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 bestsellers for twenty-five 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.
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 copayments.
Copayments, 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 copayments 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 who 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 penalize 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?
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 health care 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 it is we’re prepared to pay for, and what it is 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.
I’M SLIPPING AWAY A BIT AT A TIME … AND ALL I CAN DO IS WATCH IT HAPPEN
Daily Mail, 7 October 2008
On the day I was diagnosed with PCA, Rob asked me who we should tell and I told him that I wanted to tell everyone. I was angry. And it worked, it really worked. So many people were writing to me, we couldn’t keep up with the deluge.
I wish I could say I’ve changed things. I suppose I could modestly say half a yes to that now. At the time I was diagnosed, if you had Alzheimer’s of any kind there was nothing you could do, no one to ask for help, no golden path. I think after me, some of that at least got a little better.
Seven hundred thousand people who have dementia in this country are not heard. I’m fortunate; I can be heard. Regrettably, it’s amazing how people listen if you stand up in public and give away $1 million for research into the disease, as I have done.
Why did I do it? I regarded finding I had a form of Alzheimer’s as an insult and decided to do my best to marshal any kind of forces I could against this wretched disease.
I have posterior cortical atrophy or PCA. They say, rather ingenuously, that if you have Alzheimer’s it’s the best form of Alzheimer’s to have. This is a moot point, but what it does do, while gradually robbing you of memory, visual acuity, and other things you didn’t know you had until you miss them, is leave you more or less as fluent and coherent as you always have been.
I spoke to a fellow sufferer recently (or as I prefer to say, “a person who is thoroughly annoyed with the fact they have dementia”) who talked in the tones of a university lecturer and in every respect was quite capable of taking part in an animated conversation.
Nevertheless, he could not see the teacup in front of him. His eyes knew that the cup was there; his brain was not passing along the information. This disease slips you away a little bit at a time and lets you watch it happen.
When I look back now, I suspect there may be some truth in the speculation that dementia (of which Alzheimer’s is the most common form) may be present in the body for quite some time before it can be diagnosed.
For me, things came to a head in the late summer of 2007. My typing had been getting progressively worse and my spelling had become erratic. I grew to recognize what I came to call Clapham Junction days when the demands of the office grew too much to deal with.
I was initially diagnosed not with Alzheimer’s but with an ischemic change, a simple loss of brain cells due to normal ageing. That satisfied me until the next Clapham Junction day. I went back to my GP and said I knew there was something more going on.
Fortunately, she knew well enough not to bother with the frankly pathetic MMSE test (the thirty-point questionnaire used to determine brain function) and sent me to Addenbrooke’s Hospital in Cambridge, where, after examination of my MRI scan and an afternoon of complex tests, I was diagnosed with PCA, an uncommon variant of dementia, which had escaped the eagle eye of the original diagnostician.
When in Paradise Lost Milton’s Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction, and you could have used my anger to weld steel.
Only my family and the fact I had fans in the medical profession, who gave me useful advice, got me through that moment. I feel very sorry for, and angry on behalf of, the people who don’t have the easy ride I had.
It is astonishing how long it takes some people to get diagnosed (I know because they write to me). I cannot help but wonder if this is because doctors are sometimes reluctant to give the patient the stigma of dementia since there is no cure.
I was extremely fortunate in my GP. I think she was amazed to find that of the two specialists in my area, one
had no experience of PCA and therefore did not feel he could help me and the other would only take on patients over sixty-five—at fifty-nine I was clearly too young to have Alzheimer’s.
I remember on that day of rage thinking that if I’d been diagnosed with cancer of any kind, at least there would have opened in front of me a trodden path.
There would have been specialists, examinations, there would be, in short, some machinery in place.
I was not in the mood for a response that said, more or less, “Go away and come back in six years.”
My wife said: “Thank goodness it isn’t a brain tumour,” but all I could think then was: “I know three people who have got better after a brain tumour. I haven’t heard of anyone who’s got better from Alzheimer’s.”
It was my typing and spelling that convinced me the diagnosis was right. They had gone haywire. Other problems I put down to my looming sixtieth birthday.
I thought no one else had noticed the fumbling with seat belts and the several attempts to get clothing on properly, but my wife and PA were worrying. We still have the occasional Clapham Junction days, now understood and dealt with.
I have written forty-seven novels in the past twenty-five years, but now I have to check the spelling of even quite simple words—they just blank on me at random.
I would not dare to write this without the once despised checker, and you would have your work cut out to read it, believe me. On the other hand—and this is very typical of PCA—when the kind lady who periodically checks me out asked me to name as many animals as I can, I started with the rock hyrax, the nearest living relative to the elephant, and thylacine—the probably extinct Tasmanian marsupial wolf.
That’s the gift or the curse of our little variant. We have problems handling the physical world but can come pretty close to talking our way out of it so you don’t notice. We may have our shirts done up wrong, but might be able to convince you it’s a new style.
I felt that all I had was a voice, and I should make it heard. It never occurred to me not to use it. I went on the Net and told, well, everyone. I wish I could say it was an act of bravery. It wasn’t and I find that suggestion very nearly obscene.
How brave is it to say you have a disease that does not hint of a dissolute youth, riotous living, or even terrible eating habits? Anyone can contract dementia; and every day and with a growing momentum, anybody does.
It occurred to me that at one point it was like I had two diseases—one was Alzheimer’s and the other was knowing I had Alzheimer’s.
