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...

Although my treatment when I miscarried wasn't awful....it could have been better.

I had a missed miscarriage which we found out at our dating scan (12 weeks). I was scanned, they couldn't find anything so sent me to the loo so I could have an internal scan. Whilst out of the room my hubby asked what they thought was happening and the radiographer said "well she's obviousley lost it" (luckly he kept this to him self and she broke it a bit better to me)

We then had to wait in the waiting room (in floods of tears) whilst a nurse reasurringly told us "its not the end of the world"

The rest of the treatment was fine, I was placed in a private room in the ward whilst having the medication and everybody was very sensitive.

All in all I do think standadised guidlines are needed, and just some bloody common sense from the staff....yeah they've seen it loads of times but to most of us this is our baby that has died.

(On a happy note we now have a little boy and he's wonderful)

This si difficult there are so many conflicting views eg some want one thing some the exact opposite, some have given good reasons why something is not a good idea but they are ignored because it doesn't suit (eg open access then being used to get early scans by some hence still no scans for those that need them) some have said do this it costs nothingwithout any rhyme nor reason why they think it costs nothing (and are obviously very susceptible to being proved wrong). Also second/third trimester mc probably have very different 'needs' medically from first.
Without wanting to belittle any of the terrible experiences on here personally I'm more in favour of the one woman one midwife campaign and wonder why mn don't throw their weight behind that (would probably save more lives providing mw were up to scratch.)

I've had two mc. First was natural and I didn't seek medical attention as was in the U.S.A on holiday. Phoned the GP on return and when she eventually phoned me back was absolutely appalled by her blunt unsympathetic manner. "You do know you've lost it don't you" Yes thank you . I'd booked an appt already and she said no you don't need to keep it there'll be no follow up. I shudder every time I think of that phone call. 2nd time it was a mmc at 11+wks. I had a fresh blood bleed at work and when eventually the GP (nicer one this time!) got in touch I couldn't get a scan until 2 days later. He hadn't told me about the EPU service despite me telling him about how hyper anxious I was at a previous appointment and had said he'd request an earlier scan in referral letter - my booking scan at 14+wks was on through my door the day I bled . To be honest the EPU were fabulous once I got there, the staff were all lovely and really sensitive. Coming out of the hospital seeing all the heavily pregnant women puffing away on cigarettes was hard though. I really didn't want to see pg people at all.

My main bug bear was the treatment at day surgery for the ERPC. It was awful and as a nurse it made me so sad that fellow professionals could be so dismissive of someones obvious distress. Stuck in with a gynae list (last on list), sat there for 6hrs crying with no privacy/no DH for company, a nurse saying patronisingly "aw, are you still upset?" , them pulling the curtains back constantly so they could watch me - WTF!!! and a Dr who looked about 18 blithly talking about products and perforating uterus' At least the anaethetist cheered me up when he asked if I had any other children and I said yes an 8 yr old he said in a shocked voice "have you been trying for 8yrs???" It's funny what makes you giggle in the circumstances I think the 6hr wait had made me slightly hysterical!

So I agree with previous posts, mc being recognised as a traumatic event, bereavement and generally lonely awful experience would cost bugger all.

When I started training as a nurse in 1979, women who had were 12 weeks gestation or less were seen in a gyn ward if there were signs of miscarriage.

Women found this really unacceptable as there was no recognition that this was pregnancy.

Women are now seen in EPU which is situated in a maternity unit.

It is very hard to meet every women's needs but what is the consemsus.

Gyn ward or EPU?

GYN ward.

I had a miscarriage at 11 weeks, 11 years ago. It was all so horrible it is a bit of a blur.

But I do remember waiting hours for a scan among lots of happy, healthy pregnant women.

And an absolute bitch of a sonographer who said in a bored tone: "There's nothing there. Sometimes babies don't develop."

Then, being left to cry surrounded by pregnant women.

They were going to send me home because "everything would come away naturally", but a lovely, lovely consultant said it was cruel to leave people to bleed for up to a month and insisted on a D and C the same day.

I thought I had just been unlucky in my hospital, but reading this thread has made me realise it is far too common.

