You Say You Want a Revolution ...
Recovery
has become the buzzword of 2008 in the drug field. You can see the
relief in many people’s eyes as they find that the
things they believe
in and the things they think are important in drug
services that fit under the
Recovery banner are finally being recognised as important. You can
also see the fear for others as they witness what they believe is
the rebranding of abstinence focused services as
Recovery in order to meet
short term media driven political and economic objectives. Attempts
to define Recovery (most recently that by UKDPC) have often
led to statements that are either factional or so bland they give
little if any indication of how they could ever be translated into
practice.
But Recovery doesn’t begin and end with substance use. Recovery is a much broader concept than that, and one that has developed in other fields as well – even to the point of being the dominant philosophy in one huge area of British Health and Social Care Policy.
During various points in my career I have been fortunate to spend time working in the field of user empowerment and mental health. In this fascinating area where the boundaries between health care, public protection and human rights have been most fiercely contested, the Recovery model has been a critical development leading to improved services and most importantly re-empowering people to take control of and if they wish, transform their own lives.
Recovery in the mental health field grew directly from mental health service consumer movements throughout the last 40 years of the last century - particularly in the USA. Like the civil rights movement, these consumer groups focused on political and human rights goals, setting their targets as gaining both political change in terms of extending the rights of people with mental health problems, and widespread social attitudinal change in terms of the stigma attached to people with mental health problems. This was to all intents and purposes a liberation movement - demanding an end to the institutionalised oppression of people with mental health problems and an acceptance of their right to freedom and self-determination. In terms of treatment and supportive interventions it was no longer a matter of the professional or the state deciding what was best, but of the individual achieving their own idea of fulfillment – and for those Maslovians amongst you – self-actualisation. This they called ‘Recovery’.
“I use the term Recovery to refer not only to the process of recovering from mental illness, but also to refer to recovering from the effects of poverty, second class citizenship, internalized stigma, abuse and trauma sustained at the hands of some "helping professionals", and the spirit breaking effects of the mental health system. Indeed, self help and social action cannot be arbitrarily separated. At some point helping ourselves includes joining together as a group to fight the injustices that devalue us and keep us in the position of second class citizens” Patricia E. Deegan M.D. 1996
For these activists it was of critical importance to distance Recovery from professionally defined models of treatment. Treatment was about the state providing services to make people what they thought they should be. Recovery, they argued, was not about "getting cured" but was about being whoever and whatever you were in the best, safest, and most fulfilling way you could.
In the USA, small scale evaluations of the impact on individual outcomes of recovery oriented services – most often user led and/or used managed services demonstrated real benefits – and real savings. State government and healthcare providers became interested in this new model of mental health care. The shift from activist movement to state commissioned process was rapid from the early 1990s onwards and proved controversial. The very mental health activists who had championed Recovery were cautious - worried that if the policy makers owned Recovery it would become ‘all surface and no feeling’ - simply a spun out version of old style professional-led care. This, they said, was dangerous, because for Recovery to be a reality there must be a fundamental redistribution of power from the state and the practitioner to the service user. As Nora Jacobson and Laura Curtis commented in their article Recovery as Policy in Mental Health Services
"Their message is that without fundamentally re-conceptualising the relationship between individual consumers and the system, we risk promulgating a cosmetic initiative that maintains the dependence of individuals on the system"
They further identified this phenomenon in some areas –
“With vision statements in hand, some states simply rename their existing programs. The actual services offered remain the same. Community support services, vocational rehabilitation, or housing support are now described as“Recovery-oriented” services. This renaming process demonstrates a lack of understanding of Recovery: in particular, a failure to acknowledge the necessity for a fundamental shift toward sharing both power and responsibility.”
For others the adoption of Recovery as government policy brought huge benefits. This was, they argued, an unstoppable force and once government agreed to the basic values and principles of the Recovery approach, they would not be able to mandate or spin the results. Organisations such as the National Mental Health Consumers' Self-Help Clearinghouse were established in the USA, as many self-help groups became a part of the psychiatric mainstream. The UK organisation- UKAN (The United Kingdom Advocacy network) - again built by mental health service users for mental health service users - was set up in 1990 to form an independent voice for the mental health survivors community and has remained independent ever since.
Mental health activists did not want the state to stop providing services that could help, but to stop defining what those services should do, to stop controlling how those services were consumed and to stop mandating the outcomes of those interventions.
