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 had 2 m/c's and am currently 38 wks pg with anticipated bundle of joy no.1.

The heartache endured to get to this stage is indescribable though and the care received from the medical profession both times was so variable that what you were told and how you were treated was obviously down to "who you get" ...

... from having to sit among other happy mums-to-be waiting on their scans looking at me curiously with a drip in my hand (why not a separate scheduled time to deal with these cases more sensitively)

... being told by my (old and male) GP that women in the Third World had babies everyday and that it would happen again for me

to, more positively

.... being referred by my (new, young and female GP) for an early scan with this pregnancy - advising she was determined it was important that WE (ie. me and DP and not just ME) relaxed and enjoyed this pg - that meant soooo much to us both.

More information is needed. I searched and searched and searched wherever I could for info on m/c before TTC no. 3 hoping upon hope that I wouldn't have to m/c a third time. The dread that something is wrong with your body is consuming. Then there's the mixed advice re. aspirin/heparin.

GREAT CAMPAIGN

I wanted to add that my first mc although very traumatic, painful(both emotionally and physically)and awful(it took me 12 years to conceive), I was treated well by the staff concerned. The nurses gave me pain relief as I too had suffered a missed miscarriage,(though in those days it was called a missed abortion, which was just awful and thankfully is not referred to like that anymore), and I was in horrendous pain. I had my first nights sleep in about a week. I was 10.5 weeks and my baby had died at 6.5. I was so afraid that they'd made a mistake and that my baby wasn't dead at all, that they had a doctor come and talk to me and reassure me, but also gave me the option that if I wanted to they would scan me again to be sure. She gave me enough reassurance though, that I didn't have another and had the ERPC. The anaesthatist(sp?)was a lovely young man that held my hand and I just remember saying to him as I went under that I wanted this baby so much through the tears and sobs...him just holding my hand made a whole lot of difference to me.

After I'd lost my 3rd baby(number two is my gorgeous Ds)I met a young woman waiting in the EPU who'd got problems with her pg, I can't remember the details...she and I sat there for ages not saying anything(I'd already lost my baby) and when I came out from seeing the doctor, I said something to her, though I can't remember what except that I knew she'd be fine, gave her a hug and left. I saw her about 4 months later, very pregnant and I know she had a healthy girl. I was very pleased. I hope my hug made her feel better, because you can bet your bottom dollar that she got no real comfort from the hospital(the second hosp was not as good as the first one).

My experience may or may not help;

Last year I was fortunate enough to be sailing in the med but unfortunate enough to suffer a miscarriage at 8 weeks at sea. I didn't know what to do so phoned my GP surgery in London who basically said "so what".

I became pregnant again a few months later and was concerned when I started bleeding again. Thankfully the 1st occasion coincided with the nuchal scan and the consultant was able to give advice. A massive fibroid was discovered but not the cause of the bleed. I was given no information about the effect of the fibroid.

However I started bleeding again on a friday night.

At this stage it would have been helpful if there had been a leaflet in the Maternity notes book giving information of what to do and where to go.

I waited until Monday morning and went to the antenatal clinic which I assumed was the place to start, to be told that under 18 weeks I should go straight to A&E. (I knew that NHS direct would have told me to do this but I had hoped to avoid that.) A & E were surprisingly quick and referred me to the EPU where I had to wait in a grubby corridor followed by a grubby waiting room with nothing more than a badly photocopied leaflet. Eventually (hours later) I was seen by a Dr who checked my cervix and said that with a lack of pain I was probably alright although they would investigate the cause of the bleed and I could have a scan 2 weeks later.

I'm intelligent enough to figure that a lack of pain is a good sign but it didn't stop the worry. Was it innocent or was this going to keep happening? Was the fibroid to blame? As it was I got no answers but as that was the last episode and I am now 28 weeks pregnant with a fibroid blocking the exit I am just happy that so far so good (sort of).

(Going off script; Generally I have been extremely disappointed with the NHS but the Maternity services thus far have been a joke. I have seen 7+ different Midwifes, waited for appointments for coming up to 20 hours in total. My community midwife didn't know that the aminio/CVS test is for Downs, argued the toss with me then phoned a friend and told me I was right. She then sent me for a £350 test without telling me that I would have to pay for it and probably didn't need it. The silver lining is that I do see the same consultant and now have full hospital care.)

I feel very let down about the treatment of me by my GP Surgery in the aftermath of my miscarriage and with a threatened miscarriage I found the system difficult to navigate particularly when in panic.

