The programme was indeed focusedon the clinic we attend. They made a number of criticisms:
(1) A 26 year old woman should have been told to keep trying naturally for another year but was offered IVF.
This did not trouble us much as we know we need IVF. Another undercover patient with an identical profile was given correct advice.
(2) The “Immunological” approach that he favours was unproven.
The clinic believes that where, as with P and I, implantation difficulties exist, the answer may be that the embryo is triggering an immune response. There are no double-blind placebo tests proving this treatment.
The clinic is perfectly frank about the lack of clinical proof of effectiveness. It is a question that I raised directly with the doctor we consulted with. He gave us a speech which we heard twice repeated on the programme tonight the essential elements of which are:
(a) All new treatments are for a period unproven;
(b) It might take so long to prove your chance would be gone;
(c) It would unfair to couples desperate for a child to give them a placebo on what might be their last chance of conception; and
(d) Double-blind tests are all bollocks and you can always structure a test to prove or disprove whatever you want.
I described this approach to P after our consultation as “quackery” which is exactly what it is. My eyebrows pretty much vanished under my receding hairline when the doctor tried to discredit all clinical trials. However, the argument is effective because boiled down its says “Ok this may well be snake oil but look at our figures – can you really afford to walk away from the chance that it might work?” It is effective because it taps into the rich vein of utter desperation that brought you to their door in the first place.
I cannot complain about their honesty though. We knew what we were doing. Frankly, I’ve read enough about the placebo-effect to want to play a hand in its famous last chance saloon.
(3) Because the therapy, which involves transfusion of human antibodies, is untested and because those antibodies can reach the child, the therapy may place the embryo at risk.
The good Doctor T admitted that this did “worry” him. This did suprise us as we had no idea there was any such risk involved. We certainly had not consented to it. He went on to add, in essence, that every treatment involves risk. The only point made to P had been that she had to be “comfortable” having human blood products transfused. She felt misled.
Again, to be scrupulously fair, we have encountered a failure to identify risks to us in other clinics so this practice is by no means unique.
(4) Before they start any immunological treatments you have a blood test that requires 18 vials of blood that are shipped to the States for analysis at a cost of £780 (about $1200).
The panel of experts that the BBC gathered to review the covertly obtained tapes opined that the test was entirely pointless. The blood was taken from “peripheral circulation” which, for the likes of you and me, means “the arm”. Apparently, there is little sensible relation between the blood in general circulation and that in the placenta. The analogy given was that it was like trying to count the number of black cabs in central London by looking at red cabs on the M25 (a large freeway that circles the outer edge of the city).
This is where I really began to growl. Our test results have just come back. It did not seem to me to be terribly likely that they were unaware of the difference in peripheral circulation and placental blood and this began to smack of fraud.
(5) Test Results misleading
The 26 year old was told that the test had shown abnormal levels and she would be best advised to have IVF whilst being treated with steroids and human antibody transfusions (at a cost of anything up to £10,000 (about $15,000) a cycle). A pathologist tested the blood samples and stated that they were entirely normal.
Either that was a very bad mistake or it was out and out fraud. Either way it does not encourage us to put any faith in our result: one somewhat raised level indicated a need for steriod treatment.
But at the end of the day, what about their figures? They have a 54% success rate which is by far and away the best in the country – hence Dr T being worth £38 million. Do we care how much mumbo jumbo is involved and how much cash we have to spend unnecessarily if they can deliver a baby?
The next point was little more than an insinuation: that the people with lower chances of success are shipped around the corner to a sister clinic which has substantially less stellar performance figures. Dr T felt that was unfair and that they had been the best even when there was only one clinic. Who know? But the attack on the figures kicked at the last prop and that prop fell out when it became apparent that the second clinic is unlicensed and that nevertheless, and in breach of the criminal law, he has continued to perform IVFs at that clinic. His argument was that he had many desperate patients that he could not in good conscience, turn them away. I am desperate but not so desperate that I need to pay a criminal a fortune.
We got the speech about clinical trials and new, unproven treatments yada yada – that was 12 years ago. It’s all smoke and mirrors.
a rock and a hard place. its so wrong x
the bloke we saw was subsequently struck off, i think. but what can i say? it worked. and as i said, friends of ours saw this taranissi bloke, and thought he was great – very supportive and involved.
H – You end up playing a variant of Pascal’s wager where you decide, in desperation, that the potential upside of the tiny prospect that it might improve your chances of conception is worth swallowing any amount of doubt. So even when they pretty much announce “we are quacks” you still press on.