In 2004 the U.S. Department Of Health And Human Services Substance Abuse and Mental Health Services Administration (SAMHSA) worked with a coalition of 110 different organisations and individuals to establish a new understanding of Recovery. They said there were 10 Key Components to Recovery –
1 Self-Direction - Consumers determine their own path of Recovery
2 Individualized and Person-Centered - Focussed on the person, adapting and changing with them
3 Empowerment - Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life.
4 Holistic - Recovery encompasses an individual’s whole life, including mind, body, spirit, and community
5 Non-Linear - Recovery is not a step-by step process but one based on continual growth,occasional setbacks, and learning from experience.
6 Strengths-Based - Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals.
7 Peer Support - Consumers can encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community
8 Respect - Community, systems, and societal acceptance and appreciation of consumers — including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery.
9 Responsibility - Consumers have a personal responsibility for their own self-care and journeys of recovery.
10 Hope - Recovery provides the essential and motivating message of a better future— that people can and do overcome the barriers and obstacles that confront them.
Building on learning from the USA, our recovery movement grew. Bringing together the Survivors Groups (people who have been recipients of psychiatric interventions often refer to themselves as survivors of those interventions rather than beneficiaries), the service user groups, the carers and professionals, alliances began to grow focussing on Recovery as the natural successor to de-institutionalisation and Care in the Community.
In the UK, while all is still not rosy in the garden, “Recovery” is now the cornerstone of our mental health services. That is why although you may find government targets for mental health service users that talk about access to housing and employment and self help services, you do not find effective treatment being defined by anything as crass and inflexible as the codification of the number of weeks someone spends going to a drug treatment service as progress. You do not find targets for mental health that talk about numbers in “treatment”, though you may find targets that look at availability of treatment and speed of access to treatment for those who want it. This is why also the aim in mental health in theory at least is to only ever coerce people into accepting psychiatric treatment in the most extreme of circumstances. For most mental health practitioners the focus is to get the majority of people out of specialist treatment rather than keep them in it. This does not mean they receive no help at all, but simply that that help should be provided at the lowest threshold possible to enable the person to get on with living their life the way they have chosen.
That Recovery is a positive process is undeniable. That it is a process belonging to the individual is unchallengeable. So when the state accepts that "Recovery" is what it wants to invest in, it must accept different ways of working. The individual consumer will always retain their own definition of Recovery, so they must retain ownership of the outcomes of that process – and the right to define whether it has been successful or not. Although we all know that governments don't like to pay for things they can't measure and it’s really hard to measure things you can’t define, we need to resist the temptation to define ‘Recovery’ itself through a series of measures and outcomes. Because whether these definitions come from groups of services users, or as a result of the consensus of small groups of professionals, they all run the same risk. That is, in seeking to impose a definition of Recovery, you take away the most important thing about it - that it belongs to no one other than the person who experiences it – regardless of who pays the bill.
And while Recovery is clearly a process, it does not seem to be one whose start point or end point can be defined except by the person experiencing it. In the UKDPC definition of Recovery, they say that
"The process of recovery from problematic substance use is characterised by voluntarily sustained control over substance use which maximises health and well being and participation in the rights roles and responsibilities of society."
So, hang on, if I'm a substance user who voluntarily controls my own substance use but who chooses not to have participation in the "rights and roles and responsibilities of society" I can't be in recovery? Who says so? What you going to do? Make voting and working and watching Eastenders mandatory for all ex users? Recovery is what I define it as.
Or say I want to participate in the "three R's" of society but every 6 months or so I have a binge. Am I not in Recovery? Don't I have any say in deciding that?
For me, defining Recovery as a process to be controlled by the individual, but then imposing a whole set of values and outcomes upon what "characterises" that recovery is to miss the point. You have to let me judge what my Recovery is. It is not up to you to normalise me. These are my choices, my hopes and my decisions. You make them yours, then you do exactly what those early mental health activists feared. You create "a cosmetic initiative that maintains the dependence of individuals on the system".
As Dr Steve Coulter said in a response to postings on David Clarks Wired in Blog:
"The major unstated assumption ... is that the clinician's role is to decide what constitutes "recovery," and therefore goals of treatment. This is a form of paternalism, and is intrinsically unethical for any licensed professional. For essentially all other conditions, and certainly any chronic illness, the overarching goal of a clinician is simply to apply his craft to be of help to the sufferer. What constitutes "help" for the sufferer can only be decided by the client, ultimately. One may have a professional target of remission or some other defined outcome, but the choice of destination belongs to the client, not the clinician."
