Last week we heard from Sue Irwin as she described the discovery of herself as ‘head gardener’ for the seeds of her inner Warrior.
In this very evocative and intelligent follow – up article, Sue describes her journey back into mental health services ‘on the other side of the fence’, and why she made the decision to leave, this time of her own volition to honour her personal values…
Why I Chose to Leave Mainstream Psychiatric Services
A Peer Supporter’s Personal Perspective
If we plant a seed in a desert and it fails to grow, do we ask, what is wrong with the seed?
No. We must look at the environment around the seed and ask, what must change in this environment such that the seed can grow? (Deegan, 1996)
Introduction
I left my post as a paid Peer Support Worker (PSW) on an acute in-patient ward within mainstream mental health services in the UK; I left because I had reached a point where I felt I could no longer work in an environment which compromised my own values, and the values of peer support. It is now time to reflect upon why I made that decision, based upon my own experiences. Although I don’t have years of working in mental health services nor a paper certificate hanging in a frame on my wall, I do have almost two decades of experience of using mental health services, of spending many hours speaking with and listening to my peers, and I have the scars on my body and in my mind which are qualifications enough. My hope is that this article will encourage an informed and constructive debate around the very real problems that mental health services are facing today, and although it sometimes feels a frightening and lonely path to follow by questioning the status quo, my conscience will not allow me to ignore what I see as madness within modern day psychiatry.
Where did it all Begin?
My own personal journey of healing has been shaped by the damaging effects of childhood abuse and trauma and the subsequent emotional distress that I experienced over many years. The long-term effects began to manifest themselves in a truly distressing way after the birth of my third child and what to others might have seemed like an ordinary internal procedure during labour, was the trigger for deeply buried memories and feelings from this abuse. Shortly after the birth, I entered the mysterious world of psychiatry and its treatment of the mind.
When I first came into contact with mental health services, I felt vulnerable, I felt like that child from years before who was confused and unable to assert herself, who would agree to anything just to please. Essentially I was terrified and screaming out to be loved and cared for. I believed in and put my trust in professionals to help me. At the time I did not realise that the imbalance of power that exists between doctor and patient mirrored the powerless situation I found myself in as a child.
My interactions with clinicians would often leave me feeling guilty and ashamed. On one occasion whilst discussing my abuse of alcohol, I was told that if I loved my children I would stop drinking immediately. After an attempt on my life whilst an in-patient, a senior nurse said to me “did you not think of the staff”. The diagnosis of a personality disorder left me feeling that not only was I mad, but I was also bad. The fact that clinicians told me I had to be compliant with a medication regime, left me feeling powerless, that I had no choice in the matter. I was labeled “demanding”, an “attention-seeker” and told my behaviour was inappropriate, but from my perspective this behaviour seemed understandable given what had happened to me.
On the occasions when I was admitted to an acute ward, I felt frightened and bereft that I was separated from the very people I loved the most.
The catalyst for my healing began when I was taken off all psychiatric medication (albeit in a rather brutal manner). Fortunately, I was able to find the courage and access support outside of mainstream mental health services and it is somewhat ironic that this process really began to flourish when I finally felt confident enough to liberate myself from the community mental health team that had been treating me for almost two decades. It has been important that I’ve been able to choose the path that I wished to follow and I have been able to make what I see as informed decisions by researching and educating myself. I have managed to move away from the role of dependent “revolving door patient” by taking risks, by having the support of trusted friends and family and by forming a safe, trusting, equal and therapeutic relationship with a person-centred counsellor who has not been risk averse.
So how is it that my encounters with statutory mental health services hindered my ability to heal and why did I feel so disempowered, hopeless and re-traumatised, and behave in such a passive way?
The Dilemmas of being a Peer Supporter
I debated long and hard whether to apply for and become a paid PSW within my local National Health Service (NHS) Trust. After 18 years of using mental health services, I asked myself many times whether I would be able to, or even whether my conscience would allow me to, work within an existing system of psychiatric care that had essentially left me feeling disempowered, utterly hopeless, re-traumatised, passive beyond recognition and a great deal “sicker” than when I first entered the system. If I worked within it, would I feel that I was condoning a system that had essentially harmed me? Would recovery practices be embedded sufficiently into the organisation for me to support people in a recovery focused way? Would I be able to or need to challenge existing practices? As a person labeled with a number of psychiatric diagnoses, would I be taken seriously and seen as a valuable and credible member of the team? How would I cope with and feel about returning to paid work after 20 years out of the employment market?
