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
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I always say that we may have this illness, but we are all so different.
This is my own daily problems, but I would gladly share anyone elses, if they send them in,