It is not much to ask to be treated with a degree of sensitivity.

I'd like to add my support to this. All been said already, but from personal experience:

• EPUs away from antenatal ward
• staff given training in basic counselling skills ('So, all happy are we?' and 'Cave women had these all the time and just got on with it,' stick in my mind as two examples of the 'how not to' approach
• scanning equipment to be available at weekends and bank hols. (I can't be the only woman to m/c exclusively at these times, surely!)
• a more flexible application of the 'three strikes and you're tested rule'. My family history & personal medical history indicated a blood-clotting problem but was told by GP, 'That's interesting; come back and tell me again if you have a third.' I did have a third and - guess what? - I have a blood clotting problem! I can't tell you what it felt like to try to get pregnant, simply to notch up that all-important third miscarriage. Didn't help with the grieving either.

I haven't read the other replies.

I have an autoimmune disease, it affects 1 in 500 people but counts for 1 in 10 miscarriages and pregnancy losses. To test for it is really easy and could save more miscarriages until the obligatory 3. I'm "fortunate" that having my daughter born alive at 20 weeks they didn't wait for another baby to be lost (which would have been Tink) because they knew something was wrong with me.

Doctors and midwives need better training in how to deal with bereaved parents. I had my daughter constantly refered to as a miscarriage when I have a birth and death certificate for her. They changed my para to show she was a miscarriage. I had a doctor say "oh but you were only 20 weeks" when her boss was trying to take history when I was in labour with Tink. Portable U/S scanners in triage.

Some positives from my local hospital. Bereavement suite, away from the main maternity wards for mothers who have lost their baby. They allowed me to have as many people as came in the room, must have done half a loaf of toast a time for everyone, plus 3 or 4 teapots. They allowed me to have a second bed in the room for someone else to stay in. They let me stay as long as I felt I needed to. They had MWs dedicated to those rooms and they would just sit on your bed and chat if it's what you wanted. Positive about the registry office - seperate waiting room for people registering the birth or death of a lost baby.

NotSoNewAnymore, some hospitals do cancel your appointments for you. I was supposed to have my 20 week scan the day after Lily-Hope was born!

The words "Product of Conception" should NEVER EVER EVER be used to parents, even if it isn't just refering to the baby. It's highly offensive, upsetting, disrespectful, insensitive...

Mrs Wednesday has a valid point it is horrid having to repeat yourself over and over again as to what is happening. It starts with receptionist at A&E, triage nurse, doctor in A&E, nurse admitting you to ward, doctor on ward and any number of other health care professionals as they change shifts.

Also take note of any red wrist bands do not keep offering me paracetamol assuming I am in pain when the band on my wrist clearly states I have an allergy.

Tell me what is happening don't leave me sitting round for hours before you tell me you are admitting me and keeping me in overnight. I need to be able to make any necessary arrangements for clothing etc.

Apologies if I repeat anything here that others have already said, but these would be my thoughts after suffering 2 missed m/cs and having 2 D&Cs:

1. I hate the term ERPC, which is why I use D&C, please can it be changed to something less callous and unfeeling.

1. Pregnant women should be kept separate from women m/c or having any gynae exam, as many of those in for gynae tests could be upset by the site of happy bumps as their tests could be to do with problems conceiving.

1. The consent form I had to sign for both of my D&Cs was a standard form for all ops and had the questions, "Is there any chance you could be pg" . This was devastating and upsetting. In this day and age of word processing it would not be hard to reword the form for those women in for D&Cs so the word 'pg' is not mentioned.

1. Training for GPs - when I approached my then GP for support with this pg (my 3rd) because I was so traumatised by my m/cs she told me there was nothing they could do to prevent me losing this one too and I should go away and prepare for the worst, that way if the baby survived it would be a blessing. The pain and distress she caused me is incalculable.

Good luck with the campaign.

Mears - EPU - if it is situated away from maternity (like it is at Nottingham)

Haven't read all the posts so may be repeating points,sorry if so. I lost twins in January, The EPU were great as was my GP.