My decision to go ahead and apply was driven by a burning desire to prevent what happened to me, happening to others – to make a difference and support people in a different way. This sentiment has been the driving force behind peer support since the 1970s when peer support was established “in reaction to negative experiences of mainstream mental health treatment and dissatisfaction with the limits of the mental patient role” (Penney & Prescott, 2016). It was also with the hope that I might participate in the improvement of current mental health service delivery as an “agent of change”. Chamberlain (1978) states that grassroots peer support is characterised by equitable relationships among people with shared experience, voluntariness, choices, the belief that giving help is also self-healing, empowerment, positive risk taking, self-awareness and building a sense of community. Bringing these relationships into mental health services was a change I wanted to be a part of, a change I felt from my own experiences was sorely needed.
Essentially I felt my aim as a PSW on the acute ward was to create a trusting, mutual and equal partnership with someone, one that felt safe for both of us. I was not there as an expert, nor to tell people what they needed to do or what they should do. For me this partnership meant that perhaps we could learn from each other and grow together. My own experiences, I felt, helped me to understand other people’s perspectives and have the capacity for empathy and compassion towards others. I would sit for many hours listening to people’s stories, to what had happened to them and what had been done to them. At times these stories would be intensely painful and distressing and it was challenging for me not to try to fix anything or find an immediate solution. But from my own personal experiences I felt that sometimes all that was needed was for someone to simply “be” with that person in that moment of acute distress, for someone to perhaps place a comforting hand on a shoulder or take hold of a hand and just say “I am here with you and you are safe”.
Despite the passion I described above, within me, why then did I choose to leave and work outside of statutory mental health services after such a short time? I have four good reasons…
- Because a Tsunami is Approaching
The worrying direction that psychiatry is still taking is summed up for me by a statement from a former president of the American Psychiatric Association. It reads: “We must examine the fact that as a profession, we have allowed the biopsychosocial model to become the bio-bio-bio model” (Sharfstein, 2005, p.3.)
During my time as a peer support worker, I witnessed a system that was over stretched and jaded by constant funding cuts. I witnessed compassionate staff with too little time to spend building relationships, and I witnessed frustrated and distressed people, who entered with hope that somebody would listen and left with so much less than they deserved. My belief that mental health services appear to be in crisis is shared by many. In its response to the latest publication of the psychiatric bible, DSM-5, a 2013 press release from Mental Health Europe opened with the statement “Western psychiatry is in crisis”.
The government’s independent Mental Health Taskforce report published in February 2016 painted a devastating picture of England’s mental health services, revealing that the number of people taking their own lives is soaring, that three-quarters of those with “psychiatric conditions” are not being helped, and that sick children are being sent “almost anywhere in the country” for treatment. A study by Viola & Moncrieff (2015/2016) found that the number of long-term (over 5 years) claimants of benefits with “mental disorders” increased by 87% from 2000 to 2011. Two-thirds of “mental disorder” claimants were classified as having a depressive or anxiety disorder. This rising trend also corresponds to massive increases in the use of all types of drugs for “mental disorders”. There are of course other important social factors which may contribute to these figures and obtaining paid employment is not necessarily a sign of someone’s “recovery”, but my question is, if these medical interventions and treatments are as effective as we are led to believe, why then is there this rising trend in disability claims? Why then, whilst working on the acute ward, did I encounter so many people who had been using services for so many years?
It was difficult for me to work within a system that held onto the belief that human distress and suffering is mainly due to biological deficiencies (chemical imbalances or faulty genes). I know through my own experience, and through reading, that this belief is not reliable or even valid (Moncrieff, 2008, 2013). Is it possible that this belief is creating more distress? I also have to question whether the assertion that “mental distress is an illness like any other” is actually as helpful as it sounds. A service model for mental health based on the traditional (but unfounded) medical assumption that what we require most to treat illness is hospital beds, doctors and nurses (Morrison, 2014/2015) is possibly one of the causes for the crisis in mental health services today.
