Quiet man hopes for revolution of the mind

January 31, 2003

Tony Holland, Cambridge's new chair of learning disability, came into the subject by chance. He talks to Terry Philpot

In October 2000, health minister John Hutton hailed the white paper on learning disability services, Valuing People , as "a once in a generation" opportunity for change. Attitudes to learning disability have undergone a sea change since Tony Holland, the new chair of learning disabilities at Cambridge University, entered the field in the mid-1970s.

The chair at Cambridge, the third learning disabilities research centre in the UK, was established with a £3 million grant over 15 years from the charitable PPP Foundation. Holland says the money offers a "quantum leap" for his work to promote the next generation of research in the field.

The other two research centres - Tizard at the University of Kent at Canterbury and Norah Fry at Bristol University - have done much work on social issues such as citizenship and community living. Holland, whose background is in neuroscience, general medicine and psychiatry, says the new Centre for Learning Disability Studies ("it's a bit of a grand title") will be distinctly multi-professional and will draw together biological and behavioural sciences. It will fund a post jointly held in the faculty of social and political studies, and there is a proposal for a senior research scientist at the university's Barbraham Institute. Both of these will have a strong psychiatry and psychology link.

Holland says that we now know what services should look like, even if we fail at times to create them, but that science has often been left out of the equation. Part of the reason is the difficulty in attracting top-class scientists to learning disability.

The vast changes in the field - service provision, professional attitudes and the rise of the user movement - have been part of a cultural change underpinned by research. The contribution of medicine, Holland says, has been small or linked only to people with a learning disability who have benefited from general medical advance, while genetics has offered would-be parents informed choice.

However, he thinks that the new agenda for research can harness genetics and medicine more specifically to learning disability. For example, is there a genetic reason why people with Down's syndrome are prone to contract Alzheimer's disease or that people with Prader Willi syndrome tend to eat too much?

Perhaps mindful that eugenics so adversely shaped learning-disability services for three or more generations, Holland says: "This is not about 'curing' Down's or Prader Willi but about interfering with some of the consequences - at the moment this is the work that doesn't happen, the link between genetics and practice."

The new context in which to see all of this, he says, is one where learning disability is very complex and the person with Asperger's and the person with Down's are "chalk and cheese", with different capacities.

Holland admits that happenstance is what has brought him to where he is now. Born in Norwich, he and his identical twin brother both entered medicine (his brother is a paediatrician). He worked in various London hospitals in the usual capacities - house physician, house surgeon and senior house officer in general medicine, cardiology, general surgery and paediatrics. After he swapped to neurology and psychiatry in the mid-1970s, he did a year as a locum and GP in Australia. He moved to psychiatry because he saw that mental illness could be as devastating as any physical illness.

When he transferred to the Bethlem Royal and Maudsley hospitals in London, he wanted to work with child psychiatrist Sir Michael Rutter, but he was placed in Hilda Lewis House, then dealing with children with severe learning disabilities. "I thought I was being punished!" he says. But, he admits: "Like so many areas, you get involved and you can't imagine that you'd do anything else."

When, after other appointments at Maudsley and elsewhere, he went from clinical work to Cambridge as a university lecturer in developmental psychiatry (learning disabilities) in 1992, the move didn't seem so radical. He also took on a part-time post as consultant psychiatrist at the local National Health Service trust, which he retains. At Maudsley, clinicians were expected to engage in research. In fact, Holland says, his clinical work often stimulated his research interests. "You'd see someone and think: 'We don't know anything about that, but what is there to know?'" he says. But he became frustrated at not being able to fully develop his research thinking.

This is not to say that Holland sought academic seclusion. His reputation as a "quiet, modest man", as one fellow academic and clinician refers to him, is based on an understanding of and commitment to a diversity of issues. An interest in Asperger's and Prader Willi syndrome are just two specialisms: he has also devoted time to dementia and learning disability and to learning disabled people and the law. The last has made him one of the foremost critics of the government's mental health bill. He sees this as fundamentally wrong-headed - a confusion of public order - with the treatment of mental illness provoked by misinformation in the wake of high-profile killings, such as those of Jonathan Zito and Lin Russell and her six-year-old daughter, Megan, by severely mentally ill offenders.

He says: "I doubt that the government even thought that the bill would involve people with a learning disability, but the concept of mental disorder in the bill is so widely drafted that that is what will happen.

The mental health bill also clashes with the white paper, which is based on first principles. The way you get good legislation is to start from first principles. What mental health is about is treatment, even if containment can, in some cases, be necessary. But the way that is decided is to look at established legal and ethical principles."

Another of his interests is the complex territory of mental incapacity, which embraces matters as various as eating disorder, personal finance and ethics. Supportive as he is of the learning disability white paper, Holland says: "One sad thing about Valuing People is that issues about choice are not thought through properly. He says the dilemma is when to respect people's right to make decisions when they do not have that capacity and are less able to balance the issues, and communicate their wishes. But that also means that there is a danger of "riding roughshod over their wishes", he says. Holland believes the idea of user "choice" can be bandied about without much thought and that often users make a choice that does not accord with what professionals think best.

His strong views and interests are likely to make his term as chair an interesting one and to open up new avenues for research in a field that has undergone huge changes over the past 30 years but still clearly has many more to come.

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