Pratchett criticises drugs ruling
Discussion
http://news.bbc.co.uk/1/hi/health/7561724.stm
Author Terry Pratchett has criticised a decision to limit the drug Aricept through the NHS to people in the later stages of Alzheimer's disease.
He said that the decision to not give it to early stage sufferers, but to provide free treatment for obesity and sexual impotence indicates the NHS "priorities are not right".
And the author also told Panorama that he thinks it is possible that NICE's decision was in part shaped by the fact that Alzheimer's is a disease predominantly affecting older people, whom he says are thought of as "a softer target".
Anyone else think he has a really good point?
Author Terry Pratchett has criticised a decision to limit the drug Aricept through the NHS to people in the later stages of Alzheimer's disease.
He said that the decision to not give it to early stage sufferers, but to provide free treatment for obesity and sexual impotence indicates the NHS "priorities are not right".
And the author also told Panorama that he thinks it is possible that NICE's decision was in part shaped by the fact that Alzheimer's is a disease predominantly affecting older people, whom he says are thought of as "a softer target".
Anyone else think he has a really good point?
I heard him being interviewed on the subject a couple of months ago and he made a very very compelling case for prescribing the drug. I for one agree with him.
ETA, sufferers of Alzheimers have no choice whether they get the disease, fatties make a conscious decision to tuck into their second bucket of McJunkFood. I'd rather my taxes funded the use of Arecept.
ETA, sufferers of Alzheimers have no choice whether they get the disease, fatties make a conscious decision to tuck into their second bucket of McJunkFood. I'd rather my taxes funded the use of Arecept.
Edited by rhinochopig on Monday 18th August 09:20
My understanding of this drug is that it does not show long term improvement in early onset Alzheimers. It slows the rate of reteroration but that's about it and that's applicable to those in the mid stages of Alzheimers, not at the start, where he is currently at.
A very emotive and highly charged subject but IF the reality is that all it is is a short term delay product then can the high cost be justified?
A very emotive and highly charged subject but IF the reality is that all it is is a short term delay product then can the high cost be justified?
drivin_me_nuts said:
My understanding of this drug is that it does not show long term improvement in early onset Alzheimers. It slows the rate of reteroration but that's about it and that's applicable to those in the mid stages of Alzheimers, not at the start, where he is currently at.
A very emotive and highly charged subject but IF the reality is that all it is is a short term delay product then can the high cost be justified?
FFS. "life" is just a short term delay for death!A very emotive and highly charged subject but IF the reality is that all it is is a short term delay product then can the high cost be justified?
Sorry. Cancer and dementia in the family, so it's a little too close to home for me.
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Fatboy said:
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Is it that expensive - £2.50 a day....It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
I am sure that many of the people suffering from it paid a damn site more than £2.50 a day in NI contributions....
jesusbuiltmycar said:
Fatboy said:
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Is it that expensive - £2.50 a day....It is blood expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
I am sure that many of the people suffering from it paid a damn site more than £2.50 a day in NI contributions....
Einion Yrth said:
If all the drug does is delay deterioration, would it not then be more sensible in early cases?
Exactly. So what if it just makes you able to do your shirt up without help or type at a computer and have the words make sense, one of the most frustrating things about this disease is that is robs you of simple things, you're 59 and your wife has to do your clothes up for you like your Mum did when you were 4.It's like saying to an MND patient, "Hey, we've got this fantastic drug that will delay the progression of the disease, but we won't give it to you until you can't raise your arms very high or walk without assitance".
jesusbuiltmycar said:
Fatboy said:
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Is it that expensive - £2.50 a day....It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
I am sure that many of the people suffering from it paid a damn site more than £2.50 a day in NI contributions....
Not that I'm saying it shouldn't be used, just that IME it needs to be used as early as possible, but that there it little point in giving it out to later stage sufferers, as the damage has already been done - it needs to be given early to work its best.
Fatboy said:
jesusbuiltmycar said:
Fatboy said:
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Is it that expensive - £2.50 a day....It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
I am sure that many of the people suffering from it paid a damn site more than £2.50 a day in NI contributions....
Not that I'm saying it shouldn't be used, just that IME it needs to be used as early as possible, but that there it little point in giving it out to later stage sufferers, as the damage has already been done - it needs to be given early to work its best.
Personally I'm curious to know if anyone in NICE has ever had to watch someone die of Alzheimers. I haven't, but I have read enough to know how destructive it is. I think it's sad that they can easily tell someone their quality of life isn't worth £2.50 a day.
If I went to the pub regularly I think I'd miss one trip a month and donate the money saved to Alzheimers research, but I'm not a pub person.
MentalSarcasm said:
Fatboy said:
jesusbuiltmycar said:
Fatboy said:
What is particularly annoying is that Aricept will have far more effect on early stage Alzheimer's than later stages - it needs to be given early.
It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
Is it that expensive - £2.50 a day....It is bloody expensive though - but it highlights a lot of the problems with the NHS, there is money there, but it gets spent in the wrong places...
I am sure that many of the people suffering from it paid a damn site more than £2.50 a day in NI contributions....
Not that I'm saying it shouldn't be used, just that IME it needs to be used as early as possible, but that there it little point in giving it out to later stage sufferers, as the damage has already been done - it needs to be given early to work its best.
