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...

Oh yeah, 'wait 3 months before trying again' - when I asked why, 'er - well you don't have to really'. Thanks for that. How useful.

Can't believe they tested for chlamydia without asking, that's appalling!

that when you m/c and the doctor attending says that the foetus will be sent for testing to see what went wrong to actually hear back letting you know. why say these things if they did not test it for abnormailities?

Have not read the entire thread so apologies if I repeat anything. Most of these are to do with aftercare.

Scans offered for bleeding - particularly for women with past experience of m/c

Scans after spontaneous m/c to ensure nothing left behind.

Routine check for Chlamydia (and any other poss causes which may be easily detected and treated) after m/c (or maybe at beginning of pregnancy?). This one could have saved a couple of people close to me a lot of heartache.

Departments need to communicate! I was called by a HV just before my baby had been due to arrange pre-birth visit - she had no idea I was no longer pg!

After my 3rd m/c they would not offer me tests as they had not been consecutive! Also think 3 is too many to go through before investigations.

I also found some of the MWs I saw were very unsympathetic (some were fab though). No appts from scan at 11 weeks until 26 weeks here. Due to early mid-trimester m/c one MW agreed I could pop in for heartbeat check at 14 weeks for reassurance but when I phoned to make appt another MW told me the check was pointless as baby could be fine today but dead tomorrow

keeping a good distance from people miscarrying and those that are having an abortion. tis just wrong

I have had two miscarriages, one at 6 weeks and a missed miscarriage which was discovered at the dating scan. I was lucky enough to have had very good care. This is what, in my opinion, was done right.

• Very sympathetic GP who arranged scan for the next day.
• When scans clarified miscarriages had happened, I was immediately taken away to a separate ward away from all the other pregnant women.
• The doctors and sonogrophers who dealt with me were all very kind (e.g. they said they were sorry) and took their time explaining things to me in as much detail as I needed. The doctor talked about the baby "stoppped growing" at about 6 weeks and I felt that this was a particularly sensitive way of talking about what had happened.
• I was given written information about the possible options for dealing with the missed m/c (e.g. medical, ERPC, waiting) which outlined exactly how the procedure would happen and the advantages and disadvantages of each.
• I was given written information to take home with me after the medically managed miscarriage that explained what was likely to happen next in terms of bleeding and what I should look out for in case I got an infection. It also explained there was no need to wait and I was given a phone number I could ring to talk to a miscarriage counsellor.
• I was on a special ante-natal ward when I stayed the day to have the medical treatment for my missed m/c. This ward only seemed to have patients who were dealing with miscarriages or infertility issues. I did not see other babies there. They also asked that you did not bring your children to the ward. Not sure if this is common practise, but I think it was because they were sensitive towards what the patients were experiencing.
• I was seen at a recurrent miscarriage clinic after having only two miscarriages. I think this is because I also have a diagnosis of PCOS which is linked to recurrent miscarriage. I feel lucky that my hospital was flexible enough not to make me wait until I'd lost a third baby.

I'm pretty horrified by some of the stories I've heard here.

I've not had time to read all of the thread yet, but just to add, the thing I would most like to change was the information I was given by the medic. (She was the 3rd HPC I saw withing 15 mins at the EPU (booking in nurse who asked us in some detail what happened, the woman doing the scan, and lastly the dr, who was supposedly discussing our choices with us.. would've been nice to have a consistent person but, ok, having 3 each covering a different part of the process is probably the most efficient way to run the clinic))

Anyway. We walked into the room (having just seen the scan of our still little baby. Medic gave us 2 leaflets, one about ERPC, one about natural mc, talked in a bit of a garbled way about "a third option which we don't actually offer" (which I knew from mumsnet was the medication to get the mc going). She asked us to read through and tell her what we wanted to do... gave us about 2 mins. Needless to say I just looked at the leaflets in a daze.. then she asked what our decision was. We asked for more time, she said, fine, the earliest erpc I could book in is a week and a half away anyway. And we left. I miscarried naturally later that day. The leaflet had nothing real in it about what to expect from a natural miscarriage. Medic only talked about "products of conception", didn't mention what (I called) the baby would look like when it came out, or that it might feel similar to labour (I felt contractions and an urge to push), which was really upsetting. All of the stuff that I guess feels difficult to say but is a real real part of natural mc...

