Monthly Archives: February 2012

Prof. Justine Schneider: What is meant by patient and public involvement in mental health research?

What is meant by patient and public involvement in mental health research?  I recently found out that organised activists had successfully recruited women with breast cancer to a key study, overcoming the barriers that researchers alone had faced.  I know that campaigns are sometimes successful in obtaining access to drugs through NICE.  But ‘mental health’ is a label attached to an enormously diverse group of people.  There are two issues that trouble me.

Firstly, I’ve always been perplexed that people with mental health problems are lumped together as one interest group.  It is often led by people with bipolar disorder, whose experience is to say the least different from that of people with chronic depression, while the stigma attaching to a diagnosis like for instance schizophrenia is of a different order.  Within these diagnostic groups, people differ in important ways: ethnicity, age, education, income and gender, all of which have implications for the impact of a mental illness.  Most mental health PPI privileges the voice of the educated, middle-aged, White population. As long as PPI is left to the researchers and other established groups, this bias is likely to be perpetuated.  In times of hardship the most vulnerable are at the cutting edge – shouldn’t we be prioritising the perspective of the most disadvantaged sectors?  

Secondly, I see patients ultimately as the consumers of research.  The analogy that I find most apt is that of a customer ‘building’ a house in which to live.  The customers know how it should look and feel, they know what they want it to represent for them. They choose a number of features, like the size of the rooms, the location of the front door, the type of roofing material.  But they employ professional, architects, planners, builders, electricians and plumbers to build the house.  Since I’ve spent decades trying to improve my own research skills,  I can’t help but see the lead researchers, interviewers, methodologists, statisticians, health economists and administrators as the professionals in the research enterprise.  It is not safe or efficient for most service users to take their places.

Patients should commission research as they would engage with the architect to build a house and control how the budget is spent, but they don’t need to ‘get involved’ in the technicalities.  Giving more power to patients means giving them the research commissioning budget.  The pressure on researchers from funders to devote more and more of our limited research resources to ‘involving’ service users is a distraction from the fundamental fact that meaningful patient involvement would mean giving service users greater control of how the money is spent – and that would mean the DH yielding some of its power to patients. 

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Professor Justine Schneider
Professor of Mental Health and Social Care
University of Nottingham

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Launch of the IMH Blog

Welcome to the launch of the Institute of Mental Health (IMH) Blog!  This blog is affiliated with the Institute of Mental Health (University of Nottingham and Nottinghamshire Healthcare NHS Trust).

Our aim is to capture the variety of interest and expertise that is reflected in the Institute’s diverse membership body by bringing together a range of different disciplines and interests groups collaborating to discuss pertinent issues within mental health.  The blog seeks to incorporate the four aims of the IMH by promoting current research, inviting discussions regarding innovative practice, providing a forum of information and education, and encouraging feedback and discussion on best practice.  Posts are written by a wide variety of those interested in mental health, including mental health professionals, academics, clinicians, service users, carers, researchers, students, etc.

To get the blog started, we are pleased to launch with six posts from within the Institute:

We encourage you to respond to a post or leave us comment, and hope that you will join the discussions.  In addition, we welcome posts on any mental health related topic of your choice, including responses to previous posts, news and events/publications you would like to promote.  For further information please email a member of the IMH Blog Team.

All posts and comments are moderated prior to being published on the blog to ensure that entries adhere to IMH and University of Nottingham guidelines.  Whilst you do not need to have a WordPress account to leave a comment, please note that all comments must be relevant to the IMH blog and be accompanied by a valid email address (which will not be published.)

We look forward to hearing from you!

All the best,

The IMH Blog Team
Jenelle Clarke, ESRC PhD Student (Sociology) (lqxjmcl@nottingham.ac.uk)
Melanie Jordan, NIHR CLAHRC-NDL (Melanie.Jordan@nottingham.ac.uk)
Amanda Keeling, ESRC PhD Student (Law) (llxak31@exmail.nottingham.ac.uk)

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Melanie Jordan: Response to Hugh Middleton’s post, “Illnesses like any other”

(For reference, please see Dr Hugh Middleton’s post, “Illnesses like any other”. The challenge of a multi-disciplinary approach to mental health.)