That is not to say that we cannot as professionals, service users and policy makers do what they did in mental health and begin to explore what we need to do to support Recovery, to define the conditions in which opportunities for people to achieve Recovery are optimised, or to find new ways of working which return the power to the service user and rebalance old inequalities. This is how Recovery became the dominant philosophy in the UK mental health field.
I spent some time with an old friend last week who has been working for years as a service manager developing Recovery oriented mental health services. She told me that in the late 90's and early part of the century Recovery rapidly gained credence in mental health. Through the work of user groups and coalitions, the developmental work of NIMHE and other organisations across the field, and through live projects and action research, consensus was built around the Recovery model. She said the biggest challenge she faced was in changing the staff culture. No longer were people there to make decisions for people, to impose their will on people or even to ‘lead by example’. Staff had to find a new role, one that was about first of all helping people define their own ideas of what Recovery would mean – whether that was feeling completely well, or finding something they owned and understood in their own experience of illness (for example having a positive experience of hearing voices). But once that challenge had been dealt with, she said the battle was not over. Key for the success of the Recovery model was the ability of staff to empower service users to access the help and support they needed in the community. Stigma and discrimination among fellow professionals and the public were the biggest barriers here – while the service and the individuals recognised their rights, other public services and the public had problems doing so. This is why the Department of Health and its partners in mental health services are currently undertaking so much work on campaigns and initiatives to reduce stigma and promote the human rights of individuals experiencing problems with mental health
When NIMHE – The National Institute for Mental Health in England (now part of The Modernisation Agency) attempted to pin down a framework for recovery in 2004, they identified that a recovery-oriented system of care will:
Revolutionary stuff indeed - and not just for mental health services, but for the whole community.
Also critical to the NIMHE definition of Recovery is Values Based Practice. Values Based Practice is the other side of the coin from Evidence Based Practice – the current mantra of the drugs field.
Values Based Practice is an approach to working with people that says that the values of society, the service user, the service itself and the practitioner are all critical elements of interventions and they need to be understood and explored.
Values Based Practice accepts that every service user is a unique individual who has a set of values and views about their situation, whose life is impacted by the values and beliefs of their family, friends and community. Implicit within Values Based Practice is an understanding that the imposition of another’s values on an individual is not only unfair and often cruel; it is also hugely counter-productive in terms of Recovery.
For drug services this means that behaviour change – where that is a legitimate service user owned outcome – is a negotiated rather than a coerced process and where coercion is outside the control of the service or practitioner, the impact of that coercion on the individual is acknowledged. I know that there are drug services whose dominant philosophical approach is Values Based, but I also know that they are in the minority and that some are finding it difficult to continue working in such a way within the current system. (Its hard to imagine what a Value Based Practice Guide to Urine Testing and Long Drawn Out Incremental Titration During Induction Followed by Rapid Detox and Discharge as a Successful Completion may look like, but I’m sure there’ll soon be someone working on one somewhere...)
If we are willing to learn some lessons about Recovery from the Mental Health Field there is a rich seam of experience, understanding, conflict, debate and development to be mined there. One of the main things I hope we can pick up is that seeking to define Recovery from the perspective of anything other than an individual is a vain and foolish task, but seeking to better understand how we can make policy, develop services and manage individual interactions as service consumers or service providers is fruitful.
We will need a lighter touch from government, a commitment to user defined outcome measurement (where the user says “this is what success would look like for me", and the government seeks to measure the services success in meeting those aims), and a move away from trying to impose our values and our norms onto each other. We need to allow some freedom for services to develop and evolve models of working that support recovery - and we will need to make some space in our crowded market place for projects genuinely run by and for people who've experienced services and substance use and bring consumer representation up to the highest levels in our existing organisations.
We need a sector wide commitment to Values Based Practice to be made – a shift back to a pragmatic, humanistic, hopeful and above all individualised means of providing interventions that help people change their own lives.
