Miscarriage campaign - next steps

[JustineMumsnet]

Hi all

As many of you will know, we launched a miscarriage campaign a while back to try to do something about the awful experiences that some women (and their partners) have when they miscarry. We came up with a ten point plan, and since then we have been lobbying relevant bodies to get these issues looked at.

Now that we've given the new government a few months to bed in, we reckon it's time we started making a bigger noise about this in government and Department of Health circles. Before we do so, we wanted to run the Code past you one more time. Do these ten points still represent the most important issues, in terms of where healthcare professionals could do better in miscarriage care?

Do let us know your thoughts.

[libelulle]

I still find it amazing that scanning is not available more readily in cases of suspected miscarriage, and that the expectation is that you'll just go away and see what happens, possibly waiting weeks and weeks to find out if you have miscarried. I've suffered heavy bleeds at 5 and 9 weeks in both my successful pregnancies, and each time have had to argue my case for getting a scan to see what was going on! Last time the (lovely) A&E doctor said she actually had to bend the rules to get me an ultrasound as it 'wasn't policy' to give 'reassurance' scans!!! The idea was that I'd wait nearly four weeks until the 12/13 week scan to find out if I still had a viable pregnancy. I find that just disgusting. How hard would it be for every A&E to have a mobile ultrasound machine available 24/7?

[PinkFondantFancy]

This code is great, I agree with all of it. The only thing I would add is that there should be a routine follow-up for those that are having a natural MC. I bled for 5 weeks, and eventually went back to the EPU to discuss it. Luckily the gynae went above and beyond and examined me and found a big lump of tissue blocking my cervix and causing me to retain. If he hadn't checked though, I have no idea what would have happened. I also agree being told about mumsnet would be really helpful - I happened upon it by accident and it has been an absolute lifeline.

[harassedinherpants]

Just coming back with some more thoughts after seeing the doctor to beg for some tests this afternoon.

Follow-up care: there is none! Nothing after my erpc, and there will be nothing after the one I'm going through now except they want me poas in a week and let them know the results. Not only is it scary not knowing what's going on, but people don't seem to realise that we're grieving for the loss. There's no medical follow up and no offer of counselling.

Three consecutive mc's in order to get referred for testing. Only someone that has never had the misfortune to have gone through a mc would have set this..........

[Coldcuppacoffee]

I am pleased to say that my experience ticked a lot of these boxes, but would have been so much worse if this is not the norm.

Good luck, mumsnet, I think you've articulated it beautifully.

[MadMommaMemoo]

I've said this before but can this be extended to include women who have an ectopic pregnancy??? I feel that we get forgot sometimes. I was treated dreadfully and some of the things said to me were at best insensitive but at worst down right cruel.

[luciemorgan3]

I agree with every thing you have put in the code. i had a mc at 14weeks ,i found the staff at the hospital to be cold, i was sent home and told to 'rest' with nothing to help with the pain, next day rushed bk in and found the trement to be the same! i had to wait 5 days for a scan and found it very hard to sit in a waiting room surrounded by big bumps and smiles, i had no after care and found informing doctors/midwife heart breaking.

[emmanumber3]

I have to say that, reading other people's experiences here, our local hospital is at least making an effort. 10 years ago when I had to go to the EPAU for an early scan with DS2 it was basically a side room of the maternity ward. Luckily for me, everything was fine but clearly, a lot of the women being seen there weren't going to be so lucky. When I had a missed mc last June & had to go to the EPAU again, I was pretty thankful to see that it is now part of the gynae ward instead - much more appropriate in my opinion. I didn't have to go through the ERPC in the end as my body "dealt with it" naturally at about 13 weeks, however, at our hospital patients having ERPC procedures are cared for on the gynae ward - not in the maternity unit.

Also, I was offered so much advice by a very lovely gynae ward sister that I really did feel well supported & cared for. I just wish that everyone going through MC could have the same level of care .

I am now pregnant again (18+5) and am absolutely terrified that something may go wrong again. The midwives & staff at the antenatal clinic are lovely though - they seem to really understand why I might be worried .

