Rachel Perkins OBE – Can mental health services as we know them really support recovery?

14th January 2013

A pre-conference article from Dr. Rachel Perkins OBE.

Late last year we announced that Dr. Rachel Perkins OBE would be keynote speaker at the SRN National Gathering 2013. To give you a sense of some of the things you might hear on the day, we asked Rachel to provide us with a special pre-conference article for your consideration.

In this piece, Rachel asks some challenging questions about the extent to which our current service system is truly fit for purpose when it comes to taking a recovery approach. She goes on to suggest there are strong vested interests in maintaining the status quo but argues that change is necessary to achieve a recovery vision. Rachel writes from the perspective of someone with considerable experience in planning, delivering and being in receipt of mental health services.

Over the last decade, Government policy initiatives in both Scotland [1][2][3][4] and England [5][6][7][8] have explicitly promoted recovery approaches and undoubtedly changes have resulted: from Scotland’s Recovery Indicator and commitment to peer worker posts, to England’s recovery colleges and Implementing Recovery through Organisational Change Programme[9][10]. Yet I would argue that we have barely begun to scratch the surface, and maybe some of our endeavours have been misplaced. Too often the prescription for improvement is ‘more’ mental health services and training for the professionals. However, as Mary O’Hagan [11] has argued, the growth of mental health services may have, albeit unwittingly, promoted exclusion. Those of us with mental health problems come to believe that experts hold the key to our difficulties. Our nearest and dearest believe we are unsafe in their untrained hands. So individuals and communities become less used to finding our own solutions and embracing distress as a part of ordinary life.

We cannot genuinely promote recovery and equal citizenship unless we can create communities that can include all of us. The centrality of mental health services, and the role of ‘mental patient’ in our lives must be reduced and we must have control over the support we need to make the most of our talents and our lives.

Mental health services and recovery

Recovery-focused practice requires a change in the balance of power within services yet there are worrying signs that recovery ideas are being distorted so they can be accommodated within existing paradigms, leaving the existing power of the system and professional groups largely intact. Traditional mental health professionals of all hues have a great deal invested in existing structures. There is an entrenched assumption that because of their specialist understanding, professional ‘experts’ must prescribe what is good for people and ensure compliance. Far from a change in the balance of power, we have seen an increase in the exercise of the ultimate use of power in services. That is, to detain and compel via use of the mental health acts. In England, use of compulsion has increased alarmingly: in 2011-2012 the Mental Health Act was used on a record 52,851 occasions.

rachel_figure1Figure 1 (above) Source: NHS Information Centre for Health and Social Care (2012) Inpatients formally detained in hospitals under the mental Health Act 1983, and patients subject to supervised community treatment, Annual figures, England, 2011/12, Health and Social Care Information Centre.

In Scotland, the new mental health legislation initially resulted in the decreased use of compulsion, but the last two years have seen a rather worrying reversal of this trend.

rachel_figure2Figure 2 (above) Source: Mental Welfare Commission for Scotland (2012) Annual Monitoring Report. Key findings from our monitoring of the Mental Health Act 2011–12, Mental Welfare Commission for Scotland

In Norway, concern about compulsory detention in 2012 resulted in a requirement that all mental health organisations have plans in place to reduce their use of compulsion. Also in 2012, the German supreme court of the courts (“Bundesgerichtshof”) ruled that forced treatment for people under custodianship in psychiatry is irreconcilable with the constitution. Despite powerful critiques [12], in England or Scotland there have been no similar systematic attempts to reduce or legally challenge compulsory detention and treatment.

Mental health legislation is intrinsically discriminatory. It affords powers to detain and treat people deemed to have ‘mental disorders’ in a manner that would be inconceivable among those with physical health conditions [13] and contravenes the requirements of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD – ratified by the UK): ‘respect for inherent human dignity and individual autonomy including the freedom to make one’s own choices’ (article 3), ‘legal capacity on an equal basis with others in all aspects of life’ (article 12), and the requirement that ‘the existence of disability shall in no case justify a deprivation of liberty’ (article 14).

Of course, many of us find treatment and therapy helpful, and for this we require professionals trained in the treatment and therapies of our choice. It is the balance of power that needs to be changed: so we have real choice and control over the treatment and therapy we receive. Services and professionals “should be ‘on tap rather than ‘on top’: putting their expertise at the disposal of those who may need it; easily accessible when it is needed, in the background when it is not; recognising and augmenting the expertise of lived experience; supporting individual and community resources and resourcefulness and helping people to find their own solutions.” [14] This must involve “shifting resources from treatment to community services, from hospital to education, individual therapy to mutual aid” [15].

Recovery is an individual journey that occurs within a social and political context. Our focus needs to move from treatment, care and containment to civil and human rights, promoting opportunity, choice and control.

