An open letter launched on World Mental Health Day, supported by people with lived experience, friends, family members, workers and researchers, calls on Rethink Mental Illness, one of the major English mental health charities, to co-create a new conversation about the diagnosis “schizophrenia.”
Rethink has considerable influence in shaping public awareness in England, particularly as it is the lead organisation of a prominent national anti-stigma campaign called “Time To Change.” For this reason we wanted to find a way to engage them in discussing the validity of the term “schizophrenia.”
The origins of the open letter arose from our concerns about a recently released Rethink press release and subsequent BBC Online News article “Have you got the wrong impression about schizophrenia?” published on the 18th of September 2017. In the article the findings of a public attitudes survey about “schizophrenia” commissioned
• 50% of people think that schizophrenia means you have a ‘split’ personality
• 26% believe that schizophrenia makes you violent
• 23% incorrectly think that someone with schizophrenia needs to be monitored by
professionals at all times
• 45% of the general public thought the illness much less common than the one in 100
people that have schizophrenia
The article and press release gave a stark warning that myths about “schizophrenia” are dangerous.
Two quotes from the BBC article illustrate our concerns:
Prof. Wendy Burn, president of the Royal College of Psychiatrists, said it was “astounding” that schizophrenia was still so widely misunderstood. “To tackle the stigma that so many living with schizophrenia face, we have a huge task ahead of us in informing and educating the public.”
Brian Dow, director of external affairs at Rethink Mental Illness reiterated: “It’s about time we all got to grips with what schizophrenia is and what it isn’t. Schizophrenia can be treated and managed, just like many other illnesses. It’s not a dirty word or, worse, a term of abuse.”
We wanted to respond to the position of both commentators because it is based on the ‘mental illness is an illness like any other’ metaphor. Schizophrenia is not an illness that causes symptoms, it is a term used to categorise people’s experiences. Whilst it may be well-intended in attempting to bestow dignity to the sickness role and to remove blame by educating the public that “these people” are not responsible for their actions, we wanted to present the counter argument. In our view it has the opposite effect as it reinforces the belief that “schizophrenia” is “a debilitating disease” caused predominantly by a biochemical imbalance of the brain. In this way diagnostic labelling increases belief in bio-genetic causes, and also increases the sense of perceived dangerousness, unpredictability, lack of responsibility for one’s own actions and a lack of ‘humanity’ of people with the diagnosis.
It also leads to the perception that the problem is more severe, that people are more dependent and that the condition is bereft of hope of recovery. Furthermore, as the survey revealed it increases fear, rejection and a desire for distance from people with the diagnosis.
We argued that framing schizophrenia as an ‘illness like any other’ can increase stigma, not reduce it, and that “schizophrenia” as a construct is not useful or helpful for many people who receive the diagnosis and for society as a whole. Portraying mental ill health as a brain disease can only increase stigma. It diverts our attention away from other causes and ways in which we can help people. It stops us from building a healthier world and encourages in people with the diagnosis, alienation, pessimism and a deep despair.
We drew their attention to how describing schizophrenia as a disease process, as acknowledged on their own website, is not founded on any physical evidence: “There are no blood tests or scans that can prove if you have schizophrenia. Only a psychiatrist can diagnose you after a full psychiatric assessment. Psychiatrists use manuals to diagnose mental illnesses” (Rethink). This is after more than 100 years since it was first used as a descriptive term.
The idea that schizophrenia is an actual illness entity or disease, rather than a way of categorising certain experiences, gives the unfortunate impression that experiences such as hearing voices are synonymous with the diagnosis of schizophrenia. However, research tells us that hearing voices, seeing visions and having unusual thoughts exist on a continuum in the general population and can also be associated with a wide range of mental health diagnoses. Furthermore, it gives the impression that voice-hearing is solely a symptom of a mental illness when the majority of voice hearers in the general population have never needed mental health care.
