MNHQ here: the Mumsnet Miscarriage Care campaign - UPDATE

[RowanMumsnet]

Hello all

As lots of you will know, Mumsnet has a long-running campaign to improve the quality of care given to women who are miscarrying or experiencing other forms of pregnancy loss.

Over a period of five years now, we've been running regular surveys of women who have miscarried or experienced pregnancy loss - so we now have a rather nice data series tracking NHS users' feedback on miscarriage care.

Today, we are releasing the results of our most recent survey: you can read all about it here.

It shows quite a solid trend of improvements in some aspects of the care given in hospitals, which is great news. So if you've previously taken part in the campaign, please give yourself a pat on the back.

It also shows, though, that women who are sent home from hospital to miscarry - known as 'expectant management' - are reporting much patchier care. Many tell us that they are sent home with little or no information and (again) little or no pain medication - and that few are offered follow-up care.

Given that expectant management is the recommended care pathway for many women who are miscarrying, this is obviously concerning and we will be keeping an eye on the situation and thinking about ways we might be able to encourage change for the better. As ever, your ideas and feedback on that - and on anything else - would be hugely welcome.

Many thanks to all who took the survey this year, and to those who've taken them in the past. We know it can be upsetting to go back over the experience and we really appreciate your input.

Thanks and
MNHQ

Thank you for sticking with this issue. It's so important.

The main issue for me is being alongside women in full blooming pregnancy, chatting about nice baby related things while I was waiting for my 4th scan to see if my pregnancy was viable, it wasnt.

Had also waited in the same waiting room 9 months previously, in pain with a suspected ectopic, which it was.

Icing on the cake was waiting for DH to get the car and having a woman wandering around in front of me, huffing and puffing in early labour, not her fault but like being slapped in the face.

Yes I agree ElsaMars. I also didn't particularly appreciate being invited to my anomaly scan, weeks and weeks after my pregnancy had failed

While waiting for my ERPC (for 5 hours) I had to listen through a curtain to several women be told that they had miscarried and then go through all the options. Bad enough having to deal with your own loss, but having no choice but to listen to other people's terrible news just compounded it.

Then the ERPC failed and had to be repeated a week later. I was told by one doctor that the "Hoover wasn't strong enough to get it all out". And then the surgeon failed to acknowledge me while I was lying on the table, and placed all the scans on my body and discussed them with his colleagues like I wasn't there. The situation was never going to be great, but being treated with some sensitivity would have made things a touch easier to deal with.

I'm also happy mumsnet are still sticking with this issue. I have had seven mc with no live births but each time I've been treated with such kindest.

I read other women's experience and I feel extremely lucky with the care I have recieved, when in reality every woman going through this heartbreaking ordeal should be treated the same as I have been.

Very sorry to hear of your struggles Penguins.

Is it also looking into the 'diagnosis' and treatment of recurring miscarriage?

I know 2 people who have had this happen repeatedly because of 'killer cells' (sorry don't know the medical term) but the NHS often don't recognise it or see it as a possibility because they say it's so rare.

Person I know went private to find out they have it. Other person eventually medically treated as if they do have it is now pregnant after 6 miscarriages.

Sorry if this doesn't make sense DD is distracting me.

Hi there
I am so sorry for all of us who have had to go through this terrible thing. I just wanted to highlight to the campaign an area of the country where the PSC and EPU could genuinely not be better and could be used as an example. I have had to attend the epu at Edinburgh royal infirmary twice now. There is a separate waiting room (so you aren't surrounded by heavily pregnant women) the waiting room has flyers and leaflets for miscarriage support services in the area, the staff are kind and sensitive, they treat you with dignity and respect and they take the responsibility for contacting my GP and the midwife service to cancel any upcoming booking in appointments and scans, which is enormously helpful. I am just back from my GP this morning as I had to attend to get a note for work and we didn't even have to have the conversation about why I was there, she knew from my notes and was very sympathetic and kind. I find the less times you have to have the conversation about what has happened the better so the fact that this service is "joined up" is really good. Also the rooms are completely separate consultation rooms where you aren't just behind a curtain with loads of other people around. I know that other people may not have always found the ERI as good as I have but it does sound to me from reading others experiences that they are really heading in the right direction.

Miami that sounds a great deal better than the service in my area

I was also put in a tiny waiting room with a very pregnant woman who told me to "cheer up, it might never happen". I couldn't tell her I'd had a 12 week scan and there was no heartbeat.

I also had to listen to other women been discussed as the "office" was in the bay I was in - I even heard names of women who had problems after abortions!

My second MMC, six months later, was found in a private scan. I took the report in with me to the NHS scan I had to have to confirm no heartbeat. I was sent there by the EPC so there should have been a note on the referral to explain why I was there but the scan woman didn't bother reading it or the private academic report and came into the room all cheery and I had to explain why I was crying. (I had also scared a little child in the waiting room for the scan as I was crying sat with all the pregnant women.)

BUT the worse thing was being told by the anaesthetist on my way in to theatre to have a second ERPC that there was nothing to cry about. That has stayed with me more than anything else. These experiences were three years ago, I really hope things are improving.

I've very fortunately never miscarried myself but I am close to a few women who have. Just wanted to say thanks mn for keeping at this, the care they received was abhorrent and compounded an already stressful time for those women.

If anything could be done so that more women don't have to suffer like they did I'm right behind you 100%

Mawwdy I'm so sorry hear you're care was so poor. Very similar to the women I know.

