Mind Moves: We regularly hear experts having their say about the merits and shortcomings of our mental health service. But we don't often get the chance to listen to service users articulate their experience of our services, and what they would like to see changed.
That was the focus of a conference in Cork recently where 500 service users gathered to tell the experts what they needed of us. The conference, "Dignity, a first step to recovery", was organised by the Cork Advocacy Network (CAN) and hosted in UCC by the Department of Applied Social Studies, and featured a panel of speakers who spoke from their unique expertise as "survivors" of mental health services.
While one of the conference organisers acknowledged the work of some healthcare practitioners, the majority of those who spoke from the floor relayed experiences of care that were far from satisfactory. It took a lot of courage for them to articulate their experiences since they were being critical of the very services they turn to for help in times of tremendous personal vulnerability. What they described was disturbing and pointed to a need not merely for reform, but for a revolution, a "paradigm shift" as one speaker said, in how we engage with people who are mentally ill.
Among their negative experiences were being forced to undergo treatments such as ECT that were intrusive and frightening; the over-reliance on medications which left them dazed and confused; the lack of any explanation of why these treatments were being offered; the inadequate provision of any other social or psychological interventions, such as talk therapies; being left wandering around hospital corridors in a bewildered, even perplexed, state, often inadequately clothed; being seen only as embodiments of some particular diagnosis, and not as people who were highly self-aware and rational in some part of their being; and being talked at, rather than listened to.
Many participants felt they had been silenced by a system that encouraged compliance and a learned helplessness. This conference made it clear the days of silent acquiescence are over. Participants were asking for a mental health service offering safe and dignified environments where people can genuinely recover; where access to a range of creative treatment interventions is possible; and where their participation as people is encouraged at every level of their care.
In the world of mental healthcare, the "we know best" attitude has always dominated when it comes to considering what is good for patients. At times there may be some accuracy in this - medication and restraint may actually be what an individual needs to prevent them doing harm to themselves. But to extend this attitude to the majority of those in our care is to do violence to their dignity and to their capacity for self-
determination and meaningful collaboration in treatment planning.
It was interesting to see how few health professionals were present in the audience - I counted less than a handful of psychiatrists and psychologists. One of them was quite upset by what seemed to him an excessive focus on the darker side of our services. He pointed to the danger of deepening the rift between users and providers. He may have a point. But I wonder if the issue is not more to do with our failure to recognise that people do remember how they've been treated, and this conference for many may have been their first opportunity to talk publicly about their experience.
As someone who has been involved in the delivery of mental healthcare for many years - and one who claims no immunity from the criticisms raised at this conference - I found it encouraging to hear users speak out about their desire to take a more responsible role in their care, and to hear them assert their very fundamental human right to be treated at all times respectfully and with dignity.
We as service providers haven't been able to deliver a mental healthcare system that addresses the real needs of people. This has partly been a problem of limited resources, and that needs to be urgently addressed, but it is also because we haven't listened to our patients in a way that enables them to feel they've been heard.
The CAN conference pointed to a model of care where the practical needs of the person with mental health problems would be central to care planning; and where meaningful user involvement at every stage of service planning and delivery could be the way to provide a service that, as one user put it, had mental health as its goal, rather than mental illness as its obsession.
I walked away sobered, but challenged, by the day's debate. As one speaker concluded, "There has never been a better time to be mentally distressed." I did not escape criticism on the day but neither did any other professional carer who was there. It would be so easy to write off the anger and hurt of service users as unreasonable. So easy to reassure ourselves that their hurt was further evidence of chemical imbalance, projection or deluded thought processes. But to be in the company of so many articulate, appropriate and obviously compassionate people, was a humbling experience.
To describe them as anything other than people with something very important to say would be to fall into a cosy kind of self-deception that is as destructive as it is deluded.
Dr Tony Bates is principal psychologist at St James's Hospital, Dublin.
