Not impressed with Lesley Regan's clinic

[SophiasMummy]

Hi, this is my first time on mumsnet, and I wanted to post a message about my experiences with Lesley Regan's recurrent miscarriage clinic at St Mary's.

I had my third consecutive miscarriage in Feb plus another 4 years ago before DD (aged 3) was born. I was referred to the clinic by my GP. Chose to go privately as we have good insurance that would cover the costs and this also meant that we would get seen a lot sooner.

I saw the consultant Mr Raj Rai who is quirky to say the least but obviously knows his stuff and despite his unusual manner definitely means well.

My main reason for posting is that despite the impressive medical pedigree of the doctors, and I do believe they do good and important work, they are running a total s**t show in terms of admin and patient support.

In the space of four weeks, I've had lost notes, referrals for tests not forwarded, been sent to the wrong place for tests and messages not returned and appointments canceled with no notification. The clinic PA has a well established reputation for never returning phone calls, passing on messages or following up. (Even my consultant admitted this!) Given how stressful the situation of any miscarriage already is, this lack of attention just compounds an already awful situation. Nobody wants to go for a scan to see if their baby is alive or dead only to find that you've been sent to the wrong place.

Last week I began to miscarry again. Mr Rai had told me that if I had another miscarriage it was essential that I had a D&C so we could see if it was a miscarriage that was 'meant to happen' i.e.genetically flawed or one caused by my thrombophilia (generic name for the blood disorders I have). Sounds sensible, but nobody actually tells you what to do, where to go or if you should do anything differently if you do have a miscarriage which is odd given the nature of the clinic. So not only did I spend the weekend bleeding, knowing I was losing another much wanted baby, I spent it stressed out that I was doing the wrong thing and that we might be missing out on the opportunity to get more important information to prevent this from happening again.

I wanted others in my situation to know what to expect - an appointment at Prof Regan's clinic is often presented as the 'great hope' and whilst the information you get could be life changing, the service you get will just add another layer of stress and frustration to what is already a horrendous time. Forewarned is forearmed!

MC 5 DD1

[SophiasMummy]

Hi LuntaticFringe (feels a bit wrong calling you that!) I'm so glad to hear that you are having a much better experience and wish you all the best for TTC.

I think we are dealing with different teams, you get program co-ordinators and we get the private PA - who also gave us such a public and effusive congratulations when she heard we were pregnant that I thought maybe she thinks she's working in an IVF clinic, where people can't get pregnant, not a clinic where people do get pregnant, but it ends in disaster! She was so well meaning my husband and I just had to smile at the time but both admitted later that we found it somewhat distressing.

Will keep and eye on your posts and wait to hear your good news.

[kissmummy]

hi sophias i posted a couple of months ago after a truly appalling experience at St Mary's. i won't go through it all again (you can probably find the original test) but in a nutshell we waited almost three hours in a horrendously overcrowded room with my husband perching on a coffee table only to be seen by someone who skimmed my notes, then said, very confrontationally : "So what is it you want??" as if there was no point in us being there and no hope. Thereafter i had to take control of the appointment, and make suggestions for my own investigations and treatment. NOT what i expected from a specialist clinic. If i hadn't been quite clued up myself my appointment would have been a complete waste of time.
i know it was a bad day for them that day (three of their consultants were off) but it's no way to treat any recurrent miscarriage patient. i came away feeling terrible.
Totally against my instinct, which was to give up, I forced myself to continue with them and I'm glad I did because the second set of tests I had there did show up something unexpected (a possible blood clotting issue that had previously tested negative.) and i got to see Lesley Regan herself.
However, since that has happened I've had very strange and apparently inconsistent follow-up advice (they don't seem to want to treat it with heparin, since a third test was negative. however, another patient i know with almost an identical case history to mine, and exactly the same blood test results, with just one positive clotting result, IS getting heparin.)
I took my test results to the private hospital where we've also been seeing experts and they couldn't understand why i would not be prescribed heparin in the light of my "strongly positive" test result [the notes say].
I think the clinic is totally overstretched. They are definitely worth being with, as they do different testing protocols etc, but if you can afford it I would continue to pursue all possible avenues privately, at the same time as going to St Mary's. It's not ideal having two sets of opinions/advice but we have to give ourselves every possible chance.

