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Miscarriage/pregnancy loss

Has anyone seen Professor Lesley Regan as a Private patient?

29 replies

AmyHS · 13/07/2011 18:33

Hi everyone,

I have just suffered my 4th miscarriage (3 within the last year and 1 in 2009). After receiving very shoddy care from my local NHS unit, my husband and I have decided to pay to see Dr Regan privately.

We do not have insurance, but have seen her list of fees and feel that, with a little tightening of our belt, we can just afford to take this route.

Whilst I know the fees for the consultations and tests etc, what I am unsure of is how often I will need the tests and whether they might be repeated. For example, at the initial consultation I am expecting to have bloods taken, which will then be tested for various things and that I would pay upfront for these........I would then expect at the next appointment (possibly when the results are in) that I would then pay for any additional tests......over time, once the tests are done, I would just be paying follow-up appointment fees??? Is this correct or am I completely off the mark?

Also, can anyone tell me how much I can expect to pay for treatments such as Heparin etc??

If anyone has actually seen Prof Regan as a private patient and has paid, I would be really grateful to hear your experiences, I just really want to make sure that me and my husband aren't getting in too deep to anything that we can't afford

Thanks

xxxx

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ChristinedePizan · 13/07/2011 18:37

Hopefully someone who actually has will come along but in the meantime I haven't but one of my friends has (although I have been treated at her clinic) and she was very happy with the treatment.

Do they not publish fees online? If not, you could always have a look at the London Womens Clinic which definitely lists fees so that you have a rough idea before going to see Prof Regan.

Good luck, she's an amazing woman and I really hope she is able to help you

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AmyHS · 13/07/2011 18:46

Thanks for your message,

i do have her fees, they are broken down into fees of specific test. i.e TEG £100, APA £115 ect

its just I don't know whether she will order them all in one go so we pay a large amount out straight away, or whether they are staggered so maybe we pay the amount out over a period of a few months.

I suppose I just don't really know what to expect at all, so any info would be great to know.

It's great to hear that she helped your friend, fingers crossed I have some success too

xxx

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ChristinedePizan · 13/07/2011 18:54

I would imagine it's like any private treatment, where you pay for each individual treatment at a time in advance. What happens at the LWC is that you see the consultant, she tells you that you need X, Y and Z and to make an appointment for such and such date and when you go out to make the appointment with the receptionist, consultant has updated your file to show that you need to pay for X, Y and Z. So if you want the appointment, you pay for them.

Effectively you can walk away at any time and I suppose you don't have to pay then and there but IME, I had talked everything through, was very sure about what I wanted to do and what the costs would be so there were no unpleasant surprises

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AmyHS · 13/07/2011 19:03

Yes that all sounds reasonable.

I have never had any private treatment before, so I am freaking out a little bit. I suppose I am just scared that we will get to the appointment and are then landed with a huge bill that we hadn't budgeted for - but what you have said has made a lot of sense

thanks again

xx

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Abra1d · 13/07/2011 19:06

Good for you. I hope it works out.

I'm sure you're having to sacrifice other things to do this. Kudos.

Best of luck.

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lovemysleep · 13/07/2011 19:08

Sorry to hear about your losses. Have you not been tested on the NHS? You should be entitled to tests after 3 consecutive mc's.

I have had 4 mc's, and all the usual tests came back clear from the NHS - everyone kept telling me it was just one of those things, and because I already had DD, I don't think they were that bothered really.

After lots of research, I decided to not bother with Lesley Regan, as I had a feeling that my mc's may be due to NK cells, as I have mild asthma, allergies and psoriasis. She doesn't really rate the theory of NK cells.

I went to Dr.Shehata, privately, and was diagnosed with very high NK cells. The treatment involved steroids, intralipid infusions, progesterone and aspirin - we conceived very quickly, and the treatment plan didn't have any unpleasant side effects for me.

