Mumsnet campaign for Miscarriage standard code of practice

[carriemumsnet]

When Alan Johnson came a visiting last week, miscarriage and some of the frankly appalling treatment that Mumsnetters have suffered was one of the talking points Following on from sfx's comments (and others) this is what AJ had to say:
"it seems to me from all your comments and from talking to the Mumsnet people here that we really should seek to ensure a common set of standards across the country. I think I'm in at the start of a new campaign and it's something I will talk to Ministers about when I return to the Department. Mumsnet have informed me that I will not be allowed to forget this issue!"

So now it's down to us to come up with that common set of standards- guidelines and procedures that we'd like to see implemented across the whole of the UK.

I'll happily kick off as a veteran of 2 m/c: but do feel free to disagree with my suggestions/add your improvements :

Automatic access to EPU for anyone with a suspected miscarriage (without having to get a GP referral) and EPU's situated away from regular ante natal clinics /labour wards and devoid of images of smiling babies - please.

Access to all affected to a pamphlet/booklet put together by Mumsnet and full of your tips, advice, empathy and reassurance - describing what might happen and letting folks know they're not alone in this.

Over to you...

Theres not much I can add other than to say I'm sorry for everyone's loss/es and the experiences theyve had. Its not often anyone can read such a touching yet tragic thread.
I m/c after ttc for 3.5yrs and being told there was a chance I wouldnt ever conceive (pcos). As anyone would be, I was devestated.
Missed M/c was confirmed on a Thursday morning and I went in on Monday after being given the usual tablets etc to start me bleeding over the weekend. Never have I had such a long weekend. I too was in a room off a ward filled with healthy baby cries, congrats balloons etc. It was so surreal. DH stayed with me all day (took 7 hours) and I was seen 3 times. First to be given pessarys, Second when I called to ask for pain-killers and third when I buzzed to say I though it was all over and could they check please.
I was sent to scan to make sure there no "remnants" which meant me walking through gynae waiting room full of women waiting for scans and having to wait there for 15mins. One woman smiled and asked if it was my first scan and was I hoping for a boy or girl. I just smiled stupidly at her and luckily I was then called through. I would have hated to say anything to her, the poor woman didnt know.
All the "left-overs" hadnt "gone" so I had to back to the room and waiting for more, then we were told we could leave an hour later.
Absolutely horrifying. I had no follow-up either.

Im pleased to say I now have a beautiful 21m old son and had a pretty uneventful pregnancy this time.

I really hope reading these experiences helps the powers that be to make the changes necessary.

Theres not much I can add other than to say I'm sorry for everyone's loss/es and the experiences theyve had. Its not often anyone can read such a touching yet tragic thread.
I m/c after ttc for 3.5yrs and being told there was a chance I wouldnt ever conceive (pcos). As anyone would be, I was devestated.
Missed M/c was confirmed on a Thursday morning and I went in on Monday after being given the usual tablets etc to start me bleeding over the weekend. Never have I had such a long weekend. I too was in a room off a ward filled with healthy baby cries, congrats balloons etc. It was so surreal. DH stayed with me all day (took 7 hours) and I was seen 3 times. First to be given pessarys, Second when I called to ask for pain-killers and third when I buzzed to say I though it was all over and could they check please.
I was sent to scan to make sure there no "remnants" which meant me walking through gynae waiting room full of women waiting for scans and having to wait there for 15mins. One woman smiled and asked if it was my first scan and was I hoping for a boy or girl. I just smiled stupidly at her and luckily I was then called through. I would have hated to say anything to her, the poor woman didnt know.
All the "left-overs" hadnt "gone" so I had to back to the room and waiting for more, then we were told we could leave an hour later.
Absolutely horrifying. I had no follow-up either.

Im pleased to say I now have a beautiful 21m old son and had a pretty uneventful pregnancy this time.

