Its 3 years ago, since we saw the launch of the National Dementia Strategy in England, and as someone who was involved in the planning process, I thought we were winning and would see instant changes in the way people with this illness were looked at and treated, but perhaps I was naive enough to think that all of the NHS departments would work as one, and get it working and working well.
I have worked with some government departments who seem to work well; whether that is just on the surface or not I am not sure, but I honestly thought that all of the health departments worked as one to get a better future for all concerned, including those with dementia. Little did I know that each government department is doing its level best to reinvent the wheel and have its own guidelines for everything including the way people with dementia are looked at and treated?
Some departments don’t think assistive technology is a good thing in dementia, yet many of us rely on it to get us through the day.
The National dementia strategy was worked on by people from every background, and also included many people with dementia and carers in each section of the project, so that everyone’s view was taken on board and accepted, not just the views of the so called professionals working in the NHS who think that they know it all, or the Civil Servants, who think they know everything and everyone else is stupid.
This was a democratic process where everyone shared their opinions, but at the same time accepted other people’s views, as like it or not in a case like dementia, unless you have the illness, are caring for someone who has it, or have seen it in the family, what real experience do you really have in discussing it. I get the firm idea that these civil servants will not accept anything written down which either they were not involved with, or the fact that the item is not written out in civil service jargon, like lawyers they use language which no one understands.
Surely the best way to discuss a health project like Cancer or Dementia is to have real people on the panel, and by that I mean people who really know what it’s like to have or see up close someone who has the illness. I find it distressing listening to health professionals and all of their jargon, using and changing words just to suite these selves, rather than have something that can be understood by everyone.
I know what it is like living with this horrible illness, and my wife gets distressed on my bad days, so why don’t these people ask what life is like in real terms and not what the textbooks say. What is more although there are around half a dozen types of dementia, there are as I understand it over 120 variations, which is staggering, but this explains why it is so hard to diagnose, as no two people with one form of the illness share the same symptoms and problems. I have a dear friend, who has Lewy Body Dementia like me, but his symptoms are totally different to mine, and I find it very hard to accept that he can remember so much of his work yet I cannot.
I always remember being at a conference and hearing a well-known and respected professor in Dementia saying, that although he is classed as being at the top of his field, he is always amazed that each time he takes a clinic he learns more about the illness. So if he can come out with comments like this it certainly makes some in the NHS and the Civil Service look total idiots for not listening.
I only hope that before too much time has passed, all government departments will treat all illness the same and will share information rather than doing their own thing, not only will this save vast sums of money but it will also save time and also help those who really need the help when they need it and not later as we have seen in many cases