[MadMommaMemoo]

Does anyone else think this should be extended to include ectopics or is it just me?

[Havingkittens]

Yes, I totally agree MadMomma. Especially as, given the risks involved, it is shocking how many people are refused an immediate scan in these cases.

Unfortunately there is even less support for things that are less commonplace, like ectopics, molar pregnancies, and also for those who have had to make the horrible decision to terminate a pregnancy after finding their baby has certain conditions incompatible with life (or even full term pregnancy). All of whom are feeling pretty shell shocked and devastated, with little access to information/counselling etc. and also don't want to be hanging around in waiting rooms with misty eyed, smiling pregnant ladies whilst dealing with their own heartbreaking reality.

These are all cases which should come under some of these codes of practice. Obviously not all of the points are relevant to those who have had terrible situations to deal with after a bad Nuchal/CVS result but these are also people who are suffering from the some of the same emotions, who need to be dealt with with similar tact and tenderness.

[RoobyMurray]

MC is not akin to a bereavement. it is a bereavement.

[lemonsquish]

I was left in a room on my own for about an hour after my scan said that there was no heart beat. It was over 12 years ago, but I can remember every minute! It was as if noone knew what to say, even though i was on a maternity ward. It turned out that it was a molar pregnancy, but I had no idea that they would test for anything, or what would happen to the products of conception. Luckily things are different now, and mothers have a choice in what happens eg cremation or hospital disposal. I wish I had had that choice.
With my subsequent pregnancy, after going through 2 years of screening following the molar pregnancy, I found that the consultant didn't take any fears I had seriously esp early on. When I asked for an early scan he just said 'I'm sure everything's fine' and I had weeks of worry that something was wrong. Thankfully everything was fine and I had a perfect baby girl, but all through the pregnancy I convinced myself that something was wrong.

[WuzzAndBuddy]

Oh reading people's experiences here just makes me feel so sad.
It highlights just how badly the system is failing us

I've had a missed miscarriage, a molar pregnancy, then DS and then a miscarriage, in 6yrs.

I had a molar pregnancy 5yrs ago. When I went for my 12wk scan I was asked if I was sure I was pregnant... There was 'nothing' there...
We'd seen a heartbeat at 6wks and had to convince the sonographer in the same unit we'd had the previous scan that we'd seen a baby at 6wks and yes, I was very sure I hadn't had any bleeding!
That was in the November, I had an ERPC a week later but no one explained why my baby had vanished. 'Its just gone, it happens sometimes' was the explanation I was given.
Two months later I received a phone call from Charing Cross hospital informing me I'd had a molar pregnancy and would need to have a follow up appointment.... 2 months later...
My local hospital were clueless about molar pregnancies, no one even mentioned it.

My last miscarriage, in November was really difficult as DH was away, he's in the Army.
After a week of bleeding I had a scan and was told I'd miscarried.
Then I went through to another room to be 'counselled' by a nurse.
She said 'Oh it must be very hard for you... but you can try again when DH comes home!' and 'A lot of girlies have many miscarriages between healthy pregnancies.' and then finished off with 'Would you like some leaflets?'
I would have much preferred some preparation for what was still to come, what I was going to have to deal with on my own... none of my previous experiences prepared me for actually seeing what I'd passed
If I'd have known I would have opted for a ERPC given my circumstances of being on my own...

Then a few days later I was called by a midwife wanting to book 12wk scan, I told her I no longer needed one.
Then the week between Christmas and New Year, I had another call from the same midwife asking if everything was ok as I'd not turned up for my scan that morning. Totally not what I needed.

I'm so pleased MN is prepared to do something to highlight the problems with the system.
The ten points are great, I will support the campaign right through to the end!

[FromGirders]

I'm very lucky to have had no personal experience of miscarriage, but just wanted to offer my support.
Those ten points seem like a very reasonable list of expectations. In fact I'd have thought they were a minimum level of decent care.
So sad reading the horrible experiences some of you have had .

[stream]

Stronger pain killers should be given to women expected to miscarry at home. It hurts a lot more than you think it will, even for an early miscarriage.

