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Miscarriage care Belfast and Northern Ireland

(26 Posts)
Mamakate75 Thu 08-Jun-17 12:36:48

Quick question for ladies treated in Belfast. Were you given a Miscarriage Association booklet and/or details of how to access counselling when in Early Pregnancy Unit (RMH) or Gynae Outpatients (in the Mater) if you suffer with recurrent loss?

More generally how did you find your care and treatment?

I have suffered recurrent miscarriage myself and find the experience exceptionally isolating and lonely here.

CantHelpDancingWithTheDevil Thu 08-Jun-17 12:38:17

I only have experience with Ulster and Antrim

Hope someone is along soon to help

Belfastgal1234 Fri 09-Jun-17 21:23:04

I'm sorry for your losses..
I was given the standard booklet about miscarriage nothing more. I'm also in Belfast and have had recurrent miscarriage.. 2 miscarriages at 6 weeks (6w4d and 6w6d) and a chemical pregnancy within the past year.
My gp has referred me to city after last miscarriage that was at the beginning of March.,. I received a letter acknowledging they got my referral and said it had been triaged and I would hear from them again 6 weeks before an appointment.. Haven't heard anything since..
My gp did all the blood tests they wanted and I already have the results of them so it is difficult to wait so long on the hospital appointment..
I know the epu had a poster up in the ulster hospital about counselling but at that time I was still clinging to the possibility of a miracle and that my baby would be OK so I didn't take much notice of it...
I don't think ni are particularly good for it... I use mumsnet and the forums for more support hmm

Mamakate75 Sat 10-Jun-17 06:15:55

Hi

Thanks so much for replying. Can I be really fussy and ask if you were given a Miscarriage Association booklet or leaflets produced by the Belfast Trust? If it was a Miscarriage Association booklet, did it have a sticker on the back giving details of how you could get counselling if you wanted to? Finally was counselling mentioned to you at all?

Sorry for the 20 questions but I have been trying to get better care for miscarriage patients. I have been told that certain things would happen now for all miscarriage patients but I am not convinced that they are and I want to be able to go back to the Trust to ensure that proper information is given to women and that they know that they can get free counselling from the Trust if they want.

As for your appt. I'll be honest. This time last year women were waiting up to 11 months for an initial consultation. The Consultant you will see is not an expert in recurrent miscarriage- he just has"an interest" in it. He will throw medication at you without really explaining why he is giving it to you. It works for some and not others. He'll give you clexane injections (even if your blood test results don't indicate that you need it), aspirin, high dose folic acid and possibly progesterone pessaries. If this doesn't work he might throw in steroids. If this doesn't work he gets very pessimistic about your chances of success and tries to discharge you from his care. He will probably be overly charming and overly confident at first. He treated me really badly..long, long story. I had 4 further miscarriages under his care and another one after that. I've had 8 miscarriages in total.

My advice? Well you can go and see him in Belfast and try the meds but if you are going to do that you could probably keep trying now and just take 75mg aspirin...he don't do much else.

You could see a lovely Dr in the Ulster hospital who wants to set up a recurrent miscarriage clinic there. She also may do endometrial scratching which is thought to help. I can PM her name.

Or you can go straight to GB where the "proper" recurrent miscarriage specialists are.

Your options are
1. Prof Quenby in Coventry who is a pioneering researcher into the causes of and treatment of recurrent miscarriage. She only charges lab fees so £560 for two endometrial biopsies. I saw her in March 2012 after my 3rd miscarriage. She is really lovely. Very dedicated to helping people.

2. St Mary's Recurrent Miscarriage Clinic in London. Prof Regan or Mr Raj Rai. Theoretically you could ask to be referred here on the NHS (if you have had 3 consecutive miscarriages, no more than one live birth and are under 42) but you will struggle to get the Belfast Trust to do this. Other Trusts have been more accommodating. Or you could go privately but that is expensive. You could go to the Belfast Consultant, try the blood thinners and if that results in a 4th or 5th miscarriage ask to be referred to St Mary's on the NHS. If they say no, ask why because if you meet the referral criteria they really should make the application for funding to refer you over.

3. Mr Hassan Shehata in Epsom, Surrey. I have just seen him.WORLD of difference from the "care" I got here. It took me 20 months persevering with the Trust to actually get referred and I think they only did it reluctantly because I have had 8 miscarriages. He said that I had not been tested right or treated right in Belfast. I think this is coming too late for me but had I been referred to him 3 or 4 years ago (when I should have been) I coukd be sitting here with a baby and not empty arms after being messed around by the consultant here as all the while my fertility plummeted.

