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...

[theUrbanNixie]

tbh i think one of the most upsetting things was that the dr talked about "remains" etc. also at scanning the sonographer turning to me and saying "Ooh, there's nothing there!" in (what seemed to me at the time) a jolly voice - one you'd use to a newly pg woman, not one who'd lost her baby. it was only after she realised i was crying that she turned on the sympathy.

afterwards i could rationalise what had happened by thinking of it as cells, tissue etc. but at the time all i could think was that i'd lost my baby.

[sfxmum]

I am very pro choice but would have been really upset if I was in a ward with people having terminations for reasons other than medical - sorry

I have had 4, my last was in December, when I got back to EPU to confirm 'it was all out' the stupid woman asked me how far along I was, honestly!

a lot of the practice I saw last year was very poor, yet most of it in 2001 was quite good, unfortunately luck of the draw

[lackaDAISYcal]

Good points jules. To the majority of women, as soon as they get that little line on the stick, it is most definately a baby. It doesn't matter when you lose it, or whether there was something wrong chromosonally (sp?) or even whether it was a chemical pregnancy; the sense of loss is still very acute.

It is also a good point about timings; I read someone on here saying they had contacted the EPU at around seven weeks and were told that was too early to use their services . What exactly are they there for then?

[jingleyjen]

I think that communication should be more sensitive on lots of levels, my close friend has just had a miscarriage, she recieved her letter for her 12 week scan and when she called to cancel the no longer needed appointment the lady said that she wouldn't cancel the appointment as "you never know it might not be over" my friend explained that it clearly was and the GP was in agreement and the lady was prepared to argue the toss about it. not the conversation you need when you have just lost a much wanted baby.

[Blandmum]

I was told that I couldn't have a scan at 12 weeks because they 'couldn't pick up a heart beat' at that point.

Bullshit! So they left me to bleed all through christmas and the new year

[marina]

Awareness training for health professionals so that women who miscarry between 13 and 22 weeks (2nd trimester pregnancy loss) are not exposed to terminology such as "products of miscarriage" or "spontaneous abortion" to describe the delivery of their baby. The hospital staff were brilliant in this case because they had an in-house bereavement midwife who had done awareness training with them, using the SANDS Guidelines for Health Professionals.
This was one of my GPs
I think a specific section on second-trimester pregnancy loss in the pamphlet might be a good idea carrie.
As well as the helpful referral to SANDS, I did also get a ludicrous leaflet from the Miscarriage Association which said something along the lines of "after 13 weeks you may be aware of delivering the baby or placenta". That was the only reference to mid-term pregnancy loss on it, I think
In general I think women should not have their noses rubbed in the "three strikes before we'll even think of referring you to a Recurrent Miscarriage Unit" rule. That can be communicated very callously in some situations.

[Blandmum]

Jingly, I started to lose my first the day of my booking in appointment. My GP baldly told me, 'There is no point in filling in the forms as you may well lose the pregnancy'

(in the interest of balance my GPs since this date have been fine, this this was a very callous man who did me no good at all!

[michie40]

Please can we not have d & c in the same ward as people having abortions - I dont know why the people in the waiting room for my d&c were having abortions but it was a bit distressing when you desperatley want the baby youve lost and people appear (because i dont know their history) to be having healthy babies aborted.

[SquonkTheBeerGuru]

definitely more info about what to expect.

I have just read marina's post and only now realised that my much-wanted baby must have been second trimester.

I didn't know that.

[Blandmum]

mariana, the hospital staff were very kind with me as well. But my initial medical care was awful

and all of this was over 13 years ago, and it still makes me and

and even angrier to see that nothing seems to have got any better

[milfAKAmonkeymonkeymoomoo]

Better training for all HCP involved in dealing with women who are miscarrying, I found the lack of knowledge of some key individuals at best worrying and at worst disgraceful

Most doctors I came across in EPU were junior doctors who seemed to have no idea about miscarriages, one told me that she wouldn't be able to answer any questions as she didn't know much about this area

MakaMMM (2Mcs)

[winebeforepearls]

I haven't read the whole thread, but the absolute worst moment for me with both my mcs was, having had the EPU scan, to sit in a waiting room with happy and healthy pregnant women and wait for a spare 'slot' for a second scan to confirm the mc (had to wait 2 hrs first time, an hour the second).

Why can't suspected mcs just be whisked to front of queue? I'm sure the other women wouldn't begrudge the extra wait.

[marina]

A mediocre and overworked GP can be one of the very worst people to see MB
One of them made me sign in weekly for a sick certificate in the period between sending Tom for his PM and being able to hold his funeral.
By chance I saw a different doctor on the last occasion and she was appalled at this.

