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...

Totally agree....
Had to wait in a waiting room full of pregnant women, whilst knowing mine was gone...
I was lucky, and had an early scan with my next one - but still worried for the whole of the pregnancy.

Employers should be forced to provide paid emergency leave for BOTH PARENTS to cover both threatened miscarriage emergency medical appointments, and post-miscarriage compassionate leave. My husband was given a formal warning for taking two days off to be with me when we lost our first child when he had no annual leave left.

Have had three early m/cs, was told after first two to go home and take a paracetamol, and call the surgery if I was still bleeding in a fortnight. When I asked about what was coming out of me (I think I said "It looks like more than just blood") I was nonchalantly told "Oh yes, that will be foetal remains". As a result, I didn't go to the doctor for my third, just coped at home. In contrast several of my friends who have miscarried at the same stage were overnighted in hospital, had D&C, offered counselling, certified off work etc. My DH, who is usually quite supportive, seemed to be influenced by GP's matter of fact, no big deal line to the extent that he didn't mention it once we got home, beyond expressing relief that we hadn't yet told anyone of the pregnancy (I always waited til magic 12 week mark) and so wouldn't have to upset them with news of the m/c. It was years before I told him how upset I was by that - and to his credit, he was devestated that I thought he'd been unsupportive, saying he assumed that was what I wanted as it seemed to be the line the GP(a woman) was endorsing, and he felt out of his depth etc. Neither of us got any leaflet, phone number or information of any kind. I strongly feel that fathers/friends/relatives need to have access to information, so that they know how to respond. When a friend miscarried a few weeks after one of mine, and was in hospital for 2 nights, getting tons of sympathy etc, I'll admit I was really hurt, thinking "Didn't mine count then?" - even though the only person who knew about mine was DH, so no one knew I needed support anyway! Perhaps women could be encouraged to tell friends when they miscarry, instead of keeping it a guilty secret like many do. My mum still doesn't know, and it's been more than 10 years since my first!

More info on what to expect emotionally / hormonally afterwards would have been nice. I was given a bereavement leaflet and gently advised to have a night out or do something that I couldn't do whilst pregnant (like have a drinky or two).

Although I recovered physically very quickly, my hormones raged for weeks afterwards and my personality and emotions were all over the shop.

I know the experience is different for every individual, but all the advice I got was looking out for physical side effects of the miscarriage and ERPC not the emotional.

I too had 3 early miscarriages between my 2 DDs. I was always quite open with friends and family about my pregnancies and have never understood why I was so often advised not to tell anyone until I was past the 3 months mark. Like miscarriage is something to be ashamed of and I have to protect everybody else's feelings if a pregnancy goes wrong! Conversely, when I had the miscarriages I gained comfort from the people around me (mostly) so I'm glad I let them know.

hi just wanted to say what i went through a couple of years ago i thought every thing was ok til my 1st scan then i found out everything had gone wrong i had lost my baby at 11 weeks i decided to have the op so came in to hospital on the following tues(i lost on the wed but unfortunatley they couldn't fit me in) i had the op then was given a huge dose of antibiotic on an empty tummy and sent home i was sick in car park went back to see if i had to retake but they said no and to go home i went back on the monday in pain and bleeding heavy i was admitted to gyny ward and put in a bed next to patients who were have optional abortions!! i was then seen by a consultant who kept refering my miscarridge as an abortion even though i had pointed out on many occasions that i found this phrase very upsetting i had repeat op and a camera so they could make sure everything was ok they found lots of puss the size of small orange behind my womb infection due to them not getting everything out 1st time more antibiotics home again in which time i burried my baby in memorial garden couple of days after went back stil dont feel right they could only see me in antenatal had scÁn still baby there this really upset me as we had already burried our baby. had one more op finally it was all ok but still get very upset when think about it i did get an appology but that means nothing thankfully i now have a very healthy little girl. i fully support the mums net movement and really hope you get some where with it so no more women have to suffer like i did

I m/c my first baby in Jan 08 after 2 years of trying, I was absolutely devastated and to be fair my GP was very supportive, I went straight to the EPAU myself as it all started over Christmas and I couldn't access my doctor. But my GP even called me to make an appt to see me after the ERPC and offered support. I "coped" to start with but have now been offered counselling as I am struggling emotionally. I definately agree with the siting of EPAU seperately from normal ante-natal clinics,in total I had 3 scans, the first two were handled sensitively but the third was appalling. The woman bullied me into the toilet, showed me the screen without asking if I wanted to see and handled the whole situation appalling. But when I went in for my ERPC on the day ward, the staff were fantastic, really supportive and understanding. I have since read on MN that some people were offered their baby to bury or attend a memorial service, unfortunately they dont' seem to offer that service at my hospital, it would have been nice to have the option. I agree with one comment too about someone professional talking to DP/DH to explain what we have gone/going through. Also understanding employers would be nice, mine were great but DH had to use annual leave for scans/ERPC.