If you are thinking of going private here please think again or go straight to GB. There is no real expertise in recurrent miscarriage in N Ireland...especialky where NK cell testing and treatment is concerned. It may be offered in one private clinic here but it is not done the way it is done by the likes of Prof Quenby or Mr Shehata. Expertise re interpretation of results does not appear to be here. What you get privately here in Belfast is NO DIFFERENT to what you get on the NHS. You just pay a lot for it..around £1.5k and counting. And if treatment fails there would appear to be the same attitude of "moving you on" as "There is nothing more I can do for you in N Ireland" seems to be advice....si you end up in GB anyway! So save some money and go straight to Prof Quenby or Prof Regan!

But all of this could be academic. You could get pg, take 75mg aspirin and all could be well. I am beginning to think that no-one really knows what works!

You should ask about a hysteroscopy now and try to get on a list. This is where they put a camera in your womb to have a look for structural abnormalities or adhesions which could be causing miscarriage. The Consultant in Belfast used to do this routinely but now he doesn't and you'll have to fight with him to do it but Prof Regan believes you absolutely have to look inside the womb to see what is going on...and I understand she may well have told him so! Prof Regan is also the President of the Royal College of Obstetricians and Gynaecologists.

I hope I haven't frightened you with all of this info. I have been miscarrying since Oct 2010, lost 8 babies, developed fertility problems and coukd write a book! In my experience women are very poorly served for recurrent miscarriage investigation and treatment here, especially in Belfast. If I had a choice I would go to the Ulster hospital. They seem to care more there and the only bereavement midwife in the whole of N Ireland is there so you may have a better chance if getting some emotional and psychological support there.

Cling to hope, keep fighting and fingers crossed your rainbow baby is not too far away x

Mahoolie Sat 10-Jun-17 08:37:43

Mama is the consultant in Belfast you're referring to DH?

I really hope not as I've sort got all my hopes pinned on his helping my current situation sad. I had two miscarriages last year and have had 3 chemicals this year.

I had actually been under his care for my original problem of endometriosis but heard he specialised in recurrent miscarriage also.

Mamakate75 Sat 10-Jun-17 09:32:48

I'm sorry but yes, it is sad I could tell you some stories about other lady's experiences but none quite as distressing as mine. So bad was I treated that it's being investigated formally. One girl said "he's an amateur. I have no polite words" I think that sums him up perfectly re recurrent miscarriage. She had just spent good money seeing him on the Lisburn Rd and he had no answers for her and his attitude stank. Basically he doesn't really appreciate what we actually go through when we miscarry. She has been to St Mary's and had a problem diagnosed that he completely missed. I know another lady and thus happened to her as well. Basically by the time people work out he's anything but "an expert" or a "specialist" it's too late as he's got your money.

I know some girls with endo had problems with him too. How did you find him for this? To be fair endo is his actual specialism.

With me he had boundary issues among other things re clinical care and access to treatment.

If you don't mind me asking were you ever treated in EPU in the Royal for your losses? And if so were you given the Miscarriage Association booklet or any info on counselling? Sorry for your losses and don't lose hope there IS help out there...but not where you think.

Mamakate75 Sat 10-Jun-17 09:43:30

I'd say go and see him on NHS. Try the meds or try 75mg aspirin if you do fall pg. But keep an open mind and don't for a second think that that man actually cares about the hell you are going through. He doesn't. No matter what he says or even if he somewhat unprofessionally turns the waterworks on. It's most likely all an act.....or his hurt professional pride. He used to sit and cry when I miscarried. Then he's stroke my hand and hold- not quick hug-hold me as he cried. That happened the first few times then he completely changed and thought it appropriate to literally shout at me as I sat in front of him miscarrying for the 6th time, threatening to "move me sideways" and personally insulting me. Not a word of condolence.

Use him to get the meds but watch yourself.