‘From Psychiatric Patient to Citizen’ [16]: disability rights and self-directed support

“Recovery-focused mental health policy requires a shift from a primary focus on problem/symptom removal to helping people to live the lives they want to lead, do the things they want to do and participate as equal citizens. Therefore it is necessary to consider not only ways of changing the person so they ‘fit in’ (by treating symptoms and remedying skills deficits), but changing the world so it can accommodate the person.” [17]

In the broader disability world, disabled people came to realise that their real problems lay not within them – their loss of mobility, health, sight, etc – but in barriers in the environment: the attitudes of others and lack of support, equipment and adjustments they needed to participate in all facets of community life. Therefore, although for some treatment remained important, a ‘medical’ or ‘clinical’ model of disability was replaced by a ‘social model’ and an approach based on rights not ‘cure’.

A social model underpins the UNCRPD, and for the most part, the 2010 Equality Act and the forthcoming disability strategy – all of which explicitly include people diagnosed with mental health conditions. Perhaps the most useful approach would be to focus on the right to independent living, upon which broader disability policy is predicated. Some have long recognised the parallels with our counterparts in the disability movement [18]. In 1992 Patricia Deegan, argued “if we think about it, having a psychiatric disability is, for many of us, simply a given. The real problems exist in the form of barriers in the environment that prevent us from living, working and learning in environments of our choice … [the task is] to confront, challenge and change those barriers … social and interpersonal … that impede and thwart our efforts to live independently and gain control over our lives and the resources that affect our lives.” [19]

To afford choice and control, the disability movement have won direct payments and individual budgets to purchase the support of their choice, and peer led organisations to support people to do this [20]. This really does shift the balance of power but, to date, similar approaches are few and far between in the mental health arena.

Another Way?

I cannot, alone, offer a ‘blueprint’ – this is something we must work out together. The challenge we face is to hand over control to individuals and communities by “fostering service-user leadership in recovery and in services, integrating with other sectors, and engaging in community development and social inclusion work.” [21]

However, for what it is worth, here is my ‘starter for ten’:

We should probably start by recognising that much of what mental health services currently provide is not specialist treatment and therapy, it is more general support with life. Relying on professionals for this is a waste of resources and deskills individuals, those close to them, and our communities. Mental health services need to be stripped back to specialist assessment, treatment and therapy. These professional services need to be easily accessible when needed. Choice and control can be facilitated via personal health budgets allowing anyone with a longer term condition to purchase the treatment and support they find helpful – either from NHS treatment and therapy services or elsewhere should we so desire. And instead of inpatient wards what about a hotel or retreat, or mental health spa with a range of specialist therapies and treatments available?

The resources released by restricting mental health services to specialist treatment and therapy could be used in different ways.

When we acquire a mental health condition we may need help in thinking about how best to manage it and get on with our lives. This might best be achieved via an educational approach and maybe Recovery Colleges [22] led by those with lived experience and offering co-produced, co-delivered courses that provide access to both professional knowledge and the expertise of lived experience: who better to assist you than others who have faced similar challenges? And why should such colleges be within mental health services? Surely they would be better placed within our communities, available to anyone who wishes to better understand different mental health and emotional challenges. A resource to increase the capacity of communities to accommodate mental distress … and indeed anyone who needs to rebuild their lives following devastating and life changing events like physical illness or injury, bereavement, loss of a relationship, unemployment, addiction problems?

Finally, there will be some of us who require support to navigate life, communities and the support available (including specialist mental health treatment and therapy). This has historically been provided by clinical care co-ordinators in mental health teams, but navigating life is not a ‘clinical’ enterprise and if this sort of support is available only within specialist services what happens when people choose not to use such services, are deemed ineligable, or discharged from them? In the broader disability world much of this support has been provided by Personal Assistants employed using direct payments – might we learn from this? Or maybe people could choose to commission support from family, friends, others in their community, especially people who have travelled a similar path themselves. Maybe people should have access to ‘personal navigators’ of their choice (paid for with personal budgets over which they have control) and this choice should include peer workers. Some people may value support to think through what sort of support they would like to do the things they want to do in life. Again, people should have choice over where they get this support. And why should such support be reserved for those with mental health conditions? Surely help to take a full and active part in our communities may be useful to people with learning disabilities, autistic spectrum/neurodiverse conditions, literacy challenges, physical illnesses – including dementia, mobility or sensory impairments, addiction issues, ex-offenders, homeless people… Creating inclusive communities must include, for those who need it, assistance to navigate the physical or social environment.