[kissmummy]

sorry, i mean you can probably find the original post not the original test...

[SophiasMummy]

Thanks kissmummy for sharing your experience. It sounds awful, but it's always less upsetting to know that others have also had a bad time.

DH and I have decided to take our results and run! I was already seeing a consultant who specialises in high risk pregnancies on account of my thrombophillia, uterine issues and the severe placenta previa I had with dd 3.

The only reason we went to Prof Regan's clinic was to make sure there weren't any additional issues going on after 3 mc in 12 months (now 4) I'm 40 in a couple weeks, so am sure that doesn't help either...

Now that I've had the tests and they haven't identified anything new or proposed new treatments - I was already on aspirin and heparin after the birth, I think I'll be much happier back at my lovely consultant Mr Patrick O'brien when the time is right again.

Hope all is going well with ttc - I checked out your older posts.... how did you get on a the Lister? Did you find out anything new?

[kissmummy]

I see Yau Thum at the Lister and he is recommending (prednisolone) for NK Cells - bit experimental but worth a try - and clexane, plus baby aspirin. he's willing to throw everything at it. St Mary's on the other hand only seems to want to prescribe treatment if they are 110pc sure of a diagnosis. I'm not sure about this approach when it comes to women who are clearly miscarrying again and again without intervention - my feeling is that it's got to be worth a try. If the next pregnancy fails we may try Taranissi, just in case he has any different ideas. it's the last resort. Where's Patrick o"brien based?

[SophiasMummy]

Patrick O'Brien is at the Harley St Centre for Women 78 Harley St. He is not a miscarriage specialist, his specialises in 'maternal medicine and high risk obstetrics'. Here is is website in case you or anyone you know needs it. www.hscfw.co.uk

I'm just beginning to learn about NK cells, but my instinct is that my problem is just age/bad luck. Mr Rai says this is his feeling too, but I know they are not strong on the NK theory so are perhaps discounting that option.

I am taking aspirin for the Factor V Leiden and wasn't able to get pregnant at all without it. Did start off on Heparin/clexane but had a v. bad experience where a healthy developing pregnancy was ended at 9.5wks because of severe bleeding. Specialists say the clexane didn't cause the bleed, but once it started the clexane definitely made it worse. I was having scans every other day and we could see the baby growing and developing but eventually the bleeding got too much... by far the worst miscarriage of all... devastating to think nothing was wrong with the baby. I find a miscarriage where there was never any heartbeat much easier to deal with and a blighted ovum easier again.

You know you've had way to many mc when you can categorise them LOL

Off for a scan tomorrow to check the mc is complete. Let me know how you get on with Yau Thum...

[kissmummy]

oh sophias that sounds absolutely awful. i can imagine how hard that must have been with the bleeding and scans every other day. you must have felt like you were losing your mind. i'm "only" (!) 35 (nearly 36) and my miscarriages strted when i had only just turned 34 so i don't think age is such a big factor in my case. i'm not sure about NK cells in my case but will try anything...
good luck with the scan - not that luck really plays any part in this miserable situation.

[SophiasMummy]

Thanks kissmummy, just looking forward to this event being over and getting my body back to normal again. Looking forward to hearing some good news from you soon!

[Pansyblue]

Am resurrecting this thread as am currently having issues with this same clinic (which I paid to see privately after reading some mumsnet threads).

I’ve had my tests done, but literally cannot get through to anyone now for weeks to find out whether the results are in. I have tried calling lots of days, have left voicemails and sent multiple emails. I also haven’t been billed for my initial appointment (but have paid out ££££££ to the blood company for the tests) and have been told I can’t book a scan, as they haven’t yet sent me the report from my initial appointment.

Has anyone had similar issues? What are my options now? Can I get the blood company to send me the results direct and take them to another specialist? Its v frustrating - I paid privately as I wanted to be seen quickly to reduce my stress levels, but now my inability to get through to anyone at all is making me much more stressed!