Back from another session of radiotherapy feeling rather disappointed.
After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.
I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.
I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.
Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!
When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.
This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.
My personal opinion of the contemporary medical scene is that no one wants to do anything out of their comfort (read: normal) zone. To do so, IMHO, invites liability which they do not want to have, so they take the "safe" route and do nothing. We should call it the "Sergeant Schultz" effect (from Hogan's Heroes).
ReplyDeleteMy wife and I like to know everything we can when faced with medical conditions, so we've "been there, done that" with respect to finding and grokking medical information. In way too many cases, we run into the "we think this is what does it", and "we're not really sure because it's so rare that resource dollars are scarce".
I'm with you, give me a computer issue, and I can track it down. Anything else, I just leave to the (supposed) experts.
Lynn (D) - KJ4ERJ
PS. We've also been in the situation where we've provided information to one person only to have it come back to us from another after having made the rounds between doctors. Disheartening, it is, but you just have to keep pushing it through.
My brother-in-law recently had a serious problem with his leg. Despite both NHS and private health care he was getting nowhere. A few hours of (my) research on the internet based on a photo of his skin and a summary of all his symptoms narrowed it down to just two conditions. Armed with this data he is now going to see a consultant (again) for a biopsy (why had this not been done before for goodness sake!) and further tests. I hope he now gets somewhere. Sadly the "I don't want to be held liable" culture is all too prevalent. Also, I seriously doubt the ability of many in the medical profession to diagnose conditions accurately and many are like old-fashioned TV repair men changing valves until the picture reappears. In your case it is your life that is at stake so you need to use all the resources you can muster to make the case for this drug if there is a good chance of it improving your quality of life and life expectancy. Maybe you have to write something to absolve them of all liability if things don't work. In the limit you may have to buy the drug over the internet (from a reputable supplier) and decide yourself the dosage based on best information available. As Lynn says, keep pushing and pushing and dn't let them treat you as a number. That is not NICE.
ReplyDeleteI've used Pharmacy Geoff in the past (terrible name, but they seem to be reputable!) at http://www.pharmacygeoff.com and they have Clomipramine in stock at what seems to be a reasonable price.
ReplyDeleteGood luck with the treatment.
Jon (G8KNN - lapsed :-( )
Julian,
ReplyDeleteIf you have trouble with UK Customs then perhaps you can find a third party outside the UK to accept the package and re-package it as a personal package. I'd be willing to do that, but of course I'm quite a ways from the UK.
Julian, I think your GP would be willing to prescribe the drug to you considering the consultants comments. I know GP's come in for a lot of stick at times but every now and again they come up trumps and are as helpful as they can be. Give it a go. You have nothing to loose.
ReplyDelete73's
Andy
I've had a scroll through some web pages and have found the email address of the professor who did the research into this drug. Send him an email with your background info and ask if you can join in any research (only if you are willing of course). He may be able to advise you of the best way forward with regards to gaining access to this drug.
ReplyDeletehis address is
geoff.pilkington@port.ac.uk
Good luck.
73's
Andy
Julian,
ReplyDeleteI think that the consultant was basically saying two things. First, that this drug is not likely to interfere with the cancer treatment he is responsible for. This is useful information for the GP, who might not be in a position to make that assessment. The second thing is that he can't prescribe it but the GP can. Hopefully the GP will prescribe it. As for the dose, once you have the drug you can obviously take more than the prescription says you should. You'll run out sooner, but perhaps you can make some story about why you lost the rest, to get another prescription.
The professor who did the research might not be willing to give more information than what's in the research paper, because it might make him responsible if something goes wrong. I think you'll need to try to interpret these papers or to have somebody do it for you.
You should not be too angry at the physicians and researchers. You are fighting for your life, whereas they are only doing a job, so they worry about responsibility, rules, and consequences.
Good luck, Sivan