Have just read the Code of Practice recommendations, I'm really pleased to see Antiphospholipid Syndrome included in it. I really believe that testing it routine in pregnancy (after all Sickle Cell and Thalassemia is) and after miscarriage for those that miss the opportunity could save the NHS a lot of money (and heartache) from the pregnancies it would save.

I would love to see something done, a campaign or something to get this happening.

I had three miscarriages.

The first was discovered at my 13 week scan where no heartbeat could be found. Was totally unprepared for this, more focused on potential birth defects. On the route out to a quiet room, I had to walk along an endless corridor of heavily pregnant mums-to-be, trying to hold myself together, blinded my tears. And then sent me home with a leaflet & a dead foetus inside for the Easter bank hol weekend until they could fit me in for a D&C after the holiday was over.

The second two I experienced on separate occasions at home without any real guidance of what to expect ("it varies" they said on the phone), not knowing what to look for or when it would stop, or whether I would bleed to death (was advised to go to A&E if it got "too heavy", but how do you know what that is?).

The ladies at the local hospital EPG were very sympathetic and helpful during my subsequent (successful) pregnancies, although they openly admit that you have to have more than three before anyone thinks you may have a real problem.

I would have liked more information on what to expect to experience during and after miscarriage(both emotional and physical), esp. to prepare myself for my body still acting pregnant even though I was not.

To help deal with my grief at the time, I also planted a lovely tree in my garden in memory of what could have been (this has been very therapeutic as I feel I created some life when there was none left in me).

On a happy note I now have two lovely little girls, which I never dreamt I would manage to carry successfully, so there is hope!

This has been posted on site stuff already but, thought it worth posting here too, just in case:

The Scottish Daily Record are keen to give some support to our campaign for A Miscarriage Standard Code of Practice. They need to speak to someone from Scotland who is willing to share their experience of miscarriage (we do understand if you would rather not). If you feel you might be able to help please contact Lisa Adams at [email protected]

Just wanted to say well done MUMSNET on getting the recommendations together. On a personal level, it feels empowering to be consulted and to know that my contribution may help others in that awful situation. At least some good may come out of our sad and otherwise helpless experiences of MC. Thanks for providing the forum for us to be represented and doing it so well.

I think it would really be something to be proud of if this code of practice was adopted. For me, particularly the first 3 points are so very important.

I had no idea what was happening to me when my miscarriage started and the communication between the GP's/hospital staff was not very good. No one explained anything to me and worse than that I felt that in hospital they were actually avoiding me as I was convincing myself that everything was going to be ok and no-one explained that it was pretty definite that I was in the process of miscarrying and what I should expect.

It took about 3 days before it was over and if only I could have had a scan as soon as I started bleeding I would not have lived with false hope for what felt like a long time and I think it would have helped me to come to terms with everything a lot quicker. So I think better access to scans is vital.

I also wholeheartedly agree with the point about keeping women who are going through a miscarriage separate from antenatal patients as I will never forget sitting in the waiting room for my scan, in a wheelchair, bleeding heavily and trying not to cry (and failing) with everyone staring at me and it must have been pretty horrific for those patients when I started to miscarry in the waiting room toilets .

I also agree that there needs to be some sort of follow up/counselling as it takes some getting over. Even writing this now (3 years on) I feel very emotional so it shows how deeply miscarriage affects us.

I think there should be some follow up emotional care and also advice as to what to expect during a miscarriage.
I had 3 miscarriages, at the EPU during the first the staff were so unfeeling as it is so common for women to have a single miscarriage, by the time of the 3rd one the same staff were giving me the care that I expected to have during the first one. Yes for them it is an everyday experience, but for us it is something overwhelming. I felt like I had missed out on some aspects of emotional care.
I did attend an independent support group, but found this quite maudlin as I am a person who likes to focus on actions and a way forward. I ended up researching as much as I could on the internet and seeing a private consultant to carry out tests after my second miscarriage.
Talking helped, but on a one to one basis rather than in a group setting.
I remember sitting waiting for my early scan at the epu, a year to the minute that my first miscarriage had been confirmed, in the same room. This time I had a happy outcome, but felt so upset for the women I saw walking past me, who I knew were being told the same news that I had been a year before.