I really hope reading these experiences helps the powers that be to make the changes necessary.

when i had my mc in 94, i was pg after map, and although i had very mixed feelings, i wanted the baby but docs had advised termination. i started bleding the thirsday before i was due to go in and when i mc on the following tues, i was put in a day ward (along with another girl in same situation) full of women who were there "voluntarily" and were happily discussing their already completed families.

the only person who was nice to me there, was the nurse who held my hadn whne the none too gentle doc did internal exam and told me it was a partial mc and the receptionist. i had bad reaction to the anaesthetic, i didn't know if i was awake or dreaming it was very surreal coming homwe afterwards. i wasn't offered any counselling or anything like that adn for months afterwards i was visiting the ward in my dreams dressed in hospital gown, with drip attached looking for my baby

direct access to mc section of epu, no smiley pics of babies or pg ladies, counselling afterwards and someone to hold your hand whne examd

Ive had 2 m/c too, the first one was when I started bleeding at about 10 weeks. I made an emergency doctors appointment but the whole scenario left the doctor totally puzzled, so he sent me upstairs in the practice to see the midwife who smiled and assumed Id come for a normal pg checkup...she was mortified when I explained I was bleeding and said she had no idea what to do but to go to casualty if bleeding got worse...my husband and I were very confused at being sent from pillar to post, we needed someone to gently explain actually nothing could be done to prevent it, and to phone the gynae ward for advice..
Then I m/c at home on the loo...
Next came half an hour of me sobbing in A&E before some marvellous nurses/docs checked my blood sugar (still unsure why they did this) and took urine samples before sending me over to gynae where I should have been sent in the first place, where a consultant asked me to describe what came out (noone told me to keep a sample and I wouldve found that too gruesome anyway)
I didnt get a scan as they were happy it had all come out, and went home.
Realised no-one knows what to do when you are m/carrying so some clear advice wouldve helped enormously and saved us a lot of worry

the second one was detected at 12 week scan. we were dealt with incredibly professionally, taken to a grieving room and offered the tablets/d&c, I had to have a d&c as I was still bfeeding my first dd and the tablets were unsuitable so I was done a few days later. Far better experience, was handled correctly and we had opportunity to ask all the questions we needed.

I got pg a few months later, but suffered hyperemesis,,,ended up on gynae ward after referring myself (I bypass my gp now and deal directly with the hospital regarding pg issues) I was fine and treated well, but I was opposite a young lady who was recovering from an ectopic and we both found it distressing - we were there for 4 days facing each other, me doing my best to be sympathetic to her but desperately worried I would m/c for a 3rd time, her desperately sad but happy for me. Better to keep the ectopics/m/c sufferers away from the pg people on different wards really. Reiterating what others have said here.

I had an ectopic pregnancy diagnosed at the EPU at St George's Tooting. You can self-refer there and when I found out I was pregnant again, they scanned me at 4 weeks and 6 weeks to confirm there was a heartbeat.

I totally agree that these policies should be common across the country.

I had a m/c in my first pregnancy - was deemed a missed m/c and I had to go through my gp to get referral to EPU. No real criticism of the treatment I received from NHS, although the points re ability to go straight to EPU without referral, speedy ERPC where necessary would certainly have my backing.

I just wish everyone involved had some idea of the need for sensitivity. Since I was unable to have my ERPC immediately on the NHS, I was lucky enough to have private medical cover. The guy (!) I spoke to at my health insurer was ignorant as and asked questions like "Have you suffered from this condition previously?". Innocuous maybe, but given I was speaking to him within an hour of finding out about my m/c, it was far from the understanding tone I would have hoped for. There's a lot of ground to be made up in terms of making everyone aware of the effects of m/c.

Voodoo - I was still bfing dd but was offered the tablets for medical management - no-one even asked me. Good job I didn't take them hey...
This is such an important and desperately needed campaign and I think it has helped a lot of people just to be able to offload their experiences on this thread.