I haven't had a chance to read the whole thread - so will probably repeat some of what has already been said:

Oh boy...where do I start (Have already lodged a formal complaint against my EPU)

I was misdiagnosed as having had a complete miscarriage, then was incorrectly 're-diagnosed' as having an ectopic before they eventually found a normal pregnancy in the womb...which I unfortunately miscarried naturally at home a week later.

So:
'Breaking' the news of a miscarriage should be done sensitivly and by a doctor who can answer the inevitable questions you have (I got a rushed phonecall from a nurse who said that as my HCG levels had dropped, it was definitely a miscarriage...good-bye.)

There should be immediate access to a scan, expecially over weekends.

After bad news of a miscarriage or Ectopic has been given, the woman (and her partner if applicable) should be given somewhere private to wait. After being told we had miscarried, we had to sit in a waiting room with heavily pregnant women and couples gazing lovingly at their scan pictures. I had to sit for an HOUR, trying not to sob too loudly. TWICE....with the first (incorrect) diagnosis and the second (correct)one!

The medical professionals should take it seriously...we know miscarriage is common and we know it happens to 1 in 3 or 4 people...but it isn't any less traumatic if you are that 1! The doctors didn't take a correct case history until they suspected an ectopic - so everytime I phoned or went back for a follow-up I would have to repeat the WHOLE story and all the symptoms...again...and the poor medical history on my record certainly contributed to the incorrect diagnoses.

Reassurance scans should be offered as standard for anyone who has had a previous miscarriage. My local hospital doesn't offer them (Which is fine because I would have to be dragged back in screaming & kicking)...

Some initial testing should be done after two miscarriages...my DH has a medical condition that we were concerned about having caused the miscarriage. When we asked the doctor she said that 'It is possible, but would be very unusual - the NHS doesn't offer any investigative tests until 3 miscarriages, so if it happens again we should think about having the tests privately.' So she acknowledges that it is a possibility but won't do anything about it?

The EPU or GP should contact the Maternity ward to cancel your 12 weeks scan and booking in appointment. It was a very, very difficult phonecall to make...days after the miscarriage.

I could carry on, as I think I had a particularly bad experience. It would be great if some change could come about from this. There are some horrific stories on this thread...

The pain that so many of you are carrying is terrible and there are no fresh comforting words that I can offer, but for the grace of god go any of us.

It may be a small thing to suggest on this thread- however to any of you who work or have contact with companies that market to families/ mums to be I would advice that you look into the baby mailing preference service.
This is similar to the deceased mailing preference service where the registar of deaths is matched to marketing data prior to mailing campaingns out.
With the baby mailing preference service families who have suffered m/c, still birth and child bevreavment can opt out of getting junk mail of a baby vein.
Its not much but it might help someone out there even in a small way.

Oh gosh yes.
At 23 weeks I had a bleed and collapsed. Ambulance took me to hospital and I was admitted to the labour ward. It was a horrible night , strapped to a monitor, waiting to be scanned , hearing women in labour all around me. Thankfully I was okay.

But the lady in the next bed from me was recovering from a miscarriage (15 weeks) and a massive hemorrhage. I felt so aware she was looking at my monitor and could barely speak to her I felt so sad.

I asked the nurse and she told me they were struggling for beds so had to place people wherever they could 'so they don't end up in corridors'

Also a friend of mine had an nhs termination and was placed on the postnatal ward. So much for sensitivity.

Definitely more information on what to expect when you have a medically assisted miscarriage.
Whats going to happen to you etc, sorry if tmi, but things like sitting on the toilet trying to push your baby out, but you can't so you have to pull it out.

Also more information should be made available about things like molar pregnancies, I found out about them off the internet as the doctors explained very little.

The opportunity to be able to speak to somebody about it too.
Thanks to mumsnet I avoided a meltdown, family/dp weren't too helpful.

