NICE are drafting new guidelines about the care of women at risk of miscarriage or ectopic pregnancy: please look and add your thoughts

[RowanMumsnet]

Hello,

Further to our ongoing Campaign for Better Miscarriage Care, we're asking Mumsnetters to feed in to a National Institute for Health and Clinical Excellence (NICE) consultation on its first ever draft guidelines on 'pain and bleeding in early pregnancy'.

Mumsnet is a registered stakeholder in the process and will be feeding your views back to NICE - so this is a real chance for MNers to influence the very first NICE guidelines for healthcare providers in this crucial area. Do please add your comments here, or email them to [email protected] marked 'FAO Campaigns' if you'd rather not post on the thread.

Here's some further explanation taken from the NICE press release:



The National Institute for Health and Clinical Excellence (NICE) is today launching a consultation on a new draft guideline which, when published, will help the NHS in England and Wales provide consistent, effective, high-quality care for pregnant women experiencing pain or bleeding in early pregnancy (before 13 weeks gestation), or who may have an ectopic pregnancy.

NICE is developing its first ever NHS guideline on this sensitive subject and, as part of this process, is encouraging charities, patient groups, NHS organisations and others to register their interest and take part in the consultation by submitting their comments on the draft recommendations, thereby helping to develop the final guideline.

Professor Mark Baker, Director of the Centre for Clinical Practice at NICE, said: 'When a pregnant woman experiences pain or bleeding in early pregnancy, it can be a very frightening time. It's vital she receives sensitive, timely and effective care and support, especially if she goes on to lose her baby, either through miscarriage or an ectopic pregnancy. Ectopic pregnancies can also be potentially life-threatening for the mother if they aren't diagnosed and managed effectively. Unfortunately at the moment, standards can vary across the country and some women may not be receiving optimum care, particularly those who have an ectopic pregnancy but do not exhibit obvious signs of pain or bleeding.

'The draft version of our guideline on the assessment and management of pain and bleeding in early pregnancy is now subject to a consultation phase and we welcome comments from groups who have registered an interest in this guideline. All feedback will help us develop an effective guideline. Once published, it will ensure the NHS across England and Wales can consistently deliver a high level of care and support to pregnant women and their families.'

Recommendations on which NICE is asking organisations and other stakeholders to comment include:

Signs and symptoms of ectopic pregnancy: Be aware that atypical presentation for ectopic pregnancy is common and that ectopic pregnancy can present with a variety of symptoms and signs (as set out in the draft guideline). All healthcare professionals involved in the care of women of reproductive age should have access to pregnancy tests.

Specialist assessment service: A dedicated early pregnancy assessment service (where scanning and decision making about management can be carried out), should be available for women with pain and/or bleeding in early pregnancy.

Ultrasound for determining a viable intrauterine pregnancy: Women with pain and/or bleeding should be offered a transvaginal ultrasound (TVU) to identify the location of the pregnancy and presence of a fetal pole and heartbeat. If a TVU is not acceptable, a transabdominal ultrasound (TAU) should be offered as an alternative.

Management of miscarriage: Expectant management for 7-14 days should be the first line management strategy following confirmed diagnosis of a non-viable pregnancy.

Psychological support: Healthcare professionals providing care for women with early pregnancy complications in any setting should be aware that early pregnancy complications can cause significant distress for some women and their partners. Healthcare professionals providing care for these women should be given training in sensitive communications and breaking bad news.

Groups with a registered interest in this guideline have until Friday 17 August 2012 to comment on the draft recommendations. Following this, development on the guideline will continue with recommendations likely to change depending on feedback received during the consultation.

[Patsy99]

Just echoing the points others have made about enforced expectant management. Women need to be offered a choice for how to deal with a miscarriage once it has been confirmed. The stress of carrying a foetus which you know has died and waiting for the trauma of the miscarriage to begin is exceptionally difficult to bear.

I've had 3 miscarriages, 1 natural and 2 ERPCs following a diagnosis of a MMC. The week between the first and second scans to confirm the 2 MMCs have been amongst the worst 2 weeks of my life. In both cases I was offered an ERPC within a couple of days which was was enormously helpful in terms of getting the worst over with physically and starting to move on emotionally.

I also second what Confused said about the quality of care at UCH, I was treated with kindness and sympathy by the EPU there. I think UCH could provide a good benchmark for best practice.

My miscarriage care at North Middlesex however was at the oppostite end of the spectrum. The receptionist at the EPU refused to allow me to be seen as my referral fax from the GP hadn't arrived because they'd run out of paper for the fax machine. Yes, really. I wish I had put in a formal complaint now but was too sad at the time to face it.

[igggi]

I don't think my EPU gave me good advice about what to expect with my natural miscarriages - twice I was told "it's probably over already" after having small amounts of bleeding with 6 week mcs - they were so so wrong! And they were also wrong when I phoned for advice when the bleeding with a confirmed 8 week mc suddenly stopped - er, no, it wasn't over that time either, it was a lull before I passed the sac and baby complete with lots of pain and bleeding. One reason I think they give poor advice is that they just don't know the true situation, due to never doing any follow-up that would tell them what a miscarriage at home is actually like, how much blood loss or pain or how long it lasted. Why is following us up afterwards not automatic?

