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What are the implications for research and outcome measurement? Dr. Jan Wallcraft August 2010.

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Presentation on theme: "What are the implications for research and outcome measurement? Dr. Jan Wallcraft August 2010."— Presentation transcript:

1 What are the implications for research and outcome measurement? Dr. Jan Wallcraft August 2010

2 I will begin by giving an outline of CA, then discuss the powerful social model of disability, some recent criticisms of its oversimplifications, and attempts to use CA to remedy these. Then I will talk about the problems service users have found in trying to apply the social model of disability to mental health. Then I will look at how CA could explain the complex ways people are disabled by psychiatry and its social consequences and how a CA approach could underpin research on the socially damaging effects of conventional psychiatry and a fundamental change of values in psychiatric treatments.

3 CA – was developed by Amartya Sen to understand the impact of poverty in a way that challenges conventional models of quality of life CA has been applied in international development to analyze the link between disability, gender discrimination, and poverty Along with Martha Nussbaum among others, Sen has made CA the leading paradigm for policy debate in human development. It has led to the creation of the UN's Human Development Index (HDI) – the usual framework for discussing equality of opportunity especially with respect to gender equity. CA emphasizes functional capabilities ("substantive freedoms", such as the ability to live to old age, engage in economic transactions, or participate in political activities) Poverty in CA is seen as capability-deprivation.

4 CA language – the main terms are Capabilities, Functionings and Capability sets. CA distinguishes between what a person actually achieves and what he or she could potentially achieve. Capabilities take in the full set of possibilities or realms of substantive freedoms actually available to each person Functionings are the beings and doings that someone actually achieves in the course of living a life. A persons capability set, includes all the various combinations of functionings that he or she could achieve. Since we can only improvise (out of many choices) one particular path through life, not every capability will be manifest as an actual, real-world functioning. SEE DIAGRAM NEXT SLIDE


6 UK or strong version of the social model of disability sets out a political, rights-based challenge to the medicalisation of the deficits assumed to follow from (perceived) individual impairments, and stating instead that disability is the result of social barriers, discrimination and oppression experienced by people with impairments (Beresford 2002).

7 Even in the disability movement there are disagreements about the strong version of the social model. Leading theorists have argued about the extent to which the social model of disability allows for the subtleties and complexities of the relationship between actual impairment and the wider cultural and social environment.

8 CA has been taken up by disability theorists to deal with some of these complexities, i.e. To see how impairment is converted to disability in practice, it must be viewed along the opportunity gradient: this shows the relative ease with which in a given setting, customised resources are available to enhance or extend that limited capacity to create substantive freedoms. Ones capability set are all those valued ends that fall within ones (adjusted) range of real opportunity. Uncorrected (uncompensated) impairment translates into social disability, which can be measured as capability deficit – both in the range of choices available, AND in the actual choices made (which can be limited by pressure of what people like me are expected to do).

9 In terms of mental health, so far, I would argue there is no social model with the political power which the social model of disability has had to affect government policy and public perceptions. Instead of a social model of mental health, we have social perspectives. The Social Perspectives Network (SPN) takes on the role of discussing how social factors contribute to people becoming distressed, and play a crucial part in promoting peoples recovery but specifically rejects entering into a struggle for domination with the medical model.

10 Professor Peter Beresford has argued for adapting the social model of disability to mental health: It is likely that a social model of madness and distress will offer the basis for a fundamentally different approach to mental health policy and practice, just as the social model of disability has done with disability policy and practice. The implications, he argues, could include: service users purchasing their own support in a mental health crisis, instead of medical treatment and hospitalization being the normal route. acknowledging that for many survivors recovery may not automatically mean getting back into a job with support removed from them, but ensuring the maintenance of flexible support so that people can maintain employment without fear of the benefit trap.

