Mumsnet campaign for Miscarriage standard code of practice

[carriemumsnet]

When Alan Johnson came a visiting last week, miscarriage and some of the frankly appalling treatment that Mumsnetters have suffered 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...

[Mirandafredmaxmum]

My 3rd miscarriage was a Missed Miscarriage - when I went for my 12 week scan there was no heart beat. The D&C was arranged for about 3 days later. We waited from 7am until midday and then were told that I would not have the operation that day and to come back tomorrow. The reason was that abortions are scheduled operations so they go first in the queue then D&C for miscarriage comes second and they had run out of time. I asked if I would be first in the queue the next day. "No, the scheduled abortions come first, you may or may not get your operation". Luckily the surgeon was doing private work that same evening and I got my operation for £2000. Lucky that we could afford it but how disgusting that a miscarriage should be put to the back of the queue. I would like to see miscarriages given greater priority. Yes I am pro choice but I had a dead baby inside me. It is a normal part of parenthood and everyone talks about the emotive side and everyone talks about having a positive birth experience but when it went wrong and the baby died it seemed like nobody wanted to help.

[mumtosky]

Hi, not sure if anyone will see a new post on this old thread? Having seen an article about mumsnet in the newspaper last weekend, mentioning this campaign, I wanted to see if there is still an active campaign and how I could support it. A miscarriage last year left me feeling that I needed to do something to try and change the system - if not the law! particularly around the disposal of remains, which I feel very strongly about. If anyone is still working on this campaign, perhaps they could let me know? x

[GwendolineMaryLacey]

I just had a MMC at 112 weeks resulting in an ERPC at St George's in Tooting. The care I received, from the initial scan till I left the hospital after an overnight stay was second to none.

I haven't read this thread, I will do. But I did wonder about the fact that, on the day I went in for the op, I was told to wait round the corner in the ante natal waiting room, not across the way in the general outpatients bit. I sat amongst bumps, promotional videos and newborns for an hour or so, knowing that in a few hours my baby would be a distant memory. I could have done without that. It's a small thing but it hurt at a time when I didn't need one more thing to worry about.

[GwendolineMaryLacey]

Yes, having just glanced at emptyshell's post above, an end to the 'retained products of conception' phrase. There wasn't a person in that hospital that didn't apologise for the unpleasant title of the procedure. So why call it that?

[GwendolineMaryLacey]

Oh God, that should be 11 weeks above, obviously

[RowanMumsnet]

Hello mumtosky - yes, we're still working on it; we have a few plans and are thinking about how best to implement them. Hopefully we will have some news for you soon.

Un-Mumsnetty hugs to you, GwendolineMaryLacey and everyone else with experience of miscarriage.

MNHQ x

[oldergeneration]

I offer your campaign my wholehearted support. I'm about to be a granny but still remember the heartache of the miscarriage I suffered over 30 years ago at 3 months - made SO MUCH worse by the attitude of the medical professionals who dealt with me. A miscarriage is a death that needs to be mourned. It is not a slip-up or something to be swept under the carpet. Sadly, things have not improved - a friend of my daughter's has just had two miscarriages - and was told to "have another go" (as though she'd fallen off a bike) and that she could not be offered tests until she'd had a third miscarriage. Words fail me. She has now gone private, in a completely justified attempt to find out what the problem is.

[Yellowstone]

I do hope these details don't offend. The code is extremely good. I've had several miscarriages but probably within the statistical norm, I was still very sad however.

The most difficult one was the most difficult purely on account of the consultant in charge. When the scan indicated no heartbeat he was summoned to explain and told me that frankly, at my age and after a number of live births, it wasn't a great surprise. That line is perhaps one doctors could be asked to avoid. The next very awkward thing was explaining why I didn't want a ERPC: I was worried that what was removed would be incinerated without thought and I wanted to bury the little thing discretly in my mother's grave. He made it very clear he thought this odd. He did apologise later but nevertheless there must be others who feel a need to bury a tiny thing, so perhaps doctors can deal appropriately with this end of things too.

I haven't read the whole thread sorry. Perhaps other doctors cover all this now.

[JanetPlanet]

Definitly the part about communication training. I had what I thought was a miscarriage which turned out to be an ectopic pregnancy. A male Dr, and another male, who I don't know what he did because neither of them introduced themselves, came in to speak to me. I was on my own as I thought I was just going in for a blood test. I took my diary out to explain that I had first done a positive pregnancy test weeks before and was still testing +ve even though I'd miscarried weeks before, the Dr said to me 'is your husband that good you write it in your diary?'. I was mortified. He then went on to tell me I'd be getting chemotherapy and then left the room, but hadn't explained it was standard treatment for an ectopic pregnancy so I went home wondering if I had cancer!
Communication skills needs revisting for already practicing healthcare professionals, not just students.

[emptyshell]

I'm going to bump this and bang on, yet again, about aftercare.

It's 1 year, 1 day since my first miscarriage, and getting toward the 9 month mark for the second (I would have been long due by now but it was a missed miscarriage... I much prefer the term "silent miscarriage" myself but I'll go with the commonly used one).