I share the view that being able to walk straight in to EPU is not the answer; no one would ever get seen; there ought to be a screening 1st - it's just a question of who does it. But there needs to be a quiet sense of urgency with reassurance and not to be treated like cattle. My husband treats me like a goddess and so should the NHS treat us all like that - it's not hard and costs nothing.

Sorry for the long post. I could go on for days but I get acid!

So much of it is down to good training for staff. I began to miscarry at 12 weeks whilst on holiday in Spain, rang surgery and spoke to a GP I had never met before. We came home early, had a scan at EPU first thing which confirmed foetus had died at 9 weeks. The staff at EPU were tremendous, held my hand, let me and DH have privacy to cry and gave us all the options in a kind and caring way. That afternoon, the same GP rang me at home to offer her sympathy to us - which was so helpful as she recognised that to us it was a real loss and we were grieving. I crashed a month after the miscarriage and rang their counsellor who was a gem and after two meetings, I felt so much better able to cope with the sadness.
I agree with all suggestions and would also add that proper training of staff is needed and the offer of a trained mcarriage counsellor is invaluable in aiding women's recovery.
PS I now have a lovely ds of 3 months old but I will never forget our first.

Hello. I had 2 visits at my EPU at 4 years' interval, referred urgently by my GP on both occasions. My experience was far better than a lot of those told here, so there is good practice about, and I'd like to think everyone was able to benefit from it:

• The EPU was not near a labour ward, or not so you would notice. I'm quite robust about these things, but I remember that no babies were visible beyond the hospital's main entrance - this was important because my DD was very distressed and thought someone "was taking the baby away", and seeing babies being carried past would have confirmed her belief.
• Once the scan was done and I'd been told it was an mc, they put me into a separate room, well away from other patients.
• I was advised about what to do and given 24/48 hours to consider the options between an ERPC or letting nature take its course. There was a leaflet but a nurse talked me through the options. It was up to me to ring them.
• When I decided for an ERPC, I was seen by someone who talked through the process and advised me to take 2 weeks off work at least. She advised me not to try to be 'brave' and to accept that it takes time to recover.
• I was admitted and discharged in one day for the ERPC and given a room to myself.
• I was advised to have a general anaesthetic because they found that women having local ones tended to be too distressed. I think that was a good piece of advice.
• The follow-up was up to me, and in fact I didn't need to come in again.

Personally I have been really fortunate - if that's the right way of looking at it - with our local hospital and all the pregnancy / maternity services.

mc1 - late, 18 weeks, missed, m/w check due to bleed and no heartbeat heard. Sent straight down to hospital for follow up and scan etc and was treated very well.

A heavily pg woman was also being seen at the m/w day unit and we had separate waiting room / examination room.

Things that helped

1. seperate waiting area / room while waiting to be scanned by docs, before the big scan at the xray unit.
2. being walked straight down and straight into the final death scan
3. Being made a very strong cup of tea with lots of sugar and hand held back from the scan room to the day care waiting room to await further medical advice and medication, by the receptionist of the m/wife day unit.
4. incredibly kind and compassionate staff at most levels, especially the poor scan operater who had the dubious honour of giving me the news. 5)Not having to wait around for too long to get the scans - time from hoping all was well to finally delivering bubs was 24 hours.
5. follow up scans for RPC were all early morning and appeared to be for suspected / mc patients only, also hospital has a separate area for anti-natal routine scans. 7)separate room in the maternity wing for deliveries of a no good outcome nature, or where parents of still born babies can spend some time with their children. 8)excellent chaplaincy service and a funeral. 9)Superb follow up appointment with a consultant who was really compassionate and answered all our questions, and was helpful as I had started my next m/c the night before going to the appt. He got me booked for all sorts of follow up and got me aspirin prescription etc. Fantastic Doc, won't mention by name tho . He also runs an excellent team - they check your notes BEFORE they see you, so they sound as tho they remember you - really good bedside manner!!!!! 10)Helpful out of hours doc who gave me a script for very strong pain killers having read my notes, without forcing me to go to the hospital in person. 11)Excellent EPU that seamlessly fits in with the other maternity services at the hospital. 12)Excellent PA's / Secretaries who have control over their consultants appointments and the scan appointments. 13)Lovely scan team in the xray department, including appointment makers.

