MNHQ here: we're after some examples of good miscarriage health care

[RowanMumsnet]

Hello all

As (hopefully) lots of you will know, we're running an ongoing Miscarriage Care Campaign, asking healthcare providers deliver care that matches up to the five points of our code - which are:

1. Supportive staff
2. Access to scanning
3. Appropriate treatment spaces
4. Good information and effective treatment
5. Joined-up care.

Andy Burnham has , and Norman Lamb (the LibDem Health Minister) has personally signed up and is going to try to get it into the LibDem manifesto.

(We're still working on Jeremy Hunt for the Conservatives: if you'd like to add your voice asking for their commitment, have a look here.)

One of the things that would be really useful now is to know which hospitals and healthcare trusts are delivering good miscarriage care.

So if your personal experience of healthcare during your miscarriage was good (as much as these things can ever be), we'd be really grateful if you could tell the us which hospital and/or healthcare trust is, in your opinion, getting it right.

This will help to persuade the politicians that it can be done, and needn't cost enormous sums to get right.

If you'd rather do this off-board, do please email us at [email protected] and put 'FAO Rowan' in the subject line.

Many thanks
MNHQ

Have remembered the speed with which a nurse pulled the curtains round my bed when in recovery after erpc, and someone's newborn was being brought through post c-section. That was in Livingston. Same hospital though, had to repeatedly say "no it's not my first it's my third" whenever a new person came to take my details. Easy to find that sort of thing out. Plus the battle to make them agree to test what they removed, despite it being my 3rd. I imagine most places are like this, with the good and bad intermingled.

The Friarage Hospital, Northallerton, North Yorkshire. Excellent care.

The EPU waiting room is kept separate from the normal 12/20 week scanning waiting room. receptionists were vv discreet and the scanning team were lovely. I had a 6 week scan after a bleed which was inconclusive and another at 8 weeks which showed I had had an MMC at about 6.5 weeks. I was able to call the scanners directly and get advice when I did then miscarry and they were all so lovely both on the phone and in RL.

Only thing I did have to do was tell my GP surgery but then this was the week leading up to Christmas (great time to miscarry) bug even they were very kind and considerate as soon as I mentioned it.

I had a stillborn baby in 2012 I was under birmingham heartlands and they are lovely. I had my rainbow baby last year and the staff from the baby loss team recognised My name and even came up to the ward to come and see me and my daughter

I've had 1 MMC (11.5 weeks), 1MC (8 weeks) and 2 chemical pregnancies. Both the 11.5 and 8 week MCs were picked up on scans at Gloucestershire Royal, and the 11.5 week one ended with me being admitted via A and E at GR and staying overnight. This experience was broadly positive, whereas the one at 8 weeks was less so.

11.5 week MC good things:

1. Sonographer and nurse at scan at which MC was picked up were sympathetic and kind
2. A and E staff were fantastic. Still makes me cry to think about it. They were so kind and obviously really felt for me.
3. Saw a gynae doctor very soon after arrival, who was also very nice and explained clearly why I was in so much pain and what they could do about it.
4. Was put on gynae ward with women waiting for bladder ops, not anywhere near healthily pregnant women
5. Ward nurses were lovely
6. Gynae doctor I saw the next day to talk about options did so privately, gave me lots of time and expressed sympathy for our loss.

However, not so good: nobody explained after the scan that miscarrying 'naturally' at 11.5 weeks was going to be a bit more than just a period. I lost pints of blood and the pain was terrible. Could have done with some honest explanation there rather than 'reassurance'.

8 week MC:
I was scanned and told by the sonographer that the baby was measuring 6 weeks rather than the 8 I knew I was. Was distraught as this was what had happened with previous MC (measuring very small, then failed).
The nurse was having none of it and told me that there was a (slow) heartbeat, the scan results were good and my dates must have been wrong. She didn't listen when I explained that this would mean I'd conceived the day I got my BFP. I wanted another scan in a week because I was convinced the baby would die and wanted to be able to opt for a D and C to avoid the horror of the last time. I was sent home and refused another scan until two weeks' time because 'we won't be able to tell if it's grown if you're scanned any sooner'.
I MCd four days later, on a Sunday, at home, using the codeine I'd saved from the last MC for pain relief.

