Campaign to raise awareness of Miscarriage

[Lynzw75]

After having now experienced miscarriage myself and reading the many stories on Mumsnet I feel there has got to be some way we can ask for more awareness to be created about miscarriage and what to expect as so many of us have gone through it blind. I wouldn't know where to start. There are many questions each of us have and so many worries that could have been prevented through proper education or an informed leaflet or booklet. It would be so easy for one to be put together by the NHS and given out in the bounty pregnancy information folder or given out at EPAU's etc following the bad news that so many of us have received this way. What can we do?

Hey Lynzw75, I want to support this. I stumbled into the MC without any knowledge because it's still, shockingly, too taboo to discuss and I was too stupid to ask more. I've chosen to be open about my absence at work, which I know is a personal choice and I don't judge others at all for making more private choices, but I did so for the very reason that it seems to be something we have to do on our own in private and I disagree with that, it should be a choice, not a taboo.

For me it's about the medical care, the lack of notes being kept up to date, a lack of connection between appointments, the inconsistency. I had to tell each and every person I saw that I'd MC'd, and when I rang to cancel my MW appt because I'd MC'd, that was it, no offer to speak to MW or anyone and nothing following. Why couldn't they communicate between themselves?

I was given a leaflet when i had my 1st, that was a bit helpful.

Its the complete lack of education and lack of consideration and facilities.

from analgesia (just take paracetamol & brufen)
to where you are put during the mc. My local hospital does not have a ward or beds for mcing women.
Consequently there are no properly educated nurses on a specific ward.
to referal process to areas of expertise for reoccuring mc.
to appointments.

I truly feel, like we just dont matter to any one.

mn are campaigning steadily though.

Mrsnesbit, how can I find out more about MN campaigning on this? (and very, very sorry to read your other posts).

www.mumsnet.com/campaigns/better-miscarriage-care-campaign

I would support this, I agree with Wrigle, the communication is awful, you are treated like a statistic most of the time, during both of my mc's we were left in a corridor outside the area full of
heavily Preg women being scanned and dealt with BEFORE me, it felt like I was the challenge and left to the bottom of rhe pile, both times I was left with a junior doctor afterwards who didn't have a clue, couldn't answer any of my questions and just seemed to want to get shut of me. On the day I started bleeding with my first mc, I leftca message for the mw - she never ever returned my call and then several weeks later wrote to me about NCT classes!! I'm glad she did because it gave me the courage to call her and tell her what she had done and how abandoned I felt at the time!

So in short, my big thing is treat us all like individuals, we might br a statistic but FAKE it if you have to mrs health care professional, we don't need to get the feeling that we are!! it's the biggest heartbreak I've been through (twice!), give me a clinician who can answer my questions, and improve the comms!!!

If I can help, message me...

Estelle x

Don't start me on being left in a corridor after being told you've had a mmc...! The lack of empathy I've experienced at the hands of the nhs is disgraceful. Total opposite of the care I get from my current clinic.

I just found today that I've had my 6th mc. Or it could be an ectopic, I'm waiting for my hcg count result. Having had tests done after my 3rd mc a year ago, I found I have very high levels of Natural Killer Cells, which aren't really recognised by the NHS as a cause of mc. It's essentially an auto immune response that means my body attacks the pregnancy early on.

So, had I not been lucky enough to have the resources to get tested privately (And to live close to the clinic run by the best consultant specialist in NKCs), I'd have had to live with being told "we're really sorry but it's just bad luck, go away and try again". It isn't always bad luck and although I'm not yet a success story for the NKC treatment regime I'm on, I know of lots of others who are mothers because of the treatment and feel incredibly strongly about telling people about NKCs, as it could be the explanation needed to prevent yet more heartbreak from recurrent mc's.

OP, you don't say how many mc's you've had, and one is very common, shockingly so. It could just be bad luck. If you have more than two, there's likely to be a reason, but at the very least I'd say get tested. If I had my time again, I'd have got tested after my first. Feel free to PM me for more info.

Take care of yourself, give yourself time and let the emotion out. You will get through it and be ready to try again in time.

Ah choccypud, sorry to hijack this thread but just wanted to say sorry abt your 6 losses. I too am a strong advocate for NK testing if it warrants it and think it could prevent a lot of early mc heartache, the proff I went to see specializes (wonder if it's the same hospital?!) but you do have to pay and in my case she wants to to try progesterone and close management first - good luck with the treatment for it, you will feel do much better next time just knowing you are doing something - fingers crossed for you.

Estelle xx

i competely agree with this idea ut am going to take it up with my hospital/trust myself and write a letter about how they should do the leaflet adn what we would like to know. i think if they got this feedback from us all again and again they would get the message in the end :)

I agree with this COMPLETELY and have been thinking along the same lines after this week, so I would love to get involved. I challenged the nurse who was, it has to be said, nicely dealing with me the other day. When I asked why we are not given anymore information about miscarriage, either when it happens, or even at that first appointment with your dr, she said she'd never been asked that before! I was referred to the miscarriage association and she said she would bring it up at their next meeting at the hospital. I am hoping she actually will.

To be told by the sonograher that told me my bad news that I would experience a heavy period and would need strong pain killers is better than no advice at all, but really, from talking to people in real life and on here, it is the absolute MINIMUM we should expect! If it hadn't have been for the advice of some lovely women on here, I would have freaked out when I went into 'labour' on Saturday before 'delivering' my baby! The sonograher said I'd be unlikely to see anything other than clots, yet I was sat there with a very obvious sac and placenta(?) filling the palm of my hand! If that's a heavy period then I've been having it easy all these years!

Please PM me if I can do anything to help. In the meantime, I will check out that link above.

I'd encourage those who feel they've had less than reasonable treatment for whatever reason to write in and tell them.

If nobody does then nothing gets done.

I'm still thinking mine out but will be writing in a letter of ... not so much complaint but.. why is this done this way and not this way, why was I not told XYZ etc