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 two miscarriges via Hampshire hosipital (in Basingstoke) and found they had a good pack of info to hand out so would suggest getting hold of that as a starting point.
The only bad thing was that in the 'quiet room' where we talked after all the scans etc, the bin was full of bounty folders in an 'I dont need that any more' kind of a way. Made us smile a little but also think of the others that had been through there that day.

Justine - any chance you could get Scottish Govt involved? NHS is devolved, but it's equally important here.

I agree with many of the comments here, and my comments below are really only in respect of first trimester MC.

I do feel, perhaps controversally, that this is a very common, quite normal ocurrance that has always happened to women. No, we may not want to hear that at the time, but the fact remains it is an extremely common event, as well as an extremely personal one.

As clearly shown in all the comments above, we all have different needs, and different reactions and I really don't think it possible that all health staff & services should be set up so no person is ever offended. It would seem there is clearly room for improvement, but health staff are human and you will find as many idiots and pricks in the NHS as anywhere, just as you will also find kind and sensitive souls. I don't think you can legislate that away.

I'd just like to add that there could be more of a link up of information in the system.

I had miscarriage at night on the weekend - I had just brought tickets for a film, when I had what can only be described as a mass evacuation. Thank god I was wearning a long black coat. Oh the horror. My maternity hospital referred me to Chelsea & Westminster A&E as they have EPU there - I was treated respectfully & well. It's a difficult situation and I was distressed of course, but I got through it & staff were fine.

The worst bit was trying to contact Queen Charlottes, to cancel my 12 week scan. I could only call the phone number between certain (limited) hours. I do not want to call during those hours and discuss in front of my colleagues. I could not leave a message. I tried to fax them on the fax number provided for days - fax never went through. I tried repeatedly. No email, no website - no way of communicating with them apart from this number. It was impossible to contact them - eventually I left it. It was just too much to deal with. So didn't get to cancel the appointment (not from want of trying) and someone else could well have used that scan slot.

Over the past 4 years, I have suffered 2 ectopic pregnancies and a miscarriage. I ended up with a huge op and removal of a tube last year. I am one of the fortunate ones that I am now pregnant and due to give birth soon.
However, reading the earlier threads I completely agree, there is a definite need to have a separate waiting area for women with suspected m/c. There's nothing worse than sharing a room with other mums and babies when you are going through so much pain yourself.
In addition I had to insist upon a d&c on my m/c as the doctors wanted to give me tablets and let me deliver naturally. Having already had an ectopic and been given injection to dispel foetus and remembering the pain I had gone through damn near made me hysterical! As far as I was concerned the pregnancy was not viable and I wanted it out right there & then. Fortunately the doctors took note of my near hysteria and did a d&c.
More support & information should also be provided for partners. My husband was as distraught as I was. But we found that there were not many people we could really speak to.
4 years later we are none the wiser why I had the ectopic pregnancies or the m/c. I suppose I am just glad that any future pregnancies are always given priority and I?m referred to the EPU very early (6-8weeks) in the pregnancy.

when I had my 1st miscarriage I was not allowed to go to EPU i had to go to A&E first, they did a urine test and said as it was negative I Was not entitled to go to the EPU. in the end some dr told me i hadprobably never been pregnant anyway. I demanded a blood test and they called me 4 hrs later to say that the test showed that i was pg (highish HCG) they said that they could do nothing for me until the following monday

so i paid for a private scan

6 weeks later the MW called me to arrange my booking in!

so i think part of it should be

access to EPU immediatly without referral
being seen by trained, sympathetic professionals
being seen, assesed etc as soon as possible and not being made to wait 3 days
that systems should be auto updated to make sure the MW does not call
counselling offered as standard
follow up appt a month or so later so that you can ask questions and ask for help if needed

This is a really tricky one i think. I'm a sonographer and I can see both sides of the coin. It's a whole chain of things that need addressing. I work in a largeish hospital and due to recent financial cutbacks (to meet higher government targets) i am one of just 2 sonographers. Our wait for EPU is 6 days. When I was off work for just a few days following a D&C for MY miscarriage the wait rose to 10 days and I had people on the phone asking me when I could get back into work to scan! So whilst I agree that things need to change I can see it's a virtually impossible task without addressing the whole NHS system.