I have had 3 miscarriages and on the whole my care was handled very sensitively - A & E staff very sympathetic and patient and I was admitted to a gynae ward not an antenatal unit - however all 3 MCs started on a Friday night and hence could not be confirmed by scan until EPU opened again on the following Monday. On 2 of the occasions the MCs had completed by this time and so I had to go through, was I now believe was labour (I am now proud mum), with very little pain relief. EPUs open 7 days would have spared me this.

Also, despite the kindness that all the staff showed me, my one overriding memory is of the arrogant and patronising A&E consultant who breeezed in and announced that he understood I was having a spontaneous abortion....and despite the obvious pain I was in was prepared to argue the semantics with me when I pointed out that what I was actually doing was having a miscarriage....he then, having witnessed a contraction, begrudgingly offered me morphine, however loudly requested that the lovely nurse looking after me stay in the cubicle whilst he administered it as it might cause a cardiac arrest ! I'm sure he could have exercised some judgement here, after all it wasn't the 1st time he had given a morphine injection - it did feel like point scoring because I had dared to point out that I really didn't care about his medical terminology (I may have used more colourful language at the time!).

I hope he was just having a very long Friday night in casualty, but had he shown a little thought to my situation he wouldn't have needlessly made a devastating situation considerably more traumatic.....I still seeth when I think about it.

I vividly remember crying in some poxy day room or similar, and a nurse coming in and finding me. Instead of any word of comfort, she bustled off and brought my notes in, now adorned with a special 'sticker' showing a big fat tear, and explained to me that any staff who saw it would know I was feeling 'sensitive'.

This, I feel, is not the way forward.

I had a miscarriage 3 weeks ago, and yesterday had a helpful text from my GP confimring my ante-natel appt with the midwife.
During a very traumatic MC in A&E not only was i todl how common it was, over and over, I lost so much blood I passed out and ended up in the recuss part with all the machines bleeping. No one explained what was happening or what the options where. They even refused to give me a doctors note to sign me off work! (until my husband got a bit angry . . )The use of language like "products" is particulary distressing and unhelpful - one of the doctors spoke to me in pure medical gargon which did'nt help. I said its not products its my baby.

Hello

I had a miscarriage just over a week ago and I whole heartedly support the mumsnet proposed code of practice. I was offered no support or helpline numbers from my hospital after being given the bad news and I felt like I was being processed.

I did email the hospital the next day to complain and the head nurse from that ward rang me back to apologise for how I'd been treated but I think this code of practice should definitely be given to all hospitals.

In the meantime, I would recommend complaining if you feel you haven't been treated well - it made me feel better to vent a little bit!!

Just a thought

ONE central contact number for any additional complications, to save having to keep telling your medical and personal story time and time and time again eg someone/something to contact if you have additional problems like suspected infection who knows what has happened / has access t this information - maybe an EPU? To oversee the care.

First, it is fantastic to have the ability to contribute to what is sadly a much needed Code. Thanks for starting this MN.

Second, for all those who have contributed to this discussion, so sorry for your losses.

I have had my first mc 2 weeks ago. The nurse at our EPU said to me "miscarriage is much underestimated and misunderstood". I think this summarises things very well. I was, on the whole treated pretty well but have been moved to tears by some horrific experiences of others on this thread. It is clear something needs to be done asap.

Apols for any repetition but here are my contributions:-

I agree re the provision of more info - especially around your body still (very cruelly) acting as if pg. This is something I was completely unprepared for. I am still testing BFP 2 weeks on, still nauseous, sore breasts and today have that tingling "milk coming in" feeling. Bloody awful and an added burden on top of the emotional rollercoaster.

Also agree re medical jargon. Ok so every profession has acronyms and jargon but other jobs are not dealing with such a sensitive subject. I was in the gynae ward yesterday hearing things like "have you booked in that evac for tomorrow". I think erpc is bad enough given what is stands for but an "evac" is so much worse and made me feel so sad for those involved plus made me mad at their flippant use of terminology around me and others. Maybe revert to D&C as has been suggested already?

The central holding of info is absolutely necessary. I had to ring around cancelling midwife appointments, hosp appointments etc.. dreading making the calls then ending up in tears both times. An unnecessary burden for those who have mc'd and easily fixed administratively I would have thought.

Re time off work. What helped me was the nurse in EPU stating that " Your body has undergone a trauma both physically and emotionally and this will take time to heal. It is not uncommon for ladies to take 4 - 6 weeks off. Just go to your gp for a note and take it day by day". To hear that really helped me. I also wonder whether employers' absence and compassionate leave policies should include miscarriage. After all, there is X amount of leave for bereavement of partner/child/parent etc. After all mc is the loss of a child/bereavement. I wonder whether this type of leave would help women to feel more of an acknowledgement for their loss? Sick leave can then be added on if necessary? I accept this can only really be relevant to larger employers but just a thought. Legally, an employer cannot (or at least should not) take this leave into account when looking at absence stats, reduction in performance etc or subject the woman to any detriment linked to her absence due to sex discrimination laws.