M – Time for another cat I think!
MM – I’m so glad it worked for you (and I hope reviews go well for tonight). I have no doubt Dr T has an excellent bedside manner and there is no doubt children are born to his patients. However, having bought myself online access to the Journal of Human Reproduction to follow up some of the points made last night (it has come to that!) it seems that when we were told there were no studies on this treatment that was grossly untrue. There are many and the most recent survey of a busy field suggests that not only is the treatment dangerous for the woman (risk factors not identified to us include (amongst an impressively long list) lymphoma and congestive heart failure) but that the treatment increases the risk of pre-eclampsia and potentially retards foetal development.
The immediate risk of injury is shin pain from kicking ourselves.
I’ve just written a short piece on this before coming here to see what your view is. Obviously we are writing from very different positions, but I don’t think I’m too wide of the mark on this one. I missed the bit about the cab analogy because I must have been on channel 4 at that point.
It seems these clinics are taking advantage of couples who merely wish to share in the creation of a family. A most simple, and most urgent, desire. How cruel to encourage (and make a fortune) out of misplaced hope.
Hi moobs – totally agree with you… i am in a similar situation. Have done immunology testing at ARGC myself recently – the result was borderline they said some steroid treatment necessary… I felt unconvinced about all that at the time but we decided just to go for it. I probably will not go ahead with the treatment though after all that was shown… Not as I would trust any more to any of those experts on the panel. It is just very frustrating that all our hope with ARGC turned out waste of time and money. I am in desperation as what to do now, as it seems that the doctors with the good results are all controversial, but non-controversial ones have results that are not worth going for (for my age bracket at least). I just feel angry and frustrated at ARGC and HFEA, NHS, my GP and list goes on but first with myself of course. By the way, Re risks with immunology treatment – I had an idea it can be dangerous, but ovarian stimulation probably is more dangerous statistically I think one should be prepared to take risks with such a treatment. Food allergies can be life threatening or read the leaflets on complications for common medicines…
Having gone through years of infertitlity angst, and just before deciding to try a more clinical approach, we were incredibly fortunate to have an adoption opportunity fall into our laps. Adoption is expensive and is not for everyone, but we could not be happier. That said, the pain of the trying for pregnancy is more pervasive than any other I’ve known. Charlatans, even those with ostensibly kind hearts, should not be allowed near folks who are so vulnerable and hopeful.
Please don’t kick yourselves; find a legal (not necessarily lawsuit) way to kick the good doc’s shins.
that’s too big a list of risks to take. you’re right to follow your instinct, i’m sure.
Sorry to hear of your experience. The bright side is that Panorama did you a favour. The really bright side, you did not appear on Panorama.
Moobs,
Please give your wife a long, close hug. I know this is very hard for you. I will be thinking of you both all day.
All my best,
OTJ
“Fraud, charlatans” – may be… But how would you explain their results and that they are the best in terms of success rates in the UK? And we hear all these stories from happy patients? Just look through numerous fertility message boards where people hold him as a genius…
Do you think this clinic has been able to report incorrect figures to hfea all these years? undentified?
I have no idea how this must make you feel. I can’t think of anything to say, but I want to say something. x
Ok, dearest Moobs, take a breath. I have heard people talk about the immune response to fetus when I was at university (1980s). It might not be proven but it is a fairly accepted theory. Although I thought it was easily detected with blood tests (not expensive blood tests)…. yikes.
I do think there’s probably something going on here….
I will tell you this… the numbers? If a doctor is interested only in numbers, then he’s going to suggest certain options that are more aggressive than necessary – such as ivf or donor eggs without trying other options. It’s my experience (again a bunch of clients with the Denver guy) that numbers reflect the agressive nature of the doctor – not some god like sucess rate.
I’d encourage you to find someone who makes you smile. And be agressive yourselves.
I can’t wait to attend the cyber christening………..
Lisa – I’m sorry things have been so bad for you. You should not be frustrated with yourself. After 11 unsuccessful replacement rounds I can entirely sympathise with your feeling of impotent (no pun intended) anger.
I also know exactly what you mean about ovarian stimulation – P was hospitalised after our last fresh round and it scared me senseless. I understand that effective treatments may be risky. What I cannot see the point of is treatments that are ineffective and risky. The ARGC were frank that the treatment is not clinically proven to be effective. However, what they did not tell us is that there is a considerable body of research which points to it being not only ineffective but possibly harmful. Had that been said to me I have no doubt that we would have gone eslewhere results or no results.