And finally, what about compulsory detention and treatment? Well first, we have to acknowledge that this is essentially incompatible with choice and control. In the short term we really need to ensure that there is a requirement for every organisation to have explicit plans to reduce its use (via increasing choice of support/treatment using personal budgets, easy access to support when a crisis is looming rather than when it has already arrived, joint crisis plans, advance directives, etc). Longer term equal citizenship requires equality under the law and repeal of laws that apply to only one group of people. There may be times when any of us lack the capacity to make decisions for ourselves, and we may decide that at such times others (of our choosing) need to make decisions for us based, where possible, on our previously expressed wishes in crisis plans and advance directives. The right to refuse treatment must be the same for mental and physical health conditions … this must be part of the ‘equality of esteem’ between mental and physical health services enshrined in the English mental health strategy [23].

Change is not going to be easy – there are many who have a huge investment in the status quo – including very powerful professional groups whose hegemony would be challenged. But there is much to be gained for ourselves and our communities. Maybe we can start with demonstrating alternatives on a small scale and mobilising our political muscle alongside allies in the broader disability movement. Maybe we can use the current economic crisis to achieve real change. We have to make major cuts in services – but maybe out of this crisis can arise something that is far better for all of us?

Notes

1. Scottish Executive (2006). Delivering for Mental Health. Edinburgh: Scottish Executive
2. Scottish Government (2009). Towards a Mentally Flourishing Scotland: Policy and Action Plan, 2009 – 2011. Edinburgh: Scottish Government
3. Scottish Executive (2006). Delivering for Mental Health. Edinburgh: Scottish Executive
4. Scottish Government (2009). Towards a Mentally Flourishing Scotland: Policy and Action Plan, 2009 – 2011. Edinburgh: Scottish Government
5. HM Government (2009). New Horizons. A Shared Vision for Mental Health . London: Department of Health
6. HM Government (2011). No Health Without Mental Health. Delivering Better Mental Health Outcomes for People of All Ages, London: Department of Health
7. Further information about ImROC can be found here
8. Shepherd, G., Boardman, J., and Burns, M. (2010) Implementing Recovery: a methodology for organisational change, London: Sainsbury Centre for Mental Health
9. Bradstreet, S. and Mcbrierty, R. (2012) Recovery in Scotland: beyond Service Development. International Review of Psychiatry, 24, 64-69
10. Perkins, R. And Slade, M. (2012) Recovery in England: Transforming statutory services? . International Review of Psychiatry, 24, 29-39
11. O’Hagan, M. (2007) Parting Thoughts, Mental Notes (Mental Health Commission, Wellington, New Zealand), 18, 4-5
12. See, for example, Szmukler, G. (2010) How mental health law discriminates unfairly against people with mental illness, paper presented at Barnards Inn Hall, Gresham College, 15th November 2011 and Szmukler G. , Daw R. & Dawson J. (2010) A model law fusing incapacity and mental health legislation, Journal of Mental Health Law Special Issue, 20, 1-140
13. Szmukler, G. (2010) How mental health law discriminates unfairly against people with mental illness, paper presented at Barnards Inn Hall, Gresham College, 15th November 2011
14. Perkins, R. (2010) Professionals : from centre stage to the wings. In Sainsbury Centre for mental Health (Ed) Looking Ahead: The next 25 years in mental health. London: SCMH
15. Bradstreet, S. and Mcbrierty, R. (2012) Recovery in Scotland: beyond Service Development. International Review of Psychiatry, 24, 64-69
16. Sayce,L. (2000) from Psychiatric Patient to Citizen, London, MacMillan
17. Perkins, R. (2012) UK Mental Health Policy Development : A counter-argument deriving from users’ experiences. In: Phillips, P., Sandford, T. & Johnston, C. (2012) (eds.) Working in Mental Health: Practice and Policy in a Changing Environment. Oxford: Routledge.
18. See, for example, Chamberlin, J. (1993) Psychiatric disabilities and the ADA. An advocates perspective, in Gostin, L.O. & Beyer, H.A. (Eds) Implementing the Americans with Disabilities Act, Baltimore: Brookes; Chamberlin, J. (1995) Psychiatric survivors: Are we part of the disability movement?, Disability Rag and ReSource, March/April, 4-7; 15, 3-10; Sayce, L. (2000) from Psychiatric Patient to Citizen, London, MacMillan
19. Deegan, P. (1992) The independent living movement and people with psychiatric disabilities: Taking back control over our lives, Psychosocial Rehabilitation Journal, 15, 3-10
20. See Office for Disability Issues Independent Living Strategy projects: Support Planning and Brokerage Project
21. O’Hagan, M. (2007) Parting Thoughts, Mental Notes (Mental Health Commission, Wellington, New Zealand), 18, 4-5
22. Perkins, R., Repper, J., Rinaldi, M. & Brown, H. (2012) Recovery Colleges, ImROC Briefing Paper, London: Centre for Mental Health
23. HM Government (2011). No Health Without Mental Health. Delivering Better Mental Health Outcomes for People of All Ages, London: Department of Health