Citizenship & mental health: looking upstream for solutions to a better welfare system
In this article to be published in the upcoming edition of VICSERV's newparadigm journal, Dr Simon Duffy poses a challenge to the welfare sector, saying it often tries to solve the wrong problems in the wrong way. He says this challenge is particularly important to consider as the National Disability Insurance Scheme (NDIS) begins its national rollout.
Dr Duffy is the founder and Director of the Centre for Welfare Reform in Sheffield in the United Kingdom, and this article is based on his keynote presentation to VICSERV's recent Towards Recovery conference in Melbourne.
It is the first of a number of preview articles from the journal to be published this week at Power to Persuade. We thank VICSERV and the authors for their permission.
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Dr Simon Duffy writes:
The welfare state, and the services developed under its auspices, are a vital social development. Without the welfare state, modern industrial society would sink back into an era of insecurity, inequality and injustice. This would lead, as it has done before, to fear, war and terror. The welfare state is a good thing and it must be protected at all costs.
Yet it would be dangerous to assume that the design of welfare state is ideal. Indeed, given the legacy of the 19th and 20th centuries, it would be amazing if our first efforts to develop the welfare state were perfect. Why would we be suddenly endowed with the wisdom necessary to ensure that the design, funding and ongoing management of the welfare state was all it should be?
In fact my contention is that the current welfare system often tries to solve the wrong problems in the wrong way. Too often we respond to social problems with money, power and new forms of service. Too rarely do we try to understand the real source of our problems or design solutions that are truly effective.
Mental health is a good example of this kind of dysfunction. Modern mental health services have emerged from the dark period of stigma and institutionalisation that swallowed so many people with mental health problems. Yet progress away from institutional services is still very slow and today we see a vast empire of services, in which institutional and hospital based services are still dominant. While it may be natural to think that, if mental illness is the problem, then mental health services are the solution, this is a fallacy. This is clear from the international evidence:
“These findings [better long-term outcomes for schizophrenia in developing countries] still generate some professional contention and disbelief, as they challenge outdated assumptions that generally people do not recover from schizophrenia and that outcomes for western treatments and rehabilitation must be superior. However, these results have proven to be remarkably robust, on the basis of international replications and 15-25 year follow-up studies. Explanations for this phenomenon are still at the hypothesis level, but include: (1) greater inclusion or retained social integration in the community in developing countries, so that the person retains a role or status in the society; (2) involvement in traditional healing rituals, reaffirming community inclusion and solidarity; (3) availability of a valued work role that can be adapted to a lower level of functioning; (4) availability of an extended kinship or communal network, so that family tension and burden are diffused, and there is often less negatively 'expressed emotion' in the family.” (Rosen, 2006)
This research suggests that there is actually a negative correlation between mental health services and mental health. Now this does not mean that mental health services cause mental illness. The causes of mental illness are complex and disputed; it is probably the nature of society as a whole that offers the best explanation for why rates of recovery are better in developing countries.
In a sense, it may be that mental health services are a side effect of deeper social and community problems. For instance, it is clear from many studies that being black in the United Kingdom is very bad for your mental health (McKenzie, 2007). This is also associated with higher levels of imprisonment:
“Mentally disordered black males in England and Wales are six times as likely to be detained in secure forensic psychiatry services as white men.” (Coid et al., 2002).
So it seems that racism, operating at many different levels, is likely to be one cause of mental illness and of many other social problems. Yet addressing this issue is complex and will often lead to a focus on the symptoms of the problem, not the real problem.
We also know that rates of mental illness correlate with income inequality (Wilkinson & Pickett, 2010). It is likely that fear, economic insecurity and a sense of being devalued are all contributory factors. So it seems that social injustice is a cause of mental illness. Certainly in the UK, we also know that Government policy to increase employment rates is actually increasing mental illness and suicides:
“In total, across England as a whole, the WCA [Work Capability Assessment] disability reassessment process during this period [2010-13] was associated with an additional 590 suicides (95% CI 220 to 950), 279,000 additional cases of self-reported mental health problems (95% CI 57,000 to 500,000) and the prescribing of an additional 725,000 antidepressant items (95% CI 406,000 to 1,045,000).” (Barr et al., 2015)
Some academics have even argued that mental health professionals are themselves being compromised by their involvement in government-led programs that damage mental health (Friedli & Stearn, 2015). A recent report suggests that academic standards are also being compromised in order to support damaging health interventions (Faulkner, 2016).
Shifting the focus upstream
All of this suggests, if we genuinely care about mental health, that we should focus our attention on much more than funding for community mental health services. Instead we need to take a bigger view of the problem in order to address its fundamental causes. But this is so hard to achieve.
One helpful metaphor is the idea of heading upstream (Meyer, 2008). Imagine a group going out for a walk and then seeing a baby in the river. They will jump in to save the baby. But then they see more babies in the river. At this point one of the group gets out of the river and starts heading upstream. Naturally someone shouts, “Where are you going? We’ve got babies to save!” But they reply, “I’m heading upstream to see who’s throwing babies in the river.”
The point here is that even when we know that our downstream solutions are less effective and more costly than upstream solutions, once these solutions have been adopted they become normal. So it becomes very difficult to move attention and resources upstream to solve them more effectively. In fact those who demand we move upstream can appear as trouble-makers or heretics.