I am often in the position of having 2 doctors stood in front of me requesting a scan at the same time. One represents a miscarrying lady who is distraught. The other a patient with suspected liver cancer who needs a scan to see if she can be treated. I have one slot. My scan won't actually effect the outcome of the poor ladies pregnancy but would make a terrible situation easier for her. The scan, however, could be the difference between life and death for the other lady. Which one would you do?

Deciding how this code of practice should run is a much needed but i certainly don't envy the person who's job it is.

Thanks for the update I really think it is an important issue
It really scars mothers quite deeply with an often missed and misunderstood sense of loss and personal failure

so much grief could be avoided with simple sensitive handling which does not cost much

Chilly that is an interesting insight thank you for sharing, I understand that the lack of resources is an issue but I think that what causes most grief is insensitive handling rather than a sometimes necessary wait/ rationing of resources

The stories here are heart-breaking.

I thought that one point which might be important from a campaigning point of view is that this problem is not new: women have posted about their mothers or grandmothers who still feel pain at how badly they were treated when suffering miscarriages decades ago. We need to make sure our concerns can't be written off as the worries of neurotic modern women. Miscarriage is something that's been badly handled by the medical profession for decades - though with pockets of good practice.

I speak as someone who has had two miscarriagaes, one at five weeks so might have been dismissed althogether, one at nine weeks and a lot of to ing and fro ing and reassurance heartbreakingly miscarried the day after seeing my baby wriggling on screen. NHS direct were not well informed or helpful and said of the first "well years ago you wouldn't even have known you were pregnant". No, but I did and it that made all the difference. A and E over the weekend didn't really know what to do either and did an external scan! The thing that made the whole thing bearable was the self referral EPU in our area, although this was only monday to friday. They were kind, sensitive, offered a photo when the baby had finally died after the third visit, made prompt arrangements for EPAC, explained choices sensitively but in matter of fact way. I am really sad that this practice is not common across the country. An extra level of referral mens that some people with bleeding might not attend and ectopics might not be spotted early and also simple reassurance for women who are bleeding but do not go on to miscarry won't be given because they'll be sitting tight and just waiting. I recovered quickly psychologically from my miscrriages (despite the anaestetist who on the morning of my EPAC breezed into the room where four momen were waiting for the same thing and said "so how many of these are terminations?" And I attribute this to the prompt, accessible, sensitive and professional treatment I received at the local EPAC. I have since had a healthy baby boy (my second child, both born after fertility treatment but there's another story!)and have been looking for a place to campaign for better treatment for people suffering threatened or actual miscarriage. The campaign for better maternity services is absolutely right and proper but I think it is far more visible and hides other campaigns that are perhaps more popular to do with pregnancy.

It's really difficult to talk about rationing of resources and I'm not sure that this might not mask the issues here. Of course they are there, but in a way, we as mothers are very good at putting the needs of others infront of our own. We shouldn't say that these services aren't important because there are other priorities. And perhaps we should acknowledge that not all choices in the NHS are between life and death. Otherwise, I probably wouldn't have such straightforward access to my gp- I can't think of a single life and death thing I've had to deal with, even fractures. But we have to put things on the agenda because then they won't even be heard.

It would help if the consultant in a&e has not popped his head round the curtain and asked me if I was the lady having a 'spontaneous abortion' Medical term for miscarrage apparently.

The nurse who heard him say this, came in afterwards and said 'sorry, the whole ward thinks he a total knob'

Also not being left in a corridor for 30 mins in a queue of people waiting for ultrasound with blood stained legs and feet might have been nice.

I don't think any extra resources are needed to address the above, just tact and thought.

Hello.

Thought you'd like to know that we've just received this from the Department of Health:

"Following up the concerns raised by Mumsnet about the care of women's miscarriages, there is to be a meeting to explore the way forward."

And they've asked us to attend.

Good news, eh?

As ever, we'll keep you posted.

Being allowed to lie down would have been a good start.

There does need to be some basic level of CARE at the very least.

I hope these consultation will also apply to NHS Scotland.