I had three miscarriages between DD1 and DD2. The second was the most upsetting for several reasons, but mostly I think because I saw the tiny bean-shaped embryo on screen, which made it very real. Women should probably be advised not to look if there is a chance that they are going to miscarry. Also the due date was 14 Feb, so it will stick in my mind forever. People who have not experienced miscarriage (and even those who have) can be incredibly callous. There is a whole 'get over it and try again' attitude. 'In the old days people just got on with things'. Yes, of course far worse things can happen, but people should be allowed some time to grieve - it is a loss even if it was only eight weeks old... I felt like I used to see a little ghost beside DD1 in the bath.
It would also be helpful to be told what to expect physically, because I was surprised at how much tissue came out even though it was 'only eight weeks' and also how much pain to expect.
I am going to name and shame - Ealing Hospital A&E treated me appallingly after my first - basically told me (in A&E with lots of people around) that home pregnancy kits were notoriously unreliable and that I was just having a late period, which I wasn't - I'd been pregnant before - I know what it feels like. For all she knew I could have been trying to conceive for years and been completely devasted. Luckily my very lovely GP reassured me that in fact the home tests are really accurate. For the second and third I went to the Hammersmith/QCCH and the staff were really lovely. With the third I even saw the same doctor at the EPU on the Monday morning as I had seen in A&E on the Saturday; to have that continuity of care was great. Not to be ageist, but I found the younger staff (much younger than me!) much more sympathetic so perhaps teaching about miscarriage has improved over time.
I do understand that the NHS has limited funds, but I feel that women who have miscarried several times should be treated sensitively when the finally do hang on to a pregnancy. At my booking appt for my pregnancy (now DD2 ) after the thrid miscarriage the first thing the midwife said to me was 'you won't be getting one to one care' followed by 'three miscarriages, I wonder why that happened?' My thoughts: 'Yes, sweetheart, so do I...' At my nuchal scan the doctor asked me if this was my first pregnancy and had the grace to look mortified when I said 'No, fifth'. Read the feckin notes!!!!
This is a great campaign.

I was placed opposite a girl with hyperemisis this time round and ended up sitting talking to her and reassuring her that she was going to be ok. It felt kind of surreal especially as she had been holding my hand in the night asking if I was ok.

i was treated quite badly with my ist m/c at 12 weeks. i went to the doctor when i started bleeding and was told what will be will be and was given the number of the foetal health unit at our local hospital. i rang them when bleeding increased and was told just to take some pain killers and wait it out. she said there was no need to ring back unless i was still bleeding in 7 days time! i was given no info on what to expect or anything and absolutely no follow up. 2nd m/c 1yr later was totally differant, i was scanned as soon as bleeding started and i really coulnt fault the treatment i received that time. my suggestion would be more support and info for those going through m/c and definately some sort of follow up

Tired and Grumpy - I had problems with my health insurer too - was shocking that they made it so difficult for me when I had enough to worry about without that.

I had a horrible time after mc my first pregnancy (mmc at 12 weeks). I had an ERPC, which was unsuccessful (the "products" remained ). After months of pain and amenorrhoea, and many visits to the GP, I finally financed a private scan which showed the problem. Then I had another ERPC. Again, after months of pain and amenorrhoea, plenty of trips to the GP, I financed another private scan, that showed that my cervix had grown shut from the scar tissue of the second ERPC (cervical stenosis) and my menstruation blood was being pressed in the abdominal cavity, making another surgery necessary. When I called A&E during the severe pain periods, they said to take paracetamol and come in if is doesn't go away in the next days. In the course of this I was diagnosed with a number of possible scenarios: second pregnancy, ectopic, Ashermann's but no further diagnoses were undertaken (including the ectopic!!). All I would have needed ware post-ERPC scans to make sure the womb was emty.

I came away with post-traumatic stress syndrome, since the doctors didn't believe me and prescribed antidepressants instead of checking out my symptoms. I am happy to give out name, dates and the hospital. I have started the NHS complaint process, but the consultant who denied me further diagnosis (I had asked for a scan), was in charge of answering my complaint letter. You can imagine that this wasn't helpful, since he was mainly concerned with covering up what had happened.

Anyway, I think there should be routine scans after ERPCs and there should be a bereavement nurse checking on you a least once after miscarrying.

We live in Germany, and I have to say that the health care here is generally very good.

If a m/c is suspected the woman is scanned on the same day, generally at her gynae or at the EPU in hospital. Making a woman wait over a weekend or holiday period is torture.

When I had my first m/c a D&C was arranged the same afternoon, the second time it was a day later.

Here most women are offered D&Cs, it is the accepted practice here.