Personally I'm curious to know if anyone in NICE has ever had to watch someone die of Alzheimers. I haven't, but I have read enough to know how destructive it is. I think it's sad that they can easily tell someone their quality of life isn't worth £2.50 a day.
If I went to the pub regularly I think I'd miss one trip a month and donate the money saved to Alzheimers research, but I'm not a pub person.
Pratchett makes an interesting point at the end of the article about the fear of Alzheiners. More can and should be done to help people with this horrible disease come to terms with what is happening to them. There is simply not enough emotional, physical, psychological support for those who have it and equally their carers. Much can be done to help resolve the issues and one very important factor that seems to be overlooked by those in governemt is the huge body of research that shows very clearly that dealing with stress and associated matters makes a real and significant difference to peoples lives.
We have an ageing population and age related diseases can and will only increase. We have to use all the means at our disposal to make a difference in the lives if those who have this disease.
DMN- It's the same with all these diseases though, when my Grandad had MND the social services told him and my Nan they didn't qualify for any help because they had savings! These are two people that both worked, raised three children, and never once claimed benefits. It was up to the MND Association to pick up the slack, along with several army charities (my Grandad served in Northern Ireland). When my Grandad fell over and couldn't get back up my Nan had to call an ambulance, Social Services were instantly round like a flash suggesting that my Nan should pay to put him in a care home, again the MNDA stepped in and found volunteer carers to help, my Grandad didn't want anyone in the family to help because he didn't want to be cared for by his children and grandchildren, and if I had been in that position I don't think I'd want to be either.
I know someone who has Multiple Sclerosis and is in some degree of pain every single day, she's now having to put up a fight because some jobs worth has said "if you can walk then you can work", she can hobble around the house but that's it.
The way we treat people with debilitating diseases in this country is bloody disgusting! These disease are worse than cancer, and because they're not as common as cancer the research in to them is badly funded as well.
And don't even get me started on the anti-euthanasia crowd.
I know someone who has Multiple Sclerosis and is in some degree of pain every single day, she's now having to put up a fight because some jobs worth has said "if you can walk then you can work", she can hobble around the house but that's it.
The way we treat people with debilitating diseases in this country is bloody disgusting! These disease are worse than cancer, and because they're not as common as cancer the research in to them is badly funded as well.
And don't even get me started on the anti-euthanasia crowd.
MentalSarcasm said:
DMN- It's the same with all these diseases though, when my Grandad had MND the social services told him and my Nan they didn't qualify for any help because they had savings! These are two people that both worked, raised three children, and never once claimed benefits. It was up to the MND Association to pick up the slack, along with several army charities (my Grandad served in Northern Ireland). When my Grandad fell over and couldn't get back up my Nan had to call an ambulance, Social Services were instantly round like a flash suggesting that my Nan should pay to put him in a care home, again the MNDA stepped in and found volunteer carers to help, my Grandad didn't want anyone in the family to help because he didn't want to be cared for by his children and grandchildren, and if I had been in that position I don't think I'd want to be either.
I know someone who has Multiple Sclerosis and is in some degree of pain every single day, she's now having to put up a fight because some jobs worth has said "if you can walk then you can work", she can hobble around the house but that's it.
The way we treat people with debilitating diseases in this country is bloody disgusting! These disease are worse than cancer, and because they're not as common as cancer the research in to them is badly funded as well.
And don't even get me started on the anti-euthanasia crowd.
I agree with all that you say. It's an interesting point that you raise wrt cancer. Most peoples have an idea of cancer. If you were to ask them to visualise it or in some way describe it thene very clearly most would be able to come up with some kind of description and mostly it would be something horrible and unpleasant. What's harder with neurological diseases is the fact that other than something like a tumor, it's almost impossible for someone to visualise a tangle, or a plaque or imagine the holes created in a damaged brain.I know someone who has Multiple Sclerosis and is in some degree of pain every single day, she's now having to put up a fight because some jobs worth has said "if you can walk then you can work", she can hobble around the house but that's it.
The way we treat people with debilitating diseases in this country is bloody disgusting! These disease are worse than cancer, and because they're not as common as cancer the research in to them is badly funded as well.
And don't even get me started on the anti-euthanasia crowd.
(As an aside for cancer, part of what I do in my work is help peoples resolve issues around cancer and one of the first things that we (my partner and myself) is help peoples come to terms with the visual aspect of the disease. Changing perception and raising understanding goes a very long way to changing attitudes towards disease)
The true tragedy of these conditions is that for many the control is taken away - not the big stuff like forgetting families and friends, but the notions of self respect, identity, or self of matters like 'I can' and 'I am'. It is very cruel to see a loved one deterorate literally before your eyes and that in itself raises many issues for the person watching and caring. Like I said, there is not nearly enough work and awareness in this area and interestingly enough it is often the long term health of the carer that suffers .. often silently and that I believe is one of the cruelest tragedies of all - that the fall out of these diseases is so great and often, completely and utterly silent; with love and care, and compassion and understanding.
There is plenty of evidence that care inside the home is better for the patient and the family, that it causes less long term stress and trauma, yet we authorities seem so keen to just shunt peoples away and forget about them.
Enough, this is the one subject that annoys me immensely and it does not do me good to dwell too long on the don'ts and the stupid stupid short term attitudes of councils are 'care providers'.
My best wishes to you.
DMN
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