There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever.
It is better to know, though, and better for it to be known, because it has got people talking, which I rather think was what I had in mind. The $1 million I pledged to the Alzheimer’s Research Trust was just to make them talk louder for a while.
It is a strange life when you “come out.” People get embarrassed, lower their voices, get lost for words. Part of the report I’m helping to launch today reveals that 50 percent of Britons think there is a stigma surrounding dementia. Only 25 percent think there is still a stigma associated with cancer.
The stories in the report—of people being told they were too young or intelligent to have dementia; of neighbours crossing the street and friends abandoning them—are like something from a horror novel.
It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s you are an old fart. That’s how people see you. It makes you feel quite alone.
It seems to me there’s hardly one family in this country that is not touched by the disease somehow. But people don’t talk about it because it is so frightening. I swear that people think that if they say the word they’re summoning the demon. It used to be the same with cancer.
Journalists, on the other hand—I appreciate that other people living with the disease don’t get so much of this—find it hard to talk to me about anything else, and it dominates every interview: Yes, I said I had PCA ten months ago, yes, I still have it, yes, I wish I didn’t, no, there is no cure.
I can’t really object to all this, but it is strange that a disease that attracts so much attention, awe, fear, and superstition is so underfunded in treatment and research.
We don’t know what causes it, and as far as we know the only way to be sure of not developing it is to die young.
Regular exercise and eating sensibly are a good idea, but they don’t come with any guarantees. There is no cure.
Researchers are talking about the possibility of a whole palette of treatments or regimes to help those people with dementia to live active and satisfying lives, with the disease kept in reasonably permanent check in very much the same way as treatments now exist for HIV.
Not so much a cure therefore as—we hope—a permanent reprieve. We hope it will come quickly, and be affordable.
In the meantime we hope for Aricept, which is not a cure but acts as a line of sandbags against the rising tide of unknowing. However, it is available free only to those in the moderate stages of the disease; others must pay £1,000 a year, which I do.
Eligibility is determined by the MMSE questionnaire test, and it would be so easy for a patient in the mild stage to cheat their score into the free zone that I take my hat off to those too proud or responsible to do so. I cough up.
NICE says the change it makes at my stage is minimal, but we don’t think so in our house, where those little changes make the difference between a dull day and a fine day.
The disease is, after all, about small changes, and it may be that individuals may indeed be individual.
And that is nearly it for hope at the moment.
When my father was in his terminal year, I discussed death with him. I recall very clearly his relief that the cancer that was taking him was at least allowing him “all his marbles.” Dementia in its varied forms is not like cancer.
Dad saw the cancer in his pancreas as an invader. But Alzheimer’s is me unwinding, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.
You can’t battle it, you can’t be a plucky “survivor.” It just steals you from yourself.
And I’m sixty; that’s supposed to be the new forty. The baby boomers are getting older, and will stay older for longer.
And they will run right into the dementia firing range. How will a society cope?
Especially a society that can’t so readily rely on those stable family relationships that traditionally provided the backbone of care.
What is needed is will and determination. The first step is to talk openly about dementia because it’s a fact, well enshrined in folklore, that if we are to kill the demon, then first we have to say its name.
Once we have recognized the demon, without secrecy or shame, we can find its weaknesses.
Regrettably one of the best swords for killing demons like this is made of gold—lots of gold.
These days we call it funding. I believe the D-day battle on Alzheimer’s will be engaged shortly and a lot of things I’ve heard from experts, not always formally, strengthen that belief.
It’s a physical disease, not some mystic curse; therefore it will fall to a physical cure. There’s time to kill the demon before it grows.
TAXWORLD
What is an author to do when every other word he writes will be written for the Chancellor of the Exchequer?
Letter to The Times, 23 May 2009
Sir,
I am very definitely a high-rate taxpayer, although in self-defence I must admit I have become so simply by writing a lot of fairly harmless books over a very long time rather than by, for example, ripping the heart out of the financial system through unbridled greed.
So I am, therefore, somewhat peeved to find that, now, slightly more than every other word I write will be written for the Chancellor of the E
xchequer, who will undoubtedly waste the money on computers that don’t work and other people’s duck shelters.
I have been enormously buoyed up, though, by hearing from journalists and other pundits that “the rich won’t end up paying the 50 percent income tax because their smart accountants will find a way around it.” When I put this to my own accountant, a senior member of a reputable London firm, he laughed and said: “Unless you want to go and live abroad for a very long time, or associate with some extremely unsavoury people, or invest in risky tax schemes, then for someone like you there is really nothing that can be done.”
I assume he knows his stuff and the tax authorities know theirs, so why is this bland assertion repeated so regularly?
Sir Terry Pratchett
Salisbury, Wilts
PS. I have no intention whatsoever of moving to a firm of disreputable accountants.
POINT ME TO HEAVEN WHEN THE FINAL CHAPTER COMES
Mail on Sunday, 2 August 2009
I’m all for assisted death. Of course there are people who are against it, but they come up with the wrong reasons, such as “God doesn’t like it” and so on. Personally, I really don’t think God is all that bothered, but I would like to think that my god would be more concerned about unnecessary suffering. Who knows.
We are being stupid. We have been so successful in the past century at the art of living longer and staying alive that we have forgotten how to die. Too often we learn the hard way. As soon as the baby boomers pass pensionable age, their lesson will be harsher still. At least, that is what I thought until last week.
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