Recurrent miscarriage clinic - NHS or private - where to go? Post Reply

[meldoublew]

Hello
I was wondering if I could have some advice on this sad subject.. I have so many questions I don't know where to start… and it is a subject that is not easily approached in person, each time when a person who knows me asks me "how are you feeling now?" I burst into tears but writing on here seems a bit easier..
I have just had recently my 3rd missed miscarriage and have been transferred by the C&W hospital to see a specialist consultant for recurrent miscarriages. My private health insurance originally gave me the green light to go ahead with this specialist only to call me back now, after my first appmt, to tell me that they made a mistake and that in fact they do not cover any miscarriage related investigations.. so now going forward I have to either pay for it myself or find a NHS clinic. Does anybody know how much costs could potentially be involved in this? The specialist so far said that he wants to check for chromosomes issue for me and my partner and he also ordered a blood test for me to check for blood clots and for immune system. We know that the costs for the chromosomes test is about 300 gbp each for me and my partner, which we had to pay ourselves. After all this is checked what else can there possible be checked / what other costs can we expect to occur in case we stay private?
In the meantime I have asked my GP now for referral to NHS and just received a letter inviting me to make an appmt with St Georges or if I want a different hospital to call them up and let them know. I have no idea where to go to - location wise C&W would be best and my last 2 miscarriages were handled by C&W Early pregnancy unit, I have no experience with St Georges but I have heard good things about St Marys hospital. Any suggestions on this please? Or stay private after all and just pay up???
Last question. Luckily I already have one healthy child (nearly 3), which is what keeps me going really. However she is already very sensitive and even though we never really told her when I was pregnant she obviously felt that something was not right each time we lost our baby. How do you deal with your toddler in this difficult time?
Finally, I am happy to hear any success stories from anyone who had the same issue and managed to give birth to a healthy child after all.
Thanks in advance for any help, info, suggestions..

[supermummy]

I'm sorry you are going through this, it is sadly quite common not that that is any consolation of course. I was in a very similar position a few years ago so i do understand - I had one child after 2 early miscarriages and then had 3 more miscarriages, one of them at 14 weeks.

It is hard to answer each one of your questions succinctly but I'll try. Forgetting costs for a moment, I would recommend private investigations as these will happen MUCH quicker than on the NHS. Some tests are also not yet readily available on the nhs (eg natural killer cells). I was lucky that BUPA covered our investigations but I understand the various blood tests for both of us came in about £2000. I also Had a camera look inside my uterus and tubes (forget the name!) as a day procedure. I think that was about £1500. Clearly it is not cheap but I would have done it even if we had to pay - by the time I had completed all investigations and decided to start ivf I would not even have had my first proper nhs appointment!

If you have confidence in the nhs team you are under then of course it is worth considering. Just bear in mind that they may not be able to fast track you to the tests or treatment you need.

As a first step though, I would highly recommend a consultation with Jane knight at the Zita West clinic. She will help you make sense of it all, practically and emotionally. I left with a clear plan as to what to try next. They do have their own private consultants but they know all the main fertility centres and can save you wasting time and money going to the wrong type of place eg you don't want to waste your money at the private clinics that are essentially an 'ivf production line'. It sounds like you need proper investigation. I wasted 6 months seeing a gynaecologist recommended by my gp who lost my notes and test results, didn't do the right tests anyway and basically told me to go and get drunk and relax! It was well worth the £110 fee for peace of mind.

We settled on The Lister who I found to be great, very thorough and explained exactly what tests they would do and why.

I have since had 2 further children which I really didn't think would happen.

Feel free to Pm me if you want more specifics.

Good luck.

[Reenie1978]

Hi,

Sorry that you are going through this. It is an incredibly lonely experience. I paid for tests privately as although I had lost three pregnancies, one loss was due to our baby having Edwards syndrome so they said I had to have another unexplained loss before they would refer me on the nhs which given we had jus lost a child at. 17 weeks was too painful to contemplate. We saw the recurrent miscarriage expert at the zita west clinic and although the doctor was slightly quirky he really was wonderful. He arranged tests for us at st Mary's and they showed that I had a blood condition that prevented implantation. I injected blood thinners and took a specific dose of aspirin in my next pregnancy which was successful as was my next. I can recommend going privately - it is a lot faster and they did tests that werent available on the nhs. I think it cost roughly £800 in total but that was almost 6 years ago. Good luck and I hope you will get some answers soon. X

[sw18nanny]

Hello,
I am so sorry for your losses.
I have been to St George's RMC and also St Mary's RMC.
I found St Georges much better - even though St Mary's do a few more blood clotting tests that's all they do. At St George's they checked hormones, bacis immunes, diabetes etc. Glad I went there first.
Having said that we ended up having many more tests done privately and ended up at Zita West - saw Dr Ndukwe and starting his recommended treatment today.
I have yet to see if it is going to work or not . Oh and we don't have a child and I olways miscarry withing a week or so from a positive test so have to have a treatment before I actually get pregnant - hence why the NHS treatment didn't work.
Please PM me for more details