[elliejjtiny]

yy to the painkillers, I had prescription strength co-codamol (30/500) and they didn't help much. I had to wait hours to get that because I'd already taken paracetamol at home and they said I couldn't have anything else (no idea why, although I had a lot of needle marks in my arms by this point from when various people had tried and failed to get a line in or take blood over the past couple of days so maybe they thought I was a drug addict). I was terrified about giving birth in that hospital because I thought I wouldn't be allowed any drugs although in the end I only needed the pool for DS1 and gas and air for DS2 and DS3 because giving birth was a picnic compared to my first miscarriage, even DS2 who was back to back.

Definately clear instructions and explaining what might happen, none of this bleeding like a period and a little discomfort.

A follow up appointment for all women who want one. I was told that they would do tests on DC5. When I asked about a follow up appointment I was told I couldn't have one.

More reassurance for women going through pregnancy after loss. Open access to EPU for reassurance scans and compassion from HCP's rather than being told not to be silly. IME a large proportion of women who have had miscarriages get PND when they have a subsequant baby. I think this can be reduced with better pregnancy after loss care.

[HJBeans]

Copied from thread on mc board: For what it's worth, I agree with you that removal of choice is a very bad thing. I miscarried early and completely both times and so did not need to be offered a choice, but the thought of having a two week window of watching and waiting forced on me after being told a later pregnancy had failed fills me with dread. I'm not sure I'd choose active management if it came to it, but even thinking about not having that choice is awful. Hope you get more responses elsewhere.

[Patsy99]

maples - 15 weeks, dear god.

[JaffaSnaffle]

I have had 2 mc. One was a late mmc, which was treated with medical management the day after diagnosis.

The second was earlier, and was effectively treated by expectant management. Because of the first mc, I was very aware of what was going on, but I realised something strange was happening with pg tests, on day period was due, that were not picking up a pregnancy either. I saw GP, who did HCG tests, which showed very low levels. Ectopic pregnancy was a possibility for me, so I was sent for a scan. Up to this point, I was very happy with my treatment.

Thankfully, the scan showed that it was not EP, but 'just' a poorly developing embryo. I was told I was likely to mc, and told to come back 2 weeks later for another scan and possible EPRC, if nothing happened in the mean time.

The following weeks were incredibly difficult. I was on edge all the time, never knowing if and when the mc might strike. I am a SAHM, so had to care for my 2 year old throughout, worrying about what I would do for childcare if it got bad when it started. If I worked, i imagine there would be different, but equally difficult concerns about carrying on ad nirmal. Every morning I woke up with a feeling of dread and deep sadness. When the MC did arrive, I was relieved to be out of limbo, which then made me feel guilty and sad because this was a very much wanted child. It was a horrible time, which I would not wish on anyone.
The actual mc was not very painful, but was mentally hard. There was no physical follow up from hospital, just a phonecall to check on me. I saw my GP, but this was on my inititation because I thought I had retained products, which I did.

I was told that this treatment was the only option for me because the mc was diagnosed so early. I appreciate that this was probably an unusual situation. But it really was one of expectant management without alternatives. And it made the whole experience much worse.

I am pregnant again, 21 weeks, and I am struggling with mental health issues, mainly anxiety. I do believe that this experience was one contributing factor, because it was such an ordeal. It just ground me down.

If this became standard, my own experience tells me a lot of women would suffer. And with finance hat on, probably not much money would be saved over all, just costs shoved onto GP's and community healthcare professionals who would have to deal with the fallout.

[husbanddoestheironing]

It would be much better to allow self-referral to epu particularly after first contact. my experience of this was appt with GP after substantial bleeding, referral to epu, had to wait (unplanned pg and wasn't sure of my dates and guessed 5 weeks) asked to wait 2 weeks as scan (external) not useful before 7 weeks, 2 wks later still pos home pg test, back to Gp for another referral to epu. Very lucky to find 9wk viable pg. the 2 appts with Gp just wasted his time really, we all knew he couldn't tell me anything one way or other, though he was very nice about it.. The epu nurse was great though and didn't make any assumptions about anything, but I think the receptionist could have done with some extra training on dealing with distressed women and their anxious partners, there was an episode while I was waiting which didn't make nice viewing.

[husbanddoestheironing]

It would be much better for women and more cost effective to allow self-referral to epu particularly after first contact. my experience of this was appt with GP after substantial bleeding, referral to epu, had to wait (unexpected pg after fertility issues with first child, and wasn't sure of my dates and guessed 5 weeks) asked to wait 2 weeks as scan (external) not useful before 7 weeks, 2 wks later still pos home pg test, back to Gp for another referral to epu. Very lucky to find 9wk viable pg (hes 3 now)The 2 appts with Gp just wasted his time really, we all knew he couldn't tell me anything one way or other, though he was very nice about it.. The epu nurse was great though and didn't make any assumptions about anything, but I think the receptionist could have done with some extra training on dealing with distressed women and their anxious partners, there was an episode while I was waiting which didn't make nice viewing. A lot of it seems to be dependent on how women/couples are counselled and generally treated during this incredibly difficult time.

