The Mumsnet Miscarriage Code of Care

Done,& thank you for this campaign as we really need to be more open about talking about miscarriage and improve the support & service available.

Both of my miscarriages have been recorded as "blighted ovum". The first actually wasn't but that's another matter.
Blighted ovum is not an up to date term and I think others have been recommended such as early pregnancy loss or early embryonic demise.

Vivid - blighted ovum is a miscarriage. Its just a way of describing a miscarriage, in that it is an empty gestational sac. I have had three miscarriages one of which was a blighted ovum.

Like Vivid, I wonder why you are only concentrating on miscarriage, and would recommend speaking to Helen Wilkinson and colleagues at the Ectopic Pregnancy Trust for input and their counterparts in other related charities.

My experience was an ectopic, but to add to point 3; in the (long) wait for my laproscopy I was put in a ward opposite a lagy who had bladder problems and was visited by members of her family including three newborn babies. When my Mum politely asked them if they would mind visiting in the family room as I had become so distressed they complained to staff and I was moved for being 'disruptive'.

Like many other posted I waited in an antenatal outpatients department to be seen by the EPU, whilst bleeding. I had to return to the same place for my blood tests a week after my laproscopy.

Access to a private telephone post-diagnosis may seem a small thing but should be added. We were given this, but I imagine it's not always common place.

Joined up care is crucial. I was taken into a different hospital for my ectopic to the one in which I was registered by when first pregnant. This meant that three weeks after my pregnancy and fallopian tube had been removed, I received an appointment for my 12 week scan and a pack of baby info.

Survey completed. Thank you. I did weep, but it was sensitive. Let's hope it helps. Here are my small additions or clarifications to your points, but what is there is good.

1. Definite training essential (shame we can't include employer/company HR departments in that). Counselling should be offered and not just make your way to a dreary local meeting of Miscarriage Assoc support to find out you are so many miscarriages behind everyone else. While I was humbled and realised my situation could be worse I did not find it supportive. Also, no assumptions made without fact on what the scan shows. I was told a definite MM. But when I asked how sure they were it fell very short of 100% and those remaining % were important to me so I went back a week later to check. They were sadly right but that % made a huge difference to my choices. Also contact with a hospital chaplain should be offered.
2. Access to scanning. I think this shouldn't have to go through a GP but you should be able to just take yourself for a scan if you need one, or at least contact EPAU direct. This is possible out of hours... so why not all the time?
3. EPAU/Scans should not have people coming out into the waiting room directly on being told the result of scan. A separate entrance and exit (similar to cancer screening) with a place for contemplation/support after would be better.
4. Good. But also information on when and at what point you can change your mind i.e. if you decide to do things naturally and then feel (medical)intervention is needed. Also full information on possible side-effects and stats on how likely.
5. Definite joined up care. Can there be any information to give to employers as well or how to explain it to employers and what to expect. Can there not be bereavement leave? Definite subsequent booking and scan appointments cancelled by HCP.

I have filled in the survey, but about my first mc which was on the NHS.

The NHS missed mc was a v mixed experience - a lovely sonographer who gave me a big hug when breaking the bad news, a helpful hospital receptionist finding me a private room to cry in when I got back from the scan in tears, two doctors who were supportive and helpful. A week later when I went back for the op the different receptionist was grumpy and rude, the nurses were very short with me and made it clear that any problems I had in the days after the op should be dealt with by my GP, they didn't want to know (which makes me wonder if they ever find out what their post-op infection rates etc are), the curtains didn't shut on my cubicle (a small point but really not pleasant when you are having an internal examination on a ward!), when I went down for the op a nurse said "you look happy". The anaesthetist and surgeon however were both lovely.

Second missed mc was private (private scan and private operation). It cost us a lot but were treated brilliantly at every step (including the scanning centre - we didn't have to pay straight afterwards but were told we would be sent the bill to pay later which was much easier). When I had the op (which I had within a day) I had a lovely nurse who explained everything several times and really looked after me. My consultant was also very kind and supportive.

With the second mc, I also had tests done on the baby to find out the cause. I found knowing the reason a huge relief as my due date got nearer - as I knew that due to the chromosomal abnormality that was found, the pregnancy was never going to have got to the due date, if that makes sense (I think that due dates are a real trauma after a mc - sadness mixed with loneliness as so many friends/family have forgotten when you were due, if they ever knew).

