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Mumsnet campaign for Miscarriage standard code of practice

(466 Posts)
carriemumsnet (MNHQ) Mon 21-Apr-08 17:40:14

When Alan Johnson came a visiting last week, miscarriage and some of the frankly appalling treatment that Mumsnetters have suffered sad angry was one of the talking points Following on from sfx's comments (and others) this is what AJ had to say:
"it seems to me from all your comments and from talking to the Mumsnet people here that we really should seek to ensure a common set of standards across the country. I think I'm in at the start of a new campaign and it's something I will talk to Ministers about when I return to the Department. Mumsnet have informed me that I will not be allowed to forget this issue!"

So now it's down to us to come up with that common set of standards- guidelines and procedures that we'd like to see implemented across the whole of the UK.

I'll happily kick off as a veteran of 2 m/c: but do feel free to disagree with my suggestions/add your improvements :

Automatic access to EPU for anyone with a suspected miscarriage (without having to get a GP referral) and EPU's situated away from regular ante natal clinics /labour wards and devoid of images of smiling babies - please.

Access to all affected to a pamphlet/booklet put together by Mumsnet and full of your tips, advice, empathy and reassurance - describing what might happen and letting folks know they're not alone in this.

Over to you...

ImightbeLulumama Mon 21-Apr-08 17:43:54

hat a fantastic campaign, shame it has to be started out of the suffering of women who have lost babies and not been treated with respect, care and dignity.

might also be a good idea to put together some info on when to panic. or not ! how common bleeding is, when implantation bleeding occurs, symptoms of ectopic pregnancy....things like that?
am sorry to hear you have had 2 miscarriages.

MissingMyHeels Mon 21-Apr-08 17:44:51

Access to scanning equipment over weekends - I had a "threatened miscarriage" on a Friday night and the wait until Monday was agonising.

JodieG1 Mon 21-Apr-08 17:47:34

I've had 5 miscarriages and I would definitely have preferred not to have to go to the gp first before EPU. As it was I ended up paying for a private scan a couple of times so that I could get one sooner.

I think scans should be offered faster as even an extra day or two makes it agonising when you're bleeding and you don't know if your baby is still there or not.

Uriel Mon 21-Apr-08 17:49:36

What's an EPU? (Miscarried at home.)

JodieG1 Mon 21-Apr-08 17:50:12

Early pregnancy unit.

peanutbear Mon 21-Apr-08 17:50:58

Scanning at the earliest available opportunity not come back in three days and we will see

Keeping promises to patients if say you are going to do something do it

SquonkTheBeerGuru Mon 21-Apr-08 17:53:57

absolutely situating miscarrying or potentially miscarrying women away from happily pregnant ladies and happy smiley baby pictures.

Whether that be in the EPU for a scan, or on a ward after/while waiting for a d & c.

completdly agree with lulu - re: pamphlet or something detailing the different types of bleeding that it is common to have in early pregnancy.

Also, in the pamphlet thing should be a section making it clear to parents that it is ok to grieve, and that taking time off work is ok too. There are a lot of threads in the miscarriage section where people seem to think they "should have got over it" or other people think that they should have.

Really hope this gets off the ground, apparently 1 in 3 of us will suffer a miscarriage at some point (not my statistics, btw) so it is a huge issue.

milou2 Mon 21-Apr-08 17:55:12

Information about what happens when you miscarry at home. What exactly are the products of conception and how to catch them if you want to bury the little soul at home. Sorry if TMI.

thegrowlygus Mon 21-Apr-08 17:57:45

Automatic access could lead to abuse. It is an 'easy' thing to say you are bleeding to get an early scan. Cynical I know, but it happened a fair amount at our EPU despite GP referrals only.

I am more up on stillbirth and I know that Sands produces a book called "Guidelines for Professionals" that goes into detail about what should happen when there is a stillbirth or neonatal loss. Do the Miscarriage Association do the same thing?

I suspect I am not very representative of health care professionals in that the 2 main places I have worked have both had excellent early preg units with no problems getting seen quickly and at weekends etc.

DrNortherner Mon 21-Apr-08 17:59:05

I miscarried and went to A&E, they were pretty bad tbh. EPU the enxt day were FAB but admitted that A&E depts desperatley need training on how to handle this very sensitive and emotional matter.

Not sure how viable 24 hour access to EPU would be? Can they open Sundays/BH's, Christmas etc?

How about training A&E staff better?

thegrowlygus Mon 21-Apr-08 18:00:30

mind you - having said that, as a GP I don't actually say 'prove it' to women who come in bleeding - i believe them and refer them, so what difference automatic access would actually make I don't know. Scratch that last comment I posted!!

thegrowlygus Mon 21-Apr-08 18:02:39

Seems the webpage for "guidelines for good practice" on the Miscarriage Association website is 'under construction'.

poppy34 Mon 21-Apr-08 18:06:36

carries ideas are good ones - am with jodie about wanting to avoid GP.

also think mumsnet guide on m/c would be good-the stuff out there is very clinical and there is nothing very practical (m/c association stuff is good but quite thin).

sfxmum Mon 21-Apr-08 18:06:38

agree with access to EPU 7 days a week without having to go through GP is woman so chooses

clear info on natural miscarriages so that both woman and partner know what to expect
and sources of support perhaps including personal stories.