Good luck.

at flippin last. progress. Had too many mc's to even start mentioning, and can't atm as the last one was a year ago yesterday, all a bit too ouch just now because of the date. Will come back and post when in a better position. But thanks to all for getting the issues raised.

I have had 3 mc. The first was spontaneous over in a day at 6 weeks. The doctor was as kind as he could have been. I just took it as one of those things. The 2 mc was traumatic with lots of incompetence and professional uncaring and abrupt rudeness with the odd brilliantly caring person. I woke up with bleeding trace not a lot at 12 weeks on a Saturday at 5.30am. We had a 3 1/2 year old so tried not to panic as have no relatives nearby e.g. in Spain. (You can't phone a friend at that time in the morning). Ended up taking her with us to the A and E at 6. The A and E doctor was lovely and did take into account having DD with us. It was probably 10 when I finally went to a ward. Lovely House Doctor on the ward who had to keep comming and appologising that the consultant hadn't come. Finally scanned at 10.30 pm. So had been in the hospital 16 1/2 hours before they did. Found out the baby had died at 8 weeks. That was it.Given a leaflet and took back to ward and left. No-one came to check I was okay or if I understood or any offer to phone my husband to explain. Lucky the nice House Doctor saw me the next day and made time to talk through options and listerned. The next day sent home to come back on Monday for the second scan. No-one told us to come prepared to have a EPRC or I would need to stay in. The scan was strange. They had the notes but still had a trainee observer who asked in our presence 'So you often have to give the bad news then?' not the best thing to say in front of a woman whose notes say misscarriage. :! Chucked out with a 'I am so sorry' to sit in an empty ward. Luckly a nurse who had been on the day before came and told us that they had saved the bed I had for me and to go there. They were then so incompetent that the porter came to take me to theatre without them giving me the perseray. I had to request it from the nurse. This meant that instead of going down at 10.30 in the morning it was nearly 6 before I went down. Even worse because they had given me the perseray at 10.30 I was in really bad cramps by 2. No medication, they didn't even want to give me paracetamol. Only when a nurse had decided that it was too cruel that she over-ruled the senior nurse to give me some.
Afterwards there was no sympathy from the nurses just an attitude that was life. A health care assistant by contrast was lovely. Couldn't have been more kind.

Sorry to go on as you can tell this is still raw. Contrasting with the 3 mc which was managed much more caring and compasionately and much quicker to heal.

It is this caring, compassionate and thinking about what they are saying that is important. Little things that don't cost the NHS anything but can mean a whole lot. Like offering to phone partners to explain when the patient are in shock and can't stop crying. Taking the time to come away from their desk chats to check that patients have understood or know the next steps. Have leaflets that can be read not poorly copied. (It doesn't cost any different from a poorly copied leaftlet with pages in wrong order to one copied properlly.) To read notes when patients come on the ward NOT expect the patient to remember that they need medicine a set time before porters come. * Think about the effect of any medicine needed.

I had a miscarriage nine years ago and remember vividly the distress and pain of this awful experience.

I had to wait a few days for my scan which was agonising, so I think that situation needs to be addressed.

Miscarrying women should have their own area in a hospital or special unit which is away from pregnant women.

The naming and referral of the procedure to remove my much longed for baby as ERPC (disgustingly insensitive) needs to be changed - I was handed a leaflet by the nurse to explain this procedure and it was quite a shock that my baby was being referred to as a product. This made me feel very angry at the time.

I wanted my baby's remains to be kept for me and dh after the procedure - this was viewed as frankly bizarre by the medical staff, but I wanted my baby's remains to be treated with respect and buried (I was 12 weeks pregnant). I think all women should be given this option no matter how early into their pregnancy they are.

After much discussion it was decided that it was up to the surgeon. My husband walked down to the theatre beside my trolley and passed our heart shaped box to the surgeon and explained what we wanted and luckily he agreed. I think this opportunity should be routinely offered. - I buried my baby near a beautiful tree and by dad planted a rose bush to mark where my baby was buried. I and particularly my dh found it so comforting to visit this spot and remember our baby. It really helped with the healing process.

Babies should not be discarded by hositals in such a disrespectful way I think this should be changed as well.