Hugh Middleton raises some admirable and poignant questions here, particularly in relation to the responses of young doctors regarding mental health as a strand of their medical training. I find the ‘Marmite-like properties’ of psychiatry (as a discipline to teach) to be a marvellous simile. Consequently, I am left pondering if this characteristic of mental illness is relevant also for the general population (e.g. the other readers of Hugh’s Jan., 2012 Observer edition). My own area of interest is prison mental health and the volatility alongside importance of political and public opinion is remarkably salient. Thus, I wonder if mental illness is a topic — for the public — that either commands attention, devotion, and concern or perhaps at other times a certain amount of distrust, inattention, and insensitivity; to précis (albeit oversimplified), a love versus hate relationship. Although, clearly, this rumination renders the public a unified social group with an absence of dissident opinions; whereas, this is of course not the case. To continue, as a (medical sociology) researcher, and not a clinician/psychiatrist, I find it a captivating and engaging pleasure to ‘revel in the mess’ that is the quagmire of mental health and illness policy, practice, research, and development. However, the aforementioned position of some doctors (as highlighted by Hugh) is understandable, as they are required to accept responsibility for these patients and their mental health; whereas, a researcher’s accountabilities in legal- and health-based terms are, relatively, diminutive. Thus, perhaps is it easier for academics to embrace Hugh’s notion of swimming in the ‘messy swamp’ that is psychiatry and its related endeavours. Notwithstanding this call to support yet recognise mental health research as a convoluted pursuit — remembering the ‘uncertainties of diagnosis, the absence of confirmatory laboratory findings and conflicting theoretical frameworks’ — there is perhaps (regrettably) also scope to consider how such studies align with the current age of austerity and the requirements for research to produce overt outcomes and demonstrable impacts. Nevertheless, if we accept ‘mental illness as an impending tsunami of disability’, continued research and development in the field of mental health is most certainly a requirement; moreover, neglect would, arguably, display myopic tendencies. After all (as noted by Hugh), ‘happiness, despair and confusion are everyone’s business’ and not just the concern of the portion of our population (approx. half, I’m told, but surely not?!?) who love to spread Marmite on their toast.

Posted by:
Melanie Jordan
NIHR CLAHRC-NDL
Nottinghamshire Healthcare NHS Trust & University of Nottingham
Institute for Mental Health
E: Melanie.Jordan@nottingham.ac.uk

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Jenelle Clarke: Response to Nick Manning’s post, “plus ça change, plus c’est la même chose”

(For reference, please see Prof. Nick Manning’s post,  “plus ça change, plus c’est la même chose”.)

Nick Manning’s post regarding the ‘routinisation of charisma’ within therapeutic communities is a timely reflection as the ATC prepares to celebrate 40 years next week.   With a scheduled round table discussion about the history of TCs, the issues he raises here will most likely be in the forefront of everyone’s mind.

Therapeutic communities have certainly gone through many transformations over the years.  Their popularity depends on who you ask; even more so for their relevance as a therapeutic intervention (current or historical!).   Some people will even express surprise when they hear that my doctoral study is exploring social processes within TCs – they thought TCs had long since faded away.

With a patchy research history (though better in recent years) and a habit of opposing dominant therapeutic interventions, Nick rightly says that TCs are today a ‘minor strategy in those areas where they are not a threat’.  As a social movement, TCs have struggled to maintain their edge and pushing ‘through a ‘paradigm shift’ in the field’ has yet to occur.

Understanding the rise and fall of social movements is certainly pertinent.  As an American, I need only look to across the pond for a recent example of charisma that has failed to change the world as so many of us (naively?) hoped.  Though instead of 40 years, it took less than 4 for the ‘revolutionary zeal’  of Obama’s ‘Yes We Can!’ to morph into several reasons why ‘No We Can’t’.  But perhaps even more important to understanding why things like this happen, is asking what happens next?

The question facing TCs as it celebrates 40 years of the ATC is crucial.  Ultimately as we reflect, we will all be wondering the same thing: what will the next 40 years bring?  Will TCs continue to be on the ‘fringe’ within mental health, or is there a viable alternative? Are we doomed to repeat endless cycles of ‘charisma and routinisation’, or can we produce something that genuinely stands the test of time?

Only time will truly tell.  But just as President Obama will be getting my vote again this November, I certainly hope that TCs will contribute significant research and ideas about therapeutic practice to the field over many years to come.   