Not so helpful

1)m/w not knowing who you were when turning up at hospital to finish having m/c and deliver poor boy, having been booked in for the following day to have an induction in case the pills didn't do the job...not their fault, very understaffed that night - obviously live births are a higher priority, and rightly so...
2) Having his body put into a hazardous waste sack in the room...necessary I know, but couldn't it have been done outside the room - this was my son, not hazardous waste to me!
M/w saying 'it's so small, should have been a gynae case - not his fault he was small, he'd been starved by his placenta and dead for a week...unintentionally heaping guilt about being in the wrong bed didn't really help...
3)Crap advice about a postmortem (from m/w teams) - only found out afterwards that they could have put the poor boy on ice and then we could have decided within 24 hours...luckily got all useful results from the examinations we did have done.
4)Having to sign consent to take the abortion pill to move things along (yuck - but how that can be improved I don't know)
5)Fg community m/wife telling me I had passed a 'clot' when it was the size of my thumb and the texture of liver - it was retained products...I was right...
6)Not enough information on 'what happens next' eg what will signs be, what could happen, how long will bleeding be before delivery etc etc - all the gory bits they don't like to tell you could be very useful inside a 'so, your pg hasn't quite turned out the way you expected' leaflet.
7)GP telling me not to bother going to the follow up appt for the original m/c as I'd just started my next one (WTF) and not really being helpful beyond, well, put your feet up (grrr) there's not much we can do. OK it's true, but purleese...
8)Having to argue the toss with GP about getting a sick note for work, even thought they were insisting on one...

Needless to say, I finally delivered my PSB at the local hospital and have changed GP's...

Also information on late and missed mc would be helpful when you're first pg.

Second time around was almost easier as it was an early - horrid physically (ironically) BUT at least I didn't feel like such a medical anomolly.

Also information about symptoms eg feeling 'heavy' was one of mine, but I guess the medicals' don't want too many women self diagnosing as the already stretched services would become overwhelmed.

Continuity and care were the buzz words that helped us as a family, cope with a shitty event.

Oh and routine tests for clotting disorders after one late m/c. Making women wait until their third is cruel and unusual and a waste of their lives and babies!!!

Wishingchair I am sorry if I upset you. I didnt mean to compare like for like. I certainly didnt want to cause upset. I worked for the NHS for years so I know how crap it can be. What I meant but obviously didnt make clear was that with cancer now there are clearly defined pathways for treatment. I would like those for other medical problems.

Don't worry ronshar you didn't upset me. I agree it can and should be improved. It's just sad that those improvements (some of which are just so straightforward) are needed in so many other areas as well. You shouldn't have to be an expert on how the system works and have the confidence to push your way through it. Sometimes you just need a bit of hand-holding.

Agree with nauseous - 'being pregnant' and 'going to have a baby' are not the same thing... The incidence of miscarriage is very high, but until it happens to you, you don't really believe it. Unfortunately, this is probably why some healthcare professionals are so blase about it - they see it all the time.

No time to read through all messages but as someone who has experienced two MCs, here's my contribution:

• more practical and realistic information, including a leaflet or similar on miscarriages when your pregnancy is confirmed. This may be controversial, but I would have liked to have understood the stats (I had no idea it was so high and thought I was a failure) and to have known exactly what to do if I started bleeding - where to go, who to call, how long to wait at home before seeking help etc

• a leaflet written especially for male partners, who cannot be expected to understand the poss physical aspects (my husband simply couldn't believe I could be in so much pain when only 11 weeks pregnant cf giving birth at full-term)

• immediate scans, so you know exactly what is going on and can start to grieve straightaway, instead of being left in limbo

• be kept away from pregnant women while waiting for scans etc

• better training for A&E staff, including in their communication techniques

• better communication between all organisations and people involved (no-one was informed by the hospital about my first MC, which became very embarrassing for the GPs, midwives and healthcare team who kept contacting me about various pregnancy-related things)

• a sea-change in society so that it is not considered a subject to be hidden (both times I had to pretend to my employers that I had a stomach upset, and it was particularly diff when the second started when I had just arrived at work). OK, I can but hope...

Good luck with this campaign - absolutely appalling state of affairs right now and really needs improvements.

If anyone's interested, I've started a thread about Hughes (Antiphospholipid) Syndrome in Health. It seems there are a few people on here diagnosed with it and some people who may get something from looking into it.

DEFINATELY - Make sure women who are miscarrying and women going for abnormal cell checks etc.(might not be able to have baby) away from pregnant ladies & babies

Also information about bleeding and what might come out! Hospital thought there was nothing left.

I was totally traumatised when went to the toilet and I could see the whole shape of the umbilical cord and some of the foetus. I was a gibbering blubbing wreck hadn't expected that.

Kangaroo, Mum was with me when I had an exam to see if the cervix was open. The doctor (no word of a lie here) said to her "if I can just show you this piece of tissue I removed" it was my baby - her grandchild - lying on his palm!!! Mum had nightmares for weeks about it.