proper follow up

if D&C (called something else now I think) needed , never around women having babies
and as soon as possible
- not waiting a couple of days with warning if starts bleeding too much to go to A&E

for subsequent pregnancies acknowledging concerns and provide appropriate support including early scans - not everyone can afford a reassuring early scan

sufficient clear info for women and partners

I really do hope this bears some fruitssmile

poppy34 Mon 21-Apr-08 18:08:37

sfx -point re d/c adn ercp is a good one - I had to wait 6 weeks to have one due to hospital policy/shiteness of gp ... it was agony as every 2 weeks had to go back for scan at EPU full of happy preggers women[ hmm]

lackaDAISYcal Mon 21-Apr-08 18:08:59

What a brilliant idea, but soory to hear of your m/cs carrie sad

I've had two as well, and fortunately here in Leeds we can self refer to the EPU at Jimmy's and at sometime in between my second miscarriage and my last pregnancy they moved the EPU from inside the Ante-natal clinic (although it was well away from the main AN clinic/scanning dept, you still saw lots of hugely pregnant women milling about) to near A&E and now shares with the gynae assessment ward.

They won't do reassurance scans though, and will only scan if you have had any bright red bleeding.

Many women, myself included, feel frustrated that until you have had more than three m/cs there is no follow up to try and determine the cause; even though it isn't regarded as recurrent until three, I know that I felt that there must be something wrong with my body that I couldn't hold onto these babies.

I also think that women are put off going to the GP second or third pregnancy, just in case it happens again. Could the leaflet make it clear that it is important to get the pregnancy on record incase, perish the thought, m/c happens again. No record of the pregnancy = no chance of follow up.

I'b be happy to contribute my experiences to anything MN produce.

I missed the webchat, but the transcript is definately interesting reading.

Blandmum Mon 21-Apr-08 18:11:44

Doctors should not on pain of pain tell a woman who is miscarrying that' It is very common, you know'

She already knows that, you fuckwit. And anyway death is fucking universal but you tend not to say, 'I'm sorry that you dp is dying, but it is very common you know!'

patients should not be on the same list and have to wait with women who are having a voluntary termination of pregnany. I'm actually pro choice, but that particular day I wouldn't cope with the concept

justjules Mon 21-Apr-08 18:11:49

there is some interesting stuff about m/c from the patients and a professional point of veiw in dr farquarsons book, he runs the m/c clinic at lwh, lovely fella,

i was in the epu (not at lwh) 3 times for 3 different m/cs and not once was i given a leaflet, a phone number, any info on the m/c/a angry

Blandmum Mon 21-Apr-08 18:12:44

and I was left bleeding all over the Christmas and new year period, hoping against hope.

I waited around 2 weeks for a scan

lackaDAISYcal Mon 21-Apr-08 18:13:23

I hadn't considered the follow up. Both of my m/cs were spontaneous and complete, but the first one at 11 weeks took over a month to clear my system. I was told to do a test a week later and if positive to get in touch as this could mean retained tissues. It took four weeks of phoning, and every time I did I was told test in another week. Of course every time it tested positive was another week of agony for me. I think if I'd had a blood test when I first went to the EPU, with a seciond at a follow up appointment a few weeks later to check hcg levels were falling, or a second scan after a couple of weeks, the whole process might have been easier.

I wasn't offered a D&C at all.

Mamazon Mon 21-Apr-08 18:13:33

I had to have a termination due to having an ectopic pregnancy.
i was placed in a standard termination ward along with young girls boasting of their 5/6/7 th abortions.

I am pro choice but there is a difference between those who choose to terminate and those who are forced for whatever reason. they should not be made to mix.

Wheelybug Mon 21-Apr-08 18:15:07

Great idea. I was 'fortunate' enough to have good, sympathetic treatment following a complete miscarriage but have since found this to be the exception rather than the norm.

agree with LackaDAISY regarding the uncompromising rule of not investigating until you've had 3 miscarriages. I've only had 1 but had problems in my pregnancy with dd (IUGR) and now suffering secondary infertility following 2 easy conceptions). We don't think its unreasonable to think there may be some underlying issue but have been told they won't look for a link until I've had 3 m/c's despite being investigated for infertility.

theUrbanNixie Mon 21-Apr-08 18:18:19

yy there's nothing worse than sitting in tears in the labour ward reception in tears while you see women with enormous bumps looking at you curiously. sad

also some better aftercare - maybe some more access to bereavement services etc? i just got handed a leaflet entitled "You've had a miscarriage" or somesuch and shown the door. the leaflet got shredded in the corridor on the way out! blush

if only there was some way of stopping "friends" and family saying things like "It was an early one so it doesn't matter" or "There was probably something wrong with it anyway so it's for the best". angry but i think that's outside of Mr Johnson's remit somewhat...

justjules Mon 21-Apr-08 18:20:42

dr f talks about the use of language being very important to women who are m/cing,

things like products, remains, bunch of cells,

now some women find it easier to think of thier loss like that and others find the grief easier to deal with if the 'products' are called 'the baby'

and the actual time of loss is a huge issue, it depends on what happens afterwards, what happens to the baby, how it is treated, where it goes, ect,

it seems after much research that every hospital varies as to what they see as a 'baby' and that in turn then rules the outcome,

and there are big religious factors and personal spiritual believes that can play a part here, who is to say when a baby is a baby?

is it from conception? is it from the heart activity? from the first sign of movement? at 12 weeks? after you feel it move? at 20 weeks? 24 weeks?

all very confusing sad

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