Friday, 11 November 2011

A dreadful negative experience

I've hardly had time to think this through properly but we had a truly awful experience at the Memory Clinic last week. We had a phone call asking if, because we had not yet had any contact from the community mental health team (still haven't), to whom S had been referred, we'd like to have an appointment with a neurologist (it had just become available). I did wonder how a neurologist could help at this stage but felt we couldn't pass up any possibility, so agreed.

We arrived fifteen minutes early and were finally called in an hour later. S did very well waiting, getting no more agitated than me! When we finally went in, I explained that the hour long wait was just what someone with S's condition didn't need. There was a cursory apology. Then he said that the 'full assessment' would take one hour (bear in mind that S has been continually assessed by the Prof and his team since 2000) and I wondered why we were there, whether there had been some mistake. We discussed whether we would leave. Then he said it might be completed in half an hour. I wish we'd left but we are so desperate for help that we decided to stay.

He then proceeded to speed read S's twelve year medical history in twelve minutes, nodding sagely from time to time, while we sat there like dummies. I've come across this before with medical people. Absolutely no preparation. That's appalling time management and an utterly disrespectful and insulting way to treat patients.

He then started the assessment, trying to talk to S. Not surprisingly she was in no fit state to answer his questions. He soon had to talk to me. I trotted out all the information he asked for and which we had told the Prof three or four weeks before. The significant difference was that whereas the Prof's approach is firmly person centred and he is as interested in what the patient can do as what they can't, the neurologist was very clearly working to a check list and looked as though he was gratified each time he was able to enter a black mark. So whereas the Prof was genuinely impressed that S was so interested in the US Open Tennis, not so long ago, that she was able to sit through and enjoy two matches which each lasted over three hours, the neurologist wanted to know if she would have been able to remember the results the next day. At one point he wanted to start testing S with the kind of questions that she has been trying to answer for twelve years. I told him that the clinic psychologist had realised that this was not helpful several years ago and he reluctantly desisted. He then produced a little book and showed S, who he already knows has some problems with vision, four poorly reproduced passport-sized B & W photos of a very young Tony Blair, Bill Clinton, Parkinson and someone else, can't remember. Did she recognise them? No. Did she not recognise this one - pointing to Blair. No. But what he didn't learn was that S often follows the TV news, and comments appropriately at times. I wouldn't mind betting that she would recognise Gordon Brown if he ever appeared now.

Anyway, I could see that he was working towards a diagnosis - that's how they see their job. So when he started to sum up, I asked him if anything he was going to say would offer us help in terms of treatment. The answer, of course, was no. Then he said that we deserved certainty, we should have a diagnosis - even though we hadn't asked for one - and that S has Alzheimer's. He said that people at the clinic had been beating about the bush (he didn't use that phrase but that was the gist) for too long, looking at all sorts of other possibilities (quite a sensible approach, I would have thought) and saying that S was atypical when she wasn't at all, it was just that the memory clinic staff did not see many young onset patients - if they had seen those that he has seen they would realise that S's symptoms were not atypical at all.

In case I haven't made this clear previously, we knew that S has some form of dementia, that it is progressive and that there is no treatment. The fact that some arrogant, patronising know-all has given it a name makes not one iota of difference.

All this raises a lot of issues which I will return to in future posts. Perhaps one of the most important is the fact that there is only one way in which Alzheimer's can be positively diagnosed and that is post mortem.

The difference between being seen by the Prof and this robot is that when you walk away from an appointment with the Prof you feel positive, even though there is rarely anything substantial to feel positive about. When we walked away this time, we felt totally negative about the experience. Essentially, the difference is about being treated as a whole person rather than a brain with a body attached to it.

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