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Mumsnet campaign for Miscarriage standard code of practice(466 Posts)
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 miscarried over the weekend I was 11 weeks.
I think there should be information on miscarriage in the first bounty pack you get or a leaflet from the midwife.
My miscarriage started last Thursday but I had to wait until Monday for a scan it was three days of hell not knowing what was happening to me. I was given no information about what happens when you miscarry until after I had the scan and I was told I had a complete miscarriage.
I was so scared when I started to miscarry at home I did not know what to do or except. It was so horrible all the blood ,clots and the worst bit for me was the smell of blood. Its such a shock even now. Thankfully I was in hospital for the last part and the staff were so kind to me.
i miscarried over wed and thurs, i didnt have bleeding where i was soaking through 2 or more pads an hour which seems to be all my a&e were bothered about i passed the sac while at work on the loo. later that day at the epu they confirmed i had a complete miscarriage i was told to go back to give more blood after 48hrs which i did and my levels dropped but i was left with not knowing what happens next as a result i have to go to my gp to get sick note so i can take week off to get over it all. i def agree the A&E dept need better training on it. everyone seems to think there's nothing to worry about unless your bleeding heavily....well that wasn't the case for me and it was my first pregnancy. Im angry that i have been offered not aftercare/advice as to what happens now even if i had a natural Mc.
I think this is a fantastic campaign. I had two missed miscarriages last year which were both diagnosed at the 13 week routine scan. Both babies had died at 8 weeks.I had strong pregnancy symptoms, no bleeding or cramps and had no idea that I had lost my babies until the scans. I am now 32 weeks pregnant. This time around I was desperate to have an early scan but was told I didn't have any 'medical reason' for one. I decided to pay for two private scans as the anxiety of wondering whether my baby was alive or not was too much to bear.
With both my miscarriages I opted to have ERPC's. Both times I was put on a day ward full of women having terminations. The first time the anethatist asked me if I was having a termination. The second time the surgeon stormed into my cubicle and demanded to know what contraception I had been using. When I explained that I had had my second miscarriage he walked out offering no apology. I was desperate to have the fetus tested but was told that it was not possible. I kept being told that I would have to have three miscarriages to be entitled to any tests.
I believe that early scans should be offered to people who have suffered silent miscarriages.
No one should ever have to be on a ward with people having terminations when having an ERPC.
The three miscarriage rule should not apply, every case should be treated differently.
Counselling should be offered. I had to ask for counselling and waited over 6 months to reach the top of the list which entitled me to one hour session. I was not able to attend this so I have never received any emotional support.
I am lucky as my family history led me to have genetic testing which uncovered a blood clotting gene which could be responsible for my miscarriages. I have been treated with aspirin and heparin and my pregnancy is going well. I wonder if I would have suffered further miscarriages without this treatment.
Thank you Mumsnet for this campaign.
Would like to hold up the Whittington hospital, London as a fantastic example. I had a early scan arranged by gp 8wks at epu all good, (i was at risk) but missed miscarriage identified at 12wks scan. Amazing staff and had the ERPC same day as the scan, and they gave me and DH a room away from the main ward. I wrote to say thank afterwards, was so impressed, made everything so much easier to deal with. Everyone should get that.
When I saw this post on twitter the other day it made me quite sad. I am unsure why you are running this campaign seperately to the work already undertaken by the Miscarriage Association. Surely that in a time where charitable organisations face increasing pressures in their work, is it not best to work together and instead of duplicating the work of the MA, which they do extremely well and are specialised in their field, that you get behind their vital work and suport them by giving your backing to their campaigns. It's hard enough for women and men who experience miscarriage surely signposting to one service is the best way forward and you can support this through sharing their website, phone number, and the excellent leaflets they provide. Anyone who has experienced miscarriage reading this post please got to www.miscarriageassociation.org.uk where you can get specialised help and information and talk to the many who have experienced miscarriage. The MA also have a facebook page http://www.facebook.com/groups/208106969238866/
I'm going to bump this and bang on, yet again, about aftercare.