I am currently 28 wks pg with the baby I thought that I'd never have, and I cannot praise Dr.S's approach enough. He has been treating women for 10 years now, and it's such a shame that this treatment isn't widely available on the NHS. We spent about £2500 seeing him, although you can get a referral from your GP or consultant to see him at Epsom/Surrey NHS hospital.

I don't want to unnecessarily confuse the issue here - just to let you know about this treatment. Incidentally, someone was telling me that one of the papers at the weekend had an article about how the NHS was looking into steroid treatment for recurrent miscarriers, so maybe they are moving towards adopting this treatment eventually.....

If there's anything you want to ask me, I'd be more that happy to help. If you do decide to go with Lesley Regan, I hope that it all works out for you x

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RosieAndCharlie · 13/07/2011 19:37

Hello. Sorry to hear about your miscarriages.

We saw the fabulous Raj Rai who works alongside Lesley Regan at St Mary's after three miscarriages in 2007. (We'd originally planned to see Professor Regan but our doctor suggested Mr Rai because the waiting time to get an appointment to see him tends to be much shorter but he has access to the same facilities/research etc.).

It basically worked as you guess in your first message, so the first appointment was pretty expensive because we had lots and lots of tests done but after that it was just the cost of the consultation with Mr Rai (although we were relatively lucky because our problem was picked up in the first series of tests). We also had a few early reassurance scans done at a clinic on Harley Street which St Mary's recomended but I'm sure you could get those done at your local EPU which would save quite a bit of money.

Once we worked out that I needed to take heparin, Mr Rai wrote to my GP and they gave me an NHS prescription without any problems.

Hope that helps and good luck.

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LunaticFringe · 13/07/2011 20:14

This reply has been deleted

Message withdrawn at poster's request.

AmyHS · 13/07/2011 20:22

Thanks everyone,

lovemysleep - The GP was happy to refer me under the NHS, however, due to a number of 'cock ups' since i suffered my first miscarriage (too many to mention and not having been sent for tests after my 3rd being one of them!!) We just don't really have much faith in my local hospital. I know that I might be making the wrong decision here but my husband and I just feel like we are at our wits end with them and to carry on with them would be too stressful at the moment.

I have heard a lot of great things about Dr S too, and I would also be interested in seeing him, but i have a hunch ( based on nothing more than my own google research) that the fact that I had my spleen removed may mean that I have some kind of Thrombophilia, and as I understand it, Dr Regan has done a lot of testing into this.

i'm so happy to hear of your pregnancy, and it really has given me hope - thank you xx

Rosieandcharlie -Thank you too for your post. I have been thinking about asking to see Dr Rai instead to speed up our appointment (its not until October and that is private!!), so after what you have told me I will give it some serious thought.

I'm glad it appears that my fee estimates seem about right. So fingers crossed there are no nasty (and expensive) surprises.

Thanks again everyone

xxx

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aMuminwaiting · 17/05/2012 09:40

Hello, I've just seen your post on a ladies thread about seeing Dr Regan. I have had five mcs (the fist a late one) and am waiting for an appointment to come through. My NHS consultant was really reluctant to send me because she says its all hand holding rather than actually doing anything. You said "After lots of research, I decided to not bother with Lesley Regan, as I had a mild asthma, allergies and psoriasis. She doesn't really rate the theory of NK cells" which really struck a nerve with me because I have those things as well as IBS and was sure it had something to do with my losses. All the consultants just laughed at me like I was an idiot. But the scans for the first two pregnancies showed the babies were growing as they should but my body just kept trying to flush them out until it was successful. Can you tell me any more about NK cell testing? What did it involve, how much was it etc? I was given clexane blood thinners last time as a "it can't hurt to try" measure and the pregnancy only lasted six days. I've gone from almost 23 weeks to 4 and a half weeks. My friend said it's like my bodies getting better equipped to get rid of them and that's how it feels. My consultant was so negative about taking the St Marys route I need a boost of hope I guess.
I really hope your pregnancy went well and you're now waist deep in poopy nappies. I know you'll be very busy and maybe don't even have the time to come on here much anymore.

