Saturday, 24 November 2012

1940 and 2012: Spot the Difference . . .

I have already raved about the BBC documentary-drama about the invention of the Paralympics (BBC Best of Men), but one of the most memorable clips from that programme has flashed back at me today having read a story in The Times about the young people wasting away in old people's homes (Martin Barrow).

In the 1940's, the only option for young men left disabled by the war was residential homes - I shudder at the recollection of a father suggesting his young son who can not have been older than 20 take up a place in a residential home, and commenting that the one he can in mind "had a good view of the lawn". Before Ludwig Guttmann, there were no alternatives. But yet, seventy years on, many young people are still faced with the prospect of old people's homes.

The charity, Sue Ryder, have published a report, The Forgotten Millions, which highlights the scale of the problem. Residing in old people's homes prevents these younger patients from accessing the specialist care they need - as a neurological patient myself, I can appreciate the need for this specialist care. The report also makes a very important point, which I believe takes an enormous amount of courage to make, going against the grain of much NHS focus and certainly the most powerful man in England, David Cameron. Burrow writes that the charity is concern that "amid the current focus on dementia, provision for people with other neurological conditions will suffer. It is estimated that there will be a million people living with dementia by the end of the decade. Yet already there are 10 million people with a neurological condition that affects their lives, and one million who are disabled."
Mr Woodward, Chief Exec of Sue Ryder, commented that "my concern is that the focus on dementia, which is to be commended, will mean that neurological conditions like multiple sclerosis, Huntington's and MND will get overlooked."

I found those few lines the most refreshing thing I have read in a long while! Whilst acknowledge that dementia is a serious problem, It also recognises that it is not the only problem, and so tactfully says what I feel! Much of the public debate around service provision focuses on the big killers such as cancer, which I can completely understand! But as a patient with conditions that are both rare and neurological (and whilst I am still young), I feel very strongly about focusing on the big issues but not at the expense of other conditions. I find it distressing enough sitting in clinic waiting rooms full of patients a significant number of decades older than me - I can't not imagine the despair of living in such an environment. Furthermore, for me, the most important things that keep me going are my job, activities and independence - remove those, and I have little to keep fighting my illness for.

The article goes on to describe what seems like a wonderful system with high-intensity input from specialist nurses and neurological medical teams - something I would give an arm or a leg for (although I understand the irony in saying that when neither work particularly well!).

Well done to Sue Ryder for raising awareness of the issue, and to The Times for again reporting on this area. But the work is far done - taking this story, it seems as if we have hardly moved from the 1940's at all . . .

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