Books: The Heartland: Finding and Losing Schizophrenia

Read the subtitle of this book again. Finding and Losing Schizophrenia. Think about it for a minute. Not the word sequence you might expect? But that’s what this book is all about. Ditching labels. Debunking myths. Exploring the commonly misunderstood mental illness that Filer refers to as ‘so-called schizophrenia’ — the heartland of psychiatry and the condition that defines the discipline.

Through a series of real-life stories (I have desisted from calling them ‘case histories’ in an effort to not over-medicalise them), set against evidence-based research, and woven with interviews from patients, their families, and healthcare professionals, Filer highlights the controversies surrounding the diagnosis and management of ‘so-called schizophrenia’ and the physical, emotional, and social impact this has on those affected.

We learn about Amit, the person who was forcibly medicated against his will; about Erica, the journalist who was convinced her contraceptive coil was planted by MI5; about Clare, the bereaved mother trying to understand why her son took his life; about James, the soldier who attended a parade in his pyjamas; and many others.

At each stage of this narrative journey Filer pauses to examine the evidence on subjects such as chemical treatment, stigma, and discrimination, and the language of madness.

We learn that:

‘… some of the distressing experiences that we might think of as being absolutely intrinsic to schizophrenia are the result, not of some underlying disorder, but rather the very medicines that are intended to treat it …’

and that:

‘… the hard reality of discrimination … may well prove more intolerable to someone than the demonstrable falsehood of their delusions’.

However, it is the last category, of language, that I found most interesting. The author concedes: ‘that there is no uncontroversial language when talking about mental illness’ . This includes the collective noun for people accessing mental health services. If you are a GP reading this, which term do you feel is most applicable for this group of people: patient, client, service-user, or survivor?

Christmas states that:

‘… historically the term “patient” came to be seen as reflecting passivity and disempowerment whereas “survivor” and “client” represents a more empowered view of interaction with the healthcare services. For most people, however, “patient” confers no negative associations.’ ¹

He defends the 2013 decision of the UK Royal College of Psychiatrists to revert to the term ‘patient’ from that of ‘service-user’ whereas Sweeney, in the same article, counteracts this by stating that:

‘… the decision … undermined the right to self-identity developed by the survivor movement.’ ¹

Tricky, isn’t it? Using the term ‘patient’ gives that person permission to be ill. It allows them to say, ‘I need help.’ It allows the healthcare professional to say, ‘Trust me. I care. I’ll look after you’, when they are incapable of looking after themselves. It’s a term that doesn’t discriminate between physical and mental illness. However, as GPs practising patient-centred care, surely there is more than one answer.

We would do well to remind ourselves, also, that every healthcare professional will be a patient or a service-user at some stage in life. I digress. In that respect, perhaps, the author has succeeded in his aim to expand the conversation around mental illness.

Filer writes in an engaging, easy-to-read style, illustrating ‘so-called schizophrenia’ through the stories that make us human. Occasionally he mirrors a flight of ideas in his prose, which deliberately catches the reader’s attention. Not only is he a master of his craft, having written the Costa Prize-winning novel The Shock of the Fall, but he also has many years’ experience as a mental health nurse, and this lends credibility to his narrative.

There is more advice offered to healthcare professionals, including the need to consider helping people to safely come off antipsychotics much sooner than current practice dictates and the warning that assuming shared priorities within services considerably increases the risk to the patient.

As GPs we pride ourselves on holistic care, so I felt a little defensive about the author’s assumption that views held by the medical profession are somewhat one-dimensional. However, I accept his challenge to be more open-minded when thinking about mental illness.

When I finished reading the book I asked six people from medical and non-medical backgrounds to give me a phrase that described the word ‘schizophrenia’. Their answers were both disparate and illuminating. I will leave them to your imagination.