[tamandcraig]

Hi, sorry to read about your losses and the issues with your private health care.
If you're having recurrent mcs, which I had, go see Raj Rai at St Marys in Paddington. There'll probably be a bit of a wait as he's always busy but he's the best around. He's the best in his field and worth the money. We tried a number of different docs and hospitals before seeing him and feel that we could have saved ourselves a lot of money and heartache if we'd gone directly to him.
I got referred there by The Lister.
http://www.imperial.ac.uk/AP/faces/page ... 9306723472
He doesn't mince his words and in my experience gets to the bottom of the issue. I recommended him to a friend who also had recurring mcs and she now has a little boy.
If you want more in depth info feel free to IM me.
Costs could be up to a couple of grand depending on what tests he completes, could be a lot less tho. As someone else mentioned it's difficult to put a figure on it. If you re worried about costs Raj will list out what tests he thinks you need na d the price for each so you can decide what to go ahead with. You may find that some of the procedures (he does 4d womb scans for example) are covered by private health care. would be worth checking with your insurers again.
Good Luck!

[Reenie1978]

It was Raj Rai that I saw via Zita West. I have my two beautiful boys thanks to him. He was quirky but great!!

Good luck with it all!

X

[tamandcraig]

He is fantatsic!

[tamandcraig]

and totally agree about his quirkiness!

[Janet14]

Hi
I could almost have written your post myself a year ago and you have exactly the same questions I had at the time. I also had three in a row and although happily I finally had my second baby this year (my eldest is also three) I still think back on it as the worst thing I've been through.
Have you tried your GP first? There's actually a lot of tests they can do straight away - bloods etc. I had mine tested through Thurleigh Rd Practice.
I then had my other tests done throug the NHS St Thomas. However, I called the hospital directly and got an appt so much quicker than via referral from my GP. The lady there was very helpful and deals with the diary and appointments. I was put through to her and given her name as the person to speak to. However I did have my miscarriages there so I'm not sure if you have to have been there already.
I was also recommended St Mary's (although waiting list for nhs there was very long) and have also read Zita West's book and would recommend it to anyone trying to get pregnant.
One thing I would say though is all my tests came back normal and as soon as I started the tests I got pregnant which went full term. In other words sadly this is very common and most of the time there is nothing wrong, it's just nature's way. It doesn't help at the time though and anyone going through it has nothing but my utmost sympathy. I'm sure you will have a healthy pregnancy soon though, especially if you've already had one.
Good luck and chin up
Xx

[Catherine123]

So sorry you are going through such a tough time.
I've had a very similar experience with 3 miscarriages since my daughter who is 3. I was referred to st George's RMC 5 months ago and impressed with them and surprised at how quickly the appointment came through - within weeks and I had all the tests done on my first appointment, so incredibly quick compared to the fertility treatment I received there (clomid) where I would be waiting between 4 and 9 months for my next appointment/fertility scans etc.
They will send you for a huge list of blood tests and swaps and possibly a scan too, so well worth perusing this free route as would cost a fortune privately. Even if you then go private as we have done at the ARGC they will use the NHS test results and were impressed with how thorough st George's had been!
I was told that if nothing obvious shows up on tests (didnt in my case) the two most common causes of RM are chromosomal (to definitively test this on the NHS they would need to test the products of conception, so impossible to do unless you have another miscarriage) or immune problems ( apparently common with women who have had one successful pregnancy and then a history of RM afterwards). If st George's think you may have immune issues they may put you on steroids, and aspirin the next time you fall pregnant. This as far as the NHS will go with immune testing and treatment (although has helped many women with RM fall pregnant). We decided as time wasn't on our side and I have other issues to then go the private route and ARGC who specialise in immune issues. They will do a blood test (about £900) to test immunes and is sent to Chicago as still a very new and developing (and often controversial) area of diagnosis and treatment. Mine came back far too high, so currently undergoing treatment to lower before starting IVF. Do message me if you want any more info. On a separate note if you had your Erpcs on the NHS my friend recently discovered you can often claim back cash from private health cover so may be worth investigating, even if they were some time ago.

[meldoublew]

I just wanted to say thank you so much to everyone who took the time to reply and to Annabel for re-posting. I will have to digest all that information and make a decision as to which road to take together with my partner. I might get in touch with a couple of you for more info via pm.
Thanks to all and good luck to everybody still trying..

[Ferrywind]

Hi there-
Just to let you know I also had 3 miscarriages (including MMC) and 4th pregnancy was successful. Had all my tests done on the NHS at St Mary's RMC who were very thorough and found nothing wrong. I'd had the MCs dealt with at West Midd and a specialist there had recommended 75mg aspirin, as did St Mary's - and think this is something they do when can find nothing else obviously wrong! Who knows if it was that or just 4th time lucky.

