Our Miscarriage Care campaign: NEWS

[RowanMumsnet]

Hello

As lots of you will know, our long-running Miscarriage Care campaign asks healthcare providers to implement our five-point Code of Care - based on MNers' experiences and views - for all women seeking healthcare for a miscarriage or suspected miscarriage. (Lots of the points are also applicable to women experiencing stillbirths and ectopic pregnancies.)

We recently ran a big survey to see how things are looking, and next week (commencing June 16) we're going to be kicking up some noise about it, with a strong ask to national politicians in the run-up to the 2015 General Election. So please watch this space and get your sharing fingers ready...

We also wanted to let you know that we've made some changes to Point 4 of the Code, to reflect the fact that the ERPC procedure has been renamed (which was one of our campaign aims), and also to reflect the fact that lots of you feel strongly that women should be allowed to choose surgical management of miscarriage if that's what suits them best. You can see the new version here.

And finally: our hashtag for previous versions of the campaign has been #bettermiscarriagecare, but frankly that's a bit long. So if you have some ideas for short but arresting hashtags, now's the time to give us your suggestions.

Thanks very much - as ever, please let us know what you think.

[IceBeing]

miscarriageaid is one letter shorter but not better I think.

[GarlicJuneBlooms]

#miscarriagecare is totally to the point, I think.

[Catlover2014]

#miscarriagecare gets my vote!!

[Blondieminx]

%23miscarriagecare also conveys that women losing a baby need to be cared for; it may be another day at work for the scans receptionist - but for the woman losing a much wanted baby it can be one of the worst days of their lives. A kind approach costs nothing and makes so much of a difference at a very difficult time.

Well done MNHQ for your excellent work on this campaign

[Blondieminx]

I have no idea what just happened with the hash tag there?!

[Igggi]

If it wasn't for the character count I would say miscarriagematters is better - more memorable, and more of a rallying cry - miscarriages do matter to the couples experiencing them and should not be treated dismissively by those working with them.

[oohdaddypig]

Well done Mumsnet. I think you are handling this brilliantly.

I'm very aware that services for miscarriage are even further behind in Scotland and it would be wonderful if the UK government could give this a UK wide focus (which I appreciate could be difficult politically).

I also agree that access to weekend scanning is essential.

I also agree that if you suffer an early bleed, you are very much given a reeled off script to get rid of you, no matter how distressed you are. I know resources are tight but if you suffer early pregnancy bleeding and need a scan, your only option is to go private.

[rascalrae]

If you were looking for examples where good care is offered, I was overwhelmed by the kindness at Pinderfields EPAU. All the staff were gentle, understanding, warm. From the receptionist telling me I hadn't been forgotten as I sat with an uncomfortably full bladder, the way the sonographer broke the sad news, and the support for me in talking through my options. They were amazing. When I asked if I could have another scan to confirm there was definitely no heartbeat, they could have refused but didn't. I haven't had my surgery yet so can't talk about that part of the experience but will be providing feedback to the hospital on the great quality of care at the EPAU. Total contrast to my experience at St James in Leeds where there was no receptionist, I wasn't acknowledged, the staff barely spoke to me & they pushed me out the door after my scan as they were closing. Great care is possible.

[Monten]

Well done Mumsnet, great campaign. Having had two pregnancies end (one termination due to severe chromosomal abnormalities and one very recent mc) I can say that aftercare in my experience is non- existent.

This time after my Erpc I left hospital with not so much as a leaflet. Just a sheet of A4 paper headed 'Operation Sheet Discharge Notification' with lovely detail on it like:

Diagnosis: Early Embryonic Demise
Cervix: closed
Cervix dilated to: H9 (with ease)
Suction catheter size: 8
Products of conception to histology: yes

They can tell me the size of the suction used to remove the baby but they can't hand me a leaflet that tells me how long I might bleed for, how long a pregnancy test will stay positive for, or who I can speak to for more information?

I think the nhs is generally amazing, and the nurses were just lovely. But it's the admin side of things (having to wait for hours in waiting rooms for both procedures) and the aftercare that let's it down

[squizita]

As Monten mentions aftercare can be a real issue.

As can front-line A&E staff not understanding. I mean that clinically not just emotionally.

In my case my HCG failed to fall and started to rise after my surgical management. A&E thought this 'normal' and a nurse angrily told me I "can't just come in asking for bloods" and the A&E Dr came out with loads of inaccurate stuff in a patronising tone (before I explained I was a recurrent MCer so knew what he was saying was out of date because that very hospital's EPU had explained!) before the gynie on call was actually worried enough to deal with it. Turned out I had partial molar cells (can potentially lead to cancer) and was referred to the national centre at Charing Cross. They were cross that none of the follow up guidelines had been followed. It was surgery then discharge.

The EPU staff were great throughout, it was just the aftercare that was (in my case dangerously) amiss.

[squizita]

...I was in A&E as the rise even caused vomiting and shaking.

[squizita]

...clear/accurate information should include accurate causal reasons NOT JUST age. I have had different Drs with wildly different ideas (e.g. crazy ones like recurrent miscarriage is normal after 33 years of age... THIRTY THREE... chance of MC per pregnancy only reaches 50/50 at 42 for most women).
This misinformation about causes and the rarity of recurrent MC at GP and local Gynie level can prevent referrals to clinics (which ARE supposed to happen after 3 for anyone under 42).

