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...

[WreckOfTheHesperus]

I think that "surgical assistance with miscarriage" couldn't be mistaken for termination, isn't cold and clinical, and would be fairly straightforward for a layman to understand what it means.

[overthemill]

i do HATE it when medic call miscarriages and terminations by the same term, eg spontaneous abortion. stop it stop it stop it

[Wonderstuff]

I had an early mc at Basingstoke and North Hampshire Hospital and they were fantastic. From my GP who was on the phone for 30 mins ensureing I was seen the same day at EPU, to the sonographers who were sympathetic, the consultant was fab, I was able to have an EPRC the same day, there was a specialist miscarriage nurse to talk to, I was give lots of useful info to leave with, I was told the remains of pregnancy would be individually respectfully cremated at the local crematorium, and there is a 6 monthly service held there for families who have miscarried. I was treated with respect and sympathy by every member of staff I met, they refered to me as mum when signing paperwork, which meant a lot at the time. Basingstoke Hospital should absolutly be used as a template for good practice.

[Habbibu]

Yes, I thionk we ought to be highlighting models of good practice, as wonderstuff has - this helps, as it'll show how ideals can be put into practice. Would like to add Ninewells, Dundee to this list.

[whomovedmychocolate]

I'm really glad you are doing this Mumsnet. For me, it's all still too raw to talk about or think about, but the worst one for me was a friend who was having IVF on hearing that yet again I'd miscarried replied 'well at least you can get pregnant'.

[WreckOfTheHesperus]

Agree with whomovedmychocolate; not the best thing to say to someone in any circumstance, and spectacularly unhelpful if they are suffering from recurrent miscarriage....

I wold really like to see clarity around what tests you should be asking for, and at what stage. At my age and doing IVF, I can't afford to wait for 3 consecutive miscarriages before tests are run.

Another thing which wold have helped me greatly would have been better information on the issue of natural killer cells, and thir role in miscarriges. It appears to be acknowledged as a possible issue by some top private places and treated, but ignored by NHS.

Another plea; I had my scan which showed a missed miscarriae done privately; I think that you should pay for your scan first, rather than have to be chased down the stairs by a receptionist who's after your money as you are heading out of the building in tears....

[amrg]

I think information on some of the treatable causes of miscarriage would be incredibly helpful. I had to go through 2 before Mr. Rai, who works at the recurrent miscarriage unit at St. Mary's diagnosed (in 2 weeks) a blood clotting disorder called Factor V Leiden that affects roughly 1 in 20 women. I now have 2 gorgeous kids due to daily injections of heparin and low dose aspirin during pregnancy, but I hate to think I would have had to endure another miscarriage before any investigation on the NHS and the second one could have been prevented. I will always remember both due dates.

[JustineMumsnet]

Hello Mumsnetters,
We've just heard from the Chief Nursing Officer re the Miscarriage practice meeting which was called to discuss the issues raised in our Code of Practice. Broadly it was very positive, with lots of agreement about what needed to be done. Essentially many of our recommendations to do with sensitivity/communication are already in the guidance, they're just not being universally followed, so we talked about training and information provision. We also talked about practicalities - ie access to Early pregnancy units and how they could be arranged physically to give miscarrying women private space.

Here's what the Chief Nursing officer has sent:
"Maternity services are a priority for the Department of Health and we're
always looking at ways to make them better for the women who use them.
Sadly for some women this includes services for early pregnancy loss which
is why yesterday my team and I met with a number of professional and expert
patient groups and charities to hear their thoughts on how these services
currently work and how we can make them better.

"It was a great opportunity to have such a wealth of knowledge and
experience in one room with representatives from groups including Mumsnet.
We discussed a number of innovative ways that services can improve the
things that really matter to women going through early pregnancy loss,
including making sure women understand what is happening to them and are
sensitively supported throughout their care. We are now going to use this
information to help local NHS organisations across the country to
understand and improve the quality of their services and to make decisions
about the services they provide in future. We are delighted that all of
the participants are keen to stay involved to help us take this work
forward, giving us a real opportunity to drive up the quality of care for
women and their families."

