The impact of research into intellectual disability

Universities in Britain are currently preoccupied with preparing for the next round of assessment for the allocation of government research funding (called the ‘REF’). A particular feature of this round is that universities are required to submit information about the ‘impact’ of their research, which will then be scored and included in the formula for allocating funds. As I noted in a previous posting, the idea that the whole of research can be scored on a simple scale is a prime example of a crackpot idea. However, institutions and governments cling to crackpot ideas, and respond to their inadequacies by making them more complex and hence even more crackpot. So it is with the REF.

Nevertheless, it is still important to consider which research has had the greatest impact, particularly where this concerns the lives of people who are disadvantaged, ill or disabled. If you look at the impact of research in my own field of public policy for people with intellectual disability, you find startling results. The two pieces of research with the greatest impact in the last five years have without doubt been the secret filming by the BBC in 2011 of staff abusing the residents of Winterbourne View, and the 2007 Mencap report Death by Indifference on the death by neglect of six people with an intellectual disability in general hospitals. Both studies received wide publicity and led to government reports, debates in Parliament, and legislation. Yet neither study was carried out by academics, and neither were published in academic journals. No academic study in this field over the last five years has had a remotely comparable impact. Why is this?

One reason is the way in that most policy research in intellectual disability is funded by central government. The Department of Health decided by the time it published the white paper Valuing People in 2001 that the healthcare of people with an intellectual disability was no longer a major policy concern. Little effort was therefore expended on commissioning research into general hospital care for this group of people, and there is still hardly any published academic research on this subject. Department of Health policy also favoured the decanting of people with an intellectual disability into small homes managed by the private sector and a reduction in specialist health services for those with mental health and/or behavioural disorders. However, small homes are usually unable to manage people with severe behavioural problems, and appropriate specialist care is costly. The private sector moved in to fill the gap by providing what were essentially long-term mental hospitals stripped of the level of trained staff that would have been provided if the NHS had managed the institution. The Department of Health did not see this as a problem before the Winterbourne View scandal, and so research was not commissioned.

But even if there had been a desire by the Department to commission this kind of research, it could not have been carried out by academics. Academic research involving human participants needs the approval of an ethical committee and (in the case of healthcare) of the NHS research governance system. Neither of these would have approved of secretly filming staff abusing residents or collecting data from families about how hospital staff caused death by neglect. Health and social services have a streak of self-interest which can be used to obstruct research into the poor quality of the care they can provide. But ethical committees block research for different reasons. Ethical committees apply rules developed in medical research, in which trials of new medications or surgical procedures carry a risk of harm to subjects. Medical trials are required to ensure that subjects give their informed consent to participation, and there are comprehensive guidelines for what counts as ‘informed’ and ‘consent’. This of course has the advantage of transferring liability to the subject. People who have problems giving informed consent therefore present particular difficulties for ethical committees, and it is difficult to gain approval for any research involving children, people with dementia, or people with intellectual disabilities. This is even the case when the research is (like most social research) descriptive and therefore involves no risk of harm from medication or surgery. In fact, the emphasis among ethical committees on the issue of consent makes it almost impossible for an academic to get approval to carry out any descriptive research involving people with an intellectual disability.

This leads to a bizarre paradox: research is deemed ‘unethical’ even where it aims to expose the grossly unethical treatment of vulnerable people (and hence protect them from further abuse). We therefore know remarkably little about the real world of residential care as experienced by this group of people or the real extent of the neglect and abuse they may suffer. This leads to a further paradox. Academics carry out little research in this important field of public policy: we rely for what we know on journalists and investigators in charities.

See also:
http://stuartcumella.blogspot.co.uk/2010/08/research-without-fear.html
http://stuartcumella.blogspot.co.uk/2009/10/great-crackpot-ideas-of-past.html

Living the cliché: I remember the sixties

Yes, I remember the 1960s, even though I was there. I had of course spent the late 1950s as a teenage soldier fighting with Fidel in the Sierra Madre. But now I was back in London smoking dope with Mick and Keith, going to mass protests in Grosvenor Square, and raving at the Isle of Wight Festival. I rode the hippie trail to Katmandu, and went to the summer of love in San Francisco, but most of the time I lived in a squat in Chelsea. I naturally had long hair and a beard and wore a flowery shirt and kaftan (bought in Carnaby Street). I had free love with so many girls, who wore (successively) miniskirts, hotpants, and maxi-skirts. I remember that they all had long straight blond hair and lots of black eye shadow (although it was hard to tell because of all the Pink Floyd strobe lights in the discos we went to).

What happy days they were - for someone else. Actually, I was only 13 at the start of the sixties. After a miserable time at King Edward’s School in Birmingham, I spent a year in Handsworth Technical College doing a new set of social science A-levels (which were not taught in King Edward’s School), and went to the London School of Economics. I left in 1968 and started a master’s degree at the University of Strathclyde. I lived in Streatham, Finsbury Park and Glasgow, and never in a squat. Nor did I ever take drugs, though I drank a fair quantity of beer. I did go out with one blonde, but she had shortish hair and was careful with the eye makeup. I am ashamed to admit that I had a flowery shirt and for a time did have a beard.

My experiences of living in the 1960s were probably quite similar to those of many other people of my age. But when I think back, my personal history has become infested with another set of memories: the tired collection of recycled clips and clichés that appear on television programmes about that decade. This raises an important question: at what point do people reject their own memories and start inserting fictional ones in their place? The only corrective to this tendency may be some kind of home-made reminiscence therapy: watch contemporary films made in Britain, which show what the streets looked like, how people dressed, and how they spoke to each other. I recommend you start with A Kind of Loving, This Sporting Life, The Ipcress File, and Alfie.