11 Despite such aspirations and encouragement, the social model of disability has not proved easy to translate into mental health terms. A national study of mental health service users/survivors, (due to be published this autumn) shows that although they found the medical model of mental health and illness to be mainly negative in its effect and want a social approach, some were wary of seeing their experience in terms of an impairment. This highlighted the importance of further developing the social model of disability if it is to have value and relevance more broadly for mental health service users/survivors. (Beresford, Nettle et al (forthcoming)

12 There is much in common between mental health service users and people with physical impairments – as we have seen from critics of the social model of disability. We also (probably even more so) need an understanding of the subtle ways in which we are damaged and disabled by psychiatric labelling, treatment, compulsion or even the threat of these. CA could be used to describe and measure how the original cause of difference –whether this is seen as resulting from a trauma, dissent from social norms or a mental disease process - is converted to a disability or a capability deprivation.

13 How I see CA working is as a model to underpin mental health research and outcome measures – individually or collectively. People can be asked – e.g. Focus groups – about essential capabilities they value, what they have available, what they would like, what helps and what prevents them from gaining access to those they dont have access to. Services and interventions could then be measured in terms of how well they enable people to develop their chosen capability set.

14 In the US, Kim Hopper and his colleagues are finding ways to adapt CA to mental health. Using CA they argue that we can examine how aspirations + concepts of self-worth are destroyed by psychiatric treatments + social stigma around medical labels such as schizophrenia Not just a persons life-choices but even their ability to aspire to the life they may still be capable of are damaged by psychiatric intervention and its consequences. Also CA can help conceptualise how to prevent people being labelled + damaged in the first place

15 Measures do exist (e.g. QoL) which are supposed to examine the social aspects of mental health problems and impact of services – now expected to be routinely used in outcome measurement. QoL measures use a mix of objective and subjective questions. But researchers find again and again that while the objective questions reveal reduced life quality for people with long-term diagnoses of schizophrenia, peoples subjective answers tend to minimise their losses. As a result, QoL is useless for measuring of change over time. Wallcraft, J. (forthcoming) Service users perceptions of quality of life measurement in psychiatry, Advances in Psychiatric Treatment

16 QoL results are explained in CA as adaptive preferences. Hopper says peoples acceptance of their reduced quality of life can be useful to those who want to assume that existing social inequalities are natural or given. Hopper describes this process as one of recalibrating what one wants or allows oneself to hope for... because of repeated experiences of denial and disappointment. He warns against assuming this damage is irreversible (pointing to the positive results of collective action) but argues for recognition that satisfaction shown in interviews may be poor indicators of peoples actual needs or interests.

17 1. CAs substantive freedoms approach to human flourishing places a huge emphasis on agency – exercise of self-determination 2. CAs concern is with social contexts in which people convert existing resources into real opportunities and choices 3. CAs hypothesis is that deprivation takes a toll on ones moral self leading to downward adjustment in place of hope

18 In mental health, medication, symptom management skills and rehabilitation might reduce impairment but their success in addressing disability depends on whether the enhanced capacity can be converted into valued social roles and activities (Hopper 2o09). A welcoming culture is needed to complete the picture – for instance, acceptable jobs and willing employers if work is to be a genuine option. Applied CA would mean recovery requires major resource allocations – in mental health and in wider systems to make choices and opportunities real.

19 My PhD argues that conventional biomedical treatment in First Break situations is not evidence-based and leads to ongoing life disruption + mental patient-hood. Hopper similarly argues that a first break in a young persons life leading to psychiatric hospitalisation can set in train a series of adjustments that can insidiously develop a self-perpetuating motion. The young person has, in effect, been socially redefined, finding membership in the clinic while losing membership in normal society. Hopper argues that young people in crisis risk being diverted from gaining basic core competencies they need for their stage of life, skills which can only be gained by taking risks and learning by trial and error.

20 CA theory argues that people tend to resist help offered if the price is giving up dignity, self-respect and agency even if the offered help is well-intended. Treatment programmes that ignore this fact risk failure. This means that coercive techniques should be closely scrutinised in terms of feasible options which support and honour self determination (e.g. advance directives and crisis plans).

