New quality standard for miscarriage care in England: consultation on draft proposal

(14 Posts)

MNHQ have commented on this thread.

RowanMumsnet (MNHQ) Mon 10-Mar-14 17:06:42

Hello

Some of you may remember that a while back, we sought your input on the National Institute for Clinical Excellence (NICE)'s clinical guidelines for miscarriage care, and fed your views back to NICE to help inform the final version.

NICE is now consulting on the draft quality standard to accompany those clinical guidelines. Quality standards are 'a concise set of prioritised statements designed to drive measurable quality improvements within a particular area of health or care.'

So if you have opinions about how healthcare professionals and clinical settings should deal with women who are miscarrying, now is your chance to get your views heard. Mumsnet is a registered stakeholder in this process and will be able to feed back on your behalf.

So do please take a look at the consultation document and let us know what you think, particularly about the two questions posed on p5 of the PDF.

Thanks
MNHQ

Forester Sun 16-Mar-14 20:09:36

Hi

My comments re this document would be:

- why is this document titled "pain and bleeding in early pregnancy". I have had two MMC's and had neither pain nor bleeding
- the quality statements on page 4 focus on the time the miscarriage is happening / diagnosed. Not what happens after that.
- I agree that you should be seen by EPU within 24 hours
- It would be preferable if ultrasounds could be performed away from the normal antenatal ultrasounds if a miscarriage is suspected.
- I agree that a repeat scan should be offered. But I don't think it should be made compulsory.
- I agree with the information being provided at the time of the miscarriage
- There should be some sort of follow up by the NHS once the miscarriage is over. For example a call from a midwife to ask how things are and do you have any questions. If not a midwife then a GP. If more support is required then I would expect referral on to the relevant area.

RowanMumsnet (MNHQ) Mon 17-Mar-14 14:27:27

Thanks Forester

Any more for any more?

DreamRabbit Tue 18-Mar-14 15:03:18

I agree with Forester re. the titling of the document – it seems to suggest that the quality standard is only aimed at women who self-report who their doctor/EPU with worries about their pregnancy, rather than women who discover a MMC at their first scan. Surely all women having an early miscarriage deserve the quality treatment outlined in the document?

Re. quality statement 1: “Women with suspected ectopic pregnancy or miscarriage are seen in early pregnancy assessment services within 24 hours of referral.” This raises questions for me. What if you report to your GP on a Friday? My local EPU is only open mornings, Mon-Fri. What if you start to bleed/feel pain at 6pm on Friday when your GP closes at 5.30? That would mean that, technically, you could be waiting until Tuesday to be assessed at an EPU – and that would be a successful implementation of the quality statement, but wouldn’t feel very successful to the miscarrying woman. What if you call 111, out of hours – will they be able to refer you themselves, or will they merely tell you to call your own GP on Monday morning? How will you ensure that women who experience issues Friday to Sunday get the same quality care as those who experience them during Monday to Thursday?

There is no quality statement re. follow-up care after the miscarriage.

RunDMC Thu 20-Mar-14 18:03:33

Agree with Forester and DreamRabbit - there is seemingly no place in NHS protocols for dealing with MMC - something which has become abundantly clear to me today as I'm in the midst of dealing with a second MMC and have come up against NHS protocol which refuses to acknowledge the practicalities of the situation (non viable pregnancy) and allows for no commonsense decisions to be made.

Not every miscarriage involves pain or bleeding and it seems shortsighted and frankly discriminatory to treat all women experiencing this awful situation under the same umbrella. I'm conscious this is not about personal stories, however I was basically told if I'd been experiencing pain or bleeding, the hospital would have acknowledged my pregnancy was no longer viable (after two scans a week apart which confirmed it). Rather, I have been told it's mandatory to have another scan in a week's time as this is protocol and there is no scope to bend the rules.

So I'd certainly want to second the point that a repeat scan should not be mandatory and should be based on a common sense decision made in light of the protocols but also in light of the individual's circumstances - e.g. bleeding and uncertainty about dates results in a very different situation to MMC and absolute clarity about dates.

RowanMumsnet (MNHQ) Mon 31-Mar-14 09:56:55

Thanks very much all. And we're sorry to hear about your MMC, RunDMC; we hope you're being well looked after. flowers

Forester Tue 01-Apr-14 20:37:58

I have some additional comments re after a MC.

I fell pg again soon after my first MMC. Naturally it was really important that I didn't need to wait longer than necessary for my 12 week scan but trying to understand what happens to the paperwork between GP/ Hospital / Midwife was very difficult and I would have really appreciated someone realising how important it was to me.

I also wish that I had been offered an additional scan at either 8 or 10 weeks. As it was I found out at the 12 week scan that I'd had another MMC (at 7 weeks). As I'd continued to have normal pg symptons (including morning sickness and an expanding bump) and no bleeding up to my scan - despite being painfully aware of MMC's I was still taken by surprise. It would have been easier if I'd known earlier.

Paintyfingers Tue 01-Apr-14 22:43:14

Thank you for responding to this NICE consultation, Rowan.