Most importantly we need to begin to challenge the stigma and discrimination that is so central to the social experience of many people who have experienced problems with substance use. It is arguable that much of this stigma is as a result of efforts by the field to frighten the public and those in power into giving us money to protect them from these dangerous junkies. There is likely, with the exception of paedophiles no more vilified group in society than drug users. A recent spate of dog thefts in my area has been universally blamed on 'junkies', as has the torture of a cat, the ram raiding of the local greengrocer, the firebombing of a bus shelter, the uprooting of trees and the closure of the local library following a spate of mysterious vomiting incidents in the foyer (yes I do live in London). We need to challenge these misapprehensions and prejudices. I remember working in community care at the time of the closure of a large mental institution on Merseyside. We experienced endless NIMBYism when we tried to find new flats and jobs for people coming out of long term psychiatric care. “People will never tolerate it,” we were told. “You simply can’t have THEM living near US”. But 20 years on, although NIMBYism still rears its head from time to time, by and large there is a far greater acceptance of the rights of people with mental health problems to live in the community. We can achieve the same for the people who use our services.
We owe it to all those activists within our own field and beyond who have fought for the right to determine their own future and their own Recovery to admit that many of our services, defined as they are by rigid targets and mandated outcomes, provide an environment that is neither healthy nor conducive to Recovery.
So for now I hope we keep on talking. As David Clark said, dialogue and discourse is critical to moving ahead on these issues. We need to remember that some people’s voices are not as powerful as our own. The discourse needs to have real involvement and engagement – simply having a service user or a carer sitting on a group with a load of clinicians or mandarins isn’t going to give you a balanced view. Consensus is not built by small groups meeting in secret. In fact that's more like how you go about building a caucus. Consensus is built from open dialogue, disagreement, good humour, honesty, inclusivity, the ability to accept critique and compromise.
Back to Patricia Deegan and that 1996 conference on Mental Health, right at the moment when the Recovery movement was beginning to see its own impact in mental health policy across the developed world. You can find the original here, but I’ve altered this part of Patricia’s speech so we might see just how far we have to travel in substance use to achieve what has been achieved in Mental Health -
“We are a conspiracy of hope … We are refusing to reduce human beings to illnesses…We are here to witness that people who have problems with substance use are not things, are not objects to be acted upon, are not animals or subhuman life forms. We share in the certainty that people who have problems with substance use are first and above all, human beings. Their lives are precious and are of infinite value.”
4631
But Recovery doesn’t begin and end with substance use. Recovery is a much broader concept than that, and one that has developed in other fields as well – even to the point of being the dominant philosophy in one huge area of British Health and Social Care Policy.
During various points in my career I have been fortunate to spend time working in the field of user empowerment and mental health. In this fascinating area where the boundaries between health care, public protection and human rights have been most fiercely contested, the Recovery model has been a critical development leading to improved services and most importantly re-empowering people to take control of and if they wish, transform their own lives.
Recovery in the mental health field grew directly from mental health service consumer movements throughout the last 40 years of the last century - particularly in the USA. Like the civil rights movement, these consumer groups focused on political and human rights goals, setting their targets as gaining both political change in terms of extending the rights of people with mental health problems, and widespread social attitudinal change in terms of the stigma attached to people with mental health problems. This was to all intents and purposes a liberation movement - demanding an end to the institutionalised oppression of people with mental health problems and an acceptance of their right to freedom and self-determination. In terms of treatment and supportive interventions it was no longer a matter of the professional or the state deciding what was best, but of the individual achieving their own idea of fulfillment – and for those Maslovians amongst you – self-actualisation. This they called ‘Recovery’.
“I use the term Recovery to refer not only to the process of recovering from mental illness, but also to refer to recovering from the effects of poverty, second class citizenship, internalized stigma, abuse and trauma sustained at the hands of some "helping professionals", and the spirit breaking effects of the mental health system. Indeed, self help and social action cannot be arbitrarily separated. At some point helping ourselves includes joining together as a group to fight the injustices that devalue us and keep us in the position of second class citizens” Patricia E. Deegan M.D. 1996
For these activists it was of critical importance to distance Recovery from professionally defined models of treatment. Treatment was about the state providing services to make people what they thought they should be. Recovery, they argued, was not about "getting cured" but was about being whoever and whatever you were in the best, safest, and most fulfilling way you could.
