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.

[Bodicea]

Whilst I applaud the general gist of the campaign I do find some of it a bit sensationalist. For instance the waiting over 24 hours for a scan headline. I don't think that that is really very bad in the grand scheme of things. You want to be scanned by someone who knows what they are doing. You want specialist skills. You don't get specialist skill unless they are doing it all the time. Therefore you can't employ too many people to do it otherwise they would become deskilled - if it was spread out across too many people - if you get what I mean. Therefore you can't expect them to be available 24/7. It just isn't practical. Personally I would rather wait for an expert than get a scan quickly off someone who doesn't really know what they are doing.

I have to say my care after my two miscarriages was great. We are very lucky in this country.

[squizita]

Bodica yes that headline puzzled me, because I know in order to avoid accidentally removing a living/tiny fetus they will scan twice or wait. I suppose the difference is this has always been explained by the GP referring me ... Whereas others maybe not. Again it comes down to respect and HCP not just saying anything but explaining properly.
Additionally if there is pain and bleeding it should be a same day scan to rule out ectopic - which can become dangerous in hours.

[Hazchem]

I hadn't noticed the 24 hour thing. I had to have the HCG level check and buy the time that was done it was 5 days after my first symptom. I had an ultrasound on the first day but without the blood work they couldn't confirm if it was just not showing a heartbeat because it was too early to tell.

[squizita]

Yes exactly.

In the original survey I almost wondered whether things that were upsetting (but have to happen) were being confused with things that were poor care. Some questions treated one like the other.

For example what is done with remains. The last thing I'd ever want to hear of is a woman who, for example, miscarried at home and was asked not to save the remains of her fetus at all, or a hospital never retaining them because (and we know this can happen) new guidelines were followed too mechanically.
This could lead to a treatable health condition going undiagnosed and further losses, and just plain having no answers.
In rare cases, molar or partial molar pregnancies might go undetected and trigger cancers.
I knew these things as my losses progressed: but many women wouldn't. They would be upset about the 'collecting' and 'experimenting' as no one told them.

Again it's all in the communication here: "we know it is deeply upsetting but we need the remains of your pregnancy to help us find out why it happened and give you help" vs just taking things/giving a pot.

[squizita]

...also worth pointing out in the USA where scans and treatment are given very quickly, there is a push for slower treatment. Women worry because some (only about 2% or so, but some) women have scans a few days apart and it turns out they lost 1 of a twin or there is a HB etc'. There are some emotive websites on this anxiety (I won't link as they are triggering and don't apply to UK care IYSWIM).
So taking things slightly slower but not just leaving a woman in limbo is there for a reason.

The problems arise when people just aren't seen by anyone for a week or so... which I have heard.

[Hazchem]

I think the contact point is so important. I had the ED doctor call me twice just to see how I was doing until I was seen by my GP to confirm the blood work. I felt Like I had support right from the time I called Health Direct (NHS direct equivalent) with my first lot of spotting. I think I was particularly lucky as the ED was pregnant at the time and had one miscarriage so she was able to explain what might happen but was also able to share how she felt during hers.

[Igggi]

I don't see a problem with being scanned quickly, if the results are not conclusive no action will be taken. It then gives a baseline from which to compare the results of a subsequent scan. With one of mine I got a scan following bleeding - turned out baby was still there but with a slow heartbeat. Follow-up scan in a week confirmed heartbeat bad stopped. If I'd had to wait a week I might have hoped for longer; also id never have known about the heartbeat which for some reason is very important to me.

[FlockOfTwats]

I agree with Bodicea that the scanning thing is a bit sensationalist. I do wish all EPAUs were like the local one here though - It is on a drop in basis so you don't need a referral or appointment. You just ring them directly and tell them what the problem is. I think everywhere should have that system. It's much easier. It's also separate from where they scan you if you're already amitted to hospital for problems, so there is no clashing with referrals from MAU/Obs wards as they have a separate ultrasound unit altogether (Or did last time i was there, i am assuming its still the case).

I also would like to suggest something for the 'don't say' collum - Don't assume you know how the woman feels just because you've had one. I had an ectopic pregnancy. I was incredibly ill. I wasnt upset about the pregnancy. And i was left feeling like a freak by other women for this. I have been told i must be lying about it because no normal woman would have my 'attitude' about it.

I would never seek to apply my own feelings to another woman suffering a loss, Just because i did not feel an attachment to the pregnancy, So it upset me that it didn't work the other way around.

[squizita]

Flock yep I've been told all sorts e.g. "how can you still be pro choice?" "How dare you moan about backache, you're lucky to be pregnant" "how come you aren't angry/bitter at other women, I thought that was normal?" And so on.

[thistooshallpass40]

Thank you Squizita and Madrigals. I am heterozygous with factor v Leiden but I think this was also lost on that junior doctor! I ended up on IV anti-biotics for womb infection following third loss and the fact of my clotting disorder was unknown by the nurse caring for me in the Surgical Assessment Unit until I raised it with her when I suggested if might be an idea if I had a walk around as I had been lying down for a long time! I know resources are stretched but that is not an excuse for important base line information not being passed on and for a lack of humanity in contact with others involved in caring for women, and their families, going through mcs

[Bonniepurple]

I experienced appalling mmc care in 2006 (being given the tablets and sent home to labour on a mattress on the floor (we were moving house that week). I was too upset and out of it to complain, but I have used my experiences to help others who have suffered a mmc decide on the best option for them. I had hoped that things would be different now, but it seems sadly not.

I KNOW that a mc or mmc is not life threatening. I KNOW that NHS staff are very busy and to them it is routine. I KNOW all this. I also know that common sense and compassion should be used, and that it costs nothing to say "I'm sorry. Is there anything that I can do to make it easier?".

The final indignity I had was in 2008, when pg with DD2. The first mw had put down number of previous pgs as "1". I corrected the mw at the next appointment to be told "it doesn't matter". I was so flabbergasted that I didn't say "it matters to me". Needless to say, I changed my GP practice (and therefore mw) after that.

[Granny68J]

My lovely daughter-in-law had her 12 week scan today. She was told that there was no heartbeat and that her baby was dead. She and my son left the hospital in shock, having been told they would be informed later in the day when an appointment could be made for a further assessment.

They heard nothing from the hospital and following my son's repeated efforts to talk to the relevant department, they were informed that the assessment could be done tomorrow but that any necessary surgical procedure could not be carried out until next Tuesday.

For five days, this poor girl will have to live her life knowing that she is carrying a dead baby. I am stunned by the inhumanity of this. Is this a common occurrence now in NHS prenatal care? Am I being unrealistic in hoping for immediate action in this situation?