It's 1 year, 1 day since my first miscarriage, and getting toward the 9 month mark for the second (I would have been long due by now but it was a missed miscarriage... I much prefer the term "silent miscarriage" myself but I'll go with the commonly used one).
I'm still nowhere near emotionally right - no one cares. I still cry myself to sleep at night, still struggle to cope, still sob and scream and shout in the car. I'm basically massively, massively depressed... I told my GP this, begged for some help - he refused any antidepressants (despite there being ones that would be safe in pregnancy) unless I agreed to have contraception fitted. Essentially he seems determined to punish me for refusing to give up trying for a child - I feel PUNISHED by the NHS for daring to miscarry. The only help I did get - from either the GP, recurrent clinic, or EPU... a threat to section me.
I've been left with NO quality of life, no counselling, no support - been left to be punished for miscarrying... been left contemplating suicide (even to this day one year on)... there is just NOTHING out there to support you, and it can completely change you and destroy you as a person - if I wasn't as strong as I am (thanks mum - you might have been crap in other departments but by heck you sorted that side out) - I would have long since crumbled for the lack of support I was given. As it is - for the last year - I've not lived, I've existed and gritted my teeth and dragged myself through life... if I hadn't miscarried and felt like this - I would have recieved help.
This all still needs pushing to the rafters - we DO matter. We deserve better - not to be treated like the dirty little secret of the womanplumbing parts of the medical profession.
Definitly the part about communication training. I had what I thought was a miscarriage which turned out to be an ectopic pregnancy. A male Dr, and another male, who I don't know what he did because neither of them introduced themselves, came in to speak to me. I was on my own as I thought I was just going in for a blood test. I took my diary out to explain that I had first done a positive pregnancy test weeks before and was still testing +ve even though I'd miscarried weeks before, the Dr said to me 'is your husband that good you write it in your diary?'. I was mortified. He then went on to tell me I'd be getting chemotherapy and then left the room, but hadn't explained it was standard treatment for an ectopic pregnancy so I went home wondering if I had cancer!
Communication skills needs revisting for already practicing healthcare professionals, not just students.
I do hope these details don't offend. The code is extremely good. I've had several miscarriages but probably within the statistical norm, I was still very sad however.
The most difficult one was the most difficult purely on account of the consultant in charge. When the scan indicated no heartbeat he was summoned to explain and told me that frankly, at my age and after a number of live births, it wasn't a great surprise. That line is perhaps one doctors could be asked to avoid. The next very awkward thing was explaining why I didn't want a ERPC: I was worried that what was removed would be incinerated without thought and I wanted to bury the little thing discretly in my mother's grave. He made it very clear he thought this odd. He did apologise later but nevertheless there must be others who feel a need to bury a tiny thing, so perhaps doctors can deal appropriately with this end of things too.
I haven't read the whole thread sorry. Perhaps other doctors cover all this now.
I offer your campaign my wholehearted support. I'm about to be a granny but still remember the heartache of the miscarriage I suffered over 30 years ago at 3 months - made SO MUCH worse by the attitude of the medical professionals who dealt with me. A miscarriage is a death that needs to be mourned. It is not a slip-up or something to be swept under the carpet. Sadly, things have not improved - a friend of my daughter's has just had two miscarriages - and was told to "have another go" (as though she'd fallen off a bike) and that she could not be offered tests until she'd had a third miscarriage. Words fail me. She has now gone private, in a completely justified attempt to find out what the problem is.
Hello mumtosky - yes, we're still working on it; we have a few plans and are thinking about how best to implement them. Hopefully we will have some news for you soon.
Un-Mumsnetty hugs to you, GwendolineMaryLacey and everyone else with experience of miscarriage.
Oh God, that should be 11 weeks above, obviously
Yes, having just glanced at emptyshell's post above, an end to the 'retained products of conception' phrase. There wasn't a person in that hospital that didn't apologise for the unpleasant title of the procedure. So why call it that?
I just had a MMC at 112 weeks resulting in an ERPC at St George's in Tooting. The care I received, from the initial scan till I left the hospital after an overnight stay was second to none.