In the USA, small scale evaluations of the impact on individual outcomes of recovery oriented services – most often user led and/or used managed services demonstrated real benefits – and real savings. State government and healthcare providers became interested in this new model of mental health care. The shift from activist movement to state commissioned process was rapid from the early 1990s onwards and proved controversial. The very mental health activists who had championed Recovery were cautious - worried that if the policy makers owned Recovery it would become ‘all surface and no feeling’ - simply a spun out version of old style professional-led care. This, they said, was dangerous, because for Recovery to be a reality there must be a fundamental redistribution of power from the state and the practitioner to the service user. As Nora Jacobson and Laura Curtis commented in their article Recovery as Policy in Mental Health Services
"Their message is that without fundamentally re-conceptualising the relationship between individual consumers and the system, we risk promulgating a cosmetic initiative that maintains the dependence of individuals on the system"
They further identified this phenomenon in some areas –
“With vision statements in hand, some states simply rename their existing programs. The actual services offered remain the same. Community support services, vocational rehabilitation, or housing support are now described as“Recovery-oriented” services. This renaming process demonstrates a lack of understanding of Recovery: in particular, a failure to acknowledge the necessity for a fundamental shift toward sharing both power and responsibility.”
For others the adoption of Recovery as government policy brought huge benefits. This was, they argued, an unstoppable force and once government agreed to the basic values and principles of the Recovery approach, they would not be able to mandate or spin the results. Organisations such as the National Mental Health Consumers' Self-Help Clearinghouse were established in the USA, as many self-help groups became a part of the psychiatric mainstream. The UK organisation- UKAN (The United Kingdom Advocacy network) - again built by mental health service users for mental health service users - was set up in 1990 to form an independent voice for the mental health survivors community and has remained independent ever since.
Mental health activists did not want the state to stop providing services that could help, but to stop defining what those services should do, to stop controlling how those services were consumed and to stop mandating the outcomes of those interventions.
In 2004 the U.S. Department Of Health And Human Services Substance Abuse and Mental Health Services Administration (SAMHSA) worked with a coalition of 110 different organisations and individuals to establish a new understanding of Recovery. They said there were 10 Key Components to Recovery –
1 Self-Direction - Consumers determine their own path of Recovery
2 Individualized and Person-Centered - Focussed on the person, adapting and changing with them
3 Empowerment - Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life.
4 Holistic - Recovery encompasses an individual’s whole life, including mind, body, spirit, and community
5 Non-Linear - Recovery is not a step-by step process but one based on continual growth,occasional setbacks, and learning from experience.
6 Strengths-Based - Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals.
7 Peer Support - Consumers can encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community
8 Respect - Community, systems, and societal acceptance and appreciation of consumers — including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery.
9 Responsibility - Consumers have a personal responsibility for their own self-care and journeys of recovery.
10 Hope - Recovery provides the essential and motivating message of a better future— that people can and do overcome the barriers and obstacles that confront them.
Building on learning from the USA, our recovery movement grew. Bringing together the Survivors Groups (people who have been recipients of psychiatric interventions often refer to themselves as survivors of those interventions rather than beneficiaries), the service user groups, the carers and professionals, alliances began to grow focussing on Recovery as the natural successor to de-institutionalisation and Care in the Community.
In the UK, while all is still not rosy in the garden, “Recovery” is now the cornerstone of our mental health services. That is why although you may find government targets for mental health service users that talk about access to housing and employment and self help services, you do not find effective treatment being defined by anything as crass and inflexible as the codification of the number of weeks someone spends going to a drug treatment service as progress. You do not find targets for mental health that talk about numbers in “treatment”, though you may find targets that look at availability of treatment and speed of access to treatment for those who want it. This is why also the aim in mental health in theory at least is to only ever coerce people into accepting psychiatric treatment in the most extreme of circumstances. For most mental health practitioners the focus is to get the majority of people out of specialist treatment rather than keep them in it. This does not mean they receive no help at all, but simply that that help should be provided at the lowest threshold possible to enable the person to get on with living their life the way they have chosen.
That Recovery is a positive process is undeniable. That it is a process belonging to the individual is unchallengeable. So when the state accepts that "Recovery" is what it wants to invest in, it must accept different ways of working. The individual consumer will always retain their own definition of Recovery, so they must retain ownership of the outcomes of that process – and the right to define whether it has been successful or not. Although we all know that governments don't like to pay for things they can't measure and it’s really hard to measure things you can’t define, we need to resist the temptation to define ‘Recovery’ itself through a series of measures and outcomes. Because whether these definitions come from groups of services users, or as a result of the consensus of small groups of professionals, they all run the same risk. That is, in seeking to impose a definition of Recovery, you take away the most important thing about it - that it belongs to no one other than the person who experiences it – regardless of who pays the bill.
