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.

The lost insight

1976 did not begin well for me. I was living alone in a town where I knew no-one, still legally married and waiting for divorce, working unhappily as a social worker in West Lothian. I could have regarded my new single status as an opportunity and travelled. But I was wounded and needed to return home. So, quite by chance, I learnt of a job with the new Employment Rehabilitation Research Centre (ERRC) in Birmingham. I was interviewed in London by the Head of the Centre, Dr Paul Cornes, and became a ‘Higher Social Work Researcher’ with the Manpower Services Commission. The ERRC was an unusual creation. Part of a civil service agency, it was intended to help solve the problem of employment rehabilitation centres. These provided courses a few weeks long for disabled people, with the aim of helping them return to ‘open’ employment (ie jobs in the ordinary labour market, rather than sheltered work). Being part of the civil service was a problem - publications were seen as breaches of the Official Secrets Act. The senior civil servants who had seen the Centre as a solution were soon replaced by newcomers who saw it as a problem. This was not helped by the almost total ignorance among the same senior  senior civil servants of disability or employment rehabilitation. Paul Cornes navigated his role with great skill and increasing frustration, and proved one of the best bosses I ever had.

I joined the ERRC a few months after it began work, and replaced a kindly, committed but rather intense social worker called John Hannigan. The two of us overlapped in post for a week, to enable me to learn from him. We visited one or more (I forget how many) employment rehabilitation centres, and spent a lot of time talking. On the Friday, just after lunch, John gave me his considered verdict about myself, which went something like this:
“You’re a strange contradiction Stuart. On the face of it, you’re a brash loudmouth, but...”
At that point, someone came in the office and I never learnt the rest of the sentence. John’s great insight about me was lost forever. So I carried on being a brash loudmouth, albeit with a newly-acquired doubt that I might be a different sort of person underneath.

I stayed at the ERRC for some years, and, as usual, failed to take advantage of my employment. I did not publish, did not make the kind of contacts that would have developed a career in disability research, and failed to get a transfer to the permanent civil service. However, the research I carried out at the ERRC did form the basis for my PhD, and I spotted a rather special woman on the staff of the employment rehabilitation centre next door. The ERRC has long gone, but our marriage has remained the most important thing in my life.

The land of make-believe

You are watching the television programme Who do you think you are?, in which a famous person traces their family background. They start by visiting an aged relative. You see the famous person in their car talking about what they expect to learn from this visit and why this is important to them. You next see the car pulling up to the house of the aged relative and the famous person getting out and going to the front door. Inside the house, you see the aged relative go the front door, open it, and say “What a surprise”.

It is not a surprise, of course. There is a cameraman in the house, probably supported by a producer, a lighting engineer and a sound engineer. The scene will have been carefully set up. The scenes outside the house and in the car (perhaps filmed on a different day) will also have been rehearsed and then edited. The whole scene, in other words, is a skilful fraud. But it is fraud we are used to in factual programmes just as much as in film and television drama. This is the ‘naturalistic’ model, or the pretence that we watch people behaving spontaneously in the complete absence of all the cameras and the teams of people that make the pictures and sound happen. We are so used to this fraud that we no longer see it as such. When we see a lone presenter walking across the moors or up a mountain, we believe she is alone on the hills. Yet we see pictures of her taken from a helicopter, or pictures of her struggling up to some peak taken by a cameraman waiting for her on that peak. We are led to believe the commentator has walked the whole distance by themselves and found their own accommodation or pitched their own tent. The true surprise occurs when a commentator on television does mention his cameraman or production crew.

The frauds can go further. Wildlife programmes intersperse shots of animals in the wild (usually taken by highly-skilled camera team after weeks of careful work) with pictures of similar animals in zoos. This is all to give the impression that when we see an animal such as a polar bear go into its lair in the wild, we are then seeing the same polar bear in its lair feeding its cubs even though these later shots are actually of a different polar bear filmed in a zoo. ‘Reality’ television programmes involve set piece arguments provoked by a presenter, all to give the impression that the performers before us present a shocking insight into the raw side of life. More shamefully, contests on children’s television programmes have been fixed to produce the most entertaining outcome. 

This does not occur because the people who produce television are any more dishonest than the rest of us. Rather, they would probably justify these deceptions on the grounds that they help viewers comprehend an underlying truth (what family history tells us of the past, what a particular long walk is like, how polar bears feed their young, and so on). But they also do so to conform with the public’s expectations of television, derived in turn from films and other drama which, with very few exceptions, obey the ‘naturalistic’ model. This is so well-established that a whole genre of comic television programmes exists in which a presenter points out examples where the mechanics of film-making have accidentally been made evident (a visible sound boom or a shot of a camera crew in a mirror). These programmes are supposed to be funny because they show a breach of a sacrosanct social convention.