Figure 1 outlines the complexity of our current situation. We are committed to our downstream solutions and the further downstream we go then the worse our problems become and the more ineffective and dangerous are our available solutions. Ultimately we pay the
price of our failure to solve problems upstream in higher rates of illness, institutionalisation, abuse and death.
Figure 1: The Upstream Challenge
Shifting attention upstream seems difficult. Addressing problems of income inequality or social injustice may feel ‘beyond our pay grade’ and so we leave these matters to politicians or activists. We settle for doing the best we can within our current roles. However, I think we can do better than this, particularly if we recognise that this challenge does not involve one simple shift. Instead there are range of practical possibilities available to move upstream.
Potential and risks of the NDIS
In the Australian context, the most obvious opportunity to do so is the development of the National Disability Insurance Scheme (NDIS). Effectively this shift to self-directed support is a great opportunity to move resources from services to citizens. In turn this will lead to the development of new and effective forms of support, developed in partnership with people and families themselves (Duffy, 2013a).
In fact, while mental health systems have been slow to welcome self-directed support. the evidence suggests that it is here where we will see some of the greatest outcome improvements (Glendinning et al., 2008). No other group seems to benefit as much from being able to set their own goals, agree on supports that make sense in their own life and better participate in community life. The whole process of self-directed support seems to be a natural fit for increased mental well-being (Alakeson & Duffy, 2011).
The second area where we can see significant outcome improvements is when we shift our attention from the individual approach towards family, peers or community. There are a whole range of fascinating developments which offer us much better patterns for mental health services. Here are just a few examples.
One approach is simply to start with neighbourhoods – to focus on helping communities to address their own needs and well-being. The C2 community connecting process, first developed by Hazel Stuteley, is one very effective model which led to a 77 per cent reduction in postnatal depression, plus a wide range of other outcome improvements that would support better mental health (Gillespie, 2011).
Local Area Coordination, originally an Australian innovation, is now being used in England to support people with many different needs, including mental health needs, to avoid using health and social care services (Broad 2015). This model involves embedding a trained worker within a neighbourhood to build relationships, spot problems and help people solve their own problems in partnership with community associations.
WomenCentre, based in Halifax, leads work to help women in extreme and complex need to get their lives back on track. The work involves a partnership between trained professionals, women in need, and women volunteers who have been through crisis and come out the other side. The outcome improvements and efficiencies of this process are significant. WomenCentre offers a systemic and empowering model of support that is rooted in the local community (Duffy & Hyde, 2011).
Another inspiring model of support is provided by PFG Doncaster. This organisation was formed by a group of people with mental health problems who came together to challenge the local mental health system. They wanted personal budgets they could control, rather than the services on offer (Duffy, 2012). However, in the process of fighting for this right, they learned that they themselves, working together, were the best form of support possible. Today the group has taken root in one part of Doncaster and has started to support the whole community by developing a whole range of social activities. They also now support the development of other groups in the region.
These examples suggest that the way we think about the role of community mental health services can move in an upstream direction. Recently the welfare state has tended to push mental health services into being contractually defined and regulated service providers. However, if we move upstream, such organisations can become part of solutions that are rooted in citizenship, family or community. Services can become part of the community, not a service for the community. They can tap into the power of the peer, the love of families and the commitment of fellow citizens. They do not need to fear accountability to and partnership with people themselves. This is the positive and exciting path opening up to community mental health services in Australia today.
But there will also be major challenges. As economic insecurity grows so it is natural to resist change. In this respect I think the prevalent language of 'choice' and 'consumerism' is not a helpful paradigm, even if the idea of being a ‘consumer’ seems to be an advance on being a ‘patient’. Ultimately real progress comes when we start to think in terms of our citizenship. The power we need is not choice, but control; for it is with control that we can be truly creative – constructing solutions that really meet our needs (see Figure 2).
Figure 2: Different modes of power
This is not just true for those of us who have a mental health problem, it is also true for people who have professional roles, who run services or who work in the system. It is when we start to think of ourselves as citizens first that we can also start to address our real problems. This is also how our work takes on true meaning and value.
Ultimately the big upstream problems of inequality, prejudice and oppression can only be resolved by a society that takes its destiny into its own hands. It is only when we wake up to our citizenship, to our responsibility for our own communities, that we can begin to address these toxic problems (Duffy, 2016). This will take leadership, mobilisation and the development of a positive model of social change.
But Australia has already seen a sign of what this leadership looks like. The commitment to the NDIS is the world’s first serious effort to properly meet the human rights of all citizens with disabilities. It grew out a partnership of people, families and professionals, who effectively lobbied government and engaged with the wider Australian public. This is one of the most encouraging international developments today.
Inevitably there will be problems with such a big system change (Duffy, 2013b). At first the system may be too bureaucratic and clumsy. But as long as people, families and professionals continue to challenge themselves to keep improving the system then these problems can be addressed. The biggest risk for the NDIS is that people treat the system as if it were a fragile work of art that cannot be touched. The NDIS is a social and economic system created by Australians; critique, challenge and creativity will be essential to ensure that it becomes the best system possible.
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Disclaimer: Marie McInerney reported on the Towards Recovery conference for Croakey: see the coverage here.