[berolina]

Some time ago when some of us were talking about this I wrote a couple of paragraphs on this. I'll just C&P it in. It's probably said what a lot of you have already:

--

Pregnancy loss is always painful and can be devastating. The loss of a baby, at whatever stage in the pregnancy, represents the death of the expectant mother?s hopes and dreams of her child, herself as a mother, and her family. It is for this reason that direct confrontation with women enjoying successful pregnancies is particularly traumatic for the sufferer of pregnancy loss. She finds herself facing a mirror image of herself, having the experiences she should, could have been enjoying. The bitter irony is particularly acute in the context of medical settings and procedures relating to pregnancy. A scan in a healthy pregnancy is a joyous occasion, a chance to ?get to know? the unborn child ? a scan revealing a dead baby can seem to make a mockery of this, just as the physical pain involved in miscarriage or stillbirth can cruelly imitate the experience of a healthy labour.
The potential, then, for emotional devastation arising from treating sufferers of pregnancy loss in antenatal and labour settings, thus exposing them to potentially long waits in the company of happily pregnant or labouring women, is immense. We believe that it should be a standard of care for pregnancy loss that sufferers are separated, either through the physical arrangement of facilities or through management of appointments, from women undergoing routine ante- and perinatal care. Waiting times, in confirmed as well as threatened pregnancy loss but particularly with regard to surgical procedures such as ERPC, should be kept to a minimum and not be spent in ante-natal or labour-ward settings.

--

I've had 3 mcs, all in Germany where treatment and care has for the most part been impeccable - so much so that after no. 3 I wrote an email of praise to the hospital concerned. I am reglatly appalled when reading some MNers' experiences on here.

I would be very glad to help put together any booklet.

[marina]

That's a really valid point starlight. Appropriate, responsive treatment, taking its cue from the patient's own needs, is what the NHS should be providing.
Women do deal with pregnancy loss in different ways and this should be acknowledged.

[berolina]

regularly

[lackaDAISYcal]

martianbishop.

jingleyjen what happened to your friend highlights the need for all women m/cing to be scanned really and for there to be a common set of guidlines as to procedure following a m/c

My dating scan was booked for the day after I saw the EPU. They held onto my notes and said they would do all the necessary telephone calls etc. I even had a call from the CMW to say how sorry she was and could she help at all. I was pretty shocked to find out on here that that is the exception rather than the norm

[Lcy]

EPU medical staff to be trained in basic counseling skills (including grief).

EPU staff to have training in the psychological effects of miscarriage.

EPU staff to have access to supervision so they are psychologically able to deal with working in such an emotive field.

EPU staff to have an up to date understanding of miscarriage research.

When in hospital mcing or for ERPC to discuss with the mother (and partner) about what they wish to happen to the remains of the foetus.

When i had a mc at 11 weeks and then a threatened mc 3 months later the EPU was accessible and had all the latest equipment. However, the way i was treated by the medical staff was appalling. For example, when i arrived at EPU bleeding the doctor told me that i should stop being anxious because it would expel the baby from the womb. He then refused to scan me despite it being hospital policy to scan a bleeding pregnant women (after complaining i was scanned the next day and found i had miscarried). I was then left in a room by myself for over an hour after being told i had mc'd - even though they were not busy. The list could go on and on - but general lack of empathy by all i encountered. I would def avoid EPU in the future and would prefer to have private scans and miscarry at home.

[bitofadramaqueen]

From my own experiences I would have liked:

• the EPU to be well away from the rest of the maternity services (at Edinburgh its a very long walk through all sorts of baby related areas to get to the EPU)
• to have been given information on support available
• a follow up appointment to discuss any questions. Its really hard to take anything in when you've just found out you've lost your baby
• had follow up treatment at the EPU (I had to go and see a nurse at my GPs practice about resulting infection; involved having to explain everything again, get conflicting information on my treatment and have some very insulting comments about getting upset recorded on my notes)
• the hospital to have actually notified my gp and the midwifery team that I had miscarried - then I wouldn't have been asked how the pregnancy was going when I saw my gp nor would I have had letters and phonecalls asking why I'd missed my booking-in scan

With regards to pregnancy after mc:

• everyone should be offered early reassurance scans
• monitoring of HCG levels (I tested positive at 4 weeks so my gp did a weekly blood test to check that my HCG levels were increasing at the right rate until I could have an early scan)
• get results from HCG levels quickly and not have to wait a week for them
• be offered both a 12 week scan and a 20 week scan (but that's for everyone else too!)
• Not be made to keep information about previous early mc in your pregnancy notes unless its really relevant to your current pregnancy. I was given notes about previous mc at my 28 week check up to add to my notes (they had only just been forwarded by the hospital, and I was told I had to keep them with my notes because its standard procedure.

Can I also say that this kind of campaign is great, but Alan Johhnson can only influence policy in England and Wales. MC standards should be UK wide, which in Scotland means lobbying Nicola Sturgeon too. Sorry, not sure of situation in NI.

Sorry this is so long!

[milfAKAmonkeymonkeymoomoo]

Yes I had that Starlight

[stuffitllama]

Well done for starting this thread. (3 mcs)

I am with you 100pc. Many, many doctors, nurses and midwives have seen many women suffer miscarriages and go on to have successful pregnancies and for this reason I think can be very dismissive. But for every woman it is a heartbreak, and a tragedy for those who have been trying to get pregnant for some time. There is no interest and little aftercare, and sometimes very little sympathy.

Show me where to sign.

[stuffitllama]

And husbands too. I agree.