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...

[barbamama]

Just wanted to add my support - particularly to the bit about not having mc / d&c women in the same areas as healthily pg and voluntarily terminating people. I've only had 1 early mc at 7 weeks but the worse bit for me was sitting in the filthy hospital toilets for an hour unable to move as had not been prepared for the "passing the products of conception" part and didn't know what to do. Women should be gently informed of the process I think (and possible options about treatment of the products of conception). I can only imagine how much worse it is at later stages.

[goingfor3]

Women who have had a mid trimester miscarriage should automatically be refered to EPU for thier next pregnancy. GP's need to be made aware of the hospitals polices too, my EPU do see a woman after one late miscarriage but my GP didn't refer me I had to call and arrange it myself and then get a gp's letter.

[BBBee]

I know it has been said before but walking out of a hospital ward after a very late miscarriage - the images smiling babies and posters about breastfeeding as I bit my lip holding back wracking sobs with an empty womb leaving my baby behind will stay with me as one of the most painful moments of my life.

Good luck with this.

[Blandmum]

I was sent for an early scan at 8 weeks with my second pregnancy. It was very comforting for me to see the heart beat that the GP had assured me couldn't be seen at 12 weeks when I had the M/C!

[BBBee]

Hmm - I didn't put that very well really, basically what I am saying is not on the labour ward if possible.

[barbamama]

I didn't say anything about babies.

[lackaDAISYcal]

Should also note that women presenting at A&E should be given a scan, or that EPU services should be available outside of office hours. When I started bleeding with my fisrt m/c, it was late and we called NHS direct. We were told to go to A&E. After sitting around bleeding for two hours, they said they couldn't scan me (no mobile ultrasounds available) and suggested I call the EPU in the morning. There was actually no point in me even going to A&E in the first place.

Again, that seems to be about different branches of the NHS communicating with each other.

[NamechangerReg]

What a fab idea. I've had 2 mc both early but my experience in hospital with the last one was truely horrific. Including trying to leave me on a ward with mums to be and a doctor wanting to give me an interal exam 5 mins after 'it' had happened & then muttering things about too much blood to see I also about 2 weeks after, had a midwife ringing me up to make an appointment as she'd obviously not got the message that there was nothing to make an appt about anymore.
Having said that there was a couple of nurses in the EPU that were marvellous - more need to be trained in the same way

[Mercy]

I've had one, early miscarriage.

I would like GPs to be more sympathetic and prepare you for what may happen; that is to explain what is likely to happen at the EPU, what may happen physically and emotionally to you. I agree that a letter from a GP shouldn't be necessary in all cases.

I would also like EPUs to reiterate this advice (I got a real shock when I went for a scan - I had no idea it would be internal)

I would like some form of post-miscarriage support for both parents.

I was 'lucky' in that my EPU was entirely separate from the labour/maternity ward and the staff were nice. I have been to the North Middlesex twice for pregnancy related situations - I know it doesn't have a good reputation but the staff are great (unlike many at the Whittington imo).

I still have a few questions about what happened.

[Blandmum]

My mother, who is now in her 80s had a MC over 50 years ago.

In those days there was no scanning available, and she had to give a urine sample for test to see if she was still PG, she was bleeding so much, she got blood in it.

The nurse shouted at her

My mother remembered this for a very long time

[islamum]

My experince was 'good' North Hampshire Hospital should def. be used as example of best practice, following made a massive difference
EPU on diff floor to labour ward and ante natal clinic
Scan staff sensitive, saying 'i'm sorry' makes a difference
Miscarrage nurse on ward - she was fantastic
Given option of d&c
Placed on ward with others who had had d&c and hysterectomy ops
Told that remains would be respectfully individually cremated at local crematorium, and 'mum & dad' asked to sign to allow this
Memorial services organised by hospital for those who have suffered mc
Given option of keeping scan photo and when i said no told it would be attached to notes if i ever changed my mind, its comforting to know its still there
Given leaflets with details of what to expect post op
Told 'not your fault'
Offered to give sick note for time off work, told take as much time as you need
Also had excellent GP which made massive difference after

[ClairePO]

What a great campaign.

Agree completely with automatic access to EPU. I actually mc'd on holiday in Germany. We went to the hospital in the evening (about 8pm), reception directed us to Gynae, the nurse welcomed us and sat us down to wait for the doctor to be free, 10 minutes later I was having a scan. I was shocked on our return to realise that in this country you have to wait days - if they want to see you at all.

Also agree with not having to walk through a waiting women of pregnant women. We'd known of our loss for a few days before the UK scan so had time to adjust but I can't imagine the sheer pain of having to do that when we had just found out.

But I do have to say every health care professional we dealt with here and in Germany were absolutely fantastic though, I seemed to have better care than many.

[BibiThree]

I had to go back to the ante-natal area of the hospital for my post m/c check - waited in the same room as the pregnant women waiting for their checks/scans, got scanned in the same room as I was scanned in 5 weeks previously when baby was alive, and where I was told baby had died the week before.

Awful time. SO very glad this is happening and hope it helps ensure women in the future get better treatment.