And while Recovery is clearly a process, it does not seem to be one whose start point or end point can be defined except by the person experiencing it. In the UKDPC definition of Recovery, they say that
"The process of recovery from problematic substance use is characterised by voluntarily sustained control over substance use which maximises health and well being and participation in the rights roles and responsibilities of society."
So, hang on, if I'm a substance user who voluntarily controls my own substance use but who chooses not to have participation in the "rights and roles and responsibilities of society" I can't be in recovery? Who says so? What you going to do? Make voting and working and watching Eastenders mandatory for all ex users? Recovery is what I define it as.
Or say I want to participate in the "three R's" of society but every 6 months or so I have a binge. Am I not in Recovery? Don't I have any say in deciding that?
For me, defining Recovery as a process to be controlled by the individual, but then imposing a whole set of values and outcomes upon what "characterises" that recovery is to miss the point. You have to let me judge what my Recovery is. It is not up to you to normalise me. These are my choices, my hopes and my decisions. You make them yours, then you do exactly what those early mental health activists feared. You create "a cosmetic initiative that maintains the dependence of individuals on the system".
As Dr Steve Coulter said in a response to postings on David Clarks Wired in Blog:
"The major unstated assumption ... is that the clinician's role is to decide what constitutes "recovery," and therefore goals of treatment. This is a form of paternalism, and is intrinsically unethical for any licensed professional. For essentially all other conditions, and certainly any chronic illness, the overarching goal of a clinician is simply to apply his craft to be of help to the sufferer. What constitutes "help" for the sufferer can only be decided by the client, ultimately. One may have a professional target of remission or some other defined outcome, but the choice of destination belongs to the client, not the clinician."
That is not to say that we cannot as professionals, service users and policy makers do what they did in mental health and begin to explore what we need to do to support Recovery, to define the conditions in which opportunities for people to achieve Recovery are optimised, or to find new ways of working which return the power to the service user and rebalance old inequalities. This is how Recovery became the dominant philosophy in the UK mental health field.
I spent some time with an old friend last week who has been working for years as a service manager developing Recovery oriented mental health services. She told me that in the late 90's and early part of the century Recovery rapidly gained credence in mental health. Through the work of user groups and coalitions, the developmental work of NIMHE and other organisations across the field, and through live projects and action research, consensus was built around the Recovery model. She said the biggest challenge she faced was in changing the staff culture. No longer were people there to make decisions for people, to impose their will on people or even to ‘lead by example’. Staff had to find a new role, one that was about first of all helping people define their own ideas of what Recovery would mean – whether that was feeling completely well, or finding something they owned and understood in their own experience of illness (for example having a positive experience of hearing voices). But once that challenge had been dealt with, she said the battle was not over. Key for the success of the Recovery model was the ability of staff to empower service users to access the help and support they needed in the community. Stigma and discrimination among fellow professionals and the public were the biggest barriers here – while the service and the individuals recognised their rights, other public services and the public had problems doing so. This is why the Department of Health and its partners in mental health services are currently undertaking so much work on campaigns and initiatives to reduce stigma and promote the human rights of individuals experiencing problems with mental health
When NIMHE – The National Institute for Mental Health in England (now part of The Modernisation Agency) attempted to pin down a framework for recovery in 2004, they identified that a recovery-oriented system of care will:
- Focus on people rather than services.
- Monitor outcomes rather than performance.
- Emphasise strengths rather than deficits or dysfunction.
- Educate people who provide services, schools, employers, the media and the public to combat stigma.
- Foster collaboration between those who need support and those who support them as an alternative to coercion.
- Through enabling and supporting self-management, promote autonomy and, as a result, decrease the need for people to rely on formal service and professional supports.
Revolutionary stuff indeed - and not just for mental health services, but for the whole community.
Also critical to the NIMHE definition of Recovery is Values Based Practice. Values Based Practice is the other side of the coin from Evidence Based Practice – the current mantra of the drugs field.
Values Based Practice is an approach to working with people that says that the values of society, the service user, the service itself and the practitioner are all critical elements of interventions and they need to be understood and explored.
