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...

What chance is there of renaming "evacuation of the proceeds of conception" it sounds so clinical and horrible and wrong. For a lot of parents who miscarry, they have lost a baby and hearing their much wanted son or daughter referred to as "proceeds of conception" is, imo, cruel.

and "counselling" has two Ls

Can we include the treatment women get after having an ectopic pregnancy. I had one 3 years ago, it ruptured which meant i lost a fallopian tube. After my op the doctor brought these forms to sign they were to give permission for them "to dispose of" the fetus. He said " these don't really apply to you, there more for women who have lost a baby, but i have to get you to sign them anyway2 It was though because my pregnancy had been ectopic and ruptured then it didn't really count as having lost a baby. I will never forgive them for treating my little lost baby as if she was just clinical waste

I agree with all the points raised but can I also say it is a very good code and it would have made my experiences much more bearable if it had been in force.

Here's my contribution to pedants' corner though - you don't need to put EPU in full in point 2 as you've already abbreviated it at 1.

Also - could you put the link to the code in the OP? Don't know if that's possible but with a wealth of responses, it will get lost in the flurry

I remember having an ante-natal admission when preggers with DS2. There was an A4 book on the desk at the nurses staion with 'Bereavement Book' in big letters for everyone to see

The woman in the room next to me had had a 16 week miscarriage. Her and her husband had to wait ages to be discharged by the OB registrar and they coudln't see the bereavement midwife because it was a BH w/e. She was sobbing, they wouldn't let her go to the mortuary and she was screaming that she wanted to hold her baby . In the end, when the registrar arrived, she bollocked the nurses and arranged for the couple to eb taken to the mortuary the next day. The whole thing went on for ages and her crying haunts me to this day

A much needed campaign. Also think NHS Direct and out of hours doctors need to have an accurate database on where women can access EPUS. I discovered that they are very ignorant in this area. Had to do my own research when trying to access a walk-in clinic. Women with at-risk preganancies should not have to hunt down their own health care.

load of good points on here but the one about going direct to EPU not the GP is very valid. I had to phone up crying to ask for referral for scan after waiting for 2 weeks with no luck.

also echo the point about EPU or hospital faciliteis being away from normal antenatal stuff- I'm sorry but is it some peculiar form of torture that you shoudl be made to endure this when you're at your most vulnerable?

Training on appropriate responses for all staff - including receptionists etc. Being told when you're going in to deliver baby at 21 weeks that you can't have a car park ticket as that is for people who are actually babies is not what you want to hear. Agree re pain of pain comments like Its very common , you can try again all being barred

Having had 2 miscarriages there are a few things I would have found may the experience less horrible. My first was a missed miscarriage spotted at a 10 week scan, After the scan I went to the gynae ward and saw a nurse quite quickly who who told me all my options (i.e. ERPC, wait for it to happen naturally or medically assisted). However I was then given a side room to wait in for hours the doctor was on call in the labour ward and so couldn't get to me in the ned I got fed up and told the nurse I wanted and ERPC adn she finally agreed I could go and call back to speak to the doctor - such a relief to leave the cold sterile atomosphere of the gynae ward. I also dislike intensley the term ERPC (evacuation of retained products of conception) I had lost my baby not a product! Agree with others scanning at weekends would help. Also as far as I remeber the only person at the hospital who ever said they were sorry was the person who did my scan, a little more empathy I know it is very common and they see it all the time but it wasn't an everday occurence for me or my DH - thank God.

Someone has probably said this already, but Is it really necessary for the consent form which you fill in for an ERPC/D&C to contain the question "is it possible you might be pregnant?"

Agree with comments re scanning/sonographer availability - understand it's an expensive resource, but only having it open for 4 hours per day creates bottlenecks in a number of clinics and wards around the hospital, particularly at weekends. Many more patients could be seen, treated and discharged (meeting government targets and getting more funding for the hospital) if they worked more/different hours.

Thank you mumsnet for listening to all of our pain and finding a way to help other families not to have to go through it.
I really hope that it makes a difference.