To keep you up to date we're going into the Dept of Health on Thurs 25th to discuss how our recommendations "could be delivered through the implementation of the Maternity Standard of the National Service Framework".

So fingers crossed and we'll keep you posted on any progress.

Thank you Mumsnet. This would be outstandingly good if it happened. Having had 3 mc in the last 2 years, I've been on the pointed end of some appalling treatment. It would have been so much easier if some of these points were standard practice. I'm very happy to put my support behind this initiative.

thank you mumsnet for addressing this issue.. I have had ten miscarriages now and every single one has been terrifically traumatic..but there are instances that will stick in my mind forever, like when a totally horrible sonographer told me to cheer up as it could be so much worse - having just told me Id lost my baby..

I have lost count of the amount of times I have heard doctors call my lost babies "abortions" ..

and for my last mc, a couple of months ago, I was granted a spot at the epu - which is right next to the labour and special care wards ..

No pain relief has ever been offered to me when miscarrying, I have always been told to take paracetamol and my most recent mc I was desperate for a erpc after baby had died, at 12 weeks, but was refused as it was "better for me to do it naturally " .. I then had two weeks at home, waiting to deliver my dead baby ..this really really was cruel and unusual ..

I have just now finally been referred to a mc clinic on the nhs - after 10 miscarriages .. the three mcs and then investigation promise is a myth in my area..you have to beg ..

I had a horrific miscarriage, but I have to say being put on a gynae ward next to terminal cancer patients made things a lot more distressing and miserable. I eventually asked to go onto the postnatal ward and be nursed by midwives, so they gave me a side room and mollycoddled me a bit, and things were a lot better that way.

I have had several miscarriages over the last few years (and a live birth thank goodness) and reading the stories here make me feel really sad. I have been very lucky in that Edinburgh Royal Infirmary have been great and in my experience followed your commandment list pretty closely.

Just wanted to put a positive story out there (as positive as it could be for this awful subject).

Thanks MN for addressing this issue, reading some of the posts, I agree that each woman's needs are different and the NHS is stretched but a code of practice so that all staff are working to the same practices can only be a good thing. And yes I also agree that sensitive handling and compassion make all the difference but that is something that can be trained to the right staff if legislation is in place.

I've had 2 miscarriages and my sister is suffering her first this week, it has bought it all back watching what she is going through

BoffinMum - I totally understand where you're coming from with the gynae ward and wish I had asked to be moved.

My first mc was at 16 wks, an early labour after 4 weeks of bleeding and pain with many uncomfortable hours in waiting rooms of gynae wards all ending with scans confirming baby was doing fine, so bleeding and pain ignored.

4pm Friday, begged mw to visit me as I was in a lot of pain, heartbeat heard so reassured all must be ok and off she went, leaving with advice to rest, which was all I had been doing for 4 weeks. 9 hours of labour followed (although didn't realise that's what it was despite having given birth before) and several calls to midwives asking if I could come in as I was scared and in a lot of pain. They just reinforced the 'take paracetamol' approach. Massive haemaorrage at 1am, blue light dash in ambulance (lovely, lovely paramedics) to gynae ward. Wouldn't give me any pain relief until doctor had been, put me on main ward, in major distress and late labour, waking up patients, bleeding everywhere. Paramedic went to labour ward himself after arguing with sister, to get me gas & air and when he got back he moved me into a side room. Told nurse I wanted to push and was told I didn't. (no examination) Told them again and was told "you can't want to push" delivered my baby 10 minutes later, amid a lot of panic as they 'didn't realise'. Retained placenta (again had told them I had suffered from this before and needed preventative treatment as in my notes, but was just shushed) After a painful hour of pulling and tugging at the cord DH had to shout at them to stop and insist on surgery. Agreed I could have surgery in the morning. DH went home to sleep, I was left in a side room, without so much as a check from an hca from 4am until the anaethetist came at 10am. And then nothing more until they collected me for surgery at 12.30.

When I did complain a few weeks later, the only explanation I got was that my situation was unusual and the staff were very upset!

Sorry about that rambling mess, that's the first time I've spoken (well spoken/typed all the same!) about that miscarriage since it happened 5 years ago, might just need to go and have a moment now.