Mamakate75 Sat 10-Jun-17 10:00:40

Mahoolie I'm just thinking if you had 2 cms then 3 chemicals it sounds like an implantation problem or immune problem and you may need steroids for that. The problem is that steroids are not approved by the RCOG for treatment of recurrent miscarriage as there is no evidence that they work...because there has been no peer reviewed clinical trial bug enough....but we know there is a huge body if anecdotal evidence that steroids work. Because they are not approved for use you'll not get them straight away on the NHS and certainly not straight away from DH. He may consider giving you them after a further loss but he blows hot and cold re treatment. One time you see him he will put steroids in your treatment plan. The next time he will say you don't need them. Especially if your bloods are all normal...which is the case for over 50% of couples who suffer recurrent miscarriage. Look I am sitting here with 8 consecutive miscarriages behind me and empty arms after 6 and a half years of persevering. I'd go to Prof Siobhan Quenby now....to Simone who actually knows why they are giving you or not giving you medication.

Mamakate75 Sat 10-Jun-17 10:01:15

Sorry miscarriages not cms

Mamakate75 Sat 10-Jun-17 10:03:25

Oh dear, sorry for the typos. 'big' not 'bug' and 'someone' not 'Simone'

Mamakate75 Sat 10-Jun-17 10:08:23

As for Consultants in NI who can help. There is a lovely one in the Ulster, another in Craigavon Area Hospital and one up in Altnagelvin . Ironically the Consultant I have now is not a recurrent miscarriage consultant but she has thought deeper about why I keep losing my babies at 11-12 weeks and did more for me in a few months than DH did in three years as a "recurrent miscarriage consultant". If I were in Belfast or Newtownabbey I would ask to be referred to the Ulster hospital now and not the City....but that's just my tuppence worth.

Mamakate75 Sat 10-Jun-17 10:40:59

I think I should clarify what I mean by seeing "someone who actually knows why they are giving you or not giving you medication". Prof Quenby spends her says researching recurrent miscarriage so she will base her advice on actual test results and results from research. Most general gynae units up and down the country will prescribe medication on a "just in case it works basis" as happens here. You don't tend to get clexane prescribed like this - elsewhere it is only prescribed if there is a clinical need based on test results but in Belfast it seems it is given to everyone who has had three consecutive miscarriages on the basis that "it is hard to diagnose antiphospholipid syndrome". Not all doctors agree with this approach not least because every medication you put into your system has a direct effect and a long term side effect. So I may well have been takung clexane unnecessarily for years, still got no baby and could wind up with osteoporosis in a few years as a result. When I asked why I was on all of the meds it never went deeper than "you are on clexane and aspirin in case you have a blood clotting condition. You are on progesterone in case you have progesterone deficiency. You are on high dose folic acid to prevent chromosomal abnormality. You are on steroids in case you have an immune issue". Too much uncertainty. But the "experts" in GB will tell you "don't take aspirin at all because your bloods don't indicate that you need it and it may actually increase your risk of miscarriage....but do take 20mg steroid because tests have shown, (for example) that you have low levels of uterine stem cells or you have high levels of uterine NK cells" etc etc There is more targeting of treatment from the recurrent miscarriage experts (who all spend time in a lab doing research). They all disagree which doesn't help but chances are if you try each of their plans you will strike lucky once...although there is no telling when a chromosomal abnormality could be the cause and there is nothing we can do about that.

Belfastgal1234 Sat 10-Jun-17 17:12:01

mamakate I wish I knew all of this earlier... I had my miscarriages at the ulster well I was then sent to lagan Valley but when my gp referred me to recurrent miscarriage clinic she asked did I want to go to the ulster or the city and seemed to be suggesting if it was her she would go to the city.. (Initially she said the royal but they don't do it anymore).. After hearing what you have said in wondering if it is worth getting it changed to the ulster.
My gp is brilliant she has told me she would be very hopeful that I could have a successful pregnancy before ever getting to clinic but she would feel better to at least get the referral started as there's nothing to lose but possibly everything to gain.
She has done all the blood tests that apparently need to be done for rmc and she had given me all the results of them already (in case I want to go private) her words not mine!
All my blood tests have come back normal except for rubella... Apparently I have virtually no immunity to it despite being vaccinated 3 times. I'm immune to the immunisation.... That's just great! not
Can you pm me the name for the person in the ulster? I might ask gp to switch..
I'm not sure if I got a miscarriage association booklet I think it was the trust booklet with miscarriage association name maybe in the back.. I can't remember as I know I found the miscarriage association stuff online but I'm almost certain that was from my own Google search rather than a hospital booklet..