Broadly I'd say the A and E and gynae staff at GR were great, but the procedure in the EPU for treating women who have abnormal early scans like mine needs some serious reorganising. The focus on 'reassuring' and of assuming women have their dates wrong or don't know their bodies properly isn't good care.

I had a private scan when I felt something was wrong at 8 weeks and which confirmed an mmc. I saw my gp the next morning who referred me to West Middlesex University Hospital in Isleworth, West London. They called me within 1 hour and I had an appointed the same day at the EPU. They were very thorough in the scan and able to tell me my ovaries and womb were healthy which the private practice had not (they used a camera not just the ultrasound). Staff were so empathetic, gentle and understanding; couldn't have asked for more. I particularly appreciated the choices given to me on what to do with my embryo. I was called the next day and given the date of the ERPC - 1 week after my appointment. I was in the general theatre area at the hospital with people having all sorts of procedures. I checked in at 7.30 and was operated on at around 14.00 which was a long wait due to some emergencies. I finally left the ward at 17.30. The surgeon was very empathetic and I can't fault anything. I deeply appreciate being treated with empathy throughout what is an emotionally difficult time. Today is the day following the procedure and I feel that the hospital is there is I need assistance or advice on grief counselling. I personally would recommend this hospital.

Thanks very much all. Do please keep adding and we'll keep checking in.

Thanks
MNHQ

My experience of Maidstone and Tunbridge Wells NHS Trust has been vastly different. Frustratingly, Maidstone now only has a birthing centre and early pregnancy unit, and all the emergency gynae care and main labour ward are at the new Tunbridge Wells 'Pembury' hospital. At my MMC 3 months ago, my dating scan was performed at Maidstone, but had to travel to TW when baby was found to have no heartbeat for follow up care and management choices. The doctor I spoke to was very difficult to understand and told me I would experience 'heavy menses' when I did miscarry. I also had to wait 6 days for an ERPC. Ironically I miscarried at home and my waters broke and I delivered a very small baby. I then still had to have an ERPC on the Monday to remove retained product.

The positive from this is that the ERPC was handled efficiently and with care, the nurse and doctors were kind and considerate.

I am currently pregnant again, but it is a threatened miscarriage. I have a large hematoma under the baby causing me to bleed every day. I have found the emergency gynae assessment unit at TW hospital helpful at initial meeting with gynae doctor to discuss bleeding, however I had to admit myself through A&E to access the unit. I was unable to have a scan until 24 hours after presenting with heavy bleeding. The EGAU is massively understaffed and over subscribed. I suffered heavy bleeding two days after initial A&E visit and was told they were shutting the EGAU due to lack of staff. The rude woman on the phone told me she was juggling six different jobs, and I should present to A&E again as the gynae doctors would see me there.

Fortunately I have found solace in the Early Pregnancy Unit at Maidstone hospital. They have been incredibly informative and compassionate and happy for me to ring when they are there to discuss any issues. They have offered me scans when needed and have been very kind as I have had some other emotional upset in my life recently. They are midwife and nurse led and have given me hope that the nhs do have staff available to help and treat me like a human being and not an inconvenience. Thanks.

I recently had a miscarriage at 8 weeks (the foetus had not developed past five) - it was confirmed at the early pregnancy unit at St George's in Tooting. They were incredibly kind, gentle and informative and I can't speak highly enough of the wonderful care they provided. St George's is a brilliant hospital!

I've been through miscarriage twice now. Both times been through Royal Oldham. First was 6.5 years ago at 9 weeks, second now at 11 weeks.
The aftercare has improved immensely in that time - we were shown to a private room to wait for scan because I was visibly upset. Sonographer compassionate in detailing what she saw (or didn't). Nurse again put us to wait seperately for dr in a counselling room and told us we were next and got us drinks.
The dr was amazing. Did not rush through anything, was sympathetic and offered appropriate advice.
Massive improvement to previous experience where you waited with pregnant women in antenatal and had a very matter of fact nurse listing options practically as ushering you out after heartbreaking news.
Still improvement required in the emergency care. Admitted via An E to EGU at weekend with bleeding and had an internal only. No bloods taken nor scan. The earliest scan I was offered was 4 days later. By then I'd miscarried naturally at home which I had not wanted to go through again. I appreciate a scan won't stop a M/C but the unknown and waiting I found both times really quite traumatic.