I haven't read this thread, I will do. But I did wonder about the fact that, on the day I went in for the op, I was told to wait round the corner in the ante natal waiting room, not across the way in the general outpatients bit. I sat amongst bumps, promotional videos and newborns for an hour or so, knowing that in a few hours my baby would be a distant memory. I could have done without that. It's a small thing but it hurt at a time when I didn't need one more thing to worry about.
Hi, not sure if anyone will see a new post on this old thread? Having seen an article about mumsnet in the newspaper last weekend, mentioning this campaign, I wanted to see if there is still an active campaign and how I could support it. A miscarriage last year left me feeling that I needed to do something to try and change the system - if not the law! particularly around the disposal of remains, which I feel very strongly about. If anyone is still working on this campaign, perhaps they could let me know? x
My 3rd miscarriage was a Missed Miscarriage - when I went for my 12 week scan there was no heart beat. The D&C was arranged for about 3 days later. We waited from 7am until midday and then were told that I would not have the operation that day and to come back tomorrow. The reason was that abortions are scheduled operations so they go first in the queue then D&C for miscarriage comes second and they had run out of time. I asked if I would be first in the queue the next day. "No, the scheduled abortions come first, you may or may not get your operation". Luckily the surgeon was doing private work that same evening and I got my operation for £2000. Lucky that we could afford it but how disgusting that a miscarriage should be put to the back of the queue. I would like to see miscarriages given greater priority. Yes I am pro choice but I had a dead baby inside me. It is a normal part of parenthood and everyone talks about the emotive side and everyone talks about having a positive birth experience but when it went wrong and the baby died it seemed like nobody wanted to help.
Staff at EPU definately need better training in dealing with miscarriage, firstly in giving you the information you might need, like answers to "how long could I bleed for", "what complications should I look out for". All questions you'd expect them to answer without having to ask.
Secondly they need to understand that even if it's a very early miscarriage, it's still a potential human being to you! I was treated with little respect and was told (when the blood test results came through) that I was never pregnant and that the GP shouldn't have sent me without doing a pregnancy test and basically I was wasting their time (I did four positive tests)!!!
I have just had my first miscarriage and have had a postive experience at Manchester EPU and I think that other hospitals could learn from them.
1)They have a walk-in Gyne A&E 9-5pm Monday-friday
2)They do scans at weekends (I had mine on the Sunday to confirm I had lost the baby)
3)The staff were very caring and very sympathetic - they did not use words like non-viable pregnancy or embryo - they said "I am really sorry" and "The baby is not there any more"
4)They gave me a side room away from others for privacy
What is needed :
1) Sympathy and care for women and appropriate use of language to the grieving parents.
2) Staff to acknowledge that no matter how far the pregnancy had progressed - this was a lost baby for a mum and she should be treated as a grieving parent.
3) Work places to give compassionate leave or allow sick leave at least
I know in Japan they have a memorial garden for babies that were miscarried.
I'm not sure if this is the right place to put this, but I recently had a m/c and I just wanted to say that the hospital I attended ticked all of the right boxes as far as the miscarriage code of practice is concerned.
I went to St. Mary's in Manchester after I'd had some brown spotting for over a week.
I was able to self refer after the community MW was quite dismissive of my worries.
All the staff were sympathetic, professional and caring. Even though they must see hundred of women like me every week, I was still treated as an individual.
I was able to get a scan on a Sunday (in fact, I got two scans on Sundays), because they do emergency scans in the EPU on Sunday mornings. Also, the EPU has it's own scan rooms, away from the ultrasound department, so women aren't sat in a waiting room full of pregnant ladies (although one of my scans was in the ultrasound department, but that was on I booked, not one that was booked for me) and there are quiet rooms near the scan rooms.
The emergency gyne/EPU is located far away from labour wards and is right next to the front door, so unless you are sent up to the EPU ward, you won't really see any pregnant women.
I didn't have to wait for appointments, and I had an medically managed miscarriage and after the decision was made, was booked in for the next Monday (it was a friday, so couldn't be any sooner)
All our options were explained in detail, as well as being given leaflets, and then DH and I were left alone to discuss our options. There was no pressure to hurry our decision (and the nurse even made us tea and coffee).