Belfastgal1234 Sat 10-Jun-17 20:47:38

You haven't scared me but it does make me wonder. My husband and I aren't giving up and we will keep trying regardless of waiting on the rmc consultation.. I'm a little bit worried because both my miscarriages happened around the same time.. Both were missed miscarriages also.. The second one not so much as we were already having extra scans. The first one u found out at my booking scan that baby had stopped growing at 6 weeks 4 days... I had zero bleeding and absolutely no signs anything was wrong. Then a chemical and then another miscarriage... I was having scans at the ulster from about 4 weeks.. Go urine test discovered the pregnancy.. Yet u was there because I thought af had come 3 times in one month... First scan showed very little but incredibly early, 2 weeks later growth seen but still too early.. A week later I had a small about of bleeding so was brought in for another scan.. This showed a strong heartbeat at 6weeks 0days.. I'd already had an appointment at epu for the following week and nurse said to keep it just for a reassurance scan... Turned up a week later to be told that heartbeat had slowed down a lot... 3 days later it had stopped altogether sad baby measuring 6 weeks 6 days.... It just seems so bizarre and too similar in timing to be a coincidence although from what gp can tell from blood tests all seems normal confused
I would love to be able to go private as I'm terrified of having another pregnancy and it ending in exactly the same way at the same time but I don't really have the resources to go private.. I'm 27 everyone keeps saying "your young it will happen" or "at least you know you can get pregnant".. Even the doctors but seriously that does not help in any way! I know it might be true but it doesnt help me right now. In England referall to rmc seems to be within 12 weeks and it looks like here it's within 12 months to someone who isn't even a specialist.
One thing I would say is having been through 2 miscarriages at the ulster I would so love to have the epu look slight more welcoming. It's a small thing but it's scary enough needing to go to the epu without having to go through a ward of sick women and into a small windowless room. Often I took the first appointment of the day at just after 8am several times I had to turn the light on myself. I wish that sometimes there would be more open and honest about the chances as definitely with my first miscarriage I came away from my booking scan thinking there was still a chance everything would be OK and was devastated all over again 2 weeks later to be told it was definitely all over and I know of a friend who had the same experience. I almost would wish they had said.. We are 99% sure this will end in miscarriage.. At least id then have been prepared.
Sorry I've gone off on a bit of a tangent just some of my thoughts on miscarriage care here in NI

