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Terry Pratchett writes an article for the News of the World, describing his experiences with Alzheimer's to date.
Terry will also be appearing on a special BBC Panorama programme 'The NHS Postcode: It Could Be You' (link includes a short clip) tomorrow (Monday 18th) at 8.30pm on BBC One.
THE NHS is seriously injured
Alzheimer’s is a particularly unpleasant and feared disease. I don’t know anyone who’s got better from Alzheimer’s.
It strips away our humanity a little bit at a time so you hardly notice and until you end up a vegetable.
But a drug called Aricept can slow the progress of the disease, and the good news is it costs just £2.50 a day.
The bad news is there are 400,000 Alzheimer’s sufferers in the UK so Aricept has been ruled out for NHS use in the mild stages of the disease everywhere except Scotland.
In Scotland Alzheimer’s sufferers with the mild form of the disease can actually get the drugs and I think that’s a lovely way to run a health service. There is a two-tier NHS, in fact -the Scottish one and the English one. More on that later.
I’m a millionaire so I have no trouble paying, but there are people who can’t.
I think it’s a sufficiently unpleasant disease to be worth the £2.50 a day Aricept costs.
My wife and PA both noticed real changes in me after two or three months on it. I used to fumble with buttons and needed help with seatbelts. Now, I get dressed normally and seatbelts slide in first time. Mentally, it’s the difference between a sunny day and an overcast day. Ye Gods, that’s worth it!
I was diagnosed nine months ago. I’m still some way from 65, which makes me ‘early onset’.
There are much younger early onset patients than me, and I’m particularly angry on their behalf because, while getting Alzheimer’s feels like an insult anyway, the younger you are the more insulting it is. It hits people who may have dependants both younger and older than them, and who are also trying to hold down a job.
I can still work at home and control my environment, and my rare variant of the disease is not yet a real burden. The novels turn up as they always have - only the typing is hard. There will now be a moment when the letter A, say, vanishes. It’s as if the keyboard closes up and the letter A is not there anymore. Then I’ll blink a few times and concentrate and it comes back.
I’ve handed in my driving licence - if my brain won’t let me see that A, it might not let me see the child on the pedestrian crossing. Unlikely, at this stage, but who would risk it?
Lucky
I know I am luckier than many others, older and younger, who find paying £1,000 a year a big problem.
And I can afford a voice recognition programme for the computer. There’s no way I’m going to retire, I’ll be writing until I die. It’s my passion.
I have other people who can drive me. In the circumstances, I am lucky so far. I didn’t think so last November when I was told I had PCA, a rare form of Alzheimer’s which affects the back of the brain. I was offered no form of treatment when I was first diagnosed. One local specialist wasn’t familiar with PCA so couldn’t take me on and I wasn’t old enough to go to the other local man who would only deal with patients over 65.
It wasn’t their fault, but when I heard this I felt totally exposed and alone.
Hell, I thought, it must be easier to score dope off Fat Charlie behind the bus station than get my hands on Aricept (I made him up, as far as I know).
I didn’t have to go that far. For several months I got Aricept on an ad hoc basis from a private doctor until I wound up with a great specialist in Bath.
And I stood up and said I had Alzheimer’s. I didn’t expect all the fuss, or my mailbox to melt. Good grief, you write best sellers for 25 years in a kind of welcome obscurity, then you catch one lousy disease and every chat show wants to talk to you.
And I became what they call ‘politicized’.
The decisions on who can get which drugs on the NHS are made by the National Institute for Health and Clinical Excellence (NICE), which appraises whether treatments should be considered worthwhile by the NHS.
I would very much like to know the basis on which these decisions are made because some of them don’t seem to make very much sense. It is interesting to note I could get Viagra for free. I’m not too certain it’s the State’s job to provide Viagra.
Even cancer can increasingly, with luck, be survived. For me there is no cure. Alzheimer’s is an unstoppable, as yet, process of dying by degrees.
Disgrace
It is not all the fault of NICE, although they have few friends these days. But we have to have a very good look at what has really become a kind of ad hoc NHS which leads, for example, to glaring differences in provision between England and Scotland and the despicable row over co-payments.