This is very different from drama on stage, in which it is more evident that we are watching actors portraying characters and following a script written for them. A good actor can make the audience forget this, provided the audience are engaged. Television, by contrast, requires less engagement by its audience and less suspension of disbelief. Indeed, the naturalistic model and the lack of apparent difference between factual and fictional programmes is a cause of morbid confusion for some television viewers, who send flowers when a character (not an actor) in a soap opera dies. Others have interpreted science fiction films and television programmes as the truth and truly believe that a race of intelligent reptiles have taken on the appearance of world leaders, or that the moon landings were an elaborate fake. For them, television (whatever they are watching) is the true reality, while their daily lives are but flickering images on the walls of the cave.

Going local

The Conservative Party has recently discovered to its dismay that it is unpopular. This is despite having a leader who seems fluent and intelligent, and who actively promotes ideas about society and politics that deserve some respect. These ideas (summarised as ‘localism’ and the ‘big society’) echo some fundamental themes in British conservatism, dating from Edmund Burke or before. In particular, conservatives propose that society is not a structure that can be demolished and rebuilt at will, but an organic whole, in which each citizen has a wide range of personal affiliations which involve mutual interdependence, guidance, and support. The term ‘big society’ has presumably been coined by David Cameron’s advisors to contrast with ‘big government’, which, according to conservatives, involves the replacement of these relationships by the impersonal imposition of centrally-determined rules, and the creation of subordination to the state in place of the mutual interdependence of free people. Localism is the logical consequence of this central idea. Conservatives see an efficient government as an essential requirement for a civilised society, but wherever possible it should be organised as part of that society, being delivered locally by people who know each other’s needs, rather than imposed centrally.  

Conservatives do not of course believe in equality as a virtue. Indeed, many conservative theorists celebrate inequality - a feature that makes conservatism particularly attractive for those with great wealth or high social status. Yet conservatives are usually reluctant to recognise that the extreme inequalities in this country undermine their very aspirations for both the big society and localism. Wealthy corporations and individuals make decisions with little regard for the day-to-day lives of their workers or the people who live down the road from their offices and factories. They prefer to build houses where they like and erect large standardised supermarkets to replace the distinctive local shops in our traditional high streets. Local control of planning would inevitably obstruct such developments.

These conflicts can be seen in the government’s Localism Act and its proposals for neighbourhood planning. One element of the Act is the ‘community right to challenge’. This involves parish and town councils taking over the running of services previously provided by city, county or district councils. But once a case is made by the parish or town council, then the service is open to tender. This means that the likes of Serco and Capita, which excel at winning contracts but not at providing decent services, will move in and expand their empires.

Another conflict, particularly relevant to my own village, is over new housing. The Localism Act has introduced ‘neighbourhood planning’, which is intended to give individual parishes, towns and neighbourhood of cities the right to develop their own plan for the development of their locality. ‘Town planning’, however, no longer involves the sort of vision that gave the world Bath or even Welwyn Garden City. Instead, it now means little more than the allocation of land for housing and commercial development, and ensuring that the necessary services are in place to support them. Nevertheless, devolving the right to determine land use is potentially important. The English countryside with its scattered communities is precious and vulnerable. But developers prefer greenfield sites (which are cheaper) in country villages (which are more attractive for prosperous commuters). Local control over development sites would enable towns and villages to block the speculative housebuilding which has covered so much of the countryside with breeze block and stud walls.

However, localism and neighbourhood planning contradicts the general  operating principles  of national and local government in England, which are based on centralisation, secretiveness, and subservience to the powerful rather than respect for the views of the ordinary citizenry. In my part of England, three district councils have come together to develop the South Worcestershire Development Plan (SWDP). If it had followed the principles of localism, it would have identified future needs for employment, housing, transport and other public services in the South of the County, and then set some general targets to be discussed and implemented locally. Instead, the SWDP not only specifies individual development sites in each town and village, but also the precise number of houses to be built on each site. The total number of houses for South Worcestershire has been based on national targets (no doubt set after a cosy discussion between senior civil servants and the building industry), and the allocation of housing numbers to individual towns and villages has been based on sites already identified by developers. A ‘consultation’ by the District Council’s planning department consisted of a planner visiting the village hall and telling us what was going to happen. 

And so Malvern Hills District Council, which only six years ago fought against an appeal by a developer to despoil a local view in my village, now supports the SWDP which schedules the very same site for 62 houses. At the same time, it is organising workshops to explain its commitment to localism. Perhaps they should listening to people as a first step.

The man in the iron knee

The photograph above was taken four years ago, on a trip with my son along the road on the South East side of Loch Ness. Note the bent right knee. This appears in many of the pictures taken at this time - in others I am sitting down, sometimes also with a grimace of pain. The cause of this distress was psoriatic arthritis, which affected my right knee and developed from an irritating pain to crippling agony over a period of two years. Standing with my leg straight became impossible. Walking became an ordeal. I changed in two years from a man who ran up stairs to one who took the lift whenever he could. Even the shortest journeys required careful planning and the use of a car whenever possible. Even so, a trip of a quarter of a mile would leave me in severe pain and sweating with exhaustion.

Pain also crippled the soul. I was less able than I had been to stand up to the usual bullies and egoists that are found in most organisations (and certainly in universities). My sense of personal effectiveness declined, and the avoidance of pain occupied an increasing part of my waking thoughts. Psychologically, I became a painful knee with a man attached.