Mamakate75 Sun 11-Jun-17 21:33:13

Belfastgal I have no experience of the Ulster so it is hard to compare. I suppose I get a little uneasy hearing about and reading about so many women pinning all their hopes on the Consultant in Belfast as if he does something different or has more or "specialist" knowledge that other Consultants in NI don't have when in reality he doesn't appear to. What tests has your GP done - have you had a thrombophilia screen to look for blood clotting disorders? Generally what happens in Belfast at a recurrent miscarriage appointment (which takes place in a general gynae outpatient clinic and not a dedicated recurrent miscarriage clinic) is that you have lots of vials of blood taken, you may get a scan (although this should be done routinely) you may be told there is a 60 % chance of success doing nothing after 3 consecutive miscarriages and an 80 % chance of success if you take blood thinners (these are general UK wide stats but from what I can gather and from personal experience they are often presented as his personal success rates). You will be told that you may have antiphospholipid syndrome (sticky blood) and that he treats all women who miscarry as if they have it irrespective of blood test results. Consultants elsewhere probably would not prescribe clexane if your blood test results didn't show that you needed it. You will be told of his "hand holding service" or "TLC care" which is basically scans at 6 weeks, 8 weeks and 10 weeks at an early morning clinic held on Thursdays ie around 8 am when you are next pregnant. And that it is it. That's what you waited the better part of year for and then you have to wait 10 - 12 weeks for the results and a follow up appointment. Treatment is usually 40 mg clexane, 75mg aspirin, 5 mg folic acid and 400mg cyclogest x2 daily if you ask for it (there is no proof progesterone prevents miscarriage). To me this is no different from the investigation and care you will get elsewhere. If anything, I have heard the Consultant in the Ulster may do a bit more and be more interested in the area. She may do endometrial scratching and this is currently being done by Prof Quenby in Coventry as she really thinks it might help. As for being referred to England. If you have had three or more consecutive miscarriages, have no more than one live birth (ie no more than one living child already) and are under 42 then you are entitled to ask your Consultant to refer you over to St Mary's Recurrent Miscarriage Clinic in London.(Your GP can't do it from NI - they can in England) The Health and Social Care Board will pay for your flights and the cost of any treatment or care you receive over there. St Mary's are the gold standard for recurrent miscarriage testing as they do the tests to different parameters to here and in better conditions. I have heard many a story of a woman from here being investigated here, nothing being found, her miscarrying again only for her to go to St Mary's and for them to find she has an undiagnosed blood clotting condition or a structural abnormality in her womb needing surgery. Many of these women then went on to carry successfully to term the next time. So don't rule out GB - the Trust pays for it all - you just may have a battle on your hands getting the trust to make the application to refer you over in the first place but I am happy to help anyone in this situation...it is not you, it's them (trying to save money). It is easier in some Trusts rather than others...Belfast is particularly hard to get referred over from...but it is not impossible...I have managed it...but St Mary's wouldn't see me despite 8 consecutive miscarriages since Oct 2010 - as i had two children before my RMC hell started. I am seeing Mr Shehata in Surrey. My only regret is not seeing him years before now as i may well be sitting here with a baby. It's probably too late now....and the delay was entirely the Trust's fault...they dragged their heels something shocking. You would think they would want to help a woman who has had 8 consecutive miscarriages...no... it would appear that they want women like me to simply "go away". When I wouldn't 'go away' I was treated really , really badly...it is a long and distressing story. I have been involved with the Patient and Client Council since 2014 to try to secure some improvements in miscarriage and recurrent miscarriage care and we are getting there slowly. If you want I can pass your comments re the EPU waiting room back to them and they can raise them with the SE Trust? As to where you go now...I'd say that's obviously a personal choice but I would try to find out how long the waiting lists are and go to the one which is shortest. I would also think about which Trust is more likely to consider referral to GB and which could give you some emotional and psychological support if you need it...in respect of the latter Belfast offers absolutely nothing - you are in, have your miscarriage confirmed, given your options, if you choose surgery or medical management you'll come in, it will be done and you'll be sent home by lunchtime with a letter for your GP, possibly a call set up from an overworked community midwife and that's it - your pregnancy is over and you will get no follow up from EPU or a midwife etc It's all a very clinical process. The EPU midwives are lovely when you are in but there is no support to help you cope with the loss. I have fought for counselling to be offered. I have been told it is being offered. But experience of talking to women who have been through the RMH for miscarriage would suggest that they know nothing about counselling. I find this hugely frustrating. Was an offer of counselling mentioned to you when you were in EPU in Belfast? The Ulster is different because they have a bereavement midwife. The Consultant in Belfast will give you the medication and will scan you as will a Consultant elsewhere. I find it amazing how one doctor can get a reputation for being "an expert" or "the" person to see when by any objective standard he/she doesn;t do anything different from anyone else and does what they do do with a questionable bedside manner! Beside the I have it in writing from the Belfast Consultant that he is "not an expert" in recurrent miscarriage but simply "retains an interest in the area". Here to help any way I can. I'll PM the doctors name in the Ulster

Mamakate75 Sun 11-Jun-17 21:45:02

Mahoolie thanks for your PM I'll get back to you asap

Mahoolie Sun 11-Jun-17 21:58:37

Thanks smile

Belfastgal1234 Wed 14-Jun-17 19:10:49

Thanks mama kate I went to the epu in the ulster with both my miscarriages. But while I saw the poster on the wall in the waiting area of epu about the counselling it was never mentioned to me any one! Honest truth I had some lovely epu nurses and some awful ones in the ulster. Which was why I was happy to go elsewhere for rmc. First miscarriage was discovered at booking scan. I had no bleeding or anything, I was let to believe that there was a chance everything would be fine in my pregnancy. As the person doing the scan said she would talk to a doctor and they might come and do an internal scan. She came back saying she had showed doc the scan pics and the doc didn't think it was necessary to talk to me or do an internal, and I was given an appointment for epu two weeks later. I really wish someone at that appointment had prepared me for it not to be OK.then the epu appointment confirmed a mmc. I was asked to decide what I wanted and as I was too upset I was booked in for medical management and told I could cancel it if i changed my mind. I had medical management and was told to sit in waiting area for 10 mins and then go home of I didn't feel sick. I was told u would get a phone in 24 hours to see how things were going and was booked in for a follow up scan a few days later. 24 hours later i had no sign of any bleeding what so ever. And no phone call either. A few days later I went to the epu for the follow up appointment... 45 mins after my due appointment time I stopped the nurse as she called the next person in to ask why it was running late... They were not running late but they had no booking for me. Even though I had the appointment card tge previous nurse had given me. Now this nurse was lovely she gave me real advice and arranged surgical management for the following Monday at lagan valey and that she would meet me there. She also apologied for the other epu nurse and said she would be ensuring her manager was made aware of what had happened. Fast forward 7 months and I am attending epu again in the ulster for my second pregnancy.. Turned up to my first appointment and the nurse called me in by the correct name. She then proceeded to talk to me about why I was there using the notes in front of her. It all for very confusing as she starts talking to me about previous epu appointment the previous week which I hadn't had as I had been referred from gp. Turned out they had mixed up the notes and the ones she had were someone else's. So all in all my epu experience at the ulster really wasn't great. And with regards to post surgical management At lagan valley I was in had it out by 3pm with no follow up what so ever.. No phone call or anything..