I'm sorry, I haven't had time (or the emotional strength to be honest)to read all of this but would like to whole heartedly support any campaign of this kind.i had a suspected ectopic last year and the treatment I received was breathtakingly bad. Insensitive doesn't even begin. I would absolutely echo being able to sit away from happy pregnant people; equally when you're given bad news it would be good to have somewhere other than a room full of anxious couples waiting for their scans to have to go back to in tears.

Also, being asked whether the pregnancy was planned given I had a 22 mth old and had I thought that was sensible?

I think sadly medics consider it an everyday scenario and many certainly don't consider it as a death. And that, I found, makes it all the harder to grieve.

Feeling sad now so will stop - to be honest, for me, the treatment was as bad and more painful than what happened to our LO. Certainly just as scarring.

Good luck with it all. It is so important.

Do not insist on trying to place a canular into a distressed woman who is needle phobic unless it is absolutely necessary. I had what I assume was a house doctor insisting on doing this to me, she kept on saying that her registrar said it was necessary in case something went wrong. She also told my best mate to be more supportive as my mate was telling her that she didn't think it was necessary and to leave it rather than cause me more distress (my mate was there the previous time when it had taken 4 attempt before sending me down to surgery without).

She then went on to tell me that she was going to arrange a scan that evening, only to come back a couple of hours later when best mate had gone home and hubby was there with me to tell me that they would keep me in over night and do the scan in the morning. 2 hours after that she discharged me. Two hours later my sister took me back into A&E.

Haven't read whole thread, but would strongly support a campaign such as this.

Would like to add (although I am sure this has already been mentioned) the importance of breaking such sad news in a sensitive manner and if new staff are being trained in EPU, for it to have been decided before who will break the news and how, instead of in my case 'do you want me to tell them'.

What a great idea, it's just a shame that the need for such a campaign even exists.

I've had 4 mcs and would agree with everyone's points here. Some of them could be so easily addressed - it would cost pennies to have a sticker on hospital notes explaining that the patient has had a mc so that you are then treated with sensitivity and not asked repeatedly to explain your circumstances. It's hard enough to have to go through without having to broadcast the fact every time you meet someone new in the hospital.

Oh god the canula thing - I'd forgotten that. I had an obviously very junior doctor trying to place one into my hand and making a right mess of it (I know they have to practise but not on someone who is about to give birth to a dead baby, surely?). I remember DH and I looking down at her shoes at one point - they were covered in blood! Black comedy.

Loads of great ideas here. To be honest a lot was done right for me.

• immediately taken to a separate room away from the antenatal unit once they realised the baby had stopped growing

• sensitive discussion about what to do next and the choice to wait for the miscarriage to start spontaneously

• kind, respectful staff

• the chance to go home to miscarry once I had taken the tablet to get things going (sorry, no idea what it was

UNACCEPTABLE though was the consultant answering his mobile whilst in the middle of a vaginal ultrasound. And me being the idiot I am did not tell him to get off the phone. In some ways it's almost laughable.

I was utterly shocked by the treatment at my local NHS hospital when I m/c (although at the time they were also worried about an ectopic).

• waited 3 hours alone until 11pm at night in A&E before I was seen by the doctor.
• the only way to get a scan to check if it was an ectopic or 'just' a regular miscarriage was to be admitted to the ward.
• I was therefore admitted overnight at midnight and stayed overnight taking up a valuable bed space (and I know they were short of beds) for no other reason than because that was the only way to get a scan at the EPU without waiting 3 days.

I was told this was the reason by 3 different staff members - 2 doctors and 1 scanner operative.

The scanner operative was very open about the shortcomings of the system and was very annoyed that there was a lack of joined up thinking which was leading to this ridiculous situation. I asked (can you tell I'm a journo from the interrogation I was giving him!) how many women a month were being admitted for this reason alone and he said it was 'not insignificant'.

As a result:

1. women who are in a sensitive and distressing situation are having to stay on the ward when they would rather be at home.
2. Beds are being taken up overnight on a ward.

Just so someone can get a scan the same or next day!