My return to health required surgery, which replaced my right knee with one made from titanium. This only took place after the NHS tried and failed with the various non-surgical alternatives, from steroid injections to physiotherapy and orthotics. Eventually, my wife and children urged me to request a knee replacement. I went to my GP, and a referral to an orthopaedic surgeon followed almost immediately. The surgeon explained in great detail the operation, the risks involved, and the probable outcome. There was no waiting time for the operation in the local NHS unit, where I spent four nights in a private room with en-suite facilities. After discharge, I received aftercare from physiotherapists and various home adaptations from occupational therapists. None of this of course required any negotiation with an insurance company or personal payments for treatment.

I spent an elated three months living without knee pain, until the back pain began. It seems that adapting to prolonged pain when walking had twisted my back. This was followed by further physiotherapy advice and some adaptations at my workplace. But by then, I had become tired of the long journey to work and took early retirement. Now I have lost weight, walk good distances, and live without pain. I still have the yellow car though.

How to teach skills

There is a crisis at the heart of British education - not university fees, academy schools, or the declining standards of A levels, but the inability of our education system to produce sufficient people with the right kinds of skills needed by employers. How could this happen after two decades in which there has been a massive increase in university admissions? The answer is that universities are good at teaching knowledge and the skills needed to generate and analyse knowledge, but not very good at teaching the skills needed in other workplaces. Expanding the number of people who go to university therefore diminishes the proportion of new entrants to the labour force who have appropriate skills when they begin work.

What is the best way to teach skills? There is a useful example from history. In the middle of the Battle of Britain in the summer of 1940, the RAF upgraded 1050 of its fighter aircraft by installing new constant-speed props. These added 7000 feet to each plane’s altitude and significantly reduced wear and tear on aircraft engines. The way this was done is a model for how to promote innovation and how to teach skills. The new props were developed by de Havilland, who formed a team of expert fitters to tour each airfield. Each squadron was told to select its best fitters, who were trained by the expert team. Training involved three stages: the expert team would first demonstrate one installation; then supervise the squadron’s fitters as they carried out another installation; and finally assess the squadron’s team when they carried out an installation without supervision. If all went well, the expert team would move to the next squadron.

This three stage model of demonstrate-supervise-assess is the basis for all successful programmes for teaching skills. Of course, the de Havilland team was teaching one skill to people who already had many skills in this field. Most occupations require hundreds, if not thousands, of individual skills, and this means that training people to become skilled doctors, plumbers, or lawyers takes years rather than days. Most skills training also involves starting with newcomers who, unlike the fitters in RAF squadrons, initially lack relevant background skills. Some skills can be assessed quickly, but others (particularly those involving an ability to respond to emergencies or to deal with difficult or distressed people) require observation over a long period of time.

The example from the Battle of Britain also shows another essential feature of skills training: it should be done by the most skilled practitioners. These are the best people to judge what counts as skilled practice, and therefore also the best people to supervise trainees and assess whether they are sufficiently skilled to be counted as a competent practitioner.  This model of training, supervision and assessment by the most skilled practitioners has been a key principle in all trades and professions since they existed. Of course, skilled practitioners also need to be knowledgeable practitioners, and so training in professions and trades has traditionally involved more formal classroom teaching, often on a day-release basis.

And that was how almost all professions and trades were trained until recently. Most lawyers, nurses, professions allied to medicine, and librarians did not go to university, but gained their professional qualifications while working in a junior capacity in their chosen occupation. Most craftsmen became apprentices, and attended colleges of further education on day-release. The exceptions to this model, in Britain at least, were divinity and medicine. These were taught at university, although a university degree was not a pre-requisite for a medical career until well into the 19th Century. Teaching medicine at university had the advantage of making it easier to standardise the curriculum and the way it was taught. There remained an emphasis on acquiring skills because students spent much of their time in practice settings under the supervision of medical professors, who were chosen as being the most eminent practitioners in their specialty.

All this changed during the last 30 or so years. Virtually all professions are now taught either as a university degree or following a university degree. This has enhanced the status of these professions, but it has come at a cost. Universities have become vast institutions competing for funds from the state and research funding bodies. Competition for funds has meant a greater emphasis by the universities on their research output, often at the expense of the quality of teaching. This affects the recruitment of senior academic staff, including those who are responsible for teaching skills. As an example, medical professors are now appointed not primarily for their skills as practitioners, but for their research record, even where this exclusively involves experiments with mice and rats in laboratories.

As universities have sucked up educational funds and ever more students, the teaching of skills for the rest of the population has been allowed to atrophy. In Germany, over half of all young people complete an apprenticeship, taught in companies and vocational colleges. Indeed, as many as 40% of all employees in Germany have completed an apprenticeship. The proportion is similar in Australia. In England, it is 11%. Apprenticeships in most countries take three or more years to complete. In England, the equivalent figure is between one and two years.

It is hardly surprising, therefore, that Britain has needed to import trained people from the rest of the EU at the same time that it has record numbers of young people out of work. The failure to train all our young people in vocational skills not only harms the British economy, it also demonstrates a cruel neglect of the young people themselves.