lighthouse33 Thu 27-Jul-17 13:32:16

Hi there, sorry to read about your losses. There is a website with some information for anyone suffering recurrent miscarriage in Northern Ireland. It is created by a couple with experience of recurrent miscarriage and is designed to offer anyone in the same position a bit of support or a resource for information. The website is availble on the link below. Good luck
miscarriageni.com/

Mamakate75 Thu 27-Jul-17 23:57:19

The website referred to provides alot of information. Unfortunately it is not up to date and there are some inaccuracies as

1. Testing procedures and referrals on the NHS have changed, and new bereavement care pathways are now in place which mean that all EPU's should provide consistent care and treatment across every Trust in N Ireland. Work is ongoing with various statutory bodies and personnel to develop a dedicated regional recurrent miscarriage pathway and work on providing psychological support.

2. It refers to Origin Fertility which no longer exists - GCRM have taken over

3. Immune testing (NK cells) and treatment may no longer be available in Northern Ireland through 3fivetwo via Kingsbridge and the miscarriage clinic mentioned there (which incidentally has had many poor reviews, despite the promoted testimonials on site - as there is no expertise in miscarriage in N Ireland, not even privately so couples spend money here only to get the same as what they get on NHS, in what would seem to be a less than supportive environment, only to end up spending more money going to GB - it therefore is possibly better going straight to GB (St Mary's in London, Prof Quenby in Coventry, especially for uNK cell testing - she is the leading expert in this area and it costs £560 for a comprehensive package of tests and advice - or to Mr Hassan Shehata in Epsom ). Thus saving time and money, where there IS expertise on recurrent miscarriage investigation and treatment (London, Coventry, Epsom) , skipping the private clinic route here - but this is an individual choice )

4. AMH testing is only available through Regional Fertility in Northern Ireland or privately in the Ulster Independent Clinic or elsewhere. It may also be very difficult for a man to get semen analysis unless the couple is experiencing problems getting pregnant as well as miscarriage - so there may be little a GP or Gynaecologist can do - couple may need to be referred to RFC to get this on NHS.

5.The PCC Position paper on Recurrent Miscarriage needs some amendment (I should know as I asked the PCC to do this work on miscarriage care and treatment and fed directly into it for three years - and still am working with them). Re the portion quoted, it is not that only a small number of women 'qualified' for referral to GB as much as there has been very little willingness from some of our Consultants and Trusts to refer women over even though they DO meet referral criteria in many GB recurrent miscarriage clinics (This may or may not be because some of these consultants run the private miscarriage clinic here.... ie as it may appear to them not "good for business" so to speak)

6.In terms of support there have been some developments over recent recent years and this website does not mention that there is a Childbirth and Loss midwife in the Royal who you can speak to and who can support you (as well as the Bereavement Midwife in the South Eastern Trust - who is the only such midwife who can provide counselling)

7.Nor does it mention that any patient in the Belfast Trust who has suffered a miscarriage or ectopic pregnancy can ask to be referred for free counselling with Fertility Counselling Services NI Ltd who will tailor their counselling to loss and miscarriage (as opposed to fertility problems re getting pregnant)

8. It doesn't mention an active and very welcoming support group which meets on the third Thursday of every month in the Willow Building of Antrim Area Hospital at 7.30 pm. (run by two midwives)

9. The Miscarriage Association of Northern Ireland (now defunct) was a completely separate organisation from the Miscarriage Association in GB - however,in recent years the PCC has worked hard to develop closer links with the MA in GB and it's Director has been over to N Ireland several times to give training to local midwifery staff.