So erm to get to the point of what I'd like to see.....quicker access to scans when they are really needed and as others have said, not being dumped with a load of smiling pregnant women in the EPU.

Hope you don't mind me adding my opinion despite not miscarrying. So sorry to you all.

When women go into A&E with suspected mc are they treated as priority? I.e. as a life/death situation similar to if someone had been rushed in on an ambulance?

If I'd found blood and miscarried I would have wanted/needed:

1. To know what was going on as fast as possible and to be treated as urgent. I might be physically ok but my potential duaghter/son is at extreme risk (even if only a 9 week old feotus)

2. Privacy and certainly not anywhere near new babies

3)For the staff to treat me as I would feel - i.e. that my baby, one of my closest family members had died.

4. To see everything I wanted to and to bury/cremete any remains

Iloveetc. I wonder though whether we should really be treated as if it is a life/ death situation in A&E given that as far as I am aware it is practically impossible to save a baby that is going to miscarry (I am talking here about babies pre-viability).

Important to me -

• the option to do something with the remains that isn't incineration.
• contact the bloody scanning depts to inform them when someone is no longer pregnant and so doesn't need reminder letters about her 20 week scan.
• prioritise women needing ERPCs over other surgery for that day. It's not ok to expect us to wait hours until a bed becomes available.
• teach hospital porters to shut the fuck up when they have no idea what is wrong with you. I had a cheerful berk telling me 'don't worry it won't be that bad' when I was sobbing on the gurney, presuming, I suppose, that I was scared of the surgery. He then later said 'see wasn't that bad was it'? when he saw me afterwards. Um, yes it was, now fuck off.
• something as someone suggested to get women taken off mailing lists for baby bumf.

Other than that the royal sussex in Brighton was pretty good, as was my GP. I got a scan appt the day after my bleed and ERPC the same day. EPU separate from ANU and the staff were lovely (well most, one young doctor who had to take blood and get me to sign consent form was clearly incredibly uncomfortable by me sobbing. He said something like 'it's very common' or something stupid like that.

I also got a referral to an obstetrician for this preg as I had 2 mcs before. He didn't do a lot but I got a scan at 9 weeks which was essentially a reassurance scan.

i have M/C'd but ilove, sorry, but unless the baby is at the stage of viability it's neigh on impossible to save them.

the mother should be a priority if she is bleeding heavily, as ANY patient who is haemorraging should be.

I wanted to add another positive thing - it seems so odd, but despite having lost 2 babies, I have very positive and happy feelings about the hospital, and think that so much can be learnt from them:

When we were called for dd's PM results, we were sent to the gynae clinic. Cons was at the desk, and immediately asked us how we were, and if it was hard to be back. He then spent over 1 1/2 hours with us, firstly going over PM results, then just gently chatting about how we were, the future, our worries, making sure DH was all right as I was doing all the talking. He apologised for having to answer an urgent page and was fab. All simple, uncomplicated human things which really helped us heal and feel stronger.

When I had my first mc I was wheeled up to a ward before they knew I had lost it - waiting for a scan, naturally very upset.. ward sister tuts when she sees me, announces, ' this is the thirteenth patient we have been sent this night!!' then talks over my head with doctor and various nurses bitching about colleagues, time off and ignoring me crying. That was 7 years ago but I still shudder to remember it now!!

Also wish some well meaning ancillary (?) sorry for spelling!! - member of staff would not have said 'Well it was worse for me when i had one .. I think it is worse when you already know what it is actually like to be a mum , and you dont.'

I only work one day in a bloody chemist and I am sure I have a better manner with all my customers than these supposedly trained healthcare professionals!! We would get sacked if we spoke to people in such a way.

I hope our collective comments can help make things better in the future.

Shoshe - yes, my friend with Lupus now has a bouncing ds She had to self inject every day to keep the pregnancy and would have happily done this before if only she had had the test and known
Why it can't be tested for at first pg bloods I don't know...?
Also I agree with Chugga on the mailing thing. Some way of letting the 'Emma's diary' people know about women who are no longer pg. I remember receiving a leaflet recommending protecting my most precious baby by stem cell harvesting - 4 months after I mc