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...

I wholeheartedly agree with just simply making sure the staff are properly trained and briefed on how to deal with grieving, scared anxious women.

one of my sonographers told me 'I am having a bad day' really? mine is going great just losing my baby

on the same day I witnessed her leaving the door open so all the waiting couples / women could see the very distressed woman inside

but also when I went in for a D&C having lost at 12wks the ward sister gave me a hug sat with me and dh and talked to us for some very reassuring 10mins

Sorry - haven't read the whole thread. However - when calling for reassurance scans for everyone etc then I think we have to put this in the context of a wider NHS. If funding is to be put into these sorts of scans (which in most cases will be of limited medical use - although I recognise the psychologically they can be important) then funding has to come from elsewhere. So - which other medical treatment/service should we stop to fund this?

If you read the thread you will see that people are being treated so badly during the MC that it is almsot setting up the need for the scan.

leaving people to bleed, unsupported and unscanned for weeks in some cases, is making this worse than it needs to be.

If the first MC was treated better, we wouldn't need so much support the next time.

Read Epats post, she is very clear on this. Better care will save money long term

So sorry to hear all these sad and appalling stories.
I agree that staff desperately need better education and support for themselves on this subject.

My GP receptionist was very reluctant to put me through to the doctor at 4.50 pm on a Friday although I explained that I was bleeding. However, my GP was lovely when she called me back and very gently pointed out that it could go either way. I was supposed to wait over the weekend for a scan but began to seriously miscarry. The emergency GP was rude and dismissive. At A+E I was left with a junior doctor who was plainly out of her depth and terrified - I ended up trying to reassure her! Then saw a totally indifferent sonographer.

I eventually saw an unbelievably macho obstetric registrar who said, "Has it come out yet? What, you didn't think to look down?". He then bullied me into having an ERPC. When I said that I was frightened of having an anaesthetic he laughed in my face and said: "It's the gold standard of termination treatment". All the more galling when I had a severe allergic reaction to the anaesthetic and had to spend the next seven days on a gynae ward, listening to stroppy teenagers talking about their past terminations, then the next six months in bed with toxic hepatitis. No emotional aftercare offered at all, the best that could be said was that, as I was so ill anyway, I had months to cry and read as much as I could to try to understand what might have happened. I found Professor Lesley Regan's book useful and www.babyloss.com really helped me to get through too.

I could go on for hours about dismissive staff, lost notes and filthy wards... Thank God I didn't have to go back to the same hospital for my next pregnancy.

I think it is useful to know that it is common but perhaps the best way of conveying that to someone is to point out that it's not their fault - I have found that a surprising number of women do think that or, horribly, other people sometimes imply it.

Sorry, a bit rambling but I think this campaign is a great idea.

I had a scan at 13 1/2 weeks and was told my baby probably had a chromosomal problem that would mean it wouldn't survive past 20 wks. was shocked that I then had to wait 8 days to have CVS. then because i had it on friday had to wait all weekend for the results. shocking.

also, was sent home after delivering baby and saw and heard from nobody again for 6 weeks, when i had the briefest of chats with the consultant. was given no information about support groups etc. thank god for MN.

My experience of the EPAU at my hospital was generally quite positive (given the circumstances) complared to some of this horrendous stories. The EPAU is in a different building to the maternity wing, and is devoid of baby pictures etc. In my pregnancy following 2nd MC after a bleed I was (eventually) referred for a scan and the EPAU nurse was lovely. She saw how anxious I was and said - let's sort out the paperwork later and get you scanned first - I can see what a state you are in.....BUT getting there was the hard bit...

1st MC started in middle of night and was agony, NHS direct advice - sounds like you are miscarrying - you may as well take some Ibroprofen, there's nothing we can do. (great bedside manner)

Second MC occurred on a day when GP surgery was closed, I had to go through two 45 minute conversations with NHS direct to get referred to walk-in centre and then sat for 5 hours before seeing a GP, only to be examined (externally) for about 30 seconds and referred for a scan at EPAU 5 days later. By which time I knew the MC was complete. I know the outcome would have been the same, but those 5 days were awful.