Values Based Practice accepts that every service user is a unique individual who has a set of values and views about their situation, whose life is impacted by the values and beliefs of their family, friends and community. Implicit within Values Based Practice is an understanding that the imposition of another’s values on an individual is not only unfair and often cruel; it is also hugely counter-productive in terms of Recovery.
For drug services this means that behaviour change – where that is a legitimate service user owned outcome – is a negotiated rather than a coerced process and where coercion is outside the control of the service or practitioner, the impact of that coercion on the individual is acknowledged. I know that there are drug services whose dominant philosophical approach is Values Based, but I also know that they are in the minority and that some are finding it difficult to continue working in such a way within the current system. (Its hard to imagine what a Value Based Practice Guide to Urine Testing and Long Drawn Out Incremental Titration During Induction Followed by Rapid Detox and Discharge as a Successful Completion may look like, but I’m sure there’ll soon be someone working on one somewhere...)
If we are willing to learn some lessons about Recovery from the Mental Health Field there is a rich seam of experience, understanding, conflict, debate and development to be mined there. One of the main things I hope we can pick up is that seeking to define Recovery from the perspective of anything other than an individual is a vain and foolish task, but seeking to better understand how we can make policy, develop services and manage individual interactions as service consumers or service providers is fruitful.
We will need a lighter touch from government, a commitment to user defined outcome measurement (where the user says “this is what success would look like for me", and the government seeks to measure the services success in meeting those aims), and a move away from trying to impose our values and our norms onto each other. We need to allow some freedom for services to develop and evolve models of working that support recovery - and we will need to make some space in our crowded market place for projects genuinely run by and for people who've experienced services and substance use and bring consumer representation up to the highest levels in our existing organisations.
We need a sector wide commitment to Values Based Practice to be made – a shift back to a pragmatic, humanistic, hopeful and above all individualised means of providing interventions that help people change their own lives.
Most importantly we need to begin to challenge the stigma and discrimination that is so central to the social experience of many people who have experienced problems with substance use. It is arguable that much of this stigma is as a result of efforts by the field to frighten the public and those in power into giving us money to protect them from these dangerous junkies. There is likely, with the exception of paedophiles no more vilified group in society than drug users. A recent spate of dog thefts in my area has been universally blamed on 'junkies', as has the torture of a cat, the ram raiding of the local greengrocer, the firebombing of a bus shelter, the uprooting of trees and the closure of the local library following a spate of mysterious vomiting incidents in the foyer (yes I do live in London). We need to challenge these misapprehensions and prejudices. I remember working in community care at the time of the closure of a large mental institution on Merseyside. We experienced endless NIMBYism when we tried to find new flats and jobs for people coming out of long term psychiatric care. “People will never tolerate it,” we were told. “You simply can’t have THEM living near US”. But 20 years on, although NIMBYism still rears its head from time to time, by and large there is a far greater acceptance of the rights of people with mental health problems to live in the community. We can achieve the same for the people who use our services.
We owe it to all those activists within our own field and beyond who have fought for the right to determine their own future and their own Recovery to admit that many of our services, defined as they are by rigid targets and mandated outcomes, provide an environment that is neither healthy nor conducive to Recovery.
So for now I hope we keep on talking. As David Clark said, dialogue and discourse is critical to moving ahead on these issues. We need to remember that some people’s voices are not as powerful as our own. The discourse needs to have real involvement and engagement – simply having a service user or a carer sitting on a group with a load of clinicians or mandarins isn’t going to give you a balanced view. Consensus is not built by small groups meeting in secret. In fact that's more like how you go about building a caucus. Consensus is built from open dialogue, disagreement, good humour, honesty, inclusivity, the ability to accept critique and compromise.
Back to Patricia Deegan and that 1996 conference on Mental Health, right at the moment when the Recovery movement was beginning to see its own impact in mental health policy across the developed world. You can find the original here, but I’ve altered this part of Patricia’s speech so we might see just how far we have to travel in substance use to achieve what has been achieved in Mental Health -
“We are a conspiracy of hope … We are refusing to reduce human beings to illnesses…We are here to witness that people who have problems with substance use are not things, are not objects to be acted upon, are not animals or subhuman life forms. We share in the certainty that people who have problems with substance use are first and above all, human beings. Their lives are precious and are of infinite value.”
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