Miscarriage campaign - next steps

[JustineMumsnet]

Hi all

As many of you will know, we launched a miscarriage campaign a while back to try to do something about the awful experiences that some women (and their partners) have when they miscarry. We came up with a ten point plan, and since then we have been lobbying relevant bodies to get these issues looked at.

Now that we've given the new government a few months to bed in, we reckon it's time we started making a bigger noise about this in government and Department of Health circles. Before we do so, we wanted to run the Code past you one more time. Do these ten points still represent the most important issues, in terms of where healthcare professionals could do better in miscarriage care?

Do let us know your thoughts.

Yes, I think that from the posts on MN, change is desperatly needed. Too many women are sent home with no idea of what to expect, or what to do

I had a miscarriage at 12 weeks while living in NZ and over there you have surgery etc in day surgery - I was not exposed to other pregnant women at all. Much better than friends' experiences here. Also the hospital phoned me the next day to see how I was doing.

Yes, they are still points that need addressing. In my experience a couple of months ago;

Access to scanning facilities in the case of suspected miscarriage should be easier. When you know something is wrong it's galling and upsetting to be told your concerns aren't serious enough to be scanned. When I eventually was scanned, my baby had died 5 weeks before, that's 5 weeks of hell I could have avoided. I knew throughout that 5 weeks that all wasn't well but no one wanted to know.

Women undergoing miscarriage or suspected miscarriage should be separated from women having routine antenatal and postnatal care, or women terminating an unwanted pregnancy. IME this is the most important thing. I sat in a waiting room for over 2 hours with massive bumps, newborns and cheery promotional videos. I was waiting for my ERPC. There must have been better places for me to wait.

Consideration should be given to renaming the surgical procedure Evacuation of Retained Products of Conception (ERPC) as many parents find this confusing and upsetting. Every single HCP that I dealt with apologised for the horridness of this term. So why the hell do they use it?

Of course the other points are very important as well but purely speaking from my own experience, the above were the three that upset me the most.

Definitely things need to be improved.

The things that upset me most, after 2 mcs, one natural and one missed, was that I was stuck in a room with pregnant or early labouring women.

If mc begins out of office hours in my county you have to wait to be scanned the next day as the scanners only run 9-5. I was rushed into hospital on blue lights with suspected ectopic at 13:30, was left until 18:30 when I was told it was too late to scan and I had to be admitted and scanned the next day, on a ward with heavily pregnant women. Luckily all was fine. But things could have and should have been dealt with much more promptly.

I had to have the ERPC for my missed mc, and on the day of the "procedure" I found the nurses and doctors to have no compassion whatsoever. One even came up to me cheerily asking what I was in for.

The question I have though is: Is the money there for anything to be put in place? Are they really going to rearrange hospital waiting areas to spare our feelings? Unfortunately I expect it'll be too much to ask to have some compassion for the life we have lost.

I've recently suffered 2 miscarriages in 4 months and have started my own local campaign to improve services. For me the most important thing is to get same day, or at worst next day scan when suffering symptoms of miscarriage. The worst part is waiting for an answer.
I'm not sure if you are aware but Nice are currently reviewing and consulting on guidelines for early pregnancy care. In my opinion the reason so many hospitals have such poor services is because they have no standards to follow so can get away with low funding levels. I'd suggest directing the campaign to Nice so they can set national standards equitable with what you suggest.
Another thought is that services are currently commissioned by pcts, which will be done by gp consortia in the future. These would be good organizations to lobby with these standards.
Finally, MPs will respond to direct complaints from their constituents on services, once the standards are agreed could all of us who are unhappy with services at our local hospitals ask our MPs to lobby hospitals for them.

I think women over, say, 35 should be referred for recurrent miscarriage testing after two rather than three miscarriages. Waiting to get pregnant again and suffering a third miscarriage can take a year or so of an already dwindling window so to find out there was a specific reason for miscarriage that could have been prevented with the right treatment protocol is not particularly helpful if it is too late.

Having been lucky enough to be referred for NK Cell testing on the NHS and having read the leaflet that tells me that Immunity issues account for about 50% of miscarriages, I feel that the NHS should seriously consider making NK Cell testing more widely available. Perhaps not as a first step but certainly as the next stage if no cause is found as a result of the current standard tests available.

Management with tablets should be offered as a matter of course. I have never been offered this option and I have had 4 miscarriages. I would definitely have chosen this over surgery. Also consultants when offering ERPC under local anesthetic as an option should not be allowed to tell you it doesn't hurt. It was one of the most painful and upsetting experiences of my life!