[islamum]

Also the nurse asked if I had a midwife appointment booked and cancelled it for me, she also gave me the option of keeping the appointment if I wanted to talk it over with midwife. Wish I could remember the name of this nurse, she was truely fantastic, even included a wonderful poem her friend had written in discarge info.. I'm welling up here though, 3 years ago and its all still so fresh.
Read somewhere that its not when you loose a baby that is significant but how much you've bonded with it, lost my baby at 10 weeks but I have never before or since grieved so much..

[poorlygirl]

Having suffered 2 previous m/c, I would like to see more support with future pregnancies.

To have to wait for 3 pregnancies before investigations commence is heartbreaking. Regular blood testing would also help to check levels are rising as expected.

[ExtraFancy]

Ask that people do not bring their babies/young children into the EPU. I had a scan at 6 weeks, was actually vomiting with fear, and had to sit next to a woman with a baby on her lap. Ditto the suggestions that EPUs be placed well away from antenatal/maternity units.

[islamum]

My GP was very important in me being seen early actually, when she called the EPU she was told next appointment was in 3 days, she was adament that that was inappropriate and spent ages on the phone to the hospital till she was able to speak to the ob/gyne on call and fit us in that day, there should be emergency slots every afternoon for scans

[VirginiaWoolf]

A great idea, stemming from such a sad topic.
I would agree with others above that there should be no question of having to wait/recover on the same ward as patients there for a termination; I was in such shock at the time that the horror of this only really hit me later (just what I didn't need). Also, staff need to be far more sensitive re: their terminology - I understand that the procedures are in some cases just the same, but I was torn in half to hear a nurse bellowing over to the desk asking if Mrs &^ had had her termination yet as her DH was on the phone (of course he hadn't been allowed to stay with me).

[MerlinsBeard]

aorry in advance for spellings...ds3 won;t let me put him down...

At the very very least EPUs should be open at w/e and BH.

I agree with alot of what has been said about during a m/c. Mine was incomplete and i had to keep going back. I wasn't told any options only that i would "expel it naturally". It was only thru MN that i knew of other options (D&C...).
I felt like they washed their hands of me after the second scan that coinmfirmed i had indeed miscarried. The fact of the matter was that i needed more scans as it was incomplete and had to walk thru the antenatal clinic to get tp EPU.

I agree that a seperate leaflet with what to expect in terms of loss and placenta. I was terrified when i saw what i assume was the placenta and baby in teh toilet. esopecially as i was told i would only bleed and there would be no "lumps"

I think some follow up should be made. If i had had that follow up i think i woul have let myself grieve sooner instead of pretending everything was ok

and i think an automatic early scan when you are next pregnant shoud be offered.

[islamum]

Absolutly agree extra, babies under say 5 yo should be kept away if at all possible

[cmotdibbler]

I've had 3 mcs.

My first was found at routine 12 week scan - no warning at all. There seemed to be no system in place for dealing with that, and we were dumped in an exam room in antenatal clinic for an hour before having to take ourselves to EPAU. Which was on a ward which had a childrens section - so whilst waiting you could hear small children. Only sort of sympathy or counselling I got after ERPC was from lovely night sister who told me about her mc.

Second pregnancy - started bleeding, midwife told me 'well, you'll either loose it or not. Nothing I can do'. So mc at home over a bank holiday. Went for scan and blood test to check for complete mc and the sister on EPAU was a complete cow.

Third mc - as EPAU scanning only worked short hours, when I started bleeding, I had to go to the antenatal department to get a scan. Had to demand that the scanning room be shut so that the pg ladies outside didn't hear what was going on. Saw junior doctor, who I had to get to look up what the procedure was for 3rd mcs, and ask about getting a chromosomal analysis done. Turned out that this hospital was no longer allowed to do 'emergency' ERPCs (ie within a week)- could only be done at the other hospital. Could she ring up and get me an appointment there ? No - I had to be transferred there direct. DH couldn't take me- had to be an ambulance. I sat for 6 hours waiting on a hard chair, and the ward staff didn't offer me water, a bed to lie on (there were spare beds), and forgot about me at staff handover. Had to explain to everyone, including at the other hospital. Got my ERPC next morning - in the anaesthetic room I was reminding them about the chromosomal analysis, but when I'd come round after the junior very offhandedly told me that they had put the PC in formalin, so it couldn't be done.

They then lost my referral to see the RM consultant, didn't ask me about the disposal of my baby (only nice person I ever spoke to was the chaplain when I rang to find out about it). And when I did get pg, I had to have my scans with the consultant in the antenatal dept - with the infertility patients.
Midwives were horrible about my worries, and totally dismissive.

I did make a formal complaint about my experience, and when pg successfully, I did note that they had changed some practices.

The MC Association do have great leaflets, including one specifically on late loss, and do an amazing job when you consider their annual budget of £200,000. They do put on training courses for HCPs, and there are some places that provide outstanding care such as Leeds and Nottingham. However, Mid Sussex stank.

In my opinion, miscarriage is treated as a terribly routine minor gynae problem, wheras actually it is a major emotional trauma.

[Uriel]

Thanks Jodie.

[MerlinsBeard]

i had to take my children with me...there was no one who could have them and i couldn't leave them alone. I wanted DP with me, in teh end he had to stay in the waiting room anyway.

[islamum]

GPs should be given training on men who have suffered, my dh was grieving too, and no services available to him, mc should be a reasonable reason to be signed off work for men too. Also dh should be allowed to stay, my dh was with me all the time.