I'm still nowhere near emotionally right - no one cares. I still cry myself to sleep at night, still struggle to cope, still sob and scream and shout in the car. I'm basically massively, massively depressed... I told my GP this, begged for some help - he refused any antidepressants (despite there being ones that would be safe in pregnancy) unless I agreed to have contraception fitted. Essentially he seems determined to punish me for refusing to give up trying for a child - I feel PUNISHED by the NHS for daring to miscarry. The only help I did get - from either the GP, recurrent clinic, or EPU... a threat to section me.

I've been left with NO quality of life, no counselling, no support - been left to be punished for miscarrying... been left contemplating suicide (even to this day one year on)... there is just NOTHING out there to support you, and it can completely change you and destroy you as a person - if I wasn't as strong as I am (thanks mum - you might have been crap in other departments but by heck you sorted that side out) - I would have long since crumbled for the lack of support I was given. As it is - for the last year - I've not lived, I've existed and gritted my teeth and dragged myself through life... if I hadn't miscarried and felt like this - I would have recieved help.

This all still needs pushing to the rafters - we DO matter. We deserve better - not to be treated like the dirty little secret of the womanplumbing parts of the medical profession.

[catmaclennan]

When I saw this post on twitter the other day it made me quite sad. I am unsure why you are running this campaign seperately to the work already undertaken by the Miscarriage Association. Surely that in a time where charitable organisations face increasing pressures in their work, is it not best to work together and instead of duplicating the work of the MA, which they do extremely well and are specialised in their field, that you get behind their vital work and suport them by giving your backing to their campaigns. It's hard enough for women and men who experience miscarriage surely signposting to one service is the best way forward and you can support this through sharing their website, phone number, and the excellent leaflets they provide. Anyone who has experienced miscarriage reading this post please got to www.miscarriageassociation.org.uk where you can get specialised help and information and talk to the many who have experienced miscarriage. The MA also have a facebook page www.facebook.com/groups/208106969238866/

[Lucyannieamy]

Would like to hold up the Whittington hospital, London as a fantastic example. I had a early scan arranged by gp 8wks at epu all good, (i was at risk) but missed miscarriage identified at 12wks scan. Amazing staff and had the ERPC same day as the scan, and they gave me and DH a room away from the main ward. I wrote to say thank afterwards, was so impressed, made everything so much easier to deal with. Everyone should get that.

[Vicky132]

I think this is a fantastic campaign. I had two missed miscarriages last year which were both diagnosed at the 13 week routine scan. Both babies had died at 8 weeks.I had strong pregnancy symptoms, no bleeding or cramps and had no idea that I had lost my babies until the scans. I am now 32 weeks pregnant. This time around I was desperate to have an early scan but was told I didn't have any 'medical reason' for one. I decided to pay for two private scans as the anxiety of wondering whether my baby was alive or not was too much to bear.
With both my miscarriages I opted to have ERPC's. Both times I was put on a day ward full of women having terminations. The first time the anethatist asked me if I was having a termination. The second time the surgeon stormed into my cubicle and demanded to know what contraception I had been using. When I explained that I had had my second miscarriage he walked out offering no apology. I was desperate to have the fetus tested but was told that it was not possible. I kept being told that I would have to have three miscarriages to be entitled to any tests.
I believe that early scans should be offered to people who have suffered silent miscarriages.
No one should ever have to be on a ward with people having terminations when having an ERPC.
The three miscarriage rule should not apply, every case should be treated differently.
Counselling should be offered. I had to ask for counselling and waited over 6 months to reach the top of the list which entitled me to one hour session. I was not able to attend this so I have never received any emotional support.
I am lucky as my family history led me to have genetic testing which uncovered a blood clotting gene which could be responsible for my miscarriages. I have been treated with aspirin and heparin and my pregnancy is going well. I wonder if I would have suffered further miscarriages without this treatment.
Thank you Mumsnet for this campaign.

[MrsKersley1]

i miscarried over wed and thurs, i didnt have bleeding where i was soaking through 2 or more pads an hour which seems to be all my a&e were bothered about i passed the sac while at work on the loo. later that day at the epu they confirmed i had a complete miscarriage i was told to go back to give more blood after 48hrs which i did and my levels dropped but i was left with not knowing what happens next as a result i have to go to my gp to get sick note so i can take week off to get over it all. i def agree the A&E dept need better training on it. everyone seems to think there's nothing to worry about unless your bleeding heavily....well that wasn't the case for me and it was my first pregnancy. Im angry that i have been offered not aftercare/advice as to what happens now even if i had a natural Mc.

[PostmanPatsBlackandWhiteCat]

I miscarried over the weekend I was 11 weeks.
I think there should be information on miscarriage in the first bounty pack you get or a leaflet from the midwife.
My miscarriage started last Thursday but I had to wait until Monday for a scan it was three days of hell not knowing what was happening to me. I was given no information about what happens when you miscarry until after I had the scan and I was told I had a complete miscarriage.
I was so scared when I started to miscarry at home I did not know what to do or except. It was so horrible all the blood ,clots and the worst bit for me was the smell of blood. Its such a shock even now. Thankfully I was in hospital for the last part and the staff were so kind to me.