Every single point of the code is totally relevant.
I particularly think the point 4 "Waiting times in confirmed as well as threatened pregnancy loss, but, in particular, for women who need surgery, should be kept to a minimum and not be spent in antenatal or labour ward settings." I waited two days for a scan after losing ds2's twin. It was hideous. I've had several mc's and I'm not even going to start telling you the catalogue of things that could have been improved.

I don't see it specifically pointed out - but I think that mums who have had a mc are far more likely to get pnd, and so should be treated as high risk (without it being discussed too much as a 'likelihood', that they will have it, obv) All the friends I know who had pnd and obviously myself, had both. In some ways it's an obvious link, in others maybe it's not necessarily going to follow. Being monitored would help. That said, your proposal for counselling for those who want to take it, may just avoid it to some degree for some people. In my case nothing worked, and the pnd got worse each time, including after some of the mcs.
I've had 'natural' ones, managed ones, ERPCs, and some when I didn't even see a doctor. It was all horrific and there is no 'right' option. And they trivialise it. I am sure that to an experienced medical professional it may be an everyday occurrence, but it's still my baby. They may well see so many that they think "another one" but maybe try to appear that they care a bit. And more support during pregnancy for known recurrent mc-ers.
I've never put it all down in one place like this before, but a huge thank you for trying to get something done. I won't need it again thankfully but I think it's essential that mums are treated better than this.

I also think the 3 consecutive mcs needed for a referral is also something that could be looked into, as Kittens had said. I don't think it is fair to change to rules for women over a certain age but across the board. If a woman has had 3 mcs referral should be put in place regardless if a child has been born in between.

i'll read your recommendations in a sec, but really want to echo wha leningrad says about the agony of a medically managed early miscarriage, ie tablet. I was told, like many others to go home and wait for period type pains. Instead i went home and ended up crawling across the bedroom floor at midnight with full on agonising contractions. Horrific. I've heard many women say the same. This offer to be addressed.

i was the same voddy and was told to get some paracetamol for pain.

so when i had pain which were contractions and went to hosptial for gas & air, morphine, tramadol and co codamol...i thought i was dying.

It isnt "period pains" which is what i have been told for all 5 of my mcs.

period pains does not even come close.

This needs to be addressed.

Also, the nurse who was working that night in the Women's Hospital told me it was very common for the contractions to be so excrutiating due to the womb contracting but there being virtually nothing (at that stage pregnancy) for it to contract around.

The Code is you have put together is excellent.

Yes, proper pain control should be a consideration for women while miscarrying. When ladies are deliviring after 24 weeks, there are no restrictions on pain relief.

I don't have anything to add but I want to be on this thread. I agree with all that has been written.

Sympathy and tact are so important.

I'm so glad the sensitive comments was mentioned first. There should be a way to communicate that is honest and direct. Miracles do happen, but they should say, the likelihood is not good for your pregnancy if things don't seem to be right. Don't give false hope or be all doom and gloom. There has to be a better way of handling it. You shouldn't leave the EPU wondering what is going to happen next when you are miscarrying or threatening to miscarry.

The horrible things that were said to me at the local EPU will stay with me forever. "Women these days have early miscarriages instead of late periods" during my first miscarriage. Also, having a medical student in the room and the EPU nurse whispering to him whilst I was dressing after the scan in what would result in my third miscarriage. They weren't honest with me at the follow-up scan when they said that the heart rate was slow and the growth rates weren't fast enough. After I wished her a Merry Christmas, the nurse told me "I would wish you a Merry Christmas, but..." I didn't know what was going to happen. I had to go home and google it and realise that I was going to lose my pregnancy sooner or later. They insisted I come in for a follow-up appointment in the new year after I lost it. I said that it wouldn't be necessary as I had been through all of it before. When I arrived, they wondered why I was there and more or less accused me of wasting their time. It still makes me angry, three months on.

Good luck MN in giving us our dignity during one of the darkest moments of our lives.

coconuts - Ideally, yes they should test across the board. I only said over 35 because I suspect they have a limited budget and that maybe if they wouldn't consider allocating the budget for general testing they may at least consider it for those on a 'time limit'.

