NHS vs Private Recurrent Miscarriage Clinic

[stephcumbria]

Hi all, I've never posted here before but reading on here brings me a lot of comfort.

I'm so sorry for anyone who is going through their own version of hell with loss and bereavement.

We have just had our 3rd miscarriage in a year. Every time we have lost between 6-7 weeks. I'm 35 and my husband is 38. So we are feeling the pressure!

I had SMM 2 weeks ago for the 3rd miscarriage and was told by the NHS consultant that it would be too soon to do any tests for 4-6 weeks after the miscarriage. However, we seen him 1 week after the op, he had no idea who I was (even though he operated on me) (I also understand they must see loads of people) but he sent me for bloods 1 week after the miscarriage even though the week before he said it was too soon!

So we went to see a private world renowned specialist on fertility who said I have to wait 4-6 weeks for testing (basically after my first period). The tests they do privately are very extensive, but come with a price of £5k.

Now we are stuck, I feel like I've lost faith in the NHS as their consultant has put me through bloods too soon and the results are likely to be wrong as I still have HCG in my body. But the flip side is we could spend a lot of money with someone who knows what they are doing!

Has anyone had any experience with both and is it worth paying privately? The private consultant is sure there is a problem and he is sure he will find it. The NHS say they don't always find the issue (maybe as their tests aren't as extensive?).

Just feel £5k is so much money (that we don't have) but time isn't allowing us to follow a potentially long drawn out NHS process.

I'm really sorry you're going through this. It's just absolutely awful.

I was experiencing similarly early losses. This doesn't answer your question directly but after my 3rd miscarriage I actually got my GP (NHS) to run some blood tests for me. I'd done some reading online and just had a feeling that my early losses were down to a clotting issue. I went to see my GP and asked whether she would be willing to run tests for clotting factors while I waited for the recurrent miscarriage referral. She was willing to run the tests and they came back weakly positive for Antiphospholipid syndrome.

On the back of that, the minute I got my next BFP, I phoned the Early Pregnancy Unit at the hospital and explained the situation. They were fab and got me in to see a consultant the following week so by the time I was 6 weeks pregnant I had started heparin to thin my blood. While waiting for that appointment I started low dose Aspirin.

This may all be irrelevant but I thought I'd mention it in case you want to ask your GP to run clotting blood tests for you.

I would try Tommy's clinics - they have a couple across the country and I believe you can self refer - The doctor who operated on you is probably not the recurrent miscarriage specialist - mine were different and different departments so don't write the NHS off just yet.

That being said I would request a referral to the recurrent miscarriage clinic sooner rather than later as the wait time in my area was 4 months

Also NHS will only run pretty standard tests and also won't test your partner (even though 50% of fertility issues are male factor) they'll test for blood clotting thyroid problems etc - the more "specialist" things like NK cells are only available privately but that only costs £500 so I would be very wary of paying the £5k you have been quoted! X

Have a look at the implantation clinics in Coventry University Hospital. It's private but non-profit treatment (was c £350 when I went 5 years ago) looking for uterine NK cells and they do a 'scratch' which helps with uterine lining. You need to be mid-cycle and not pregnant, so would require a break from TTC, but would give you a bit of a breather. I definitely felt I couldn't keep putting myself through it without knowing what was wrong. I'd do that alongside the standard NHS tests and come up with a plan before TTC again. I had a successful pregnancy after 3 consecutive losses on Prof Quenby's protocol. Good luck!

I don't know how helpful this is but thought I'd share my recurrent miscarriage journey.

After one child and 4 mcs had the normal nhs tests. Nothing flagged up. Simply got a letter from consultant telling me tests had come back normal. Phoned her as had no appointment and she told me it was basically bad luck. I could try blood thinners but wasn't any real evidence they'd be helpful for me.

Thinking we were at end of road with nhs, went to private clinic. It wasn't a nice experience. We were given a hard sell on an almost £5k complete package of tests, including a hysteroscopy which I don't think there was any evidence for needing. Some of the tests previously done on nhs came back slightly different - borderline for antiphospholipid and lupus. Also NK cells which I was put on steroids for. The steroids made me depressed but I've only realised this with hind sight. Consultant never asked how I felt about the process. He was only interested in fertility. Husbands sperm was tested as crappy too so the doctor decided we should start ivf to improve our chances, again we were give a hard sell. He didnt even check if we could afford or wanted to go down this route! I should add that at this point we were being charged at his rate of £80 per follow up appointment, which we had not realised we would be.

After one particularly awful appointment of doom and gloom which id paid £80 for, I was at my own GP for something else. I ended up telling her our sorry tale and she was fantastic. She referred me to a different hospital. Had to wait about 3 months to see consultant but he was amazing. He listened, realised we didn't want to go down ivf route and said if i could emotionlally cope with another miscarriage he thought, due to my antiphospholipid results, blood thinners alone could work. We decided to have one more try. Now 18 weeks pregnant. Have had scans every 2 weeks on nhs and staff have been so supportive.

This is just my experience of one clinic. For us the rigorous tests gave us more worries than we needed to have. It was bad news after bad news. I left one appointment thinking I had lupus and my husband left another believing he was practically infertile, even though I had been pregnant 5 times! I know that if blood thinners had not worked we would have ended up on a private route having already had one child. However, I think I would have had more trust for a route started by the nhs, not out to make a profit than from a consultant who owns his own clinic.

How interesting that two of us have had success on blood thinners following only very weakly positive results for APS and lupus.

I think that if the first set of blood tests had been positive for APS we would have avoided all this and still have £5k in the bank! Still got a long way to go with this pregnancy but starting to feel more positive.

Huncamuncaa - it sounds as though your midwives are keeping a close eye on you. Hopefully that will offer you some reassurance. It's very hard after multiple miscarriages to feel positive about a pregnancy. I completely understand that. Having made it to 18 weeks suggests that your blood is now doing a good job and flowing nicely to the placenta so you're in a good place.

I hope everything goes as smoothly as possible for you.

Hi stephcumbria. I’m really sorry about miscarriages. Not sure if this will be helpful but this is my story:

I have one daughter and have had 5 miscarriages after her. I had no issues getting pregnant with her and it was a textbook pregnancy. When she was 1 we started trying again and I had 3 miscarriages in a span of a year. They were all the same: I would get to 7 weeks, start spotting, and miscarry by week 8. As it stands with NHS I had to wait to have 3 miscarriages before being referred for further testing. I was 37 at the time and knew time wasn't on my side so we decided to go privately. I saw a doctor at a Recurrent Miscarriage Clinic in Epsom (not sure if that’s the one you went to see?) The initial tests were about £2.5k (this was about 3 years ago). I was diagnosed with Natural Killer cells and prescribed steroids and aspirin. I had 2 more miscarriages whilst on treatment (one as chromosomal, the other one we don’t know what happened). I got pregnant again in Feb of last year and this time everything went as it was supposed to. All my scans were good (prior to that I always measured behind on my scans with my miscarriages), it was such a straightforward pregnancy. I even delivered on my due date. Now to this day I don’t know if it was the treatment? Or is it just a number’s game?

I hope it all goes well for you xx

Thank you all for your comments. I have started tests with the NHS and we have our fingers crossed for some answers.

Really interesting to hear all of your experiences, thank you so much for sharing.