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aMuminwaiting · 17/05/2012 09:41

that was supposed to go on a private message to lovemysleep but my Mac obviously had other ideas! Never mind. Anyone who's still around please comment.

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luul · 17/05/2012 10:04

hi, i hard 3 miscarregs aswell, and ask my GP to referral and she said the best one St Marry Mr Ria. but i'm waiting nearly three weeks, i wonder how long does NHS take around London,,,

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iloveblue · 17/05/2012 13:35

Just noticed your comment about nk cells amuminwaiting.
I'm not an expert but there is a thread here with lots of ladies who are.

www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

It does sound like it could be what's causing your mc's. There is a book called Is your body baby friendly by Dr Beer which I would recommend.
HTH

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aMuminwaiting · 17/05/2012 14:32

Thank you, yes I've got that one, it's actually the next one on my list to read. The constant waiting around drives me mad. I know I'll be waiting forever for a referral. I waited an hour for my consultant appointment in a boiling hot room with women walking up and down the corridor with their babies just to be told "try the clexane again". She seemed really put out that I wanted to try London because they weren't offering me anything new at the hospital. I will put myself up to be a guinea pig in a research programme if it means finding out more about recurrent miscarriage. Even if it doesn't help my DH and I it may well stop another couple going through all this in the future. But as far as I can tell event he research programmes are very few and far between.

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iloveblue · 17/05/2012 19:59

Its extremely frustrating I know. I've just suffered my 4th mc - a second in 2nd trimester, and am not expecting any answers when I see my consultant in July, as we've always been told its bad luck up till now. It's clearly not. Whereabouts are you? There is a very good consultant at Coventry uni hospital called Prof Siobhan Quenby. She has done lots of research into nk cells, and is currently offering a test for uterine nk cells. It costs £360, you don't need a referral, you just contact her when you ovulate. The test has to be done 7-10 days after ovulation. Let me know if you're interested - I have her PA's email address.

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aMuminwaiting · 18/05/2012 21:31

Wow that's s lot less than I've found online. Liverpool is £1200! I'm in Kent. It seems to be lightyears behind other parts of the country.
Two second trimester mcs?! My first was prem labour at almost 23 weeks but every other pregnancy I've honestly not thought about getting to that stage again and losing a baby. I suppose since then I've gone into each pregnancy knowing that it's not going to last but dreaming of going full term. I don't know how I'd cope getting that close again. I still have very vivid nightmares about it.

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bugsylugs · 18/05/2012 23:02

iloveblue sorry to gate crash I have had 4 mc am desperately hoping I am not having another but BHCG low at 6+3 symptoms decreasing etc. would pm you but have not worked out how to do it. I would be very interested in having Prof Quenby's info did she move from Manchester?

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iloveblue · 19/05/2012 21:01

Hi Bugsy
Dont worry - its not my thread, its an old one thats been resurrected, but even if it was it would be fine Smile

Sorry to hear that you maybe going through another mc - its so shit and unfair.
Yes, she must have moved because she is at Birmingham Heartlands and Coventry Uni Hosp now.

I will PM you the details - I've been trying to email her PA for a few days now and I keep getting out of office emails back, so it might be worth emailing Prof Q directly. Have you met her before? She is fab.

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iloveblue · 19/05/2012 21:05

Just found this webchat by her which looks quite interesting reading

www.uhcw.nhs.uk/latest-news/web-chats/siobhan-quenby-web-chat

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pebspop · 20/05/2012 10:38

blue really sorry to hear you have had another 2nd tri mc.

do you know what happened?

are you under a rmc? what are they saying?

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iloveblue · 20/05/2012 15:01

Hi pebspop

Don't know what happened - had 3 good scans. Went for a scan by consultant at 15 wks to be hold baby had passed away at 14 wks.
Was on low dose aspirin this time so am now convinced its a blood clotting issue as my last two mc's were early.
My local rmc are rubbish - had standard tests through them which were all normal, but they haven't looked very deeply IMO.
Going to have the nk cells test via Prof Quenby.

How are things with you ?