21 CA-inspired questions about help in first break Can a crisis be reframed as an unwelcome but potentially productive ordeal – e.g. as an opportunity to work on values clarification? Is it possible to interrupt the disablement process itself at the point of initial reception-such that the disruptive impact and negative social consequences of help seeking are muted? When psychiatric crises happen at the same time as the ordinary work of negotiating life transitions (e.g. going to college, starting first job etc) the potential damage to normal progress in life is compounded - can biographical disruption be minimized by appropriately timed alternatives – (i.e. not only in the wake of the failure of conventional treatments). Can appropriately timed alternatives pre-empt social exclusion in the first place?

22 Clozapine is without doubt an extremely effective drug that can enable people to re-claim their lives from the voices...However I am not sure that I would want medication to strip me of what I feel is a special ability to experience life on a different level. I hear the voice of an angel named Lucia and another voice that is the Devil at my shoulder ( whom I have named Mr Sarky). This may sound quite scary and it often is but Lucia's presence is comforting and reassuring. For surely are not all things of note in life the result of a duel between good and evil where, eventually good prevails?... It is all part of the experience of life on another level and I wouldn't want to lose the ability to be privy to these experiences. Nor would I want to lose the creativity that such abilities entail. Yet I came close to doing just that. By switching off that perceptive part of my brain, I could easily have lost my ability to write poetry and to draw. This- along with the physical health risks, is why I will not be re-trying the clozapine. I do take some medication that hold things at such a level that I can cope with the voices and the thoughts that are put into my head without them overwhelming me. I feel this medication dulls things down to a level that is humanly possible to cope with and enables me to function at an ordinary level for the most part. At the end of the day, I do not want the voices completely taken away from me as they are there for a reason. Medication should be a safety net- not a sledgehammer! (Claire- Rethink Blog)

23 The social model of disability as it applies to mental health risks accepting the reality of of medically-defined impairments – which in fact are often contested Alternative evidence on madness and distress is needed taking personal experience as evidence. CA can reconfigure the social model by subjecting the category of impairment or mental illness itself to close scrutiny, and analysing the power of diagnosis and treatment to create capability deprivation. Alternatives should de-medicalise first break, seeing it as a transition (albeit severe and painful) and providing experienced guides confident that the person can make it through and able to provide support and reassurance.

24 A research agenda based on CA would create multiple local opportunities for research (with service users as leaders or full partners) to: Explore the ways in which peoples lives have been restricted through social and medical responses to mental distress Explore peoples actual hopes, needs and wishes for a full life Devise ways to enable communities to dismantle barriers and create genuine opportunities Measure the results

25 I believe that the term recovery in UK has been rendered meaningless, as Trusts now dictate the recovery agenda. Many service users fear recovery services which dictate the purpose and pace of their recovery and the resources available to them, with the reward being loss of services. Personalisation may seem to be the answer, offering increased choices, but without a CA approach underpinning the assessment of peoples needs, and the likelihood of increasingly restricted budgets it may be used as a political tool to undermine collective action among service users and between service users and front line workers to defend services, without providing real benefits in terms of increased capabilities and choices.

26 CA is already used in anti-poverty work and is being used in disability. It can also work in mental health as a tool to re-evaluate service users experiences and needs. We have (in theory) rights under CRPD to the same level of human rights and fundamental freedoms and full participation in society as everyone else. Yet negative aspects of mental health services and discrimination based on diagnosis deprive us of capabilities, i.e. substantive freedoms. CA could enable an inventory of the damage done by established systems of psychiatry to peoples self –worth, hopes and aspirations. People with mental health problems should be involved in listing fundamental capabilities that they value and the extent to which these actually exist in their lives. A CA approach can underpin the ways in which mistreatment is recognised, atoned for and amended, peoples hopes reignited, personal potential rediscovered, and future harm to the capabilities of people with mental distress prevented.

27 'Recovery is no longer a service user led agenda The term recovery in UK has been rendered almost meaningless. As most health and social care services in England are now following a recovery agenda, Recovery is becoming equated with loss of services, loss of benefits, and a push towards returning to work, without the support, retraining and flexibility this would require From a service user perspective, there is a danger that Personalisation policies also hide a hidden agenda of cost-saving rather than of providing services people need to live full lives.

