!
i had the op and they only scanned me once although i asked for other scans!
trying not to think that it could of happened to me! because that will/would drive me mad!
scary thought these thing, happen in this day and age!!!!!

Poeteats4gals · 16/10/2011 03:54

So pleased. This will raise much needed awareness around this loss filled subject .It is nine years since my missed miss(Jo Jo) that affected our relationship alot drove us apart and men find it hard to express the loss as we have the hormones to help us cry etc..Big worthwhile common subject...Feel the feelings to heal and move on is my experience. Best of love and luck.

Havingkittens · 16/10/2011 12:48

I would like to second the suggestion of this being "Better care of thos suffering pregnancy loss".

Like Nobabyyet, as well as 4 miscarriages, I have also been through two terminations of very much wanted pregnancies due to chromosomal abnormalities. One of which was incomplete so I had to go back for further surgery. All of these experiences were heart wrenching and horrific to go through and the terminations were equally, if not more traumatic. In fact one of my experiences was one of the most traumatic experiences I have ever been through and I will never forget it. My local hospital, at that time, had decided to save their budget in the department by contracting out the treatment to Marie Stopes Clinic so I was treated as someone terminating an unwanted pregnancy with the same cold clinical approach. I was treated in a very degrading way, handled roughly by the anesthetist, told by the nurse I wouldn't be given the surgery if I didn't stop crying and then told by the surgeon "Oh well, you can try again in 3 months".

At the time I felt that there was a certain amount of counseling and after care offered for those who had had miscarriages, albeit not enough in a lot of hospitals, but really nothing for other causes of pregnancy loss. I know it is a contentious subject but it is not uncommon for women to make the decision to terminate a pregnancy when told the baby may have a seriously compromised quality of life (especially when it's no longer a baby) or even a condition incompatible with life. The lack of attention given to this type of circumstance makes people like me feel like "a dirty little secret" in a way. Something that is not addressed or treated with the same attention and care as you would expect for a miscarriage. I think this, and also ectopic and molar pregnancies should be covered by this code of practice too. I mentioned this in the original thread but I don't think anyone commented on it. I guess because for some people this is a bit of a taboo subject Sad

welliesandpyjamas · 16/10/2011 13:10

I too was only scanned once. (Friday should have been my 12 week scan :( ) At the time I did feel reassured that the doctor at the EPU was very experienced and she did spend a lot of time looking, measuring etc but what bad timing for that BBC report to inform me that two scans are standard practice.

definatelymoocowbiscuits · 16/10/2011 21:48

Xbox, Just to say I am thinking of you and praying for you. Goodluck. x

MmeLindor. · 16/10/2011 22:27

Wellies
I was only scanned once when I had my first miscarriage, but had such a bad feeling about it that I insisted on a second scan when I had my second. I do think that the risk is very low that they made mistakes. I do know that I felt very differently when I was pregnant with my two successful pregnancies - had morning sickness right from the start which I never had with the pregnancies that ended in mc.

If you haven't seen this yet, we have had an amazing 34 bloggers share their stories about miscarriage to highlight this campaign. www.mumsnet.com/bloggers/bloghop-for-miscarriage-care-campaign

And here is the link to the Early Day Motion so that you can check if your MP has signed www.parliament.uk/edm/2010-12/2230

mistlethrush · 17/10/2011 13:06

I've just written to my MP as he's not on the list.

annabananamum · 17/10/2011 14:13

Thank you so much Mumsnet for highlighting this. I lost my son in June at 24 weeks. the care I received when giving birth to him was very sensitive. However following his birth I had an infection and was admitted back into the labour ward and then into the Maternity ward. This was horrendous and I can't really find the words to describe it other than it was one of the hardest things I have ever had to do. We then had an appointment with the consultant and had to go to the antenatal clinic and wait surrounded by leaflets and posters promoting breastfeeding and obviously pregnant women. The final (hopefully) indignity was when I went to see my GP and she asked how my baby was ( She had previously phoned to see how we were coping).
I have written to my hospital to complain and with recommendations as to how they can deal with miscarriage and stillbirth more sensitively.
And now have e mailed my MP so hopefully he will sign up to the code.
Thanks again MN it is such an important issue

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?

BecauseImAWerewolefIt · 17/10/2011 20:17

How long do you reckon one has to wait to hear anything back from one's MP?

Secondtimelucky · 17/10/2011 20:21

KateMumsnet - do you want to be sent details of MPs who have been contacted but not replied too. On past form my MP doesn't stand much chance of getting on the response list!

BecauseImAWerewolefIt · 18/10/2011 17:00

Right - I've had a reply from my MP, Stephen Hammond, and I need some advice re what to ask him next. His letter goes:

"Dear Ms BecauseImAWerewolefIt

Thank you for your e-mail of Saturday in regard to the Mumsnet campaign for better care for women who have experienced miscarriage, and the related Early Day Motion. I am very sorry to learn that you suffered a miscarriage some years ago.

I have located the EDM to which you refer - EDM 2230. Sadly, as I am a Parliamentary Private Secretary, I am unable to sign any policy EDMs and am therefore unable to add my name to this EDM. However, please rest assured that I have taken on board the content and will certainly bear in mind your comments in future discussions on this matter.

With best wishes

Yours sincerely"

So a polite and reasonably warm reply - is there anything else I can ask him to do?

BecauseImAWerewolefIt · 18/10/2011 17:00

Obviously I didn't disclose my MN name to my MP.
[hgrin]

CombineArvester · 19/10/2011 13:35

My MP Tracey Crouch (who you may know from the parliamentary football team!) has written a lovely letter saying at the end she "will be pleased to sign EDM 2230". Yey.

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

OP posts:
Secondtimelucky · 19/10/2011 19:07

I assumed that was the case- my MP goes with 'if I ignore it, it will go away!"

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