It was explained to us numerous times that it was our choice what happened to the foetus, and that we could organise a private burial if we wished.
Afterwards we were offered counselling and I was given a follow-up scan a week later. They also made it clear that if I had any additional questions, I would be able to make an appointment to see someone.
St. Mary's was rebuilt and opened about 18months ago, and even if they didn't get their ideas from MN, they clearly were thinking along the same lines.
Obviously some of the points might be difficult to implement in a normal hospital, and St. Mary's is an obs/gyne/maternity hospital, so it is to be expected that they have high standards of care in this area. However, I still think they should be held up as an example of how miscarriage care should be carried out.
I just think they should get some recognition of how right they seem to have got everything (from my POV anyway), even if it's just me posting on here about how great they were.
This is a really old thread... apologies since I guess attention's moved on.
Some things that I've noticed.
Our local hospital makes you feel crap from the start - the Maternity and Ante-Natal departments are all brand new and shiny near the entrance, you have to walk past them, down progressively more and more dingy corridors, into the bowels of the hospital to reach the EPU... you feel like some sordid little secret.
Waiting areas - you can TELL outcomes other couples have depending on if they're walking out with an envelope (scan photo) or leaflet. I felt we just got a leaflet shoved at us and told to go away and get on with losing it.
My big one:
Aftercare. I'm going to copy and post an extract from what I've typed on the miscarriage forum here...
Would it be too much to hope that in years to come we get some form of aftercare and monitoring post-miscarriage until it's confirmed that:
1) We have no retained tissue
2) Pregnancy tests are showing negative
3) Our periods have returned
4) We're all clear for Asherman's syndrome in the event we had an ERPC
5) We're mentally all right - with someone checking that we don't need pointing toward counselling or medication
6) It would be nice if there was some coherrent regional system to flag up a miscarriage has occurred and cancel midwife appointments/routine 12 week scans etc in the background, without us having to do the ring around when we're feeling at our lowest (but I think demanding the moon on a stick might be more effective than all of this)
It disgusts me that there's all this after-birth support for the lucky women, yet, we're discharged from hospital and there's absolutely nothing out there for us. We're on the accelerated express-lane hormonal come-down from pregnancy hormones, we're recovering from either surgery or delivery either medically-assisted or natural with the ensuing risks of things not fully passing, or surgical after-effects... yet we're just left to flounder along, google our way through the aftermath and no one seems to care.
I just fear for those not enlightened or capable or assertive enough to be able to find support and push for it.
Oh and an end to the use of the "products of conception" phrase. Despite me repeatedly asking the doctors at the EPU not to use this phrase - they still proceeded to do it. No choice given over what happened to the remains - just presented with "this needs signing so we can cremate the products of conception" form shoved under my nose.
I would like to add my experience of the NHS Direct phone service who were totally useless. Unlike the local EPAU who were very nice to me.
After my erpc, I experienced heavy bleeding with tissue and lots of pain. After being told to expect a bleed like a period, I was in a total panic, this was late at night. The people on the other end of the phone faffed about on their computer looking at postcodes and asked some of the following questions
"Are you sure you aren't bleeding from your back passage?" (cos bits of placenta coming out your bum is really common, right?!)
"Could you be pregnant?" (2 days post erpc ffs!)
"Have you recently had an IUD in?"
"Are you sure you haven't got a condom or tampon stuck up there?"
Needless to say, this added to my distress and I ended up just getting a taxi to A and E. With decent advice and reassurance on the phone I could have been spared a night in the hospital.
I am currently going through the trauma of what is more than likely going to be miscarriage number 2 for me. I'll be as brief as I can but want to put across how useless the NHS has been in dealing with both my miscarraiges.