For those women who want it, examination by a geneticist after a miscarriage, to determine the cause. I had this done, through my GP. It was the overriding thought in my mind.

[WuzzAndBuddy]

Oh Swallowed thats awful!
I don't think people realise just how much these experiences affect us, how they affect subsequent pregnancies. That bad experience stays with you forever

[emmanumber3]

I agree swallow - I had a MC in June 2010 & am now 19 weeks pregnant again. I spent the entire time from the positive pregnancy test to my 12 week scan convinced that something would be wrong again (last time was a missed miscarriage, so only picked up at the 12 week scan). An early scan would really have helped & saved me alot of stress & worry. I'm fairly confident that things are going OK now as the physical signs are all progressing normally - but in the early weeks when there can be few signs, it can be very hard to be positive.

[emmanumber3]

P.S. I was also given the "before scans women just had late periods, not early miscarriages" like that was supposed to help. Seeing as how early scans are possible I would have liked one!!

[WuzzAndBuddy]

I'm 6wks pregnant now, that 'worry' is back again, although not the same as last time. In november I just had a feeling I was going to miscarry, this time round it really feels different. Fingers crossed.

With DS I didn't enjoy my pregnancy or believe that I was going to get a baby at the end of it. I was just pregnant, I never said 'I'm having a baby', think it was self preservation, stopped me getting hurt if it went wrong

'Late periods'?? Bloody hell, how insensitive
Even if thats what it 'technically' is, to the woman (and man) its their child

[Twit]

I want to add my support to this.
I had a MMC which was picked up at the 12 week scan, it had died perhaps a week or so earlier, and I was suffering from HG. I was taken up to the Maternity unit to be re-scanned in the same room they do the 20 week scans, so surrounded by happy bumps etc.Then I was left for 2-3 hours in a room on the maternity ward (constantly throwing up).
Eventually I was seen, told my options, and dismissed.
I went in to be rescanned internally a week later (again in the maternity unit) and given the tablets and told to come back in two days for the pessary (to the day ward).
I was still throwing up, barely managed the tablets and the consultant wrote, clearly so I could see it, abortion (for why I was having treatment). I made her change it to MMC but she was pissed off about it. It was important to me though.
I was told DH would have to drop me off as it was a female ward so I would have to lose the baby alone. We got there and i was throwing up, bleeding and in pain - the sister talking to me and giving me the pessary was lovely, and kept checking on me until her shift ended.
But the worst thing was listening to the nurses at the station, with everyone's notes in front of them merrily chatting about some-one they knew who had just had a baby. On and on they went, before sticking their hed around the curtain and asking me if I wanted a paracetamol for the pain. (Er no, something stronger would be great and you shutting the fuck up ) before resuming the conversation about pregnancy and babies.

[digitalgirl]

I can't fault the way I've been treated by my hospital for my miscarriages. I remember reading the code when it was first brought up by MN. I hadnt miscarried then. So when my first two miscarriages happened I knew what to look out for. I made sure I went to a&e on a weekday and was scanned within a few hours. After that they told me I could just call the epu direct for an early reassurance scan from 6 weeks, no need to be referred by my gp.
After my third I was referred for recurrent miscarriage testing. It was at this point that I was at my lowest - as lovely and sympathetic as they were I had to wait two cycles before I could be tested, different to what others had been told at different practices/clinics. The wait for testing and the results was torture - if anything could be done to improve testing backlogs/conflicting testing conditions that would be great. I also think testing for causes of recurrent miscarriage should be done after the first miscarriage. The hormone tests, clotting tests and a thorough scan of your uterus - none of these cost much and you could save a lot of heartache as well as give couples the confidence to try again knowing they'd ruled out the most obvious reasons. Doctors don't wait till you have three strokes to begin investigating the cause, I don't see why three babies should die before investigating. Incidentally all my tests came back clear (so I'm having some extra ones done privately).
With my fourth there was lots of sympathy but unfortunately no further testing or treatment to offer. I may never have an answer as to why I keep miscarrying but at least I can feel confident that my local epu will treat me with respect and dignity.