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9 July 2012

Posted by DMC on 10 July 2012 in Diary |

Yesterday, late afternoon, I had another nausea attack. It wasn’t too serious but came in waves. When it was time to eat my supper, I managed without too much difficulty and felt none the worse for it. Indeed the nausea did not return. Alice is intent on mentioning this to Doctor West, but frankly I doubt very much whether she will have a clue what is causing it and I certainly don’t think it is serious enough to be admitted to hospital for ‘tests’. I suspect, with MND, I should have the odd days when I don’t feel too well and so far I’m very grateful that these have been few. I went to bed at the usual time, feeling a little fragile, but am glad to report that I’ve fell asleep very quickly and passed a good night, with only three episodes of calling to the carer to turn me.

The last two or three weeks my anxiety level has increased. This is possibly because any movement of my arms and hands, as when I’m working on the laptop, causes breathlessness and I tend to panic for a few minutes afterwards. Then, unless I consciously calm myself down with deep breathing – so far as my diminished lungs will allow – I feel myself on the verge of hyperventilating. The more one panics the more one is likely to need intervention by means of the respirator. I know if we mention this to my GP I shall probably be given some antidepressants but I’m not overly keen on the idea as I do not want to be sedated in order to cope with day by day living.

Literally, as I was writing this paragraph the telephone rang and it was a Doctor calling from my GP’s surgery wanting to clarify some aspect of my medication. I took the opportunity of explaining to this Doctor the increase in my anxiety level which she will now discuss with Doctor West clarifying the other aspect of my medication. I was pleased when she said that they would not necessarily prescribed an antidepressant for the anxiety; there were alternatives.

There has been talk in the press recently about withdrawing the winter fuel allowance (£200?) to the better off or, at least taxing them on it. We would fall into that category and would very happily forego this allowance in favour of doubling it in favour of the really vulnerable elderly people who live on the breadline, to whom such an increase would be a godsend. No old person should have to dread the winter because of their inability to keep warm.

Whilst talking about taxing the better of on this winter fuel allowance mention was also, may about the possibility of treating prescriptions in the same way. In other words making the better of pay for them, or, at least, taxing them as a benefit. I have no idea what is the total cost of my repeat prescriptions but I do know that the main one, the Rilusole was something like £373 per week when we looked into it before. As I also have half a dozen people are more common medication. I suspect the cost to ask would be a little over £400 a week or, say, £20,000 a year, out of saving which have already been is taxed! I think you will agree that seems he little punitive. From my point of view, I’m not worry too much as I think the earliest they would envisage bringing this tax into effect would be 2015, by which time I anticipate I would have rotted in my grave but I do worry about other middle class patients who have worked all their lives and accumulated some savings, instead of spending up to the hilt each year on Spanish holidays and the like, who would be penalised for being prudent.

We have all suffered from public sector bureaucracy from time to time, so for your amusement I have attached some extracts from letters from various public bodies. Click here and see if you also find them amusing or through personal experience and frustration over something you have battled with, with such public bodies, they make your blood boil.

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