I am constantly hearing demands for mental health services to be better resourced, for more money to be put into the system and to a certain degree I agree that services or support needs to be better resourced. I also believe that there needs to be a paradigm shift in the way we understand and support people in distress with equal emphasis on the social, psychological and cultural causes. To me it makes no sense to simply pump more money into an existing medical model of care that is not as effective in helping people to heal as is sometimes made out.
During my time as a peer support worker I began to see that the current way of providing mental health support was underfunded and unsustainable. But I also saw that more funding is not what is needed to change the culture or to strengthen the values of recovery within mental health services. It was a sad realisation that there is so much more that needs to change than just funding. Funding wouldn’t have helped staff to feel more comfortable sharing their own lived experience, it wouldn’t have changed the risk assessment procedures that straight-jacket people, it wouldn’t have changed the easy way that medication was used so liberally, nor reduce the stranglehold that pharmaceutical companies have over the psychiatric system. It wouldn’t have changed the process of admitting people to hospital against their will under the Mental Health Act without fair and due representation, as is afforded to all other citizens. And as a peer support worker, to work within this system, to be implicitly endorsing this culture was ultimately too much of a compromise.
- Because the Doctor doesn’t Know Best
The assumption that “doctor knows best” still permeates society as a whole today and people are encouraged to seek medical advice and do so for many of their difficulties. People trust and believe in the expertise of clinicians, and why shouldn’t they? After all the medical profession has science and training on its side. As a peer support worker, I saw how this assumption can lead to an imbalance of power between patient and doctor and tends to overlook the valuable expertise of people living with distress and their families. It can and often does lead to the person taking on a passive role in their treatment as well as feeling disempowered. I wonder if this is even more true in mental health services, where people often feel overwhelmed and vulnerable when they come into contact with professionals, where many (like myself) already feeling powerless and helpless, find it difficult to withstand or challenge the powerful messages of the medical world. People thus feel forced to enter into a medical system of care and their individual experiences are grouped into a one size fits all set of psychiatric diagnoses. The dominant evidence-based treatments on offer tend to be purely medical and opportunities to access the many other alternatives that can help people to make better sense of their experiences and assist and support them to heal seem few and far between and are often the ones which are most underfunded.
Gary Sidley’s (2015) comments describe this phenomenon when discussing a person reporting or displaying experiences such as voice hearing or expressing beliefs that seem bizarre or illogical:
In practice, the person struggling with unusual experiences is forced to choose between either accepting the dominant psychiatric view that they have a chemical imbalance in their brains, or rejecting this conclusion and risking the subsequent coercion into treatment or loss of support.
I am not wishing to minimise or underestimate in any way the fact that people’s experiences of emotional distress can be, and often are, intensely painful and overwhelming (I can certainly bear witness to that), and I can also affirm that the process of healing can be a hugely challenging and agonising journey. However, I believe that the way western psychiatry explains people’s experiences of distress in biological terms focusing on the reduction of symptoms and concentrating on what is ‘wrong’ with the person rather than what matters and what is strong, seems to ignore the social context of these difficulties thereby eliminating the important need to address the significant and damaging psychological effects of traumatic life events. It is my understanding that, as humans, we are unique individuals, our responses to life events be they traumatic or otherwise shape the way we perceive the world and can manifest themselves in many different ways. With regard to childhood abuse in particular, these responses can often be seen as “unusual” “abnormal” or “inappropriate” depending on the culture in which we live and western societies can struggle to understand and embrace these responses as understandable and meaningful.
In the 12 months I worked on an acute ward I came across people who were incredibly angry, who felt that they were being forced to be compliant with medication regimes which they felt were harming them. They were told that the fact that they were questioning medical advice was a sign that they lacked insight into their illness and therefore this proved that they were mentally ill. On one occasion I was asked by a clinician if I felt a person I was supporting lacked insight into their illness. I responded by saying that in my opinion the person’s reasoning for questioning the use of medication was quite understandable and this didn’t to me mean they were mentally ill. The clinician did not ask me any further questions.
A particularly difficult situation arose for me, when it was suggested during a weekly review meeting with a person who had been on the ward for a number of weeks whether electroconvulsive therapy (ECT) might help. The person was able to say that they did not wish to have this treatment. Later the following week, and outside of the review, the person’s keyworker said to me that they would be pushing for ECT at the next review.