Co-payments, which are banned, are when a patient pays privately for a drug not funded by the NHS but continues to get the basic NHS care. I would like the NHS to take a serious look at this whole scandal because by banning co-payments they hit at people like my parents, who were frugal and saved and put money by and did all those things that once upon a time were fashionable for people to do.
I see nothing wrong with people purchasing extra medical care. It’s really no different than people choosing to buy cars and houses. People decide what to do with their money. It’s not fair to punish people who can afford to pay for a non-NHS drug that will help their treatment, but might not be able to afford to pay for all their medical care.
The NHS was never expected to be what it has become. It was going to give us our glass eyes, our wooden legs and our false teeth and inoculate us against things and then it would just deal with trauma.
We now have cures unthinkable when I was born. Within a generation there will, I believe, be Alzheimer’s treatments that put the noble Aricept in deep shade.
They will not be cheap. How will the NHS cope? Our NHS that wants to penalise people who are prepared to pay for drugs the NHS won’t give them? It is not even good Soviet thinking. It does not affect the rich, who can rise above it. But it hits at people who saved.
We already have a two-tier NHS service. You can already go to your doctor and then decide to go private for a lot of things. Your NHS dentist, if you have managed to find one, will charge you for various extras.
In the early days of the NHS it was not unknown for those people who had a bit of cash to sort of chip in for their treatment and everyone was very happy. What changed?
Hopeless
Now I know there are all kinds of problems associated with this. The NHS can now refuse to treat you if you pay for your own unilateral treatment. But we’re humans not monkeys. We should be able to sort this sort of thing out sensibly.
More and more people are going private when they have a choice. The NHS is great for basic healthcare and emergencies, but can be pretty hopeless in the long haul.
Ah, yes, the long haul. It’s a phrase from Australia, that most ferociously egalitarian of countries, where a public/private health system appears to work well.
I really think we have to decide what we want from the NHS-and what is it we’re prepared to pay for, and what is it we’re prepared to buy for ourselves.
The Baby Boomers, of which I am one, are getting older. They are not going to like old age under the current NHS.
There’s a tsunami of patients coming and the NHS isn’t prepared. There is going to be a bloody big row. It’s starting already.
Terry Pratchett writes an article for the News of the World, describing his experiences with Alzheimer's to date.
Terry will also be appearing on a special BBC Panorama programme 'The NHS Postcode: It Could Be You' (link includes a short clip) tomorrow (Monday 18th) at 8.30pm on BBC One.
THE NHS is seriously injured
Alzheimer’s is a particularly unpleasant and feared disease. I don’t know anyone who’s got better from Alzheimer’s.
It strips away our humanity a little bit at a time so you hardly notice and until you end up a vegetable.
But a drug called Aricept can slow the progress of the disease, and the good news is it costs just £2.50 a day.
The bad news is there are 400,000 Alzheimer’s sufferers in the UK so Aricept has been ruled out for NHS use in the mild stages of the disease everywhere except Scotland.
In Scotland Alzheimer’s sufferers with the mild form of the disease can actually get the drugs and I think that’s a lovely way to run a health service. There is a two-tier NHS, in fact -the Scottish one and the English one. More on that later.
I’m a millionaire so I have no trouble paying, but there are people who can’t.
I think it’s a sufficiently unpleasant disease to be worth the £2.50 a day Aricept costs.
My wife and PA both noticed real changes in me after two or three months on it. I used to fumble with buttons and needed help with seatbelts. Now, I get dressed normally and seatbelts slide in first time. Mentally, it’s the difference between a sunny day and an overcast day. Ye Gods, that’s worth it!
I was diagnosed nine months ago. I’m still some way from 65, which makes me ‘early onset’.
There are much younger early onset patients than me, and I’m particularly angry on their behalf because, while getting Alzheimer’s feels like an insult anyway, the younger you are the more insulting it is. It hits people who may have dependants both younger and older than them, and who are also trying to hold down a job.
I can still work at home and control my environment, and my rare variant of the disease is not yet a real burden. The novels turn up as they always have - only the typing is hard. There will now be a moment when the letter A, say, vanishes. It’s as if the keyboard closes up and the letter A is not there anymore. Then I’ll blink a few times and concentrate and it comes back.