Good luck with the campaign.

Why are you focussing only on miscarriage and not other losses such as ectopic pregnancy, blighted ovum etc?

After being told I'd had a spontaneous abortion, I was so angry at the use of such an insensitive term I checked the royal college of obstetricians guidelines and they are clear that term is out of date and considered to be insensitive usage (though medically correct). Shame some folk can't follow their own guidelines.

One thing I think would be worth adding to the campaign is a highlighting the issue of miscarriage in sex education at school. Until I had a miscarriage I had absolutely no idea that they are so common. It was such a shock. It would have perhaps been less of a shock if we had been told at school along with the gubbins about how babies are made and contraception. I know a bit of decent sex ed is never going to make a miscarriage easier to bear, but it might just make it less of a surprise, and help people to understand whey they shouldn't tell family and friends too early on.

they do now have an instruction to return the exemption card in the post if you miscarry before 24 weeks. I have never found the strength to do this though. Can't they imagine how hard it is to say "I've lost the baby so here is your exemption certificate back" in a letter?

This will sound a bit silly but it upset me. After my miscarriage I didn't know what to do with my prescription exemption certificate. I, stupidly, phoned them to ask and was told breezily to rip it up and bin it. It was the only official recognition that a life had lived and died to me, and it hurt. Could an instuction, suitable worded, be printed on said document.

I'm so glad you're doing this campaign. It is so important.

thankyou so much for doing this. i was treated so badly during my 4th mc.

i was offered counselling for my 'natural spontanious abortion' and the first words out the counsellers mouth were..."so your baby is dead"..... i was 22 weeks pregnant and had to deliver him normally. a bit of sympathy would have been nice at that time and also to not have been placed in the ward with all the new mums and babies.
it is a very important thing to show compassion to a woman at a time like that and when you dont receive any its soul destroying.

I agree with thinking 'abortion' should be edited. And 'missed abortion' feels insulting, as if I was confused or scatty and didn't notice, when the truth is we prayed every day this one wasn't going to give up. "Oops, Jaffa, you missed your abortion."

at first when I went for a scan, they could find nothing, then an internal scan found a five week sac, hopes up only to be dashed later. that needed more explanation and better handling, because I naturally hoped I had got the dates wrong, even though thinking back it would not have been possible to have had a +ve test when i did and been 5 weeks pregnant, but you just don't think clearly at the time.

more people need to acknowledge that to us it was a baby and it was devastating and just because it wasn't ectopic or further along it was not upsetting.

and that includes you mil did you not think that we might just want to grieve in peace without having to meet up with people on holiday just 2 weeks after and be all nicey-nicey or having to talk about it before we are ready? obviously not or there wouldn't have been that i'm-so-upset phonecall and h what did you think you would achieve by telling me that?

some post miscarriage support would not have gone amiss because sometimes it is odd looking at ds and thinking that he would not be here if all had gone to plan.

I forgot to say that with my last miscarriage I was scanned and told that my uterus was now back to normal size, so the miscarriage was over (despite having been told 3 days earlier that uterus was still very enlarged after the bleeding stopped) So it was a huge shock when 4 weeks later I finally passed the pregnancy sac.

I had been refused hcg level testing to see if the levels were declining. I had to use the unscientific method of using pregnancy tests at home to watch my hcg levels fall very slowly (they only finally went negative after I passed the pregnancy sac a month afterwards).

A simple thing as hcg blood tests would have shown my levels were dropping too slowly, and I might have been offered another scan to check what was happening. That way the sudden extreme pain and the passing of the pregnancy sac at home, would not have been so tramatic.

It is simple things that could help make miscarrying easier.

As a woman suffering from recurrent miscarriages I have found the level of care of staff varies greatly. Some are sensitive and will try to do all they can to stop any extra stress (being on antenatal ward), as much as they can.

Many sadly are incompetent.

One time asking, a junior doctor at an appointment regarding my m/c's, what the result of my ultrasound scan of my womb showed. The junior doc looked at a histology report and said "you'll be glad to know it is not cancer" !!!

I have been repeatedly mis-scanned by registrar or SHO doctors, the consultants or sonographers being unavailable. The mis-scanning included one episode of a registrar measuring my ovary and saying unfortunately that the sac looked empty. Fortunately she did go get the consultant to come and confirm what she was seeing...... and fortunately the consultant at least did know a bit more about what he was looking at and found the sac and feotus.