The groups involved in the meeting were:

Association of Early Pregnancy Units
Care Quality Commission
Department of Health
The Ectopic Pregnancy Trust
The Miscarriage Association
Mumsnet
NHS Choices
The Royal College of Midwives
The Royal College of Nursing
Royal College of Obstetricians and Gynaecologists
SANDS

[PollyTroll]

Good article in G2 today - here

[Mollyetta]

I went to A&E as was bleeding at 10 weeks, this was at the weekend so EPU was shut. It was so stressful & frustrating as A&E do not consider possible miscarriage as an emergency. They would not scan me as unit was shut and therefore I spent hours up in A&E and came away none the wiser as to whether my baby was dead or alive. The doctor basically said if you are mc then it doesn't matter what we do the process has already started but yet it would have been nice to find out either way. Gynae lady said she would book me an appt at EPU the following day but could not guarantee me a time so had to go work the next day, got a call just as I got to London (2 hr journey from my home) saying can you come in for scan. This was around the time it was snowing and as it had taken me ages to get into work I couldnt leave and go back home again, so then had to go to EPU the next day to have scan and be told baby had died at 7.5 weeks. EPU lady was lovely but it would have been nice to find out at the hospital instead of all the crying stress and worry I had to go through. Another thing I found was that after my D&C all I was told was that I would get my period within the next 6 weeks. No one told me that my nipples would start leaking yellow discharge and be so sore that it would make me cry, this was worse than the actual procedure. My GP didn't really give me any helpful advice after. What I have learnt is don't even bother with A&E espeically at weekends. Use EPU units as they are good but need to give more advice re what your body goes through after mc, hormonal changes, my body felt like a complete freak but no one said oh don't worry this is normal, only from going on forums and realising that other women had the same symptoms that I started to feel OK about it.

[willali]

Haven't read whole thread

But better guidance for A&E staff would be top of the list for me - whe I had a m/c some years ago it happened when I was on the toilet. THe A&E Nurse said "Oh well best place for it" I cannot tell you how upsetting that one comment was.........

[queenoftheslatterns]

just want to say that the article in the guardian is very positive, thank you MNHQ and Lucy.

[Littleblue]

Ive had two miscarriages,first was dealt with in an appalling NHS A and E,up to a ward full of very pregnant women to wait out the "expulsion"..this culminated in a very heavy handed internal scan,the consultant doing this,showed me the screen to prove my womb was empty
The second time i went to hospital,and as soon as it was obvious that it was more than a small bleed,i discharged myself,under extreme criticism from the staff..went home,and dealt with it quietly alone,we buried the remains of our child under an oak tree in the garden..my GP,when i went for a check up afterwards was very supportive and apologised for the hospitals attitude...
As to how you define what terms a baby,for me its immediate ie "im expecting a baby"
both my miscarriages were in the 13th week...

[GraceK]

Haven't had time to read the whole thread - had a silent miscarriage at some time before 12 weeks - it was found during the dating scan & I treated wonderfully by the sonographer & the EPU at Southampton.

However the information was not passed on to my GP / midwife and so was called several weeks later regarding an appointment as if the pregnancy was still ongoing! Distressing. Then on my next pregnancy it was found that the info about m/c was not on the computer so I had to go through the info again. Why can't the information be rolled out better to all the medical staff involved in your current / future pregnancies?

Also I have a couple of friends who had recurrent m/c due to Hughes Syndrome (sticky blood), when a simple /relatively cheap blood test could have saved them multiple traumas. Why can't the blood test be standard even after one m/c - surely it would be cheaper for the NHS to do the test than sort out d&c's, fill up EPU's multiple times, etc; even ignoring the trauma involved.

[Galda]

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.

[SuziP]

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.

[musicposy]

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.

[summersong]

Hi guys,

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?

[mattsmama]

Hi all

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

[kat2504]

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.

[emptyshell]

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.

[MrsChemist]

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.

[purpleglowspider]

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.
   
   XX

[Pigletta]

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)!!!