Posted by:
Jenelle Clarke
ESRC PhD Student (Sociology)
University of Nottingham
E: lqxjmcl@nottingham.ac.uk

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Prof. Ruth McDonald: The Apple Diet – it may be good for your health, but don’t swallow it whole

Last November the Institute of Mental Health celebrated its 5th birthday. A month earlier the death of Steve Jobs, the man who took Apple from a small start-up enterprise to the world’s most valuable company dominated media headlines and popular attention. Jobs wasn’t universally popular (an interviewee quoted in Adam Lashinsky’s recent book ‘Inside Apple’ suggests googling ‘Steve Jobs’ and ‘asshole’ will produce a lot of hits and he’s not kidding!). And the secrets of Apple’s success are… well secrets. Jobs was notoriously secretive about the inside workings of Apple. Harvard Business School’s Davds Yoffie had open access to Apple for 6 months in the early 1990s before Jobs returned to head the company he’d founded. The resulting Apple case study, used as part of numerous MBA and Exec Ed programmes has been rewritten 5 times since its 1992 incarnation. But these rewrites contain no new information about what happens inside Apple, as Jobs denied Yoffie access, when he was back at the helm.

We do know a lot about Apple from outsiders and past employees, as well as from what Jobs himself said publicly. Importantly, Jobs was keen to retain the energy and flexibility of a small start-up company, despite Apple’s growth and was highly critical of anything that smacked of ‘bureaucracy’ (apparently ‘committee’ was a dirty word at Apple).

So what does all of this have to do with the IMH? Well, the Institute has gone from a small ‘start up’ to a multi million pound enterprise in a few years. The challenge of retaining the energy and enthusiasm associated with small ventures is an ever present one. For all its negative connotations ‘bureaucracy’ isn’t entirely a bad thing, as Max Weber pointed out (if you need some convincing, Paul du Gay’s in Praise of Bureaucracy is a great place to start). Yet although, transparent structures and processes, which are independent of individuals (however charismatic) may be desirable, as Robert K. Merton observed many years ago, an emphasis on conformity and adherence to rules, can result in rules becoming an end in themselves. The task for the IMH is to maintain structures and processes which ensure good stewardship of resources and systematic approaches to doing business (even though, at times, these may constrain individuals), whilst at the same time guarding against conformity as an end in itself. The sort of ‘goal displacement’ Merton identified would threaten spontaneity and (calculated) risk taking which appear to be key factors contributing to the success of IMH to date.

As an ex-NHS bureaucrat and an idiosyncratic social science academic, half of my brain can see the advantages of bureaucracy, but the other half would rather I was left alone to do as I like!  Before I suggest that IMH ‘stay hungry, stay foolish’ – Jobs’ mantra gleaned from the Whole Earth Catalogue, reflecting, amongst other things, his dislike and distrust of management ‘wisdom’ from Business Schools and the MBAs they peddle- I should probably acknowledge that Tim Cook, the man chosen by the Board as Jobs’ successor at Apple has an MBA and appears to be feel right at home with spreadsheets, rules and policies. I’d be the last person to suggest that IMH uncritically adopt ‘wisdom’ from Business School academics, but maybe the emphasis for the future should be on staying hungry. In a world where research is adding to knowledge every day, perhaps we should leave the staying foolish to others!   

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Professor Ruth McDonald
Chair in Health Innovation and Learning
Business School
University of Nottingham

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Prof. Eddie Kane and Melanie Jordan: The IMH’s new Centre for Health & Justice — its raison d’être

The intentions of this blog post are threefold: 1.) To introduce the IMH’s new Centre for Health & Justice; 2.) To overview the Centre for Health & Justice’s creation and its objectives; 3.) To seek bloggers’ development suggestions in relation to the Centre for Health & Justice’s goals.

In preceding years, the question of how best to deliver healthcare in both the justice environment and in secure healthcare settings (alongside considering the balance of investment between these two sectors) has been a topic of policy and service delivery debate. The new Centre for Health & Justice at the IMH aims to research and examine these issues further.

The Centre for Health & Justice intends to review how healthcare is fashioned (i.e. commissioned, provided, managed, and practised) across aspects of the UK’s Criminal Justice System. Recently, there have been a number of policy initiatives that have redrawn boundaries and moved budgetary and service responsibilities between and within health and justice agencies — aiming to improve the outcomes for people who are detained at various levels of secure provision across both systems. Significant financial investments have been made as a result of these policy alterations; the Dangerous and Severe Personality Disorder programme is one notable example. Significant further change regarding health and justice in this country is afoot; the Centre for Health & Justice’s research output intends to impact these amendments.

