Last week I spent half a day in a psychiatric hospital. Not as a patient, but a visitor. Although I worked for almost twenty years in various hospital and community settings in diverse roles, trainee nurse, advocacy worker, hearing voices group facilitator, this time I was merely passing through to meet with ex-colleagues for a coffee and a catch up.
I passed by a man in the recreation area, accompanied by two escorting nurses, sat on a bench, talking to himself while they chatted over his head to one another about their social plans for the coming weekend. Later, I came across one of them in the central corridor of the somewhat antiquated and outdated hospital canteen. He was off duty and I took the opportunity to ask what the policy was when escorting patients with regard to them hearing and talking back to their voices. How was it that the nurses sat there and simply talked to each other, almost as if the patient wasn’t even present?
Nursing staff are routinely told by consultants that hearing voices is a symptom of schizophrenia, and best dealt with by being ignored. The hope being that medication will be enough to eventually negate and diminish the activity of the voices and help to facilitate recovery. I remembered as he spoke that this used to be common practice….but still going strong in 2016?
Sadly, recovery rates for schizophrenia are still poor today and expectations for full recovery very low. Patients are told that they have a lifelong illness and will likely have to take prescribed medications for the duration and despite questions being raised about the long term efficacy of psychiatric drugs and the consequences for the brains and bodies of lifelong dependence. There is very little published research on these matters. However, the broken brain chemical theory adherents press on regardless.
Refusal to comply and resistance to this perspective on the part of sufferers is perceived as “lack of insight” and further reinforcing the illness model of thinking. The client or patent is ascertained as unable or unwilling to accept the model or framework being suggested or forced upon him or her and may even require compulsion to take the drugs.
There is another alternative to this predominant point of view however, despite medical model conditioning. Where did this all start?
I was inspired to get involved and become proactive in mental health recovery work after attending a talk in 1991 and given by a radicalised Scot, resident at that time in England, Ron Coleman, a man who was diagnosed with schizophrenia. Ron had spent almost a decade trapped inside mental health institutions after suffering something of a breakdown in his life. Events precipitated by the death of his partner and buried memories of childhood abuse at the hands of a priest.
He spoke with passion and fire, calling on people to reclaim their identities and shake off the doom and gloom of being told they would never likely work, have relationships, be happy and flourish. He spoke of class bias and the politics of psychiatry, his own experiences at the hands of the system and how he gave up on life until someone said that they believed his voices were real. Shortly after, Ron attended a group for voice hearers and before too long was facilitating it. Now, twenty years later, he travels the world providing inspirational recovery focused training with his partne, Karen at “Working to Recovery”.
In 1991 I was working in Coventry, England for a national mental health charity and supporting, as best I could, several individuals in supported housing who were struggling to live with cynical and negative voices. My question to my supervisors “what more can i do to help on days that are difficult for patients?” was answered with “suggest board games or walks”. Little did I realise, on one summer afternoon, that the man I was suggesting Scrabble to had endured a decade of support staff inviting him to play the game.
He verbally exploded, burst into tears and said : “I just need someone to talk with about my voices. They’re driving me mad.” I rushed to the phone and called the office for advice. What should I do? How could I help? The response? I was to do nothing. I wasn’t qualified to do anything. He (the client) was getting unwell and likely just needed more medication and an urgent meeting with the medical consultant was scheduled.
At the emergency appointment a few days later, I stood in awed silence as he told the consultant that his voices were fine, the medication was helpful and could he go now please? Outside I gently challenged him and he told me that for him at least, the adverse side effects were so awful that he could not bear to have an increase. He’d rather lie and put up with the hellish voices. I was at a loss. I respected his reasoning and decision and then researched everything i could about schizophrenia, including psychiatric text books, drug company research and other perspectives on hearing voices.
I asked colleagues and other friends in receipt of mental health services if people “under-reported” their symptoms and experiences in order to avoid medication increases. “Oh yes, we all do it.” I thought about the consequences of this. Consultants writing up false successes, patients lying to their medical support teams, and realised that there must be something better, a middle way perhaps, but what?
I thought back to my meeting with Ron, went to meet him and was inspired to set up my first hearing voices support group in Coventry, England. He was tremendously supportive. I was guided also by the pioneering work of Professor Marius Romme at Maastricht University, Holland, who had learned a great deal about peoples’ relationships with their voice hearing experiences by listening to his clients and researching more deeply the content and meaning of their heard experiences rather than ignoring it. It turned out that when individuals diagnosed with schizophrenia were afraid of their voices and what the voices said, this had a deep impact on their quality of life. It also limited their beliefs that there was anything they could do about it apart from take medication. We now know that this does not need to be the case. There are various strategies and coping tools that can make a difference. People can and do change the way that they relate to their voices. The “Open Dialogue” techniques pioneered in Scandinavia show this possibility also.
Professor Romme had also been surprised to discover a large body of voice hearers in the Dutch general population, some who heard positive voices but, more importantly, a significant number who had negative voices, but who had learned ways to cope, consequently never needing access to mental health support services. A conference was held in 1987 and individuals hearing negative voices got to meet with people who could cope well. Health workers got to speak with and listen to individuals who heard positive voices. The seeds of the Hearing Voices Movement had been planted.
The work of this movement is still making headway in giving individuals access to tools and strategies that assist in better managing difficult voices and it’s based on listening to those who hear voices but manage to cope well with the same experiences. We gave a lot of coping booklets away in the early 1990s and started many support groups in the UK and around the world, that are still evolving and growing in number, popularity and influence.
Helping people to reclaim lost autonomy and power is very liberating, for health and support workers also. Giving people a safe space to explore their experiences, to talk in a non judgmental atmosphere and to share with each other what helps or hinders their progress in living with difficult voices is very satisfying to be a witness to. I have seen many attendees at groups that I ran make swift progress and grow in confidence. Medication may have its uses but we need to open up the tool box of other possible responses in order to increase the likelihood of a better quality of life. Higher rates of recovery ARE possible if we are prepared to allow it to happen.
And this is just one reason I began to build my own website. I wanted to create an inclusive, open and accessible space for people to have access to interesting and inspiring ideas, lectures and talks on dealing positively with hearing voices,
The schizophrenia label is being seen by many now as a “dustbin diagnosis” and people who receive it are not expected to do anything with their lives. Maintained on neuroleptic medications, battling the adverse side effects, their self esteem and self perception is damaged as they are told they will be ill for the duration of their lived experience. A life time on state benefits awaits them and years of costly service dependency. Their future dreams, if they had any, likely dashed. But it doesn’t’ have to be this way. We can do more. We must do more.
And it is happening already, albeit slowly and quietly. So, let´s make some noise about the Hearing Voices Movement and raise our actual voices to root for change!
Advocate for Voice Hearers
Recommended reading: Living with Voices, 50 stories of Recovery. Marius Romme et al
BUY – www.workingtorecovery.co.uk/products/recommended-books/living-with-voices-50-stories-of-recovery.aspx
The Voice Inside. Paul Baker –
BUY – www.workingtorecovery.co.uk/products/our-own-books/the-voice-inside.aspx
Recommended website: http://workingtorecovery.co.uk
Recommended Website: http://hearingvoicescymru.org
Recommended Website: http://www.voicecollective.co.uk ( by and for young people/ parents)