- Because the System Crushes Hope
Hope is one of the central themes which facilitates “recovery” and hopelessness is an important factor in suicidal behaviour so it would seem imperative that promoting and encouraging hope would be part and parcel of a modern mental health service. There have been a number of documents and articles published emphasising the need for mental health services to adopt the principles of “recovery” (see Department of Health, 2004, 2006, 2009; Repper and Perkins, 2012) and guidance reports for services to use when implementing recovery-orientated practices (Shepherd et al., 2010; Repper and Perkins 2013).
Why then do services still seem to be extinguishing hope for many of those that use them?
From a personal perspective my hopelessness grew from the message from professionals that I had an illness like any other and that my ‘symptoms’ were the result of a chemical imbalance in my brain which required drugs to rectify. I began to believe that I had no control over my thoughts, feelings and emotions and slowly became dependent on services. I was told I should be compliant with a medication regime and that I would more than likely have to remain under psychiatric care for the rest of my life. I felt helpless and unable to challenge this and utterly despondent that continuing to take medication would mean I would have to endure the unhelpful side-effects – severe weight gain, blunted emotions, lack of motivation and energy, apathy, a feeling of complete indifference as well as what Breggin (2008) describes as medication spellbinding.
Whilst working on an acute ward, I came across a number of people who told me that they had a “severe and enduring mental illness, an illness like any other” and that as they felt they had no control over this illness, they had to rely on doctors and nurses to treat them and be compliant with medication that was being prescribed. Many of these people felt hopeless for a meaningful and fulfilling future life and felt resigned to living a life without hope, which was incredibly hard for them. Some would look at me in confusion when I asked them about their hopes, their dreams or their aspirations.
I could not bring myself to continue working within a modern psychiatric system, which emphasises the biological causes of human distress, almost completely disregards the significant psychological effects of traumatic life events and stigmatises people in distress by labelling them with what in my opinion are often meaningless to the individual and judgmental psychiatric diagnoses. I also wanted to be true to myself and felt that to be an authentic peer supporter, and maintain my integrity, I needed to remove myself from a clinical setting.
- Because theTraumatised are being Re-traumatised
In her powerful TED talk Eleanor Longdon speaks of the need for psychiatry to ask not what is wrong with you, but rather, what has happened to you?
There is overwhelming evidence to suggest that trauma or adverse events in a person’s life are a common cause of mental health problems. Trauma can take many forms, ranging from childhood abuse (physical, emotional &/or sexual), bullying, rape and violence in adulthood, war trauma and loss. Those who have endured the most severe abuse histories eventually become psychiatric patients and many or even most psychiatric patients are survivors of childhood abuse (Herman, 1992). A 2008 review of 59 studies of the most severely disturbed psychiatric patients found that 64% of the women and 55% of the men had been physically or sexually abused as children (Read et al., 2008).
The damaging long-term effects of child abuse often include feelings of guilt, shame, self-blame and anger. It is also common for people to feel powerless, helpless, and afraid and find it difficult to trust both themselves and others.
As a person who experienced abuse in childhood, I spent 18 years under the care of statutory mental health services and as the years of being a mental health patient passed, I increasingly began to feel the same feelings of guilt, shame, blame, powerlessness, helplessness, fear and worthlessness being replicated the longer I remained within the system. My voice as a child had already been silenced and my voice as a patient was silenced once again.
Time to Change the Environment
It is my opinion that until there is a revolution in the way western societies understand and support people experiencing emotional distress people will continue to suffer. As I mentioned earlier, almost two decades as a “psychiatric patient” had had a detrimental effect on my mental and physical wellbeing. I have struggled to make sense of how this happened and how I myself allowed it to happen. I hear many professionals and reputable organisations within the current psychiatric system vehemently state that massive advances have been made in the discipline of psychiatry over the last 50 years, that treatments have improved, are safer and are more effective, that society’s awareness of emotional distress is improving and that stigma and discrimination are becoming less of a problem. I am not convinced.
How then, can the environment be changed so that the way we respond to those experiencing emotional distress is transformed and “recovery” becomes a reality?
I have spent many hours reflecting on this question, and have struggled to come up with a response that wouldn’t involve a further 4000 words. It feels a daunting task and I don’t believe that there is a simple or quick solution, after all our experiences are many and varied, and the causes of people’s distress can be complex.