Nothing to cry about though? Good grief the mind boggles.

I also had good care, at the Royal Stoke University Hospital.

I went to my 12 week scan, not expecting any problems, but discovered no heartbeat. I was taken a different route out of the scan room into the EPU, so never had to go back to the main waiting room where the happy people (of which I had been one, minutes before) were waiting. Was treated sensitively, my options fully explained. There is also a separate exit from EPU, completely circumventing the main waiting area. I opted to wait for nature to take its course, and they had me back in regularly for scans to keep an eye on me, and the EPU waiting room is full of useful info and the staff are great. My only gripe is often people had their young children with them, which was upsetting, but I don't know what could be done - two separate waiting bays perhaps? My body didn't want to co-operate, and absorbed the baby but never expelled the now empty sac, so I ended up with an ERPC. Was given a side room, and DH was able to be there the whole time, and when I came around afterwards sobbing a nurse pushed a tissue into my hand. I'll never forget her, though I don't think I ever saw her face. The main upsetting thing was seeing my miscarriage written on my notes for my subsequent DC as "missed abortion" - it wasn't a fucking abortion. I know it's medical terminology, but it needs changing for the benefit of patients. "Miscarriage" is unambiguous.

Overall the experience although horrible was not handled badly but was congratulated by the A&E doctor on being pregnant whilst she carried out tests and the consultant who carried out EP scan did go on to tell me not to be upset because at 9 weeks it wasn't a baby at that stage. So maybe a little bit of senativity when handling potenital miscarriage is needed
But my main problems was no one explained exactly what would happen when you have a miscarriage. My baby died at 6 weeks and I miscarried at 9 during which time I started to bleed and was refered to North Middlesex EPU. At that time I had not miscarried but no heart beat could be found. I was booked in 2 weeks later for a secondary scan to see if the conclusions of the first scan were correct but no information to given to me about what could / did happen in the meantime.
Obviously I knew I'd bleed - but no told me the levels of pain or what to expect - I went back to work to try and take my mind off it and ended up miscarrying at home that evening, but no one warned me how painful and not wanting to be too graphic, how messy it would be. I had no idea. Maybe some sort of literature or even advice should be given in these situations as I ended up passing out on the bathroom floor in extreme pain, bleeding heavily and having to be put to bed by my extremely concerned husband unsure whether to call an ambulance or not. This could have happened whilst I was at work or on my own. Whilst I understand no two women will have the same experience I feel I should have been warned of what could possibly happen in order to make myself safe.

Sorry to read everyone's stories

When I had a miscarriage last year I was put in a room for 14 hours and left to get on with it. If someone had of just looked at my bloods, which I later found out had been returned less than hour after my arrival, they would of known what was happening as my hcg was less than 100 and I was in fact in the end stages.
I felt terrible and as if noone cared.
I was sent home without as much as a leaflet.
I saw my nurse practitioner the following day and she was fantastic in letting me talk and ask questions.
BUT it now seems my hospital have made some changes. I am currently pregnant again and have had a small bleed, within 2 hours I was scanned, had bloods taken and given an action plan.
The care o recieved recently was amazing

User148 I completely agree with you about the information on different experiences so you can understand if you are going through something in the realm of "normal". I had always heard mc referred to as being like a heavy period but in fact twice I went through full labour at 9w. Both times it was written on my post-treatment report that I "experienced period-like cramps" when in fact it was 6 hours of contractions increasing in speed and intensity until I felt the urge to push and passed the foetus - basically my body giving birth very efficiently but terrifying when you have no idea what's going on and no access to pain relief as you would in a real birth. My other two mc were earlier (5w/6w) and more what I had been led to expect in terms of pain and content, but it feels like doctors are reinforcing this belief that that's all a pre-12w mc is.

Sadly my one live birth was not nearly as efficient and he was born by CS. But he is wonderful and I am grateful for him every day.

By the way these were all in the last 2 years. Also the treatment and kindness I received at the hospital was amazing. It was just the lack of information about what was happening and the report afterwards which let the system down and has really affected my emotional recovery.

I still, 2 years on from a MMC feel bitter that I had to get the information on what expectant management would be like from mumsnet and nothing useful at all from the little photocopied leaflet. There needs to be more realistic information given to women when choosing which option and not just glossing over how painful and messy it is to pass the foetus at home. Fortunately thanks to the information on a thread on mumset I knew to arm myself with all the painkillers and pads and bin bags....'some heavy bleeding' did not cover what I and others experienced. On the plus side I'm so glad that i didn't have to stay in hospital for it and was able to be at home and the EPU care was very good

I had a horrible time. I had a MMC in February this year and had surgical management.

I needed DP with me desperately, but he had to wait in the waiting room. I ws wheeled intot he threatre sobbing my heart out. One of the nurses said to me "aw don't worry, it's not the end of the world" I will never ever forget those words.

I woke up feeling cold and shivery and totally alone, ina ward with two maybe three other women who I assume had just been through the same thing. I also felt like the sheets were drenched in blood (they were).

I had to wait until I had recovered to see DP. Then I was sent home and heard nothing more. No check up to check my physical and mental state. The only correspondance I received from the hospital was antenatal appointments. Several reminders in fact. I complained and finally the head of department stepped in. She promised to tell me the outcome but never ever got back to me.

I am still a mess now mentally. I have had to seek help independantly and am finally on a waiting list for counselling 10 long months later

Horrific experience.