We want Rethink to acknowledge that schizophrenia is very much a contested diagnosis. A diagnosis receiving increasing criticism from multiple fronts, including from professionals, survivors and researchers. An example of a recent challenge to the validity of schizophrenia within the medical profession came from the chair of their own Schizophrenia Commission (the independent Schizophrenia Commission was established in 2011 by Rethink Mental Illness to scope the state of care and outcomes for people living with schizophrenia in England). Even the chair of their own Commission, the psychiatrist Professor Sir Robin Murray, wrote that the schizophrenia construct:
“is already beginning to break down . . . presumably this process will accelerate, and the term schizophrenia will be confined to history, like ‘dropsy’ . . . Amazingly, such is the power of the Kraepelinian model that some psychiatrists still refuse to accept the evidence, and cling to the nihilistic view that there exists an intrinsically progressive schizophrenic process, a view greatly to the detriment of their patients.” (Schizophrenia Bulletin in 2017)
Murray is not alone. The distinguished Dutch psychiatrist Jim Van Os has also called for the abandonment of “schizophrenia” as a useful description and concept. In an article in the British Medical Journal (2016) he argued that because it is often understood as a hopeless chronic brain disease, it should be dropped and replaced with something like “psychosis spectrum syndrome.” The Dutch psychiatrist, Professor Dr. Marius Romme, the co-founder and former President of INTERVOICE goes further:
“The schizophrenia problem is the lack of scientific validity of the illness concept and the denial of the meaningfulness of the separate symptoms. These go together and make it impossible to solve the problems of the person… What we have to acknowledge is that psychiatrists don’t know what to else to do, apart from giving the diagnosis, so we can be angry with them, but that’s all they know. So when they see a person hearing voices, they easily identify that experience with schizophrenia, and the same if they see someone with delusions, etcetera… In normal health care, you have a complaint, then the doctor looks for the cause of that complaint, then puts complaint and cause together and makes a diagnosis. Psychiatrists do something different, they construct an illness from separate symptoms. They don’t look for the cause. Schizophrenia as an illness entity means that the symptoms are the consequence of the illness. There is no cause for the illness; the illness is the cause. This has no empirical basis and prevents a solution, because you don’t analyse the background of the symptoms. The experiences defined as the symptoms of schizophrenia are independent of the diagnosis. These experiences are meaningful in themselves, mostly related to emotional problems.”
Whilst we appreciate that Rethink have a genuine desire to challenge misleading stereotypes about the diagnosis of schizophrenia, we are of the firm belief that if we are to really change the public narrative around schizophrenia we need to take a different approach.
Our request to Rethink is to find ways to work together to begin a new conversation around the term “schizophrenia” and the way in which we talk about this with the general public and within mental health services with the goal of developing a culture where people who hear voices, see visions, experience altered and extreme states are understood and supported in ways that are inclusive, creative and hopeful.
We set out this agenda:
- The need to be honest: Presenting schizophrenia as an uncontested illness is misleading and could worsen stigma. Instead, there is a need to be honest with the general public about the debates and uncertainty surrounding the term.
- Focusing on making connections between people: The use of diagnoses and illness language separate us (the well) from them (the ill). However, when we talk about the struggles labelled as psychosis in a human way, describing the context and sense within the experiences, we can build bridges between people. We need to empathise with people’s stories, and not their diagnoses.
- Increasing awareness of the meaning that can be found within experiences like voices rather than presenting them as mere symptoms of an illness. Demonstrate that this meaning can be explored, asking “what’s happened to you” not “what’s wrong with you.”
- Emphasising the importance of different adverse life experiences that have been linked to many people’s experiences of psychosis and diagnoses of schizophrenia. This includes the importance of social determinants such as oppression, poverty and individual experiences of adversity and trauma.
We do not know how Rethink will respond but we are hopeful they will be positive.
We will see.
So far 65 people and organisations from around the world have added their names in support of the letter.
You can find the letter online here.
If you agree with the open letter and would like to add your support please contact Paul Baker at [email protected]