I am 10 weeks and 3 days going by my LMP. Had initial scan at 6 weeks due to suspected ectopic. They saw a sac only which raised concern of blighted ovum and confirmed it was not ectopic. They said I needed another scan in 2 weeks. I had to chase them up continually for this scan appt. At second scan the sonographer bluntly asked "are we checking for miscarriage?" I said this was news to me - i thought we were looking for a a baby? She saw a yolk sac this time and a 3mm fetal pole. Further scan for 2 weeks recommended. No appt received yet again so I chased them up. Sick of waiting so went private. At the private scan was told gest sac was empty and he couldn't see anything and thought it was unlikely this pregnancy will continue. Said I still needed another scan though and it should be with the nhs hospital concerned. I explained this to the hospital and also that I should have had a scan appt from them on the date of the private scan. I told them the results of this scan. They told me to come in the following wednesday 23 June as not appointments until then. My emotions are all over the place I don't know what the hell is happening inside my body and am blood pissed off with the hospital. The outcome does not look good at all yet they are making me wait almost a week to have this confirmed.
My first miscarriage was a traumatic experience due to a scan not being available. I was 12 weeeks pregnant. I started losing brown discharge. I went to casualty on the Monday night. Was told they could not scan me at all until wednesday morning. Was told to rest. I started losing a lot of blood on the tuesday and when rang for advice again was told they couldn't scan me until wednesday am. Tuesday night was one of the worst of my life. I lost copious amounts of blood and large clots bigger than my hand which looked like liver. The pain was horrendous and like labour pains and I was very very frightened. This lasted all through the night. I went to EPAU for the scan on the wednesday morning in a bit of a state. The doctors and nurses were so cold. I just wanted someone to hold my hand. They just examined me clinically - it was awful. They told me the miscarriage was incomplete and it would be best to continue letting it come away naturally. They said I would not lose clots as I had the night before and it wouldn't be as bad. I believed them. Three days later I was in the bathroom and the largest thing came out of me which I believed was the placenta. This was very frightening - it looked like my insides were coming out. Two weeks later an appointment for a scan was received and when I attended this the sonographer (who was training someone said to me)"you do know you've had a miscarriage don't you?".
I have gone on enough and I am sorry this is so long but I just wanted to try and convey how awful both experiences were for me (this is somewhat therapeutic in a way). Until you have suffered a miscarriage you cannot know what it is like. It is one of the most traumatic things (physically and emotionally) a woman can go through and yet the medical care and support offered is appalling. The NHS need to do something about the way miscarriage is dealt with and fast. With best wishes to all and here's hoping for change xxx
I've always been treated quite well during my miscarriages however I am sorry to hear about all the other problems experienced.
Maybe the focus shouldn't be on how we are treated during our miscarriages, maybe Mumsnet could take forward a new campaign, a campaign for the government to inject more money into research into preventing miscarriages.
I find it very, very frustrating that so little is known.
What do you think?
Having just been through this, I would echo the two things SuziP says, and one more.
At the scan, the woman doing it knew we had been through IVF and I was 43. She was very scathing about this and spoke to the other staff over my head in a loud voice about how the IVF clinics rip you off and take your money and run. She asked how much it had cost me and made loud tutting noises. She asked where I'd had the IVF and when I said London she said "Why have you come here, then? It's their problem, not ours." (because the GP referred me?!) She then said the baby had no heartbeat and it was to be expected at my age.
Well, all those things may have been true, but NHS staff should keep their personal opinions to themselves in such circumstances. I kept going over and over in my head what she had said and how she had broken the news to me and it made an already awful situation even worse. I had so, so wanted this baby and being 43 didn't change that. She never once said she was sorry it had happened.
After that, I was sent back to the waiting area where I had to wait nearly 2 hours to see a doctor. In that time, lots of pregnant women came along, had their scans, and went home smiling. I was sat sobbing in front of all these people. Why isn't there a room for people to wait for the doctor in privacy?
Lastly, there is no follow up. No reassurance scan afterwards, no counselling, nobody checking I am still enough steps aways from being suicidal. Plus, they discharge you and tell you if you have any complications, to see the GP. I had agonising stomach pain after my ERPC, went to the GP and he was at a complete loss as to what to do. I found out later I should have been sent back for a scan, but he just said it was probably contractions and to go home. There needs to be specialist gynae follow-up available in the weeks afterwards so women can be reassured that any symptoms are normal.
A lot of my NHS care was very good, and lots of individual staff members were lovely, but there's still a long way to go, sadly.
