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Karen Steadman
Senior Researcher
Karen Steadman

Why I’m standing up for schizophrenia - Schizophrenia Awareness week 11-18th November

Authors: Karen Steadman

11 November 2013

When I started as a researcher at The Work Foundation a year ago, the first project I was involved in focussed on schizophrenia and employment in the UK. I have to admit I knew very little about schizophrenia at the time – aside from it being a severe mental health condition, and that those affected by schizophrenia were often portrayed very negatively in the media. A year later, with the UK research and report complete and similar projects in Germany and Spain underway, I certainly know a lot more about the condition and the impact it has on people’s lives - as well as how much that often differs from the public perception. Indeed, it quickly became apparent that the symptoms experienced as part of having schizophrenia were sometimes less of a barrier to recovery for people than the stigma associated with the condition. In our research we found this stigma to be one of the chief reasons for the exceptionally low levels of employment seen among people with lived experience of schizophrenia – estimated to be around 8% in the UK. The low levels seen here are reflected across the world, and have remained despite the evidence that many people with schizophrenia say they want to work, are able to work, and believe working is fundamentally important for their own recovery.

In this last year I have been involved in a number of activities aimed at increasing awareness and understanding of issues around schizophrenia, and improving the situation for those who are affected by the condition. This work has involved clinicians, interest groups, patients, charities, industry, academics and MPs – both in the UK and Europe. In the UK last year, the Schizophrenia Commission led the way in pushing up the agenda the inadequacies of current care provision for people with schizophrenia, with their report 'The Abandoned Illness' also highlighting the poor understanding of the condition. The Work Foundation’s report has also had influence in driving action in this area – our call to improve employment rates for people with schizophrenia to 25% within a decade (‘25 in 10’) has been taken up by a number of stakeholders – though, depending on who you speak to, this is seen as both an ambitious and unambitious target!

The barriers to employment experienced by people with schizophrenia are driven by multiple factors – poor physical health care provision, lack of access to evidenced-based employment support services, a lack of support for employers, and low expectations from health care providers, to highlight just a few. Much of this is driven by the widespread low expectations of employment as a realistic outcome for somebody with a diagnosis of schizophrenia. Indeed, it is stigma towards schizophrenia which undercuts all of these barriers, feeding misconceptions of what a diagnosis of schizophrenia means for an individual and how the condition affects them. It is this stigma, and the self-stigma it manifests for those with the diagnosis, which often creates a seemingly impenetrable wall between them and their recovery.

There is an incredibly long way to go to effectively address these barriers, but what I have found heartening is just how many people across the world share these concerns and want to deliver change. Just last week I listened to passionate  MEPs talking to advocates and industry alike of their concerns around the negative impact of the label of schizophrenia and the associations that often come with it. Again, this is an issue debated across the world – in South Korea last year, the Korean Neuropsychiatric Association changed the original Korean term for schizophrenia, jungshinbunyeolbyung (mind-split disorder), to johyeonbyung (attunement disorder), to dispel the stigma associated with the name, and to better reflect current scientific thinking about the nature of the condition. The term Psychosis Susceptibility Syndrome has also been suggested by the Dutch Association of and for People with a Psychotic Vulnerability (Anoiksis), reflecting the latency of the condition and the range of symptoms associated with it.

The debate about changing the terminology has been around for a long time, and is unlikely to be resolved anytime soon. Whether a change will happen and what impact this might have on stigma and on recovery objectives can’t be foreseen. What we can already see however are small steps towards changes in attitudes about schizophrenia - occurring locally, nationally and internationally. I am confident that the good work that I have seen over the past year will increase the understanding of both schizophrenia the condition, and of the needs of the people that have experienced it. I hope this will continue into the future, and I look forward to being a part of it.