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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.
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 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 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 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 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 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.
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.
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!
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).
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).
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