The term “recovery” is being used more and more within the realms of mental health services as a means of describing a different approach to understanding distress. Whilst “recovery” has been a very personal journey for me, the principle themes which appear to underpin the process are those of having hope, of being and feeling in control and of having opportunities to live a meaningful and fulfilling life (Repper, 2011). There are some who say that the concept has been hijacked by government and services as a way to place more responsibility (if not blame) onto individuals. Despite this, it is an idea that I welcome and personally find refreshing, mainly because it offers up the ideas of hope and optimism and that healing from distress (even in the severest of instances) can be and often is possible. I think it is important to point out, that “recovery” can and does happen with the support of clinicians, but it also can and does happen without the intervention of clinicians. Mental health professionals often do not hold the key to healing. People need to have the choice as to who they want to be involved, whether they want to have contact with mainstream services, and, if not, to be helped to access alternative support and opportunities.
Feeling in control is one of the key elements that facilitates “recovery” and a culture of shared decision-making would help people to feel empowered. Access to a wide range of support including talking therapies, medication, peer support and self-help guidance is vital, as is honest and balanced information about the risks and benefits of that support.
Whilst I can see some areas within mainstream services where recovery focused practices are taking shape – Early Intervention services, Recovery Colleges and the introduction of Open Dialogue teams for example – further development and funding for peer led community organisations would enable people to choose which type of support they wish to access.
The provision of affordable and accessible opportunities enabling people to develop past or new roles would facilitate “recovery” and help people to feel part of their local communities.
Rather than simply using the standard and current method of diagnosing distress using the DSM-5, a variety of frameworks to help people make better sense of their experiences would reduce the stigmatising effect that these often meaningless labels can have on a person. This would also recognise the psychological impact of trauma, as well as reflect people’s cultural, social and spiritual perspectives.
Changing the language that services use to describe people’s distress from one of “illness” to one of “recovery” could help to encourage active participation in the healing process and inspire the belief that “recovery” is possible.
Positive risk taking and a reduction in the time consuming and often futile risk assessments that professionals are required to complete would encourage people to take on a more proactive role. Unfortunately, whilst the culture of blame that exists in society today, and the fear of liability that dominates services remain intact, this move might not be an easy task.
Educating the workforce using a trauma-informed model of care would help staff to appreciate the re-traumatising effect that current service provision can have on survivors of trauma and help them to ensure that maintaining a sense of safety for the individual, promoting empowerment and facilitating reconnection is at the forefront of the work that they do.
Change within mental health services will also require change in the political and social domains. Government must reflect on the way its policies affect people’s wellbeing and we all as a society must reflect on the way we view human distress. This I believe will require us to show humility, understanding, awareness and compassion for each other’s struggles and value and respect difference, creativity and individuality.
My Continuing Journey – a footnote
There has been a recurring theme that has increasingly begun to enter into my thinking over recent years, and it is one that I have grappled with for a long time, but one which I am learning now to embrace. As I do, I notice how my world has begun to take on new meaning and how my relationships with others are changing and blossoming. It is a theme that I have heard spoken many times, in many places, and by many people, but it has been one which I have found hard to accept or even recognise.
Showing myself compassion is slowly becoming part of my healing process and I am beginning to believe that I am “good enough”. I cannot deny that I have found it difficult to rejoice in and embrace myself as a unique human being, who has qualities and skills and who makes mistakes, who accepts that distress is an understandable response to some of life’s challenges, who has emotions that are meaningful and who is also prepared to embrace and rejoice in the uniqueness of others.
I am still working hard to try to repair the damaging effects of past abuse and trauma and am delving deep into the very core of my being, my innermost soul. It is an incredibly painful journey and is by no means easy, but it is possible and most definitely worthwhile.
My passion for peer support continues and I am currently helping to create a community based service in my local area. My dream of joining the United Nations as an ambassador for Peer Support remains intact although not yet a reality.
References
Breggin, P. R. (2008). Medication Madness: A Psychiatrist Exposes the Dangers of Mood-Altering Medications, St. Martin’s Press, New York, NY.
Chamberlain, J. (1978). On Our Own: patient-controlled alternatives to the mental health system, Haworth Press, New York, NY.
Deegan, P. (1996). Recovery and the Conspiracy of Hope, A Keynote Address at the Sixth Annual Mental Health Services Conference of Australia and New Zealand, Brisbane, 16 September.