St Mary's RMC then monitored my 4th pregnancy closely in the first 12 weeks. I'd say the hardest bit was then being put back into the regular NHS system at 12 weeks as you are treated as low risk so have no access to consultants etc and at 20 weeks I was fed up with not being able to even ask a Dr a question at my scan (was told to book an appmnt with my GP!) and at that point we went private. Personally I would say this would be better use of money (if u have to choose) than paying for the miscarriage tests privately as St Mary's RMC were so thorough and u get a lot of the same consultants on NHS who u would pay for privately anyway. However once you are past 12 weeks are classed as low risk again as NHS just doesn't have the resources (and if you are anything like me you need a lot more reassurance/ checks that everything ok after 3x unsuccessful pregnancies). Interestingly when we moved private we had to be 'high risk' and pay a higher rate due to 3 MCs- so NHS classing as low risk is obviously due to resources. Being private for pregnancy meant if I was ever feeling worried I could just pop in, no wait, and have the heartbeat monitor strapped on for a bit to be reassured.
It's such a personal difficult decision. If you can afford to do it all privately then go for it- but actually I thought the wait for St Mary's was ok (few weeks at a time when I wouldn't have been trying to get pregnant post MC anyway). I wish you luck in whatever you decide and feel free to PM about any of it X

[Lucypsouthfields]

So sorry to hear. It's such a lonely place when you constantly miscarry. I had 3 before I got to St Marys, then one further whilst in their care (put on 150mg aspirin - either that and/or my relaxation due to feeling in safe hands worked) before my 4 year old, remained in their care for a further miscarriage and birth of our 2nd daughter who is 2 months old today (this time on aspirin, Clexane and thyroxine) - I kept asking what could help but wouldn't harm, and they tested thoroughly and regularly (for free) and advised that I needed. I found I had access to good consultants (including Raj Rai and also others on his team who are all pretty good) for scans, tests etc as often as I wanted - all free - and when you are scanning every 2 weeks etc until 12 weeks and then more regularly than normal afterwards it all adds up. We went privately at C&W for pregnancy no.3 and they had no understanding of early pregnancy. That said I have since met Mark Johnson at C&W and if we do go for a 3rd (I am nearly 43 so tempted but aware may not work!) then planning to talk to him as I had a c section for breech this time and therefore will want access to same consultant throughout which you can't guarantee on NHS. But without that complication I would be straight back to RMC at St Marys again
I also found a great consultant who it would be worth talking to - Michael Dooley (met him at the Fertility Show then saw him in Harley St but he also practises at Lister) - he advised all tests to have and which I could get via GP. Would highly recommend a consultation with him (£250 well spent as he will point you in the right direction as he has heaps of experience and knows everyone in the field!) Sorry to hear your insurance won't cover. Usually they do the same as NHS (Only interested after 3 mcs in a row). All the best! Hang on in there. I saw one consultant after my first D&C who said that if you get pregnant enough times you get a baby in the end - and from my story and others it is generally true (but a painful journey full of heartbreak along the way). Make sure you have a supportive family and friends network around you and follow your instinct. God bless. Lucy

[rose8garden]

Hi all,

I had my IVF cycle last year Sept, with a fresh embryo replacement which failed and FET (2 embryos)) in March which I have miscarried due to blighted ovum. Now my doc wants to investigate NK Cells (with Uterine biopsy) which will cost around £600. I have BUPA cover though work from past 4 years. Do BUPA cover this costs for investigation ?
If yes, what are the tests that can be done with BUPA?
Every time I call they say, it's not covered. How did you manage to get funded?

Thanks,
Rose

[::jojo::]

Hi there - so sorry to hear of your situation - I have been there and your post really resonated with me. After the birth of my daughter I had 3 miscarriages and ended up at the recurrent miscarriage clinic under Prof Lesley Regan at St Mary's who was wonderful and really helped us understand the process of tests and what to expect. I felt incredibly supported and guided by her which was nice in itself after 4 years of a constant cycle of hope, devastation and bewilderment - just me and my husband dealing with it on our own effectively. She has a very informative book as well which is well worth looking into. On your question re your toddler - it is obviously down to your personal situation but we took the decision not to tell our daughter anything more than simple concepts of Mummy feeling unwell or sad - she was too young to understand and may have had very confusing emotions that may make it all the harder in an already challenging situation.

While under Prof Regan's care we had a miscarriage but were able to ascertain it was a chromosomal abnormality which although was yet another devastation was reassuring in that it was nature's way. Even though I felt back at the bottom of the mountain in many ways we were actually a lot further on than I thought given we had ruled out quite a lot by this stage as well as finding some possible issues that could be managed. I did get pregnant again and with the help of heparin injections during pregnancy, had our second child who is now 7. My advice is to read as much as you can so that you understand the causes of miscarriage as well as the purpose of all the tests and I do hope you find the best hospital/clinic and consultant for you.