I'm just going through my 7th miscarriage, I'm in the limbo process of awaiting serial blood tests to rule out ectopic. I am incredibly lucky to be under the absolutely fantastic St George's hospital in Tooting, South London, and their wonderfully caring EPU. The ladies are fantastic, compassionate and highly experienced, they've become real friends over the last 7years. It's a walk in service 6 days a week. It used to be unfortunately located close to the ante natal clinic, but that's now, compassionately, been moved.

My personal experience was a natural miscarriage in 2007 at 9 weeks. 2nd in Feb 2008, had weekly scans at EPU til missed miscarriage at 9 was followed by ERPC, at day surgery unit. Handled sympathetically and professionally. 3rd in July 2008, weekly scans, potential chromosomal abnormalities detected at 11wks, referred to top UK consultant in Fetal meds, baby died at 13 was, followed by ERPC, unfortunately needed further ERPC 6 wks later due to retained product. Referred to another top UK consultant for recurrent miscarriage tests. Unfortunately no cause found, but wonderful reassuring man, who gave us a management plan for subsequent pregnancies, and hope! 4th pregnancy Jan 2009, again weekly scans, baby died at 9wks, another ERPC. then discovered test for Lymphocyte Immunotherapy Treatment (LIT). Not available on NHS, private at The Portland. Positive result, a potential answer, reason, and cure! Had treatment at beginning of 5th pregnancy, and went on to have my miracle daughter in May 2010! Again, amazing care, all the way through an understandably angst ridden pregnancy! 6th pregnancy, early scans again, had the LIT treatment, but a different clinic, and too late in the pregnancy, so weekly scans at EPU, as with previous losses, showed baby died at 9wks, so another ERPC. 7th pregnancy was a chemical pregnancy and failed at 5wks before I'd even had a scan, in June 2012. Had the LIT treatment before realising pregnancy had failed, at original clinic, Portland consultant, this also gave a 3 month period to conceive again, conceived 4 months later, and went onto have our miracle son in July 2013! Was 8th pregnancy! Went on pill, happy to have completed our family finally, but fell pregnant, 4wks ago, started bleeding at the weekend, was due my first of weekly scans on Monday at near 7 wks, but as no baby seen, though probably a complete miscarriage, they have to rule out ectopic with repeat bloods. A new scary experience I'm not familiar with, but once again, immense support and care from my wonderful EPU at St George's.

I have received excellent care today from the early pregnancy unit at Addenbrooke's, Cambridge. I had a mmc confirmed by kind and sensitive staff.
Awful day but good experience with the NHS.

I've had two miscarriages at UCLH and literally all the staff there have been amazing. They always give you time to ask questions, are so sensitive giving you space after the sad news, and have promised an early scan if I am pregnant again.

I think it helps that it's a drop in where you can sell refer even though there are long waits you can decide for yourself that you need to be seen on a given day, and you know that you will be seen.

And I think they are really good at recognising the emotional side of the miscarriage too. Happy to give more details off-line too.

I have an amendment to add to my comments about Addenbrooke's. I was told I couldn't have surgical management because the sac was too small. The implication was that it would be medically impossible or at least not advisable.
I rang for clarification and in fact, it's not medically too small it's just that they save their resources for pregnancies which have progressed further. This is a policy rule, not a medical rule. I feel that they should have been more transparent about this so I could feel fully informed of the options.

In addition, once I finally miscarry, I will not be offered a scan to check everything has gone. I just have to take a pregnancy test and how for the best. Unfortunate postcode lottery.

Staff still very kind though.

I found out I had a MMC at my 12 week scan at the Surrey County in Guildford (I live in Jeremy Hunt's constituency...).
The staff were lovely throughout , whether in person or on the phone when I rang back with questions. They had a separate room that we were taken to at various points - which they'd tried really hard to make homely with a sofa and side lights etc. had all the info we needed and know who to contact for more help.
They were really good at judging how I wanted to be handled (matter of fact, as I'm not good at emotion) and this carried on right through to having ERPC a couple of weeks later.
I even got a lovely letter from my GP once she'd seen it come through on notes to say make an appointment to chat if I wanted to.