Department of Health. (2004), Essential Shared Capabilities: A framework for the whole of the mental health workforce, HMSO, London.
Department of Health (2006), From Values to Action: The Chief Nursing Officer’s review of mental health nursing, HMSO, London.
Department of Health (DH). (2009). New Horizons: A shared vision for mental health, Mental Health Division, Department of Health, London.
Herman, J. (1992), Trauma and Recovery: The Aftermath of Violence – From Domestic Abuse to Political Terror, Basic Books, New York, NY.
Mental Health Europe. (2013), “More Harm than Good: DSM 5 and exclusively biological psychiatry must be completely rethought”, available at: http://dxrevisionwatch.files.wordpress.com/2013/05/more-harm-than-good-dsm-5-and-exclusively-biological-psychiatry-must-be-completely-rethought-1.pdf
(accessed 7 January 2016).
Moncrieff, J. (2008), The Myth of the Chemical Cure: A Critique of Psychiatric Drug Treatment, Palgrave Macmillan, Basingstoke.
Moncrieff, J. (2013), The Bitterest Pills: The Troubling Story of Antipsychotic Drugs, Palgrave Macmillan, Basingstoke.
Morrison, T. (2014/2015), “Foreword”, in Sidley, G. (2015), Tales from the Madhouse – An Insider Critique of Psychiatric Services, PCCS Books, Monmouth, p. ix.
Penney, D. and Prescott, L. (2016), “The co-optation of survivor knowledge: the danger of substituted values and voice”. In Russo, J. and Sweeney, A. (Eds), Searching for a Rose Garden: Challenging Psychiatry, Fostering Mad Studies, PCCS Books, Monmouth, pp. 35-45.
Read, J., Fink, P., Rudegeair, T., Felitti, V. and Whitfield, C. (2008), “Child maltreatment and psychosis: A return to a genuinely integrated bio-psycho-social model”, Clinical Schizophrenia and Related Psychoses, Vol. 2 No. 3, pp. 235-54.
Repper, J. (2011). “A Rights Based Approach to Recovery and Social Inclusion”, presentation at the Annual INTAR Conference, Toronto, 3 November.
Repper, J. and Perkins, R. (2012), “Recovery: A journey of discovery for individuals and services”. In Phillips, P., Sandford, T., and Johnston, C. (Eds), Working in Mental Health: Practice and Policy in a Changing Environment, Routledge, Oxford, pp. 71-80.
Repper, J. and Perkins, R. (2013), ”The Team Recovery Implementation Plan: a framework for creating recovery-focused services”, ImROC Briefing Paper 5, Centre for Mental Health, London.
Sharfstein, S.S. (2005). Big Pharma and American psychiatry: The good, the bad, and the ugly. Psychiatric News, 19 August, p. 3.
Shepherd, G., Boardman, J. and Burns, M. (2010), “Implementing Recovery: A methodology for organisational change”, Sainsbury Centre for Mental Health, London.
Sidley, G. (2015), Tales from the Madhouse: An insider critique of psychiatric services, PCCS Books, Monmouth.
Viola, S. & Moncrieff, J. (2015/2016), “Claims for sickness and disability benefits owing to mental disorders in the UK: trends from 1995 to 2014”. British Journal of Psychiatry Open, Vol. 2, pp. 18-24, doi: 10.1192/bjpo.bp115.002246.
Further Reading
Longdon, E. (2013), “The Voices in my Head”, TED Talks: TED.com, Long Beach, CA.
The Mental Health Taskforce (2016), “The Five Year Forward view for Mental Health”, available at: www.england.nhs.uk/mentalhealth/taskforce
Corresponding Author
Sue Irwin
Independent Peer Support Facilitator
Worcester, UK.
Email: sue1962@glenirwin.plus.com
This article provides a very poignant example of the shift to heart intelligence over a purely cognitive- led perspective; it is only through the shattering of ‘professional’ facades that this can be accessed… Sue demonstrates ‘feminine rising’; not through the fact that she is a woman, but the fact that she allows the wisdom of her heart and intuition to lead the way; what a wonderful example of a Peer Warrior she is – we’d vote for you as UN Ambassador Sue! ❤
Reframing Mental distress as a potential catalyst for positive change 