I think that women should have the choice, if they want to have a D&C then they should get one. For me, the thought of waiting for days or weeks to miscarry naturally is horrible. I wanted the medical side of it over as soon as possible.

I would also welcome some kind of support and counselling for both parents. The fathers have lost a baby too.

Well done MN for taking up this campaign, it is something that saddly affects many lives and it is great that something is being done.

Agree also that there should be more explicit explanation of what to expect physically.

I wasn't really told.. they just said, come into A&E if the pain or the bleeding gets to be more than you can cope with. Being in a state at the time anyway, I didn't really register what this actually meant, went away for the weekend as previously planned to try and take our mind off things, and ending up bleeding buckets with agonising cramps and no painkillers at 5 in the morning in a hotel. I felt stupid for not realising but had no idea how much pain there would be.

Also sympathetic treatment for partners too - they seemed almost embarrassed with my DP, and a bit patronizing.

So sorry for the losses on here and the stories some people have. I think our treatment was distinctly average but nothing like as bad as what some people on here have suffered.

"For me, the thought of waiting for days or weeks to miscarry naturally is horrible. I wanted the medical side of it over as soon as possible."

I can see why that's a common reaction, but the thought of a medical procedure I personally didn't need seemed horrible. There was a part of me hoping it had been a mistake and my baby might pull through, which was very silly, but I think if I'd had a D&C I might even have felt more guilty about that. But the medical staff wouldn't tell me absolutely that my baby had died, they said it was possible my dates were six weeks out and we were on the border of being able to see a heartbeat. I knew that wasn't the case, but still, a part of me.

Now you could say that being given that hope was bad practice, but I think given the strange things that happen with babies, it probably wasn't. So I was glad that I was given the option of no D&C as if it was a normal option, because I think I personally would have found one more traumatic. (As I said before, though, and as others have said - more warning about the pain and effects needed.)

EBenes (is that as in Elaine? ), that's exactly how I felt. I needed to go through it. Having said that, I couldn't get an ERPC for over a week and I miscarried naturally in the meantime so I guess that would have happened anyway.

I think the key here is to have the choice - that you are given the options and the pros/cons of each and are given time to make an informed decision about what is right for you.

I haven't had time to read all the thread (yet) but wnated to add my tuppence worth. I had a missed mc at 11+ weeks and decided to go for the medical managment as I thought it would be easier on my body - no general etc. I was given pessaries and painkillers at 8am supposed to be followed by more meds every 3 hours. The MWs couldn't read the Drs notes (they said) and consequently missed my second dose of meds. Subsequently I was still roaming around the EPU at 8pm.

I was also put in a room with a very young girl who was attached to a drip for dehydration - only a curatin separating us, and all her family were in and they were all chatting excitedly about the baby - whilst I was losing mine on the other side of the room.

Due to shortages at the time the EPU unit wasn't open at nights and I ended up having to go to the labour/delivery ward. I was told that if nothing had happened by the next morning I would have to go through all the medication again. LO came out in the early hours of the morning so thankfully I could go home the next day.

There are no words really to say how awful it was but there should, without doubt, be facilities available for women going through this away form other pg women - it is distressing for everyone if we are all packed together.

Re: this 'chemical pregnancy' business.

What the hell IS a chemical pregnancy??

There was a woman who used to blog out of New York who had countless miscarriages and was a daughter of DES (a synthetic oestrogen now known to cause fertility problems in the offspring of the women it was given to). As she put it once, the only true chemical pregnancy is a shot of HCG in the arse.

If your fertility problem centres around implantation and the failure thereof, it's pretty ill-informed and outdated for any health professional to speak in terms of a 'chemical' pregnancy.