10. The PCC have also distributed thousands of copies of the MA information booklet on miscarriage (and posters) to every GP surgery in N Ireland and every EPU and gynae/maternity ward in N Ireland. In Belfast you should be given this booklet if you suffer a miscarriage while in the care of the Trust. This booklet will have a sticker on the back giving contact details for counselling.

11. In relation to the Tommy's Miscarriage Research Centres, it has proven difficult for women from N Ireland to participate because once again, unless you wish to pay privately for travel etc there has been a reluctance from our Trusts to apply for funding for women/couples so that they can participate. Some of these clinical trials also have upper age limits and other conditions attached. Some may require Consultant referral. GP's in N Ireland cannot refer patients directly to healthcare services in GB. Obtaining a willingness to refer may be difficult to secure.

12. In relation to testing and standards there is some concern that we may not do the recurrent miscarriage tests in N Ireland in the correct timescale or to the correct parameters (St Mary's are considered to be 'gold standard' for RMC blood tests and hysteroscopy, another procedure we find difficult to get now in N Ireland from the Recurrent Miscarriage Consultant).

MAsMum Thu 07-Sep-17 19:26:34

I attended DH at the Royal after suffering four miscarriages and can only recount my experience which was that I found him very understanding and thorough. He listened to my concerns took them onboard and provided me with exceptional care. I tried a variety of treatments whilst attending him. I had done a lot of research and we actively discussed different treatments and the merits and disadvantages of each of these at my appointments. I realise that unfortunately there has not been enough funding or research to identify treatments that work in all cases and this saddens me as nobody should ever have to experience a miscarriage .
I however was lucky enough to get my "Take home" baby and will be eternally grateful.

Mamakate75 Mon 12-Feb-18 03:03:40

MAsMum I remember being in contact with you back in 2012. A lot has happened to me in that time - and with my care for recurrent miscarriage - or lack thereof. In short, you were lucky. The consultant of which you speak doesn't seem to have anything more to offer than clexane, aspirin, high dose folic acid and progesterone - if it works...great...if not...VERY different story...the number of women for whom this plan does not work and who he simply 'moves on' or 'abandons' or 'discharges' is staggering...particularly when there IS so much more he could do for them. It would seem that professional pride gets in the way and for some inexplicable reason he refuses to refer women to a 'proper' recurrent miscarriage specialist in GB. I have lost count of the number of women who tried his plan, then paid good money to see him privately only for that to fail too (because he really isn't a recurrent miscarriage 'specialist' as such - admitted this to me) and ended up having to go to GB themselves and pay to see Prof Regan, Prof Quenby or Mr Shehata to get the care they needed. Prof Regan was astounded that he hadn't done a hysteroscopy on one lady who had 5 consecutive miscarriages - in fact he refused to do one, even privately, when she asked - and it turned out she had a septum which, most likely was the cause of her miscarriages. Others saw him privately and had a less than pleasant or encouraging experience prompting them to declare "He's an amateur. I have no polite words". And these are women who were not treated like I was - that man who supposedly gave you "exceptional" care sat and literally shouted at me as I miscarried in front of him for a sixth time -and was losing a baby it had taken a year to conceive - he threatened to "move [me] sideways", called me names, was cold, dismissive and looked at me with distain. He then went on in the months that followed to refuse my polite request for an endometrial scratch (privately), refused to refer me to RFC despite me meeting all of the criteria for referral, tried to tell me I had adenomyosis writing to my GP that "Maybe this will be the straw that breaks the camel's back" re me wanting to try again and referred me for a pelvic MRI but before i could have it he had discharged me on a whim and in the middle of a high risk pregnancy and without providing me with any explanation or an alternative Consultant - he left me high and dry in pregnancy after 6 previous miscarriages and with an outstanding MRI to be done. I went on to lose that baby two weeks later. He didn't even as much as utter a word of condolence - in fact to the contrary - a more callous reaction you'd be hard pressed to find - he put all his energy into covering his professional backside by sullying my reputation. Not once did I officially complain about him but the powers that be in the Trust and his professional regulatory body are sufficiently concerned ...as many others actually have complained. I'll say no more here...but this man is not the provider of "exceptional" care you think he is...and I noticed a trend over the years - he would always start out 'concerned' and 'approachable'. He'd cry when you miscarried (although that is unprofessional) and would hug you (again unprofessional in the manner in which he did this) but he'd throw all the medication at you in the hope that something would stick...meanwhile continuing to be 'concerned'...if you got a baby...brilliant...patients runs off and tells everyone "how lovely" he is...if not...different story after two miscarriages under his care he starts to get distant, after three he got openly hostile towards me..and it doesn't matter if you are an NHS or private patient. One lady who saw him privately for recurrent miscarriage care and treatment and who miscarried for a fifth time under his care was told "I can't offer you anything more - go home and google some of the doctors in England" and that was that...left to her own devices as she despaired with each further loss. Go to Dr B in the Ulster if you suffer recurrent miscarriage - she is a dream compared to what Belfast will offer you. I have been miscarrying my babies since Oct 2010. I have lost 8 babies in that time and the more I lost, the less care i got. I had to fight for over a year to get referred to a specialist with the level of expertise I needed...and when I saw him- eventually-he told me after one set of bloods what my problem was and why I lost my babies at 11-12 weeks...7 years it took to get a reason and a proper targeted plan...a plan that he was able to explain properly and which is tailored...but the consultant in Belfast wasted at least three years of my fertility faffing around with plans he had no notion whether they would work or not, who constantly said "I don't know why this is happening" yet point blank refused to refer me to someone who could help. I was told by the specialist in GB that had i seen him 3 years earlier, my chances of a successful outcome would have been greatly improved. As it is I have only a slim chance now due to my age of ever bringing home my rainbow baby. 7 years and counting of loss is hard enough but to have been so psychologically and emotionally distressed by my local consultant - when he knew what these losses were doing to me and knew that my mother was in ICU at the time he became hostile towards me - is unforgiveable. As I said, you got your baby with clexane...you were lucky...but any competent gynaecologist can and should prescribe anticoagulant for recurrent miscarriage...in other words the consultant you saw gave you standard recurrent miscarriage care and treatment and thankfully it worked...it doesn't always work and this is where we need a proper recurrent miscarriage specialist in N Ireland...because Belfast certainly does not provide this care or treatment at present.