I didn't realise medical management was so awful, hence my comment earlier. I have known a couple of people have medically managed abortions for their unwanted pregnancies, (which I'm not sure if the same form of tablet as that prescribed for miscarriage management) and not suffer that badly at all. I assumed it would be the same form of medication as essentially, despite the emotional motivation, it performs the same function. Perhaps they were lucky with their physical reactions. Sorry to mention abortion in this thread, I don't mean to be insensitive. It's just that I have always wondered why they didn't deal with missed miscarriages in the same sort of way rather than surgery, which carries risks of uterine scarring and possible fertility problems as a result.

Any mention of counselling or other support would be a start. I was fortunate in having already discovered MN before my mcs stared, don't know how I'd have coped otherwise. No mention at all was made of this by EPU or GP, the Miscarriage Association or SANDS could have been brought up but nothing was.
I think the points are very good. We have a good EPU but it is in the same place I went into to have my DS. Not nice at all.
The one I doubt anything will be done about is in relation to testing. I imagine scans and ERPCs cost the NHS money, so couldn't some blood tests actually save them money?

I think maybe it's like birth, Kittens, everyone's experience can be different. I have read on here about women saying that it was like quite bad period pains. But honestly, the pain I experienced literally floored me. The contractions I experienced on synoticin (sp) during induction were about the same level of pain. My husband was traumatised from the drive to hospital - I was vomitting, wetting myself and contorting all over the car trying to relieve the pain. Like Cherrychoo I ended up with gas and air, morphine, tramadol etc.

We just were not prepared for it and he thought I was dying or something

Just wanted to second some of the comments here and add support to the campaign. It's a great idea to keep pushing for this Code to be implemented in all NHS hospitals for all women. Two things in particular:

1. The waiting room area - there REALLY needs to be provision made for women who may receive bad news from a scan or have received bad news and are waiting for a post-loss scan or are waiting for an ERPC. Instead of lumping everyone together they should take special care for miscarriage and treat it on the gynae ward only. I had a MMC at 11+5 and had a really horrendous natural miscarriage where I ended up in A&E. When I was waiting for my scan the next day to ensure that everything was clear, I had to sit in a waiting room full of women in later pregnancy, happy couples walking out with their healthy scan pictures etc. I actually broke down and got very upset with the staff - that can't just have been upsetting for me but also for the healthy people waiting and for the staff as well. There has to be a more intelligent way of handling this.

1. Realistic expectations about natural miscarriage: like Voddy says above, natural miscarriage at a later stage can be extremely painful and a few ibuprofen or co-codamol, as I was given, won't cut the mustard. DH and I still laugh bitterly about the '2 to 4 hours of intense pain' mentioned in the NHS information leaflet. More like 8 hours of intense pain and 4 hours of real contractions that had me crawling around on the floor screaming. I was in total shock and thought I was dying or haemmorraghing because the pain was so horrendous - nowhere near '2 to 4 hours of intense, period-like pain' - but when I finally got to A&E and saw the consultants, they said that my level of pain was not abnormal and is common for MC at that stage. The gynae nurses said the same thing. If that's the case, why not warn people so they can make an informed choice instead of pretending that natural MC could be managed at home with ibuprofen, as the leaflet claims? It's a difficult situation, I appreciate, because doctors don't want to scare or upset you but really bad pain is a possibility with natural, later MC and people should be aware of that.

Anyway, keep up the good work. I think some of the points on the Code are being implemented already e.g. on understanding that MC is a bereavement and on access to scans but it seems like there is a still a lot of variance between hospitals.

Mixed day wards (UCH - London) are not an appropriate place for patients coming in for ERPC procedures. .

Yes, the pain point needs to be addressed. I think that could be covered off in the leaflet but really, if you decide to have a natural MC, they should prescribe some bloody good painkillers. I was in agony on and off for three days which really wasn't what I'd been led to expect

Completely agree with comments about pain. Usually described as 'like strong period pains'. Yes, they can be like that, my first was, but my second was agony. I have never had pain like it. Proper pain relief needs to be prescribed so it's on hand to take when needed.

When going in for ERPC they should ALWAYS give you the option to have your partner sit with you.

Definately separate waiting areas.

Staff need to step away from the medical model when dealing with loss and recognise that it's indiviual to each person.

i'll read your recommendations in a sec, but really want to echo wha leningrad says about the agony of a medically managed early miscarriage, ie tablet. I was told, like many others to go home and wait for period type pains. Instead i went home and ended up crawling across the bedroom floor at midnight with full on agonising contractions. Horrific. I've heard many women say the same. This offer to be addressed.