It just makes it sound like you're a 'hysterical' woman with a wandering womb...

i've only read about half of the posts - it'smaking me too upset. But this is what I would like please:

training for all medical staff on awareness of symptoms of m/c along with some kind of sensitivity training. m/c & ERPC aren't just medical processes - as someone said it is a life changing event, one minute you are expecting, the next grieving and literally empty. In fact all medics could do with training about treating us all as individual human beings no matter what the condition is. And they could trust our instincts - twice I have had to shout at staff that I know I am losing my baby and twice they have not seemed to believe me. Two m/c.
privacy either while waiting for the scan, giving birth (as you do 13 - 23 weeks), having EPRC etc. If at all possible a private room/wing. Mixing us in with happy women or even medical/surgical patients isn't right - we deserve privacy to grieve. I wonder whether they mightn't learn lessons from the hospice movement?
information when and how we want it. Sometimes there and then, sometimes a while later. Certainly access to a reliable source of information not necessarily leaflets and websites, maybe a human too?
follow up appointments in a separate place. Going back to the antenatal clinic for a follow up with my consultant was so painful, I felt as though I could hardly breathe in there. Maybe his office might have been better?
specialist staff trained and sympathetic to how we feel - husbands and families too. It is no good being told 'well you have one healthy daughter' when you have just lost a baby - sure you love the living one but somehow her presence made it more acute. Maybe some kind of hybrid midwife/HV/district nurse. Again, learn lessons from macmillan nurses?
access to medical records without a hassle - it would be good to look at it all written down (so would have to be non medical language).
future pregnancies monitored and treated very sensitively. I don't want to talk to brusque and time pressed staff about my two precious losses. They should see it on my notes and be prepared for my questions.
recognition that we are all different. I grieved but know others who didn't seem to. Some of us will naturally react differently and at a different pace. There is no magic formula for dealing with us.
money for counselling women who would like this afterwards or during a future, scarey pregnancy.
involve and engage with women who have lost babies and with representative organisations. We are the specialists.
time to grieve how and when we want it. Time off work for mum and dad like mat/pat leave perhaps?(and they need to remember we are mum and dad even if now we are technically childless). It took me a whole year to go back for the cremated ashes of my beloved third baby who was born after an amnio. He was so very much wanted and I couldn't let go of him for a long time.

My heart goes out to each and everyone of us who has lost a baby.

Brilliant list Ska. Can I add:

Testing The blanket "3 strikes" (as someone put it on here) needs to be looked at. I have a friend who comes from a family full of miscarriages and her doctors told her it didn't matter, she still had to have three herself before they would test her for anything. She desperately wanted a baby but had to get pregnant knowing she would most likely lose it again. How can you do that? She did do it, I know I couldn't.

Antiphospholid Syndrome should be tested for as standard in every pregnancy, it could be done by the CMW at the first meeting and the results/ repeat done at the hospital at the booking in appointment. It will save a lot of babies and will potentially save the mother in the future. If the mother miscarried too early to have been tested she should be tested after. It might be a big thing but we test everyone for sickle cell and thallasemia and it will save future miscarriages. A blood test is cheaper than having to book out an operating theatre and everything else that can go with a miscarriage.

Ebenes
This is a problem that I have with the German system, I was pretty much forced into having a D&C (with horrific tales of womb infections and septicemia). The first time my doc was terrible, very unfeeling and I felt rushed into it. I know in my head that my baby's heart was not beating but even now, 7 years later, I still feel guilty. The feeling of perhaps there was still hope and we acted too soon.

I changed gynaes and my new doc was much more sympathetic. The hospital was great and even gave me an extra scan (done by the consultant) to reassure me that there really was no hope.

My feeling is that we need more choice, more individual responses. We are not all alike and no two m/c are alike so there can be no patented solution.

We have to be able to offer the parents as much or as little support as they want.

Stop using the term Spontaneous abortion, I have not had nor never wish to have an abortion, I have miscarried two precious children.

I found out my baby had died when I went for my 12 week scan. A midwife gave me a leaflet for the Miscarriage Association (which was useful)and that was the extent of the support offered to my dh and I. I was not allowed to miscarry naturally, the doctor insisted that I have a EPRC (evacuation of retained products of conception). This procedure happened 2 days later. The delay turned out to be a blessing as I had a chance to say goodbye to my baby and have the baby blessed by a priest. I wanted to find out what happened to the remains but the hospital didn't have any policy regarding such in place.

I wish that my husband was allowed to stay with me while I waited for the EPRC. It would have helped to have had someone trained to talk to. My subsequent pregnancy was horrible and I didn't bond with the new baby until the birth as I was too frightened too. Extra care should be given to pregnant women who have previously miscarried.