The day before I was due for a D&C I started to bleed very heavily and was admitted to A&E. I was sent for a scan to see whether D&C was still necessary. By this stage I had been in hospital over night and had to be wheeled down to the scan dept in a wheelchair with a saline drip attached (no fluids in case i needed surgery). The scan dept left me in the wheelchair, in the corridor, for half an hour. During this time I had to listen to the results of other people's successful scans being discussed on the corridor. I can't believe that it is necessary to either leave a tired, weak, miscarrying woman on a corridor or to discuss what are surely confidential results in such a public place

When i went back for a second scan two weeks later the sonographer told me i could 'get on with my life now'

Surely there must be some sort of code of practise for sonograpy depts?

My two stillbirths were delivered in a 'normal' delivery room, on the antenatal ward, so i was surrounded by women giving birth to live babies. Nightmare. A room on another ward would have been more dignified.

Great that you're doign this lobbying - hope some positive action comes out of it. Well done.

I've had one M/C and agree with much of what has been said. In particular:

1. Training for professionals on not only being sensitive but also giving clear information. In my case, because the nurse focussed so much on telling me about all the follow up tests, I didn;t understand that I'd definitely lost the baby, gave me false hope over a number of days.
2. Being able to self-refer to EPAU's and access to them at evenings and weekends.
3. Excellent idea to have info leaflet with information on exactly what to expect when miscarrying at different stages, what your rights are to medical treatment and supportive advice by mums for mums.

Good luck! x

Just want to register my support for thsi action.

I was given (mostly) excellent treatment by St John's in Livingston but was quite traumatised by the scan/ward/etc as detailed above.

The training for ward staff would be crucial, as I did have one or two midwives who were obviously more interested in the 'baby care' (bunny badges, etc) and were quite brusque.

Husband was farm more upset though by set-up and also the allocation of a pregnant MW to break the news/advise. I know that it seems petty, but it was difficult to watch her subconsciously rub her bump whilst she explained the options for dealing with my lost baby (missed mc).

Sonographer was excellent.

Just repeating what others have said really. I MC at 6 weeks last year.

EPU to be situated away from maternity unit. To be open 7 days a week.

Early reassurance scan for following pregnancy. I paid for a private one at 9 weeks this time as I was having a panic and wanted to know baby was doing ok.

Just adding my support really.

And from personal experience GPs should have enough training to understand that telling women who have had a chemical pregnancy
"don't worry it wasn't really a miscarriage, you were just not really pregnant after all"

is not as reassuring as they seem to think. Especially when they are aware the patient has been ttcing for a long time. I was not upset by the idea of an m/c, but because I had believed I was pregnant and finally had a chance to have a much longed for baby, and then that hope was lost. It was also the worst physical pain I had ever experienced in my life and I felt that was not taken seriously.

Would like to add my support.

Very much agree with those who have said that ERPC is an awful phrase.

Also wanted to reiterate the point several people have made about keeping women having m/c separate from those having abortions. My d & c took place in a long queue of women, most of whom, I now realise, were having abortions. A student nurse came in before the operation and asked if I would mind her observing the procedure; I agreed. When I was recovering in the ward, she came to ask me why it was I had decided to terminate the pg
I found this very upsetting.
It really horrified me to think that no one in the operating room had mentioned to this nurse that it was a m/c of a much-wanted baby rather than a termination of an unwanted one. Obviously, to doctors it may be the same routine procedure. But to the patient undergoing it, it is completely different.