It would be a good start for anyone involved in setting up best practice guidelines for the treatment of m/c patients to read this whole thread first - and I mean that quite seriously. I had m/c six weeks ago (first baby), and reading a lot of these messages I can't believe how 'lucky' I was, really, at St Thomas' who were pretty good on most fronts, and my GP follow up was excellent - really caring and attentive.

There are many women out there who don't know how to ask for what they need - or are in no fit emotional state to do so. Although logistically this would be a big task, I'm sure, I really think there should be an automatic follow up, so that you have the option of seeing a GP to ask all the questions that you are too stunned and upset to ask the hospital staff at the scan.

I agree with ronshar that if men were experiencing such trauma on a daily basis, it is hard to believe that the kind of treatement described here would be tolerated. I'm not usually into making such sweeping statements, but DH agrees with me. Mind you, I'm not sure how that accounts for the attitude of some female medical staff!

I've read as much as possible (a few pages) and am feeling really angry just seeing women's experiences and remembering my own. I agree with what others have said to improve the experience.

• not having to wait days/a week for a scan following bleeding (I had to wait several days)
• not to have to wait in a waiting room with heavily pregnant womaen
• for miscarriage not to be treated in a casual and offhand manner but to be treated as a serious matter affecting not just the physical but also the mental health of women.

I was in agony during my early miscarriage, I don't know why but I was - I was treated with mild irritation when I begged for painkillers and to be seen immediately. I was told to sit down and wait, I had to rock in my chair to ease the pain, in front of a number of heavily pregnant women. The callousness of it still takes my breath away.

It's already been said but better training for A & E staff is vital. I spent several hours in a crowded A & E waiting room one Saturday miscarrying my first pregnancy in front of a curious audience, who were probably wondering about the woman quietly sobbing and rocking in the seat at the front. I was bleeding heavily and very upset and frightened. I know that there is nothing that the staff could have done to prevent the miscarriage but if someone had had the sensitivity and consideration to get me sorted and on my way home again swiftly it would have made such a difference.

I lost my little girl at 22wks last year and apart from losing your baby at any stage of pregnancy there were some incidences that stick in my mind.

1. Being offered therapy sessions at kings college hospital, only to find out you had to wait 3 months on a waiting list and by the way the therapists office was located on the same ward that i lost my baby, the LABOUR WARD!!!!! Hows that for sensitive.

2.Receiving a phone call from the same hospital two days after the event to inquire why i had not turned up for my 23wk scan! 3.Speaking to NHS medical excemption card operator informing that i no longer had a baby in side me, hence card void. 4.My local doctor's receptionist announcing at my 8 wk check that i must registered my babies details for the surgery, if only she had looked at the computer screen and checked my details before launching in to that one! I replied my baby died just to return the favour however felt dreadfully guilty as she looked horrfied. Enough of my rant its never going to be easy but time is a great healer (how i used to hate that saying) and i send love and understanding to all of us that go through this heartbreaking ordeal.

uly, you didn't need to inform the Medical Exemption people, you're entitled to it for 12 months after you are due to give birth, it's about you not the baby.

Thanks again everyone for your thoughts on the Miscarriage Code of Practice recommendations for Alan Johnson, Lord Darzi et al.

We've compiled into a list of 10 key recommendations here.

Do have a look through and let us know if we've missed anything important/ any typos etc.

Thanks,

M Towers

When I inform my dr that I'm having a m/c to not be asked if I'm relieved!
When going in for a D&C for a mmc, not to be made to sit in a waiting room in the labour ward!
To not be promised an early dating scan as reassurance due to prior mc and have the dr then forget to refer you
For nurses not to roll their eyes at you on one of the worst days of your life
To not have a nurse at A&E say to you "What do you want me to do about it" when you are 19 and experiencing your 1st mc

TinkerbellesMum

The medical expemption form is not valid for the further 12 months if you give birth (to a still born) before 24 weeks. A lot of people don't know that, even my GP thought I was still entitled to free prescriptions and yesterday the dentist thought I should still get free dental care.

Can I just add re: point 9, while I agree that info should be held centrally, it could potentially be extremely difficult/impossible without an overhaul of elecronic medical records so could add to the recommendation that 'Alternatively information about miscarriage should be forwarded to community midwife teams and GPs without delay to stop bereaved parents...'

Can I also just mention that in Scotland health is a devolved matter so Alan Johnson has no jurisdiction. Can the recommendations should also be forwarded to the Scottish Government?

Should "Evacuation of remains of products " in point 5 be sentence case since it is subsequently abreviated?