Whilst there is evidence that some of these past and new initiatives have or could improve delivery (both directly and indirectly) this evidence is drawn from disparate strands of research rather than a coherent, planned, and multi-disciplinary programme. The dimensions of ethics, law, education, criminology, social policy, environmental design and security, organisational design, and economics (as important examples) feature little in the currently published material. These dimensions, as well as clinically focussed and practically designed research, should provide the fundamental evidence base on which the new generation of health and justice services are built. Where these disciplines are part of the debate it is usually in a compartmentalised way and the different literatures and perspectives rarely cross-fertilise each other to form a base for new service initiatives, rounded evaluations, or policy evolution. However, these disciplines, literatures, and perspectives often represent stand-alone, well-developed bodies of knowledge that could — if brought together — form a powerful multi-layered framework to help shape and evaluate policy and service development. Such an integrative approach would better reflect the reality of the complex delivery and policy frameworks that form the often confused experience of those who are detained in the systems — and to a great extent the staff who work in them. The Centre for Health & Justice embraces intentionally a broad range of academic, practical, and clinical approaches and disciplines.

The development of the Centre for Health & Justice represents a natural response to the current trend towards the development of a more integrated policy and delivery approach to offender health. The Centre for Health & Justice brings together a multi-disciplinary, national, and international R&D and teaching capacity focussed on improving both the understanding and provision of health interventions for offenders, particularly those who experience mental illness/es.

Posted by:
Prof. Eddie Kane, Director, Centre for Health & Justice, IMH
Melanie Jordan, Centre for Health & Justice, IMH

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Dr John Milton: ‘Doing the right thing’

We all like people to do what we want. There are ways to achieve this, usually involving metaphorical sticks or carrots. Government is starting to think about nudging the science around choice (if there is such a thing). However what we are usually talking about in healthcare is ‘compliance’, usually defined as a willingness to follow a course of treatment but in effect meaning whether patients take the medicine prescribed by physicians. In the good old days, doctors prescribed the right pills and model patients took them. Then it emerged that actually as patients we only ever take our medicine correctly about half the time. Even worse, we now know that about only half the clinicians prescribe the right drugs. So an intervention with a capacity to reduce symptoms say by 60% only achieves about 15%.

Previously the only focus was on how to improve patients’ compliance with treatment. This is crucial in some areas of mental health, like psychotic illness, where insight can be sufficiently impaired that compliance with treatment is reduced. However the flip-side is to focus on ensuring clinician, not patient, compliance. This isn’t always easy. Take hand-washing, a known ‘intervention’ to reduce infection and iatrogenic complications within hospital. Despite being a low-cost preventative strategy, accessible to all clinicians, getting successful clinician compliance has been problematic. Notwithstanding high-profile campaigns, clinicians will over-estimate their compliance with hand-washing when covertly observed. This has led to novel strategies to improve hand-washing such as publically shaming under-compliant clinicians, the use of ward computer screensavers depicting bacterial Petri dish growth or best of all getting patients to ask their clinician personally if they have washed their hands.

Healthcare organisations are wrestling with areas of clinician ‘compliance’ in other ways. Take two examples. First, there is a debate is about finding the balance between algorithmic approaches to treatment, usually based on evidence, such as Maps of Medicine or NICE guidelines, with the specific clinical approach required for a particular patient with their specific presentation. This is a challenge in some areas of mental health where evidence about interventions can be scanty or the outcome data are insufficiently rich to evaluate. Most of us can usually make a case for exempting (not complying with) some part of a patient’s treatment from a standard algorithm or pathway, based on our wider experience, although with limited subsequent performance data to determine whether it is a good decision. This needs to change.

Second, clinicians are suffering from policy and procedure compliance overload. A recent BMJ article, whose author is a (ahem) Human Factors Consultant, noted how the clinical management of an elderly patient admitted with a broken hip would include 75 clinical and trust guidelines and policies. Think about how many emails clinicians might get a week helpfully updating them on changes to policy and procedures. Sending the emails doesn’t ensure compliance. If we want clinicians to do the right thing so that patients can have the right thing, simplifying the system (rather than shaming) might help.

Posted by:
Dr John Milton
Consultant Forensic Psychiatrist & Forensic Research Lead
Rampton Hospital
Nottinghamshire Healthcare NHS Trust
E: John.Milton@nottshc.nhs.uk

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