I've had three miscarriages, one at 13 weeks, a missed miscarriage picked up on a scan at 12 weeks and an early one.
First miscarriage was diagnosed after an ambulance to A&E at 2 a.m. on Tuesday morning with cramping and heavy bleeding.
Junior doctors on A&E were lovely but I was in hospital for TWO DAYS waiting for a scan to confirm I had miscarried (presumably occupying a bed on the gynae ward that could have been used by someone who actually needed it).
Eventually I was wheeled to the ultrasound clinic and dumped there, where I sat sobbing and clutching my notes among all the happy pregnant ladies. One couple got up and moved away, another woman started shouting at me about God.
After about three hours one of the receptionists asked me grumpily what I was there for and did I have an appointment
because the clinic was closing.
After the scan I was sent for an EPRC and then home. I was told follow-up notes would be sent my GP but she never got them.
Back in the same hospital a year later, and after repeating my case history to about 25 people (what is the point of medical notes if no-one reads them?) I was scheduled for another EPRC (cruel term) for my missed abortion (even worse).
They got the day wrong, so I turned up and had to go home again, all the time worried that I would miscarry spontaneously and have to endure the bleeding and cramping again.
Nine months after that, and having being discharged from the recurrent miscarriage unit and EPU, I went for my 34-week
appointment with DD1, at which the (junior) obstetrician asked if it was my first pregnancy.
No, I said, I've had three miscarriages, it's in my notes. Yes, he said cheerily, but this is your first PROPER pregnancy
isn't it? I doubt he'll be quite so insensitive again, after the mouthful I gave him

after the first one I also got a call from the antenatal department berating me for not attending my 20 week scan

Colombos for you, hopefully that is one student nurse who learnt about compassion that day and is a better nurse now because of you.

Threatened abortion!

I went to the gp after my m/c and that was on the screen from my last appointmemt - I'd gone straight to the GP when I saw blood.

I just wanted to add my experience as I found the treatment I got at the Royal Surrey County Hospital in Guildford to be fantastic and helped make an horrific experience almost bearable:

I found out my baby had died when I was 19 weeks pg. The baby had died 3-4 weeks earlier. The midwife who saw me at my local surgery that evening was amazing and got me an appointment at the hospital the next day.

When I got to the hospital's ante-natal department, I was met by a trained specialist midwife and got taken to a private room with comfy sofa, tissues, cups of tea. This meant that although I was still in the ante-natal area, I didn't see any pregnant ladies.

Everything was explained to me in detail, she was able to answer all my questions even all the ones I didn't want to ask but had to like what will my baby look like. She was just lovely.

The hospital chaplain (who was an ex-midwife) came to see us - we were obviously asked if we'd like this - and again, she was extremely comforting.

I was given a tablet to induce labour and was sent home ... I'd already started cramping. That evening the contractions got stronger and I started bleeding. We phoned the delivery suite and they were fully briefed and were expecting us so, most importantly, I didn't have to explain everything again.

Again I was met at the door and taken straight into a special room dedicated for this (the "Alice" room). This room had 2 sets of doors so no one would accidentally come in and signs all over it that no one should enter without prior authorisation. The room was pleasant, own tea/coffee etc. Basically there was no need to leave the room.

There was a dedicated midwife, I was offered whatever pain relief I wanted (in the end I was given temazepan ... took the edge off without being an actual "labour" drug), the baby was taken away and then brought back and we were left alone. If we'd wanted to take photos, we were given stickers to put on the film which if we took into our local Boots, they would recognise and treat accordingly. In the room there were remembrance books to write in. Some people had come back and written an update when they had gone on to have a baby - that was particularly nice.

The next day, the Chaplain came again and blessed the little one. The funeral was co-ordinated by the hospital ... the Chaplain conducted the little ceremony at our local crematorium.

My original midwife came to visit me at home. I also had a follow up call from the bereavement people from the hospital.

We had a late miscarriage but not a stillbirth and at no point were we made to feel like we were making too much of a fuss. Every little detail had been thought of. That said:

There was only one "Alice" room - I don't know what would've happened if there had been more than one of us that night. And I am pretty sure that if I'd been less than 14 weeks pg, I'd have been in the gynae ward which would've been a totally different experience altogether.

Sorry this was so long. I think it's a great campaign. At no point should miscarrying women be on teh same ward with people having abortions (I too am pro-choice) or labouring women.

And can i also quickly (I promise) add that I had after this miscarriage, I was given lots of blood tests to try to find the reason (I think because it was a late m/c). And in my next pregnancy, I was given an early scan and then scanned every 4 weeks until at around 31 weeks I finally accepted everything was ok. My midwife also always said that if ever I felt jittery, just to call and I'd be able to see her so she could listen to the heartbeat.

I think what was great was that they never made me feel like I was being silly/neurotic.