[squizita]

...oh, and my EPU routinely does bloods/scan 4 weeks after ALL at-home losses. They say they have picked up numerous small issues such as retained products this way. (Which is weird why they don't after surgery).

Should this not be the national standard?

[bryte]

Well done. Keep up the good work with the campaign. It is 10 years ago this month that I had a 2nd miscarriage which ended in an emergency ERPC (horrid term - glad that's gone) because no-one believed me that I was bleeding so heavily. Even though I barely think about it these days - I fortunately went on to have a second child - when I do think about it, every detail of my experience is as raw and vivid as if it were yesterday. Whilst a miscarriage is never going to be a happy experience, good care, information and management can go a long way to relieve some of the trauma.

[squizita]

Just been over on the sense about science thread.

We still really, really need the 'official' guidelines on age out there or HCPs and the public. People still think at 35 it's 'something to be expected' leading to less sympathy, victim blaming and lack of testing. The risk - for non RMC women - only really rises at 38-42 according to specialists.

[Jenni2legs]

Thank you Mumsnet, great campaign. I'd like to echo - better general training for non-ob/gyn doctors - last month I went to E&A with intense labour type pains (but no bleeding) at 11.3 weeks and as I had a scan booked for 4 days later I was told 'it doesn't 'feel' etopic and to make sure I show up for the booked scan' and sent home. I'd had a missed miscarriage.

[Jenni2legs]

I prefer miscarriagematters as it has the double meaning of the 'matters' surround miscarriage being looked at and the actual 'this issue matters'. xx

[toobreathless]

Also prefer #miscarriagematters

I am a doctor working in obs and gynae. I totally agree with pretty much all your points but especially about the availability of surgical management. We generally aren't able to book ladies onto the emergency lists for sugical management and don't have any where near enough slots on routine lists so yes, in theory ladies have a choice, but might have to wait over a week or longer.

There is also some inappropriate terminology, not just 'ERCP' but things like our computer discharges summaries have 'threatened abortion' for 'threatened miscarriage,' you have to change it manually, Abortion' was the accepted medical terminology for over 100 years but is clearly totally inappropriate and should never be used now. I think the international classification of disease still use it.

Ladies should have a point of contact 24 hours a day once they start experiencing problems and are referred, or after having management or waiting for it. We give them the direct ward number and say any problems, increasing pain, heavy bleeding ring us anytime night or day and you can speak to a nurse, if the nursing staff is concerned they then can come in directly to see a dr.

[RevoltingPeasant]

Hi all, I am experiencing a threatened MC right now and I am so lucky that my experience has been really good.

I reported my symptoms to NHS direct and they referred me straight away to the OOH service who saw me quickly and were very through, and also just human and reassuring. They booked me in for an EPU scan on Monday without me having to ask.

Today I had a wobble and rang my GP. They had no appts left but when I said the word "mc" to the receptionist she put me on hold immediately, found the GP, and magicked up an urgent appointment two hours from then.

My actual GP was great too. She said bluntly that my chances were not good but I could call her any time and let me ask as many questions as I wanted.

I have never been pg before and so never experienced this but I cannot fault my HCPs and it is awful that not everyone gets treated the same.

[toomuchtooold]

toobreathless, one of the really frustrating things about not being able to get onto the emergency list for an ERPC is that if you're at MC number 3 and hoping for tissue karyotyping, good luck if you miscarry naturally while you're waiting to go in.

Would also like to see them bump you up the list for recurrent MC testing if you have some other risk factor than just the three MCs. Was told repeatedly that I wouldn't be seen until after 3 MCs because "even then 50% of women with 3 MCs were just unlucky". Well yes, maybe, but as my mother had unexplained recurrent MC, I think by the time I had my second MC I think we all knew it was pretty unlikely that mine were due to chance.

[Igggi]

I've never had any follow up to my mcs (4) unless I asked for it myself. It's no wonder the EPU seemed not to know how bad even an early mc can be, as each time as soon as they confirmed no hb and I went off home to mc, they never contact you again. I had a great GP though and (thank God) the support of mumsnet to get me through. Think the address if this website should be up in all EPUs!

[JugglingFromHereToThere]

Thinking of you RevoltingPeasant x
Great NN BTW!

[JugglingFromHereToThere]

I also think miscarriagematters is good, as PP says because it has that double meaning, and it's more pro-active than miscarriagecare.

• It gets over the idea that women themselves are campaigning to improve things for others
  

(I once took part in a course called Communicating Matters, about how communication and language should be at the heart of work with the early years - I thought it was a great name)

[squizita]

I noticed that when I was pg following mcs, and requested a scan, I was told they didn't like "too many scans" as no one could say for sure what the effect was on the embryo.

There is NO risk to the embryo - cannot believe they said this - all that has ever been proven is that if you have a lot (like 20+) there's a raised chance of left handedness.

NHS equipment is well maintained and perfectly safe. My RMC clinic scanned me pretty much weekly in the 1st trimester: given that they were seeing me purely to protect the embryo and happen to be the national NHS training centre, I trust their judgement!