Just what disabled people need

An article in yesterday's Guardian appears to confirm that the Government's new approach to the assessment of people with disabilities is to rig the system so that a pre-determined percentage of people applying for benefits will be refused any benefit. The government have always denied that this is their policy but it seems that the secret filming of training given to assessors shows trainers warning trainees that they will need to fail a fixed percentage. As usual in these cases, Atos (the private firm responsible for these assessments) and the government deny that any such agreed percentage exists. In the light of the filming, this is an absurd response. Read the full story here.

Interestingly the article concludes by noting that, on a separate but related issue, the high court has granted permission to two disabled people to bring a claim for judicial review against the work and pensions secretary to challenge the operation of the Work Capability Assessment, on the grounds that it potentially discriminates against claimants with mental health problems. There is great concern that the new system (like the current one) has not been designed to assess people with dementia, nor other people with mental health problems, so could well underestimate the problems such people face.

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Please share this photo guys @heardinlondon @owenjones84 @josielong twitter.com/MissEllieMae/s…
— Ellie Mae O'Hagan (@MissEllieMae) July 27, 2012

....but for those who haven't been watching the opening ceremony there was a segment celebrating the NHS and someone has understandably been inspired to tweet this pictorial comment.

One way in which people become institutionalised

Since we started attending events and sessions organised for people with dementia, we've got to know a fair few of the people that turn up regularly at the same places as us. One of them recently disappeared from view. It turned out that she had been living with the family of one of her children and has now, for reasons unknown, gone into a care home or possibly into sheltered accommodation.. Now this woman, and I've had the opportunity to observe her in various settings, does not come across as anything other than pretty old and a bit confused. She can hold perfectly sensible conversations and take part in all sorts of activities  -  singing, dancing, playing musical instruments, playing board games, etc.

I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?

A landmark

Whilst I was away on holiday, this blog passed the 5000 page views mark. I'm pleased that so many people have found my efforts of interest, also that a fair proportion of readers have read multiple posts.

By far the most read posts are those on the possible relationship between dementia and the herpes virus. This could be because such a large proportion of the population carry the herpes virus and these people are concerned about a possible link. I think it's important to point out that there's no suggestion that being a carrier means that you will experience dementia at some point in your life. First, no-one has suggested that all dementia is linked to the virus and, secondly, it seems clear that other factors must also be involved in the case of carriers of the virus who do experience dementia.

If you want to read all that I've written about the herpes virus, the simplest way is to put the word 'herpes' into the search box at the top left of the blog main page and press return.

Incidentally, I'm using 'dementia' here rather than 'Alzheimer's' because I'm becoming increasingly suspicious of the whole business of diagnosing a disease that can only be confirmed post mortem. You have only to read people's experiences online to discover a common picture of shifting diagnoses and people allegedly having two or more different kinds of dementia. There can't be many other fields of medicine where there is so much confusion amongst the 'experts', who can't even decide whether the physical signs they see in brains are the causes of the disease or the body's attempt to fight it. It's incredibly frustrating.

A very good holiday

Regular readers of this blog will have noticed that I haven't posted in quite a while. There's nothing sinister about this. In fact, we've been on holiday. To Italy. We drove in our modest motorhome, covering around 2500 miles. There was a time last autumn when I was pretty certain that we would never go away on holiday again.

So it's been an amazing and memorable experience. I was prompted to consider this particular adventure by an invitation from my brother and sister-in-law to help them celebrate a significant birthday by meeting up with them and friends and family for a few days at a villa in Italy. S has improved so much over the last few months that I became increasingly sure that we could make it. It's been hard work at times, but that's just how life is now, wherever we are. In some ways things are simpler and more straightforward when we're staying in the van. S has spent many months living in it in the years since we bought it and usually remembers everything she needs to about how it all works.

Having both decided that we wanted to go, the best plan seemed to be to make a real holiday of it, not just try to race there and back, so we've also spent some 'rest days' at nice places we've visited before like Lake Garda and Lake Como. We've had some very long days on the road, not by design but because we hit some awful traffic and got lost a couple of times. So we have been 6 or 7 hours 'on the road' some days. This hasn't troubled S at all.

I've got a lot of sorting out to do now, but in due course I'll return to this experience. If you've read about how S was when I started this blog, you'll probably be as amazed as me at what we've done. And I do mean we. At times on holiday, S was as contented as I've seen her in years. But, like me, she's also glad to be home.