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pebspop · 20/05/2012 16:56

I don't know if you remember but I had a mc at around 7 weeks in march. If was my third and I was taking 75mg of aspirin.

I went to see raj rai a couple of weeks ago at his private clinic. He suggested I has a hysteroscopy to check if I have any problems with my uterus due to the erpcs. My consultant also recommended this so I am waiting for a referral to Liverpool rmc and they will do it for me.

I feel like everything is on hold now until I get this sorted.

I didn't get to try the heparin injections last time as I was spotting. Also I was pg with identical twins which can be high risk so I am not sure if last time was one of those things and I might be luckier next time.

Tbh I feel like I will never have a baby now but I will keep trying

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Bellseybub · 01/07/2017 09:29

Hi All

I have a lot to say about that Lesley Reagans clinic having been a patient since 2013. We also had to go private because I'm Fortuny we have established that the NHS provides particularly poor support for Miscarriage. Furthermore different NHS hospitals are a complete lottery in regards to the standard in care you will receive. Take it from us as we have experienced four separate hospitals in London.

What I can tell you about her clinic is it pretty much is the best in the world. You absolutely will not find anywhere better. They have a 96% success rate. After visiting Dr Rai due to recurrent miscarriage problems, he identified some issues straight away and made some very intellectual observations prior to test results coming back which the tests proved correct. They really are a miracle baby team. We got pregnant and had a healthy baby girl . Furthermore Dr Rai provided care for us in our antenatal treatment at St Mary's on the NHS. We know 100% that if we hadn't been to see their team we would not of had a little rainbow baby. Very sadly we had another miscarriage last summer however this was the result of a chromosome issue which was classified as "one of those things". Dr Rai personally did a lot of investigation and provided medical help to resolve establishing the issue at the time. The result is I am now 32 weeks pregnant and it's looking like we will have a second healthy baby in 8 weeks time. I can tell you categorically that if the medical learning as of this clinic we shared with other miscarriage clinics and GPs around the UK, there would be a lot less heart ache and a lot more intellectual knowledge on the matter. This is way beyond diet and I'm absolutely disgusted that any GP could say that their treatment is handholdIng. This is highly unethical coming from a GP who is not a specialist in fertility and has no specialist knowledge in miscarriage. I can honestly say that comments like these reasons whether the GP should be practising and is providing due care. You certainly deserve reporting for such spurious and definitively incorrect comments. What your GP is doing is holding you back and creating a lot more heartache.

From our experience a lot of miscarriage problems are related to blood clot issues which are easily resolved. However they absolutely do need medicine/pregnancy which in our case without it would result in miscarriage.

Dr Reagens team work with Tommy's charity and really are the go to team in the UK. I don't know what more I can say about it other than if you have a miscarriage problem that is really current you could not go anywhere better. Do not hesitate with any back views on miscarriage by people who really don't know the team or what they're talking about. The statistics and the facts are what really speaks and that's what you should be looking at. I hope this helps and gives people some hope and faith which they really deserve and what is a bit of a minefield area Smile

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Bellseybub · 01/07/2017 09:40

I am so upset for you. Your consultants should be reported. They are deliberately causing you unnecessary heartache. Dr Reagens team are the best in the world and it's highly questionable why they would say that given they don't have the world renowned reputation of her team. Jealousy? I hope you can see the wood from the trees and go and see her clinic. They have a 96% success rate. It's beyond disgusting for them to contemplate her work as 'hand holding'. It's proven factual evidence. I am about to have my 2nd healthy baby all because of her team. It's been a long journey of heartache prior to that and I can categorically say I wouldn't have my babies without her team (Dr rai). I can also say that I have recommended 5 friends who have all had babies pretty much straight away. what succes have your consultants had? We have learned the hard way that GP's are not specialists and they often know very little on Miscarriage. Treatment around the Uk is a lottery and being able to go to the best clinic where all the experts go for advice surely puts you a step ahead of the game. Please don't give up, and don't let these ignorant doctors hold you back. You don't deserve that Smile

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ParisLondon · 09/08/2017 10:43

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