During many outpatient and EPU appointments, when I have known I have been miscarrying, I have been kept waiting for hours with pregnant women with huge belly's walking past the whole time. On one occassion I was in the same room as a woman in labour having contractions, while my uterus was contracting with the miscarriage, it was not easy, as her pain would end with joy, whilst mine was inevitably going to end in sorrow.

I am now at the point where I will not go to the hospital unless it is vital, as my husband and friends can help me through the miscarriages so much better and cause less pain than the hospital staff.

Recurrent miscarriage is hard, but the hospital staff seem to be able to make it so much worse.

I don't think the medical profession should use the word abortion at all for any miscarriages. I was none to pleased to be diagnosed as a "habitual aborter" in my notes.

There's a point that I would really like to see in the code of care. A "missed miscarriage" should not be referred to as a "missed abortion". I was shocked and upset to see this in my GP's notes, and whilst I understand that it is a medical term, I think that it is very inappropriate especially for a woman whose baby was very much wanted.

Just also want to add that I agree with the need to abolish that ridiculous habit of not telling until you're sure. Surely when things go wrong is exactly when you need people around you to know so they can treat you sensitively and understand why you might be not yourself/off work, ...

Taken survey. 2mc in 1 year so far. :(. I think my care was over all quite good & sensitive. My only issue was the difficulty in getting in touch with the EPAC nurse and her getting back to me quickly enough with results. Twice I was told to expect a call and it never came.
I'm very at mums who miscarried at home not getting a scan. My 1st misc was a missed miscarriage and I decided to let nature take it's course. I had a scan afterwards to confirm it was complete.
My 2nd miscarriage was on holiday abroad. Again I was offered a scan afterwards to confirm it was complete. Why isn't everyone offered this
I do like all points. Being someone who works in a hospital, I know it can logistically be difficult for trusts to keep misc and termination women separate on the ward, but it can be done.

done.
I'm so glad you are taking this up M/N. Someone has to, as there are far too many 'horrid' stories out there that just shouldn't happen.
Thank you.

I've done the survey. Thanks for trying raise awareness. I think MC should be made part of common discourse in order to break the weird silence and confusion around it all. I wouldn't have coped without my MN thread, not at all.

A small point on the survey. Most of the questions were about the NHS, which meant I couldn't answer them. We had discovered problems with a small (but heart beating) foetus during a private scan we'd paid for before going on holiday, so we stayed private for HCG tests and then the awful scan confirming it was all over. Our consultant took my tests to the lab himself and rang us at 830pm on a saturday to give us results, which was very kind. He gave me the medical mgt pills too, and again the survey didn't capture medical mgt really. I had a very straightforward (but heartrending) process in the comfort of my own home. (I know, if you can afford it that's great) but I guess I'm saying the survey didn't allow my experience to be captured. Perhaps make it clearer that you're trying to survey the NHS experience?

Reading everyone else's experiences is very sad. Let's do what we can to make things better.

and i think i'll hide thread now - went to start typing out loads of stuff here but actually don't want to get into it all again.

sorry to everyone for their losses and experiences.

done.

I didn't really have anyone with my first Mc which was a Mmc, but at that time, the hospital were wonderful and they held regular miscarriage support group meetings (nursing staff volunteers) that were just fabulous for support and advice. My last Mc was so different though, with no support at all.

More stuff I didn't include keeps coming back to me now. It was only last year but I think I blocked so much out.

Spinaltap I had just the same as you. After my scan there was nowhere to put me except back in the waiting area. I asked, but they said they had nowhere. I had to sit there for 3 hours waiting for the doctor to finish his appointments and speak to me whilst other pregnant women came in, had their scans, and went out cooing over their scan pictures.

It was awful, truly awful, and I agree that even if individual nurses were nice to me (and some weren't), the system was set up in such a way it felt as if it didn't give a shit. The worst thing that's ever happened to me in my life and I had to just sit there and wait in a corridor with happy pregnant women. .

I've had a bad day or two since this, MNHQ, because I think there's so much I've just buried through lack of any real support, and this has brought it back. But it needs to be done; you'll help other people through doing this and I applaud you for doing it, even if it is personally upsetting. Like Graciegirl it was the mumsnet miscarriage thread that was my lifeline; the only place where I was not utterly alone. I'll always be grateful for that.