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.