[igggi]

This has been bumped off the list that appears at the top of active convos. Probably not the type of thing people go looking for.

[JoKempster]

The NICE guidelines do have a lot of good points which shouldn't be overlooked (and I do support), but I am writing specifically to protest against the suggestion that "Expectant management for 7-14 days should be the first line management strategy following confirmed diagnosis of a non-viable pregnancy".

After having a missed miscarriage confirmed, I was offered the choice of expectant management or having the ERPC. I had my scan on the Monday and then surgery on the Thursday. I am the sort of person who would usually pick the 'natural' way, wanting nature to take it's course. But this was such a horrendous experience. The limbo of carrying a dead baby (and fearing that baby could be passed at any moment) seemed to go on forever and yet it was only 3 days, I cannot imagine how someone would manage to last 2 weeks. It would be awful whatever the woman's situation - going back to work would be impossible, and the thought of the passing the baby whilst having a toddler at home is unimaginable.

Expectant management should always remain an option for those who wish to do so, but please do not enforce that option on women who do not want it.

Please also bear in mind that women who have just found out they have had a missed miscarriage are extremely distressed and vulnerable - it is essential they are given all the information to make an informed decision for themselves, and are not pushed into an option which may end up traumatising them even further just to save costs.

I appreciate costs need to be cut somewhere but there has to be a better solution than this.

[Taffeta]

"The recommendation re: 7-14 days waiting for expectant management are particularly cruel: how can you function for that long, particularly in a working environment, waiting for "nature to take it's course". Employers will be unhappy about increased levels of sickness, as women are signed off, with their lives on hold & unable to work."

Dreadful, NICE. Waiting 14 days. Shame on you all.

[lotsofcheese]

And the unpredictable nature of expectant management would also make it extremely difficult to look after existing children whilst having a miscarriage (as well as working).

I feel strongly that women should be involved in the decision-making process, and have a CHOICE re: OPTIONS rather than this "one-size fits all" approach.

I really hope NICE will accept this anecdotal evidence from women who have been through the experience, rather than just focusing on clinical/cost evidence.

[Taffeta]

Thats what I see when I read it. Cost savings.

[lotsofcheese]

Apart from costs to employers. And what cost to women's emotional health?

[Daisybell1]

I have to say firstly that I have not read the guidelines fully, secondly this is very raw as I had an erpc on Monday.

I thought I was about 8-9 weeks pregnant when I had pain in my c-section scar. My community midwife got me an epau appt 2 days later. Not too bad a wait but not ideal. If I had been bleeding or in real pain, then it would have been unbearable.

Treatment at the epau was ok, a scan revealed I was only measuring 5-6 weeks and there was a second baby which had already died. The most difficult thing was the location of the epau - in with everyone else getting scanned, complete with them waving around their pictures etc.

The week waiting for the second scan was the worst of my life, it took forever. I knew deep down that there would be a bad outcome which there was. I have to praise the unit at this point - the sonographer was extremely compassionate, as were the staff (plus I was one of the last appointments to be seen in the joint clinic - they were moving the epau upstairs away from the main clinic that afternoon - a much more compassionate location.

I was offered all three options and immediately chose erpc. I have a 9 month old for whom I would have childcare the following week. Expectant management is completely impractical - I felt that life could not be put on hold for 2 weeks whilst my body decided whether or not to miscarry naturally. I was worried about leaving the house, taking my baby swimming etc in case it started.

The emotional trauma of waiting would also have been unbearable. Once the bad news confirmed I felt that it was best for me to have the operation, at a time which suited my family best, which led to me being in the best place to achieve a good recovery.

The erpc was, in all, a good experience, and the staff were very sensitive. I was on a gynecology ward, away from pregnant women and everyone was very compassionate and they all expressed their sympathies for our loss. This makes the only insensitive incident (where I was shown into a delivery room for a last minted jab) stand out.

So to sum up, women should have access to epau services on a self-referral basis, these services should not be confined to office hours only, and that there should be freedom of choice in how miscarriage is treated.

I have copied this to my MP.

[Daisybell1]

Thank you. Having had time to think more about this, I think that it centres around dignity.

In extremely upsetting circumstances, we are all entitled to be treated with dignity, and part of that dignity comes from having a choice. Being sent home and being told to wait is not the best option for all women - for some it will be, but for others it's not, and it is not right to deny those women a choice of treatment.

Although I had the erpc, I would have had medical management if the erpc had not been available. The reason for medical management not being my first choice was that the hospital was a 2hr round trip away and so it was not feasible to be making that trip on several days. In the same vein I was unhappy about possibly miscarrying naturally so far from medical help.

So when offering women treatment for a miscarriage, there needs to be consideration of all the relevant factors - mental health as well as physical, family circumstances and geographical location.