Point 8 should appears twice

brilliant

but point 8 about all women who have miscarried at home be offered a scan to check that everything is gone once the bleeding stops, is a contradiction and needs rewording

if you wait till the bleeding has stopped you would not highlight any problems.

bleeding has stopped indicates it is complete and would therefor not be clinically necessary (think funding - you would find it difficult to get this one agreed to)

a scan is indicated when the bleeding is prolonged so you need to set a realistic time frame if you want this included, 3-4weeks maybe.

actually still too long 2-3 weeks, maybe....

and about the leaflets, their is policy that we should be giving out leaflets for everything these days, so this just needs to be re-enforced and with the content that needs to be given laid out so that gynae units can complie their own

i don't think i'm explaining this point well, so i hope you know what i mean!!!

yes this is fine - agree with other's typos - Happy to help with leaflet still- carriemumsnet i have namechanged,

This is a summery of the care I recieved here in Belgium, which I have no complaints about at all:

7 weeks pregnancy: Started bleeding at home on a saturday which was also a Belgium public holiday. Went straight to A&E and within an hour I was seen for an internal scan by a junior gyneacologist. Also blood tests taken for hormone levels, recieved results within four hours. Blood and scan results put pregnancy at about 5 weeks, and was told to come back two days later for further blood tests.

I miscarried the following day, at home.

Still bleeding heavily and was in pain six days later, emergency GP appointment, GP sent me for another scan that day which confirmed miscarriage was complete.

This is the standard of care which all women are entitled to.

Hello. I wonder if anyone can help. I am 8 weeks, 2 days pregnant, and had a lot of bleeding last night. I think I've probably miscarried, although the bleeding has now stopped.
Today I went into A&E, and was told I couldn't have a scan straight away. As I was away for the weekend - staying with friends - the A&E wasn't in my local area. Now I'm back home, and want to know how to get myself a scan tomorrow - I want to know asap whether I really have miscarried or not. The not knowing is terrible. I rang my hospital, and they said I had to go through my GP first, tomorrow morning. Or go into casualty tonight, although they can't guarentee I'd get a scan, and might have to ask me to come back. Is this a crazy system? I probably won't get to see my GP until the afternoon tomorrow, and then I'll have to wait until they contact the hospital etc. Why won't anyone help? Should I just simply go private, and pay for an urgent scan tomorrow? The system has me foxed - anyone else know how it works?

I am sorry to hear of your stressful situation stoical. Could you explain to your gp over the phone and ask for an urget referral to the EPU at your hospital? It seems very strange that you weren't referred for a scan by A&E. Sorry I don't have any more suggestions, just didn't want to leave your post unanswered.

can i just mention, as someone who has never experienced a miscarrage, how horrible i feel for everyone here who has a story to tell; and how proud i am to be a member of mumsnet - i think it's amazing that we all have the opportunity to contribute and to hopefully change things so that women are treated quickly, respectfully and with humanity at such a devastating time.

Thanks for all further points, typo-spotting etc. We're editing right now and will post final version soonest and get it sent off to the right people (Scotland included).

Ok so here is the slightly re-jigged version taking into account your recent comments - we'll send it off to the UK health ministers tomorrow and we'll let you know what they say.
Thanks again everyone for your input.

Just found this thread - maybe too late for my comments and I may be repeating but as someone who has suffered 8 miscarriages I have had lots of experience. Things I would like to point out

• not having to go through A&E for scan
• drs etc not insisting on internal examinations (it took me a few m/c to assert myself enough to say I didn't want fingers poking around in an area I was already worried about)
• Drs to suggest a time of recovery from work - particularly after ERPC - nothing worse than going back in and trying to put a brave face on it when your world has collapsed
• scanning away from 12/20 week scans
• proffesionals showing compassion - you don't care how many m/cs they've seen that day - to you it was the world
• giving more choice before ERPC offered. My research showed that you were no more likely to develop infection if allowing natural m/c than erpc
• DO NOT CALL IT A MISSED ABORTION OR SPONTANEOUS ABORTION!
• encourage people to name their lost baby - no matter how short a time he/she had been around - I subsequently named mine and it helps
• offering to give you a pic of the baby if you wish (I still think about the scans and almost wish I did have a pictorial memory for my own personal memorial)
• sonographers using better language to inform you of the news
• I (was being nosy and) read in my notes the sex of 2 of my babies - I found that reassuring
• more clear info on when to try and again
• empathy - al the way, I put getting through my last 2 succesful pregnancies without becoming a total nutter down to being treated with the utmost sensitivity

and compassion - when I was neurotic I was given such a kind response that I stopped panicing.

