Needs & Wants
Prof June Andrews, Stirling University
Who says so?
I find myself out of step with the rejoicing at the Prime Minister’s recent announcement of increased dementia funding.
A good Presbyterian upbringing makes me feel I ought to be pathetically grateful when someone seems to be offering me a gift.
However, I couldn’t work out if it really was for me. They went on about the “UK” but I suspected they really meant England. All the people on the press release congratulating Mr Cameron were from English organisations which is usually a bit of a clue.
It was all about “doubling the money” spent on dementia research. More money is always good news, but when the amount of money spent on dementia research is currently one twelfth of what is spent on cancer research, it’s not going to be transformational. Twice of not very much is still not very much, I’m afraid.
It might seem impolite to compare this English thing with Scotland and Northern Ireland, where funding and high impact changes appear to have delivered measurable results already. For example, if you have got dementia and live in England, you currently have less than a fifty percent chance of getting a diagnosis from a doctor.
So no drugs, no specialist nurse, no signposting to your local Alzheimer organisation or advice on legal precautions, or exercise or anything useful like changing things in your house. In Scotland your chance of getting a diagnosis has increased radically in the last three years. In Northern Ireland it is even better. But we don’t want to dismay English people by emphasising that they have fallen behind...we are all in it together, aren’t we?
There is also the question of entitlement. Am I entitled to have a view that is different to the Alzheimers Society (who were little short of ecstatic)? Surely they are the chaps to know if something is good news.
But then I reflect on when I worked for a nurses’ trade union. Our job was to make things better for patients by making things better for nurses. Although the ultimate aim was altruistic, there was a significant amount of self interest to satisfy before the lucky patients saw the benefit to themselves. I had no hesitation in doing it at the time, because there was a long hill to climb.
But a major priority was to demonstrate to our members that we had influenced the government. We needed therefore to attribute all good things that happened to our own efforts and maximise our apparent success by demonstrating how unreservedly splendid those things were. Our influence must be seen to be effective ...so people would realise they had to listen to us. To be always petulant would make us look powerless.
It is a brave government that takes on a “user” or “member” organisation. Those organisations position themselves as the “voice” of the people with that condition. So when they express themselves satisfied with what the government is doing it must be a relief to our elected representatives. They’ve satisfied the customers who really matter. They’ve done what they were elected to do.
Or have they? Is it enough to do what the vociferous member organisations are pleased to praise? Or should governments work harder at gathering evidence about what would really make a significant difference? They may have high ethical reputations, but those organisations are themselves providers of services, and governments should not look to market traders for the ethical or even publicity endorsements of their policies.
User organisations are like social movements. They are swayed not by evidence but by unelected or unaccountable leaders. This mutual self congratulation between governments and single issue user groups cannot pass for policy analysis. Once you’ve been elected, we deserve more from you.
Don’t get me wrong. I have enormous self interest. The largest percentage of my work is paid for by donations and grants which would disappear if people think we are well funded by the government.
But the next time someone says that what the PM is offering is great news....ask yourself, “In whose interest is it for me to believe this?”
Prof Andrews is Director of the Dementia Services Development Centre