Julzsingfan Thu 05-Apr-18 12:58:22

Hi, I've recently moved to Coleraine from England and have suffered 13 pregnancy losses 3 of which have been very late 19wks, 21wks, 22wks and my first pregnacy I gave birth to my beautiful daughter at 25wks who is now 21 smile after reading this thread I am now panicking. I'm just about to turn 40 and have just found out I'm pregnant. I had come to terms with the fact I would never have anymore children after burying so many and took precautions so this would never happen to me and the people around me again. I was hunting the internet for the best place for me to go and get the help I need when I found this. It's so horrible to read your story's and haven't received the help you have needed and deserved. I honestly don't know what to do. I don't know where to go and ask for a referral back to England if I'm aloud and having the money to do so if I am and if they will accept me being 40. If anyone has any advice of what I can do please let me know. This pregnancy wasn't planned and only took the test today, but this baby couldn't be anymore wanted and loved. Thank you in advance.

Julzsingfan Thu 05-Apr-18 13:12:34

Medication I've been on is Fragmin injections twice a day for antiphospholipid syndrome which has been confirmed. Cervical stitch and high dose folic acid. With weekly scans. I used to attend the silver star in the John raddcliff hospital in Oxford. It had been said that they would contact st Mary's if I decided I wanted to try again but I made the decision not to.

Mamakate75 Thu 05-Apr-18 16:55:37

Go to Dr M in Altnaglevin (Derry) or Belfast (even though I had a bad experience the Consultant there will prescribe the meds you say you need, although you'll get clexane instead of fragmin - probably everywhere) or if you could travel, I would say Dr B in the SE Trust (Ulster hospital) may be your best bet. She is very interested in recurrent miscarriage and is on top of the latest treatments and research. Don't worry we have some world class drs here....although maybe not for recurrent miscarriage. My situation is very unique and I had to travel to Mr S in Epsom to get the level and standard of investigation I needed...most other docs in GB wouldn't have been able to help me either. You will get early scans from 6 weeks, probably fortnightly no matter where you go and they'll prescribe aspitin, clexane, high dose folic acid and progesterone. Good luck

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