• obs not using expressions like "oh bad luck"
• involving the fathers more in the whole process and afterwards offering them support

I have had some amazing contact with professionals and some horrific contact over my 10 years of suffering miscarriages. I am so lucky to have 3 fantastic kids now but I think I still remember every experience like it was only a little while ago.

I am delighted that something that is such a big part of our lives is getting some proper attention.

whoops just got to the end and saw its already done! Anyway gave me a chance to vent a little frustration!

In addition they also need to respect that woman deal with MC differently.
I've had two and the 2nd one in UK and they made such a fuss it was more traumatising.
They made me come in for a blood test to see whether I'd miscarried. Now if you've had one, you know that you have so why push so hard and be called 4 times to ensure I came in. Just leave me alone to deal with it!!
NHS direct phone line, told me I was being "deliberately uncooperative and unhelpful" because I couldn't tell them the postcode of where I was working and as I was bleeding and blubbering in the toilets I did not want to go out and speak to the client on site to find out the postcode before I could speak to a nurse to get some info. Horrific.
My overall thoughts is that MC is very very very common and woman deal with it in so many different ways. I feel strongly that there should be flexibility in the system to allow women to lead how they are dealt with, and D&C should NOT be something that is pushed for unless actually needed - which for my two it was not and I really had to fight to make that known.
But I agree that the most important thing is to be treated with dignity, empathy and respect.
A MC support group with mums in a local area would be helpful, almost like an NCT coffee group where women can debrief with women outside the hospital system.

I have "only" had 1 miscarriage, but from my experience I would have liked not to have been treated by a pregnant doctor!
I now know that I also needed counselling afterwards and nothing was offered at the time.
After the scan that showed that everything was out, the doctor was so cheerful I just wanted to scream at him.They do their jobs and focus on the physical stuff, but what about the rest?

Totally support what has been pulled together to be sent on- particularly the plea to have EPAU away from other pregnancy sites- was awful having to sit there surrounded by pregnant women with magazines on pregnancy and babies being the only ones to read while waiting. Also- out of hours scans- waiting till the morning when I started bleeding late Sunday afternoon was the longest night of mine and my dp's lives. Might be too late for my comments, but perhaps you could add more weight to the offer of putting together a pamphlet- there was such a dearth of helpful info- so perhaps this could be a demand for funding for the pamphlet, rather than an offer. What I found hardest was nooned could tell me what to expect and it was so hard to track down info. I know everyone's miscarriage is dfferent but some information about the range of experiences would have been good, quotes from other people etc- I had no idea how much it would hurt and how much I would bleed- I didn't know what was normal and when/if I should worry.

-And maybe some consideration for the hubby/partner... no, not probably what you're thinking, mine just never got to understand how awful it was for me to lose my identical twins & so I could never grieve, be myself, cry openly knowing there was a hug or sympathetic heart next to me. He just went off about his work, continued with meetings etc. after one initial token hug.
My point really is that a separate chat by a professional to the partner could do alot for the bereaved motherin the upcoming weeks & mths.
Great topic, huge sympathies to all those who lost their long hoped pregnancies before they would give joy.

In relation to the "when does life begin" i really think it's the indvidual's belief & thus has an impact on the feeling of loss thereafter if something happens. For me it started the moment I was aware I could be preg. Hence perhaps the feeling of sheer loss..i have wondered if i didnt believe life didnt start as a 'baby' til 24 weeks would my 21 wk preg. have been more bearable to lose(??).