Similarly to pp, unless they plan a separate document for mmc which seems pointless, I don't understand the title (pain/bleeding). Nothing on here covers the situation of women facing mmc. Why can't they add a separate final bullet covering them to the appropriate parts of the standard eg:

Pain
Bleeding
Women suspected of miscarriage following a routine ultrasound scan

I want to make a comment about training for staff. We had to complain to PALS (upheld) following very insensitive treatment by members of the admin staff at the EPU and in the scanning reception. They are as much in need of training about the importance of sensitivity to women suffering the anguish of suspected mc as clinical staff are. In fact, the clinical staff were uniformly kind, so perhaps the admin staff are actually in greater need of training.

On info to be offered and how this should be evidence based, I could not agree more. This was totally lacking at the unit where I was with my mmc. I do have one further piece of info I would like to see included - what about methods not offered at certain hospitals? How to access them and info on them is very important. Eg our unit did not offer medical management, so we were offered no info on this at all - only told about surgery and expectant management. I queried this and said I had found another method online and wondered what that would entail. The registrar replied not very helpfully: "we don't offer that at this hospital so I don't know anything about it". There was no information even about how I could find out more about medical management or ask to be transferred to a unit that did offer it. Surely all units should offer info on all three threat meant methods and on how transfer to a unit offering any method not offered there is possible.

I do have continued concerns about a14 day wait for a second scan for women having been suspected of a mmc at the 12 weeks scan - they would then be 14 weeks before they even get put on the waiting list for surgery if that is their preferred option, which does seem very late. It would seem more sensible for them to be seen faster than this for a second scan, especially if there are long wait times for surgery. I was told there was a ten day wait for surgery, which would have meant having surgery only at 15.5 weeks. I had to go private in the end.

LaceyLee Tue 01-Apr-14 23:02:29

I would definitely agree that mmc needs to be addressed. I suffered one at 13 weeks and had never really even heard of one. I had no idea at the time that the symptoms of pregnancy could continue without a viable foetus. There should also be guidelines given on this.

Another area for guidelines should be with regard to training for staff.
Many of those I dealt with were very good, but I was asked several times after I had miscarried and was waiting for erpc (in hospital as I had bled very heavily and had gone to a&e) how many weeks pregnant I was - when clearly I was no longer pregnant! Other comments like being asked how I was feeling immediately after I had been told that my baby was dead were also not very helpful. Also giving information with no follow up. For example, after my second mc I was told that my womb lining was very thin. Again, not being an expert, I had no idea what this meant and was given no guidance, just sent away. I should have questioned more but the nurse who told me was not interested in answering my questions. Of course these may only be isolated incidents and may not happen to others, though I seriously doubt this and more needs to be done to make healthcare professionals more aware of how to treat women in this situation.

vladthedisorganised Tue 15-Apr-14 14:27:19

RunDMC, hope you're OK.

I would like to add my voice to the call for better MMC care - mine was picked up at the first scan and I was very lucky to have an extremely experienced and sympathetic GP who could advise me on what happened next, but it was really down to luck I think - if I'd been told to report to the EPU it would have meant a very anxious wait and a lot of not really knowing what was going on (as happened with my second MC)

I would also say that standards need to be mandated for records management, as small as this sounds. In both of my MCs I ended up receiving letters from the local hospital inviting me to my second scans several weeks after the miscarriage; when I reported to the EPU to confirm my second miscarriage, it was recorded as a 'pregnancy scan' rather than a miscarriage scan - meaning I was congratulated as soon as I walked into the room and the sonographer expressed some surprise that my partner wasn't with me 'to meet the baby'. Really small things, but the emotional impact was quite significant.

TinyTear Tue 15-Apr-14 14:37:56

at work so don't have time to read the whole document carefully but:

- agree with the title being wrong. only 2 out of my 5 mcs had pain and bleeding

i was one of the fortunate (?) ones where my local EPU and scans in miscarriage are separate from the main ante-natal care, although the ward is still on the same floor as the labout and maternity wards...

I think everyone should be offered counselling after the event. in my case i was always given a leaflet but only took them up after mc4

Women should be allowed to self refer. in my EPU I need either a GP or A&E referral... at least means out of hours i can go to A&E and get scanned the following day...

Might try and come back in more detail later...

TinyTear Tue 15-Apr-14 14:39:39

Agreeing with vlad about communication.

I informed my midwife services when my miscarriages happened and other times told them to let them know yet:

- got invited for a scan
- got an angry call as I had missed my booking appointment
- got text messages asking for me to call them to book my 12w scan...

Paintyfingers Wed 16-Apr-14 08:38:47

About counselling services, I now go to the same hospital where I had my mc confirmed for treatment for an (unrelated) chronic condition. While there recently I passed the chaplaincy building, which had a sign outside stating that the team are trained counsellors and happy to help people of all faiths and none. This was never mentioned to me when my mc was confirmed and I was in a very shaky state.

If nhs resources are being spent in chaplaincy services why are women with suspected mc/having mc not told about them?

marshmallowpies Wed 16-Apr-14 09:38:38

I had my miscarriage confirmed last Monday, what would have been week 10, at the EPU, and they said they would cancel my scan appointment for me. Come Friday I had an automated call reminding me of my upcoming appointment....luckily I could cancel it automatically by pressing buttons, didn't have to speak to anyone, but it annoyed me that after a full week the message hadn't got through...

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