28 We think there should be a Truth and Reconciliation process before there can be trusting partnerships in mental health: Mike Slade (2009) has said that the first step towards genuine partnership around any new policy agenda in psychiatry should be to call for a public apology for the wrongs done in the name of psychiatric treatment: real reconciliation and partnership may only be possible once a line has been drawn, through the symbolism of an apology, which explicitly recognises the need for a new trajectory in the future. He argues that public apologies are justified when the dominant group has inflicted harm on the subordinate group over a sustained period. He mentions some examples where former psychiatric patients have called for public apologies. He notes that a few very specific apologies in psychiatry have been made, but no more general acknowledgement of wrongful treatment.

29 We call for an official Apology for damaging treatments since psychiatrys origins circa 1850s Now that our human rights are (belatedly) internationally recognised, in the UN Convention of the Rights of Persons with Disabilities (CRPD), we think the time is right to call for an apology from our governments and professional psychiatric bodies for a list of wrongs (of which these are just a few possible examples): Oppressive, incorrect and unproven medical theories underpinning damaging treatments dating from the 1850s onwards which have harmed us physically and psychologically (not to deny that many individuals working in psychiatry and mental health services do their best to help patients and service users. This is not about individuals but a chance for psychiatry as a whole to admit and redress the failings of its profession). Creation of a body of dubious knowledge based on research we had no involvement in or choice about, and which has been given legitimacy to overrule our own self-knowledge and expertise by experience. Creating stigmatised services which isolate us from our families and friends and wider society and make it hard for us to recover our self-belief, health and social status.

30 The right to reparation We suggest that the apology should be negotiated internationally – through our representatives at EC and UN level. It should be accompanied by demands for reparations including: Provision of services defined by service users based on collective knowledge and expertise and service user/survivor controlled research Early intervention in first break/psychosis which is non-medical and non-stigmatising and based on existing work such as Soteria and service user led crisis houses. Financial help for peer support and self management Education and training in individually chosen + valued skills Legal status for advance directives, advance statements, living wills, fully negotiated care and treatment plans Repeal of all forced treatment legislation which is discriminatory and out of line with CRPD

31 Beresford, P., M. Nettle, et al. (2010 (forthcoming) Towards A Social Model Of Madness And Distress? Exploring what service users say, Joseph Rowntree British Council of Disabled People. (1981) The Social Model of Disability. Derby. Hopper, K. (2007). "Rethinking social recovery in schizophrenia: What a capabilities approach might offer." Social Science & Medicine 65: Hopper, K. (2009). Reframing First Breaks and Early Crisis: A Capabilities-Informed Approach, INTAR. Mitra, S. (2003). The Capabilities Approach of Disability. New Brunswick, NJ, Rutgers University. Mitra, S. (2006). "The Capability Approach and Disability." Journal of Disability Policy Studies 16(4): Nussbaum, Martha C. (2000) Women and Human Development: The Capabilities Approach (Cambridge University Press, Cambridge). Pinikahana, J., B. Happell, et al. (2002). "Quality of life in schizophrenia: a review of the literature from 1995 to 2000." International Journal of Mental Health Nursing 11(2): Sen, Amartya K. (1979) 'Utilitarianism and Welfarism', The Journal of Philosophy, LXXVI (1979), _____(1985). Commodities and Capabilities. Oxford: Oxford University Press. Shakespeare, T. (2007). "Disability rights and wrongs." Scandinavian Journal of Disability Research 9(3): Slade,M. (2009) Personal Recovery and Mental Illness, Cambridge, Cambridge University Press Thomas, C. (2008). "Disability: getting it right." Journal of Medical Ethics 34(1): Thomas, P. (2003). How should advance statements be implemented? British Journal of Psychiatry, 182, 548–549. UN Convention on the Rights of Persons with Disabilities Wallcraft, J. (forthcoming) Service users perceptions of quality of life measurement in psychiatry, Advances in Psychiatric Treatment

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