Support and counselling for the health professionals who have to support and help us when we have a MC, as I know it is probably a distressing part of the job - my last MW was so kind when she helped me deliver my little boy @ 18+5 (IUD) and I would think it must be quite tricky sometimes dealing with people who are so vulnerable.

i think this is a good and long await things to happen. i had a misscage 3 months ago and still have not heard from the doctor about what went wrong. i had to go thourgh labour and give birth to my dead baby on a labour ward, where all the other women was give birth to live baby. i feel so alone and just what to died with my baby. things need to change

I would welcome something being done about this. I have had two missed miscarriages and the first time I didn't know what was happening. I felt so alone. Just to have some literature on what to expect would be a great start. I kept on hearing from my midwife that miscarriage is really common, but for me these words were like a dagger through my heart. Every miscarriage is a very personal and individual experience, and to label it as common makes it seem like I should have just got on with it.
Employers could also do with having some guidance. My first boss was very sympathetic, but my second boss was very matter of fact and tried to reduce my bonus for the 7 days I had had off to have an ERPC and grieve. She felt that my miscarriage was a simple sickness and had no compassion for the fact that I was grieving. Miscarriage is a loss, and it is very frightening. The sooner that people come to realise this, the easier it will help women to cope with this very sad and overwhelming experience. xx

I've had 3 m/c's and have just found mumsnet after deciding to do some research before an appointment tomorrow.
It seems like everyone has had hugely different experiences and it makes me feel much better to hear other people's experiences - and I realise many people are in a much worse off position than me.
First twice I had m/c around 12 wks, this time after pushing for an early scan (and being told they didn't do 'reassurance' scans!!) I got a d&c at just over 10 wks after being scanned and having no heartbeat, size not matching dates and irregular sac shape.
I decided to go private as the waiting time at my local nhs was around a week for the d&c - I just felt I couldnt wait that long (after the longest 6 weeks of my life from my positive test result).
I know I'm lucky I could afford to go private (although I couldnt afford it again) but I just feel that nhs services for women experiencing miscarriage are so hit and miss. I live in Scotland, in the central belt, and dont know if anyone else has similar experiences in Scotland?
The code of practice is a fab start - the treatment I have received has been at times excellent and other times absolutely appaling. I dont feel it has been patient centred at all - it is a 'one size fits all' system and this is no good.
My most horrendous experience was my 2nd m/c when I was bleeding very heavily and went to my local hosp only to be sat outside the gyn ward (as they didnt have space for me) which was opposite the entrance to the maternity ward and I had to sit there watching women taking their babies home knowing I had lost mine.
I think it's a major priority that services for people experiencing miscarriage are separated from other services where at all possible. I also firmly believe it is not fair to make women wait a week and longer to have a surgical evac - it is totally inhumane.
It is so strange that miscarriage is such a taboo subject - my aim is to to talk openly about it to my friends and family in order to help people realise what a difficult thing it is to experience.
I'm also considering writing to my local msp to ask about waiting times and guidelines for treatment of recurrent miscarriage in my local nhs as I cant seem to find this info out.
I'm also trying to raise some cash for tommys (www.tommys.org) as they are doing lots of research into the causes of miscarriage. I really dont feel there are enough support organisations for women who've had m/c's.
I saw an earlier post saying the scottish daily record were looking for someone from scotland to share their story - dont know if this is still the case? I MIGHT be interested in this if so.
Sorry to go on, sure everyone probably feels as passionately about it as I do!

Update on this. We raised the MN Miscarriage code of practice with Gordon Brown when he came on Mumsnet and he put his Health man at no. 10 onto it.

We've just received the following correspondence from him:

"Hi Justine, hope you are well.

As you know Chief Nurse has been looking at all these ideas closely. Andy Burnham is keen to also understand the issues and as well as changes to the code of practice we want to look at some of the other ways in which handling of miscarriages could be made better.

Plan is now for Andy Burnham to chair a discussion on these issues alongside the Chief Nurse. They will definitley invite you and hopefully some others from mumsnet, and I hope a few others from across the field. I'm told feb, but I'll chase on a date."

So hopefully some progress - we'll keep you posted.

I'm glad to hear that it hasn't just disappeared from their radar. I'd be really interested in participating in a meeting with them if it happened