I am still very raw from my recent experiences but 2 areas that could have made the horrendous last few weeks a little easier would be:
- Somewhere to sit and take in what you have just been told. Not just being bundled back into a waiting area where you have to sit and hold back tears, unable to talk to your partner about the devastating news you have recieved only moments before.
- Follow-up support after you have been discharged. (I was discharged after a ruptured ectopic pregnancy which nearly killed me 3 weeks ago and at no point have I been offered counselling or any kind of information or support about what we have been through. Having left a message for the midwives to say I wouldn't be attending my appointment as I was no longer pregnant, no-one has ever made contact. )
There really is comfort to be had from this campaign though - thank you.
I'm new to this. Also I'm male. I hope that's OK. I picked this issue up in the Guardian and thought maybe some old stuff might be useful for comparison with today. It may be old but it's still fresh with me and I'm telling it for the first time in a public space.
We have three children of 24, 21 and 13. A fourth is missing which should have been the third of four. The worst thing about it in a way is that as far as the medical records are concerned it never existed.
I have to say 'it' because non existant children have no gender. Strangely it's dificult to grieve properly for a child who is neuter. You can form no real image of the life that has been snatched so suddenly from your waiting arms.
My wife miscarried in the early hours. She was writhing on our bed in agony, which the on call doctor couldn't relieve. By some miracle our two other children didn't wake. They couldn't be left alone so when the ambulance came she and I were seperated. The thought occurred to me that maybe something could go terribly wrong and she would be alone......It was sickening moment watching the ambulance tail lights disappear in the dark.
I found out later that she had aborted spontaneously at the hospital and then been tidied up internally. However things were not improved by the registrar.
Having learned that the pregnancy was unplanned (only in the sense that we stopped taking preventive measures to let nature take it's course) He assumed that the child was unwanted and she had the impression that he even suspected her of doing something to bring on the abortion.
He proceded to lecture her on the subject of contraception. but he was terribly mistaken. The baby was very much wanted and eagerly anticipated by the whole family. What a thing to do! but there was more to come.
Someone else had been taken in at the same time, and we believe that the bottles containing the two women's 'contents' were mixed up and labled wrongly. By the time we realised, I expect the remains would have been destroyed.
We discovered this at the following clinic when a young doctor who had not been present explained that that if there had once been a foetus, it had been reabsorbed by the body and she had had a kind of false pregnancy as a result. That's what the notes said and the doctor could only read what was written.
My wife said to me 'They're not my notes'. I asked her how she knew and she said 'Because I saw the baby'. All be it fleetingly, she had seen the foetus with her own eyes but the evidence was gone.
We really needed to know why our child had died because our second child was disabled with Spinabifida. If we had lost the third through the same condition our risk of problems with a further pregnancy would be much greater.
As a result of this my wife feared getting pregnant again as she felt she would not cope with more long term medical problems. That is why there is a long gap between our second and our third (normal) child.
I have no wish to forget, my lost son, or daughter;I wish I knew which. The place I kept warm inside is still waiting, and for me I have not three but four children, one of which I have never seen. It seems to me there were three things which could have helped.
a) If there had been some kind of family emergency back up system (there would have been if there had been time on our part to make provision)she could have had the same support from her partner which she had at the birth of all her other children.
b) Recognition that for us, and for many, the foetus was our child, which we were losing; someone who was already in a sense a person to us. Our flesh and blood.
c) The possibility of specialist councelling, (There is an impact on the whole family when these things happen, including other children.)
It has to be said that family and friends can have a big impact on recovery and care inside and outside hospital but not all medical personell actively encourage their participation in their medical strategy.
In the case of my disabled son, as a newborn, I once actually had to point out to a health professional that focusing solely on the infant as his patient, while failing to recognise the mother's own needs was unwise, as she herself was his ultimate life support system, especially after he would come to leave the ward. He (the doctor)needed her to be fit for perpose in that respect.
A code of practise should help everyone if it's properly thought out but at the end of the day it's a matter of humanity too, and that involves mutual empathy, and all of us adopting a team spirit, Medics, patients and loved ones together.
Sorry this was so long. I hope it may help in some way.