I’ve handed in my driving licence - if my brain won’t let me see that A, it might not let me see the child on the pedestrian crossing. Unlikely, at this stage, but who would risk it?
Lucky
I know I am luckier than many others, older and younger, who find paying £1,000 a year a big problem.
And I can afford a voice recognition programme for the computer. There’s no way I’m going to retire, I’ll be writing until I die. It’s my passion.
I have other people who can drive me. In the circumstances, I am lucky so far. I didn’t think so last November when I was told I had PCA, a rare form of Alzheimer’s which affects the back of the brain. I was offered no form of treatment when I was first diagnosed. One local specialist wasn’t familiar with PCA so couldn’t take me on and I wasn’t old enough to go to the other local man who would only deal with patients over 65.
It wasn’t their fault, but when I heard this I felt totally exposed and alone.
Hell, I thought, it must be easier to score dope off Fat Charlie behind the bus station than get my hands on Aricept (I made him up, as far as I know).
I didn’t have to go that far. For several months I got Aricept on an ad hoc basis from a private doctor until I wound up with a great specialist in Bath.
And I stood up and said I had Alzheimer’s. I didn’t expect all the fuss, or my mailbox to melt. Good grief, you write best sellers for 25 years in a kind of welcome obscurity, then you catch one lousy disease and every chat show wants to talk to you.
And I became what they call ‘politicized’.
The decisions on who can get which drugs on the NHS are made by the National Institute for Health and Clinical Excellence (NICE), which appraises whether treatments should be considered worthwhile by the NHS.
I would very much like to know the basis on which these decisions are made because some of them don’t seem to make very much sense. It is interesting to note I could get Viagra for free. I’m not too certain it’s the State’s job to provide Viagra.
Even cancer can increasingly, with luck, be survived. For me there is no cure. Alzheimer’s is an unstoppable, as yet, process of dying by degrees.
Disgrace
It is not all the fault of NICE, although they have few friends these days. But we have to have a very good look at what has really become a kind of ad hoc NHS which leads, for example, to glaring differences in provision between England and Scotland and the despicable row over co-payments.
Co-payments, which are banned, are when a patient pays privately for a drug not funded by the NHS but continues to get the basic NHS care. I would like the NHS to take a serious look at this whole scandal because by banning co-payments they hit at people like my parents, who were frugal and saved and put money by and did all those things that once upon a time were fashionable for people to do.
I see nothing wrong with people purchasing extra medical care. It’s really no different than people choosing to buy cars and houses. People decide what to do with their money. It’s not fair to punish people who can afford to pay for a non-NHS drug that will help their treatment, but might not be able to afford to pay for all their medical care.
The NHS was never expected to be what it has become. It was going to give us our glass eyes, our wooden legs and our false teeth and inoculate us against things and then it would just deal with trauma.
We now have cures unthinkable when I was born. Within a generation there will, I believe, be Alzheimer’s treatments that put the noble Aricept in deep shade.
They will not be cheap. How will the NHS cope? Our NHS that wants to penalise people who are prepared to pay for drugs the NHS won’t give them? It is not even good Soviet thinking. It does not affect the rich, who can rise above it. But it hits at people who saved.
We already have a two-tier NHS service. You can already go to your doctor and then decide to go private for a lot of things. Your NHS dentist, if you have managed to find one, will charge you for various extras.
In the early days of the NHS it was not unknown for those people who had a bit of cash to sort of chip in for their treatment and everyone was very happy. What changed?
Hopeless
Now I know there are all kinds of problems associated with this. The NHS can now refuse to treat you if you pay for your own unilateral treatment. But we’re humans not monkeys. We should be able to sort this sort of thing out sensibly.
More and more people are going private when they have a choice. The NHS is great for basic healthcare and emergencies, but can be pretty hopeless in the long haul.
Ah, yes, the long haul. It’s a phrase from Australia, that most ferociously egalitarian of countries, where a public/private health system appears to work well.
I really think we have to decide what we want from the NHS-and what is it we’re prepared to pay for, and what is it we’re prepared to buy for ourselves.
The Baby Boomers, of which I am one, are getting older. They are not going to like old age under the current NHS.
There’s a tsunami of patients coming and the NHS isn’t prepared. There is going to be a bloody big row. It’s starting already.