I’ve no idea whether Dr T’s figures are accurate or not. I am sure he is perfectly nice and no doubt if we had had a child as a reuslt of IVF with his clinic I would be singing his praises too. I certainly believed that his figures were accurate which is why we signed up with the ARGC.
I am troubled that the sister clinic around the corner has a substantially worse success rate given that Dr T performs IVF treatment there too, presumably to the same protocols. Why should there be any material variation in figures? At the end of the day though I have no ideas whether his figures are accurate. If I trusted the clinic I would take them as read.
However, I have now watched patients being told things that were untrue and I know that I was told something that was untrue. I really feel I must be able to trust the person providing this treatment and now I don’t.
YD – I read your piece which was very interesting. I have the other documentary on tape and will watch it tonight.
LGS – Lol – you have a point!
OTJ – Thanks for your wishes. I can assure you that a hug is on the agenda
Gamba – That is appreciated – thank you.
Meva – The clinic has undoubtedly brought joy to many parents. That does not excuse misleading patients.
Cronz – I think adoption is the course we will now pursue. I am glad things worked out for you.
Oh Moobs!
I’m so sorry!
Like Gamba I’m here, and I’m reading, and I have no idea what to say. Wonderful people like you should be happy all the time. The laws of the universe suck.
wow….the immune thing is interesting though…my friend was having multiple miscarriages and they finally figured out her body was rejecting the fetus as ‘hostile’…
She now has to take weekly injections of Heperin (I think that is the name) to stop her body doing this….all to do with antibodies and so forth.
But yeah…..the money thing is one factor…..the anguish is another….
no matter how ‘hight’ a success rate…how much can you handle or ‘wish’ for……….you all have a limit right??
Hugs and hang in there.
All people who take advantage of the pain of others to make millions will hopefully one day rot in hell!
Until then, well there is nothing to do but hope all this technology will some day turn in your much deserved favor.
Oh Moobs! I’m so sorry that you and your wife have to go through this. If I could give you both a hug right now, I would. Instead, I’ll just have to keep you in my thoughts and hope that things work out for both of you.
I wish I could think of something to say that either (a) hasn’t been said by everybody else or (b) is remotely comforting.
Alas, the same thoughts as everyone else–that it isn’t fair. I’m rooting for you.
And in the meantime, if you’d like to borrow my children, let me know. I almost strangled them in the healthfood store tonight. I’m sure they’d like an Uncle Moobs and Auntie P to be nice to them.
Good luck … the road of infertility is very painful. I wish you success & very soon.
Of all things to take advantage of.
*sigh*
Especially since something of this nature is a “timed” thing, it’s even worse to waste some of that time being mislead.
Maybe this is a positive thing. Now that you know this guy may be a quack, you can move on to a new clinic and maybe find better results and a bit of luck.
*fingers crossed*
Wow. You know, one of my best friends is having trouble conceiving & carrying a child, so I know how hard all of this can be; my heart goes out to you guys.
Wow…couldn’t turn his back on those people? Or the money?
Moobs, I’m sending you and P every good thought I have…and I do have them. 🙂
Just know that I’m thinking of you both, my friend…
Sincerely,
Kevin
p.s. I’m naked right now.
Oh Moobs, there are no words. I hope you find your path. And follow your instincts.
Moobs…so sorry. I would just be climbing the walls with rage right now. Peace and hugs to you and P…and hellfire and damnation to those clinics!
oh Moobs….
My heart aches for both you and P.
I have no light on the situation just a very open heart…
Hope the two of you find strength in each other at this time…
And ewww…. Kevin is nakkkkkeeeddd at the computerrrr???????whaaaa?????
Well, most definitely save your money for a better opportunity at a more reputable IVF clinic.
Hang in there!!
I will cross my fingers that you and your wife will have little Moobs soon (-:
Moobs – at least you’re not giving up. I have friends and colleagues who have adopted, and they’ve had the most amazing and wonderous lives since their children have come to them.
I’m quite sure you’ll be somebody’s dad one day.
*sends love*
xx
Screaming at my computer for you this very moment!!! Well… internally. Obviously, I’ve never met you or P, and yet I want to rip out someone’s eyeballs on your behalf. It’s a strange feeling to be so upset for people whom I’ve never hugged.
(hugs to you two, by the way.)