This pregnancy, there has been no 'special' treatment provided eg no early scan (was told 'no chance' despite how anxious I was and actual normal 12 week scan was at 14+4 weeks as they were busy?. A bit more support/counselling/acknowledgement even from the communtiy midwife would have been appreciated but I just feel that I have been thrown into a bog standard system and my circumstances are/were irrelevant.

sorry for not reading whole thread - hangs head in shame The way that people have been treated is appalling - has anyone complained officially to the hospital? If so - whatwas the outcome? My "treatment" for both my mcs was fine - I stayed at home for both - but EPAU were at end of phone and when I wanted a scan during 2nd I got one no problem. I think that a ot of people do see shame in mcing - no-one apart from my dp and direct boss know about my second.

chunglimum that registrar sounds awful

Nervousal - yes, I complained formally (and they even messed that up), and got a not terribly nice or helpful letter back. However, when pg for the 4th time, I did notice that they had changed one of the things that they said they would, in that a couple who had obv had bad news in ANC, were fetched quickly from a room next to the scan one by a member of staff from EPAU, rather than being left to wander through the hospital to there, announce themselves over the intercom, explain themselves to the staff etc.

I haven't read all of the thread but could I suggest the following please:

Scans to be done away from happy, smiling and obviously pregnant women.

Nurses to be told not to say you are young you have plenty of time yet, however well intentioned

and for health care professionals to realise that it wasn't a foetus, ball of cells or any other discription offered but a baby we very much wanted.

Oooh - I have another point to add!

When women have to have a ERPC, can the anaesthetist please not be heavily pregnant? I appreciate that these people are perfectly entitled to be pregnant - but when there's a whole hospital full of people who need their services, can they please be kept away from women who have lost their babies?

Just to have had someone say' I'm sorry' would have ben a reasonable start. My GP broke the news to me as follows

'There is no point in doing your booking in appointment (I was 12 weeks) as you may lose it'

I remember every word, 13 years later.

He was the GP who left me to bleed over christmas and the new year as 'a scan at this stage will not pick up a heartbeat'....a lie.

In short he almost single handedly set up the need for an early scan

I can only say I have had very poor treatment on the nhs

having to wait 10 days for an epu appt when bleeding heavily during my 2mc and then when I cancelled that as I had gone privately being quizzed in great detail about the cancellation

being told there there never mind you'll have another one as I came round from the d&c sobbing following my 3rd mc

being put on a ward with lots of old ladies for my first d&c my mum came with me and was disgusted she said you shouldn't be here

my experience is that staff need to be taught to be more sensitive both in the locations of where they put mc women and what they say to them it doesn't take much to tip you over the edge in these situations

I can only echo what creamola says about ivf too ds2 was ivf after 3 mcs and 4 attempts the midwives thought this was interesting rather than something that meant I was probably a bit anxious

My first miscarriage started at a weekend, I was sent to A&E who were next to useless. They booked me a scan with epau for the monday. They saw nothing on scan but as my hormone levels were high I had to wait a couple of days, go back in and be scanned again. At this point they decided an erpc and laproscopy was best for me as my hormone levels were still rising. It took 5 attempts to get a canular in for the drips, in the end I was sent down to theater with out one in, On the way to theater there was a small baby being transfered to scbu I burst into tears and was told by the young girl who was accompanying me that it was daft to get upset as I could always have another one. I had to be given Gas to knock me out to get the canular in. I was discharged from hospital into a friends care and then had to go home to look after my daughter and my husband who both had chicken pox. I could hardly walk but was still released from hospital with no advice on wether it was safe for me to drive, go shopping on my own etc which I had to do within hours of getting home.

When I asked for a ref feral to EPAU when I found out I was pregnant for a 4th time with what would of been our third child I was refused as I had a sucsseful pregnancy in between.

Second time round I went in to A&E was refered up to GYN where a doc did an internal, couldn't see any blood and decided cervix was closed, she booked me a scan for 2 days later and sent me home with a look of disbelief on her face. Next day I was back in A&E, again I was speculumed, admitted and monitored. After a few hours it all calmed down and they sent me home. Within 2 hrs I was back at A&E reffered back to gyn where they kept me in. I lost the baby a few hours later. I actualy saw it because I was told that to monitor my blood loss I had to urinate into bed pans. The auxilaries and the nurses were great and sat with me holding my hand for quite a while. They scanned me the next morning and agreed that it was complete no further medical intervention required. They sent a young male dr in to tlk to me before discharging me. I do not want to hear about it not being a reflection on my fertility, nor do I want to be told it is quite common, I am aware that 1 in 3 ends in miscarriage.

What I do want to know is did the chicken pox had anything to do with it. My first miscarriage coincided with my daughter getting chicken pox, this most recent one with my son getting chicken pox. So far they are all telling me that as I had chicken pox when I was young I am imune and as my temp/bp etc were all normal it couldn't of had anything to do with it. I am so angry hurt and upset but cannot cry.

This is from the point of view of having had a major bleed that turned out NOT to be a mc. I strongly suspect that I may have lost an undeveloped twin, but I will never know.

