We sat down with Tony Holland, Professor of the Psychiatry of Learning Disabilities and Head of the Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG), to discuss his career in light of being awarded a CBE on the 2015 Queen’s Birthday Honours list for services to psychiatry.
Firstly, congratulations on your achievement – can you tell us a bit about the research that led to this award?
As you know, our work is very much concentrated on looking at the needs of people with intellectual disabilities (ID), and as the award is partly linked to the work that I’ve done as a part of the [CIDDRG] research group, I certainly can’t take all the credit. I hope, as a group, our research that has brought benefits to people with ID in a variety of ways. One example of that work is the research being done as part of what is called the CLARHC (the Collaboration for Leadership in Applied Health Research & Care). Our theme of this has been very much focused on trying to understand what services should look like and how they should function to support people with learning disabilities (LD) with particularly complex needs in the community. The findings from our studies have in turn directly fed into work that has been undertaken by NHS England and the Department of Health.
Another example of how the research has helped to inform practice is that over many years we’ve been very interested in the clinic-legal interface. Our work on the Mental Capacity Act was very much about understanding how legal concepts such as decision-making capacity [a person’s ability to make informed choices] could be translated into real life clinical and social care settings. As part of this, I became involved as an advisor to a parliamentary group looking at what was then called the Mental Incapacity Bill, which subsequent led to the Mental Capacity Act.
In addition we’ve had research projects that have looked specifically at the problems of specific groups of people – for example, our research into people with Down’ syndrome (DS) and why they have a high risk of developing dementia. Over the years we have progressed from looking at these issues clinically to using neuroimaging and other techniques to better understand the reasons for this association. Ultimately, we hope that there will be some very clear intervention that will prevent the onset of dementia. Prader-Willi syndrome (PWS) is another major interest of ours. Here again we’ve moved from the descriptive to the more mechanistic, and ultimately more applied: why do people with PWS overeat; why do they have temper outbursts? Our observations recently led to a small trial of vagus nerve stimulation (VNS), with unexpected but very positive findings.
To come back to the award, because of this research both in DS and PWS, I have been very involved with the Associations that support these patient groups and their families in the UK. I think it’s that sort of involvement that has been appreciated and that has been acknowledged, if you like, through the CBE.
For those that aren’t aware, what is the significance of the CBE?
Well, it stands for Commander of the Order of the British Empire, which is nowadays incredibly anachronistic. It sounds very grand, and obviously I’m very pleased to have it, but I’m also slightly bemused by it all, and frankly, embarrassed – one recognises that any contribution made comes from the work of everyone, not just me. My understanding is that what it’s trying to recognize is the contribution that perhaps goes beyond what you might reasonably expect of someone in the field. We are all aware when a celebrity athlete or actor is recognised, but a number of people from Cambridge were given awards, demonstrating their commitment to their subject and through their work hopefully enhancing the reputation of the University and perhaps the UK more generally.
Your contribution bridges psychiatry, public policy, and healthcare services. Can you tell us how you find these fields to have changed since you began?
I’ve felt very privileged to have been involved in major changes over the last 30 to 40 years. I started work in this area in the early 1980s, and over the subsequent years there have been some dramatic changes. That’s not to say we don’t have work still to do, or that the lives of people with ID are without struggle, but I can remember my first day training as a psychiatrist in the field of ID. I was attached to a 700-bed hospital and was told that there were the M wards, the F wards, the C wards, and the CC wards. These were the male, female, child, and ‘cot and chair’ wards – people with physical disabilities. It was an appalling environment, with twenty or more people, some very disturbed, in each ward. We’ve seen in this country, as in other economically well-off countries, a real change. By and large, the UK no longer has large hospital institutions – although recent history has shown that they easily re-emerge. This kind of change towards recognising the importance of individual choice and of social inclusion has I believe been very much informed by human rights and other legislation and has been very positive. The bit of the jigsaw now is to make certain that we have not only very good organisations that can provide social care and support, but also that we have additional expertise through the NHS that help ensure that individual health needs are met. People with learning disabilities still experience significant health inequalities and may not get the service that they need.
Over the course of your career, how have you approached balancing your clinical and research interests?
One of the nice things about being a clinician and having an academic post is that the two feed off each other. I think a lot of my interests that have led to research have been because of people I’ve seen or circumstances I’ve experienced. I can remember the first person I saw with DS who clearly had dementia. I remember thinking that here is someone in his 50s who had had a good life, but now, just like anyone else with dementia, was deteriorating, which was very sad to see. As a result of that observation a colleague and myself started a program of research in London. In a sense, seeing it in reality was important in stimulating research. There are really important links between clinical experience and the research; it was my and others’ experience working in community services and seeing the relative chaos of these services that led us to decide we must look at this in a more systematic way, which is how we began the research that we’re doing with CLAHRC.
You are planning to transition into partial retirement this September. To what extent will you continue to be involved in psychiatry and research?
First of all, I very much enjoy the work that I do, and I think that some of our research is at a really exciting stage where we are beginning to look at new therapeutic interventions, so part of me is very keen to be around for that. I also would like to stay around because I feel that I can make a contribution. The funding for the chair I have still has another two years to run, and we plan to use that to fund some core activities, so it seems reasonable to stay in that capacity until 2017, and possibly a bit longer if I am continuing to contribute and still enjoying it. But I am going to stop clinical work in the autumn. It’s been a very stimulating time, looking back; when I moved to Cambridge at the start of my career, together with many colleagues we closed the long-stay hospital and developed community services. And, although it’s been a rather rocky path, it’s also been really exciting to be a part of that clinical development and to see what I hope is a reasonably competent (although far from perfect) service. But I think, after many years of demanding clinical work the time has come to stop. I do like the idea of having a bit more time to do more writing. I feel at the moment that my days are so caught up with administrative and other demands. I am looking forward to sitting down and having a chance to reflect.
Do you have any final words for the department and the field as a whole?
Obviously, from a departmental point of view the strength of Cambridge Psychiatry is neuroscience, and I have to say that working in Cambridge has been a real privilege. We have available here people who are real experts, and a lot of the work we do and have done would not have been possible without them. But, having said that, I do think that there are also strengths – in fact, it’s something I’m quite proud of within our research group – in involving academics from very different and diverse backgrounds. Myself, and others who come from a medical or clinical background, can benefit from having perspectives from psychology, sociology, law, and anthropology. I would be sorry to see the department lose this richness of perspective and become narrowed exclusively to what is its core strength – that of neuroscience and neuroimaging. There is something special in having an atmosphere where you have people from different backgrounds to talk with and relate to. I think we all can grow with that experience.
Congratulations again to Professor Holland, who will continue in research in an Emeritus position, as well as contributing to the work of organisations such the UK Prader-Willi Association and the Down’s Syndrome Association.