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Miscarriage campaign - next steps(86 Posts)
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.
MN was an enormous help after my mc I think it would be good if women could be referred straight to the forum with a strong emphasis that it's completely anonymous among other support options.
This code is really excellent and comprehensive.
I would have found it useful if the EPAU had made sure I knew how profound the psychological effects of mc might be. I wish I'd been warned that it might take me a long time to get over. (It took me two years and a successful pg).
Just to keep you all up to date: thanks so much for all the suggestions on here. We're going to look into the possibility of feeding into the current NICE review of its miscarriage and ectopic pregnancy guidelines; we're also going to try to get a grip of how the shift to GP consortia will affect this issue, and see whether there's anything we can do there. We're also looking at this thread to see whether anything needs to be added to our code (such as pain management).
Your ten points all look very relevant.
When I suspected I was miscarrying my 2nd pregnancy I phoned my GP (to get the pg test result actually) and explained that I had started bleeding. She asked me if I wanted the baby. WTF?!?!?!?!
She offered me no advice whatsoever re the MC, only to go to A&E if I continued bleeding.
I did, so I went & they were good in so far as I saw a constultant & was able to talk about what was happening, but that was only after waiting in the 'Major Trauma' unit with RTA victims as I was 'bleeding'
What a total waste of everyone's time.
I was never offered a scan or follow up appointment of any kind, and after the totally unsympathetic/useless reaction from my GP just got on with it at home.
Thankfully the pain I had was just like period pain.
God help women who go through this more than once!
Hello all. Thanks so much for your support and suggestions, and for sharing what must be painful experiences. We'll be reading this through carefully and we'll be back with a plan in the near future. Do keep posting if you have any further thoughts in the meantime.
I think the message here is unfortunately the same one you see for many aspects of the NHS - care in some areas is exceptionally good and in some areas it is exceptionally poor. There is a big need to set a nation-wide NHS standard for the level of care that should be provided - exactly as has been done for other conditions and clinical pathways.
The points in the Code are all very valid and cover pretty much all of it. The only thing I would add is concerning pain relief and expectations of pain - I had a natural miscarriage at 7 weeks and as it was so early on I thought it would just be like a heavy period. I was at home and took a couple of paracetamol as advised by NHS Direct and my GP. Nobody warned me that when it really started I would have full-on contractions and the worst pain I have ever experienced in my life - it was very, very frightening for me and also for my husband as neither of us had any idea whether this was normal or whether I was in serious trouble. Some advance warning might have been alarming but at least I would have been prepared for what actually happened. Pain and fear tend to stay with you for a very long time afterwards and this experience has had a massive impact on how I have coped with my current pregnancy.
I support this too. Had a miscarriage at 11 weeks over an Easter weekend. Passed the feotus at home, wrapped it in tissue and went to A&E. Sat there for ages, then A&E nurse asked a series of questions in a very non emotional manner. All I could think was a dead feaotus was in my handbag. A&E were totally concerned with the physical sypmtoms only. Finally got moved to a Gynae ward and was treated much better.
I second Lenin MN was a life saviour when I lost my little one at 11 weeks.
In terms of scanning, we would probably need a complete change in attitude. I was not given a scan until it happened (probably to save me the heartache, it still makes me cry...).
Also because it all has to be natural, they just sent me home from the hospital when it was crystal clear I was miscarrying.
On the plus side all the staff was really understanding and kind, and they thought they were doing the best they can for us. I had a lot of hugs. And they explained to me very well why I should not blame myself, which was very important later.
I should add, the lovely Sister who booked me in when I arrived told me that the remains were taken to be cremated after a service in the hospital chapel - once a month and that I was welcome to come along.
I just wanted to add my support to this campaign. I have had 2 mcs, and the first, which was also my first pregnancy, was appaulingly managed.
However, both my mcs happened naturally and at home, and whilst painful, neither was actually any worse than bad period pains. Both were far far more distressing, but my experience of the pain was thankfully not as horrendous as many here have had. I would also not have wanted to have an EPRC, and preferred to deal with things in the privacy of my own home and without any infection risks. What I did want, especially first time, was a much clearer idea of what I would actually pass, as imagining what might come out was quite frightening and also the bleeding was heavier than I expected, though perfectly normal.
I too had comments about late periods and people testing too early these days (i.e. before 2 missed periods!!). My body was screaming it was pregnant, I was cripplingly tired, had stinging nipples & swollen breasts, metallic taste etc etc. Especially the second time, when I'd had a child already, it was 100% obvious to me from before I tested. Just because women couldn't test years ago and didn't know for sure, doesn't mean they didn't know they were miscarrying. Then, like now, I expect it was a topic not much talked about. Those who've not been through it really do struggle to understand the emotional pain involved. Before it happened to me, I too thought it 'just one of those things' and knew how common it was. The steamroller of grief, disappointment and crushed dreams that knocked me off my feet, especially the first time was all the worse because the strength of my distress was to me so unexpected.
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.
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.
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
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!!
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.
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
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.
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 .
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!
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.
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