• more openness about the fact that it is possible to have quite a major bleed and not go on to MC.

• definitely training for A&E staff - i.e. telling someone they are "almost certainly losing the baby and we might do a D&C in the morning" and then disappearing without trace and leaving them alone on a trolley all night is NOT acceptable. And the patient also probably does not want to hear from the nurse about what a terrible day they've had because it's been "a bit busy".

• when you transfer the person to a ward, to "wait and see what happens" it might be nice to mention to the nurse in charge of the ward what is going on, so that she has some clue why the patient is in floods of tears and strangely unable to express herself.

• if it is essential for the patient to use the same scanning suite as all the happy pregnant ladies, at least don't leave her waiting in a corridor for half an hour so she can watch them.

I am extraordinarily thankful that things worked out OK, but still feel angry when I think about the day I spent in hospital. There was no compassion or understanding whatsoever until they eventually got round to telling my community MW, who was a complete star and held my hand while I sobbed all over her . It was an emotional rollercoaster that I never want to ride again. My heart goes out to those who have similar treatment - or worse - and not had the good result that I did.

So called 'reassurance' scans for bleeding women may well save the NHS money in the long term having averted more psychological trauma.

A lot of money is spent in the NHS on psychological services, not all of it cost effective. It's really time that just because pregnancy, MC and even childbirth is not a pathological process (well MC is, isn;t it?) that women aren't just expected to put up with the pain - unbelieveable pain both physically and psychologcallly - justr becasue it's deemed 'natural'. Dying is natural but you don't get such insensitivity in hospices do you?

I haven't had time to read the whole thread so sorry if I am repeating things.

After suffering 3 miscarriages my opinion is

1. Don't advise women to go to A & E. The doctors there are too busy to care and generally unsympathetic - and they always say you need a scan, after you have sat in a waiting room full of weirdos for 3 hours.

1. Make sure that facts are checked. I was telephoned at home after my 2nd MC to be told that I was still PG, followed by a call 5 mins later to be told that I was phoned in error.

1. GP referral. There has to be some way to bypass this. My GP was off sick and no locum was in place. Receptionist simply said that no one could help. I called EPU in tears and begged them to help me. They did - reluctantly.

MC is SO traumatic. You shouldn't have to jump through hoops to get some attention.

Most already posted by others!

1. Site EPU away from ante-natal area
2. Proper, joined-up care - when I went back to GP for follow-up appointment after my miscarriage,I still had an ante-natal appointment with the midwife hanging around from when I was pregnant. The EPU told me they would cancel and didn't.
3. Reassurance scans in early pregnancy following miscarriage. I know this costs money but the risk to me and my baby this time from the sheer anxiety and distress of not knowing whether I was just going to lose it again, surely can't be good either? I paid for an early scan but what about those who can't afford it?
4. A bit more sympathetic treatment in general - yes it's very common, seems to be the attitude.
5. Access to the EPU or somewhere else to get a scan over weekends and bank holidays, rather than being left bleeding, worrying and wondering.

(Some) people do find it difficult to know what to say when someone has miscarried and it's as if they feel they should be saying SOMETHING to fill the silence or whatever and this leads to all sorts of faux pas. I really didn't mind when people told me it was common and that I could try again etc I know they were being kind and trying to reassure me, they're well intentioned comments and in most cases true. The really unforgiveable thing is the complete lack of empathy you can get from professionals who should know better and think it's not life threatening, they'll get over it.

Most of the points raised already and absolutely agree with tinierclanger - I was sent an invitation to start 'parentcraft' classes from my hv at gp surgey - nothing like a reminder of what could have been when you're back on your feet.
I went to A&E and waited for 2 hours whilst England played a football match and the staff took a great deal of interest - and I sat in blood soaked clothes - I also experienced an agonising 'internal examination' in which the dr at A&E basically removed whatever she could get to - and then left the room, leaving a kidney dish covered with a hand towel and instructions not to let the ward staff remove it. When I asked on EPAU next morn if results had come back she told me that the remains would be used for tests but not to tell ME anything. I am still distraught at the fact I unintentionally gave my baby for medical research. So, that being said - I think there should definately be a divide for miscarrying women in A&E and EPAU and dr's should undergo some training into the psycological turmoil we are in - it is a medical emergency but also a very traumatic one.

This is the problem though isn't it? Different policies all over the place. My GP and midwife were both FOR me having an early scan but the EPU refused.

My suggestions are already here (nowhere near happily pregnant women, don't tell the woman she has to have one 'normal' period before trying again) but will happily add my name to any poll/petition etc as necessary in support of this.