The title of this book is emblematic. It gets to the heart of the problem of schizophrenia, indeed within the authors’ preface.

It is all about “consumers, carers, and clinicians” and, I would argue, the “wider community”. To some extent at least, we are all involved or affected by schizophrenia. There is a considerable burden unevenly shared.

Living with schizophrenia. Margaret Leggatt and Mary Ryllis Clark, Monash University Publishing 2025

Schizophrenia at the present time is defined based on symptoms and psychosocial impairment. The positive symptoms of schizophrenia include hallucinations – usually auditory – and delusional ideas – usually paranoid. The experience of these, particularly in the early stages of the illness, can be terrifying. Later, with appropriate medication and psychological and cognitive strategies, and a supportive environment the anxiety and agitation can be reduced.

The illness carries with it for the patient a further significant psychosocial burden. Feelings seem changed or blunted, cognitions are impaired, relationships often prove very difficult with social alienation and educational and employment opportunities are impaired. This is particularly so as the illness occurs in early adult life and the effects at this time can be lifelong. Poorly managed, the disorder causes widespread disablement. At times, the latter can occur even with the best available treatment and care. Life is forever changed.

The accounts of the patients provided In chapter 2 is telling. They can often perceive subtle changes much earlier in their lives leading to the more acute disorder. Changes can be insidious. Often, insight early on is lacking and this can make treatment quite difficult. Lives are forever changed. The self is never the same.

For the family in the early stage of the illness, anxiety is exceedingly common and there is often a sense of hopelessness and, sometimes, guilt about the cause of the illness and their capacity to provide the best available support. Care and support for the family carers is critical for most effective outcomes.

In chapter 2, parents provide descriptions of the slow slide into active disorder, initially perhaps affecting education and social relationships without early on realising what is developing and feeling impotent and helpless along the way. Coming to grips with the diagnosis is daunting on its own beside the behavioural changes in their loved one..

From the perspective of professional carers, nurses, doctors, social workers, psychologists and other paid carers, the burden is primarily felt in a sense of inadequacy over the resources available. A sense of burnout is all too common. But having worked in the services, both within hospital and in the community at large, staff do a remarkable job. An additional problem, of course, is that services are very unevenly distributed.

Associate professor Pham provides a lovely synopsis of diagnosis of the disorder, known aetiology, current treatments and complications including drug use.

Dr Mirabel McConaughey describes individual psychological approaches but importantly the team approach in the community setting and dealing with non-compliance with treatment. The central role of the family and their support is emphasised and recognises the importance of the NDIS.

There are chapters on illness in Indigenous populations and in refugee and asylum communities. Professors Rosen and Bennett discuss one of the major social issues which is homelessness. Without a stable base, appropriate continuing treatment cannot occur, but the role of outreach teams attempts to address this difficult problem.

There are brief but useful chapters on collaborative care, principles for family carers, mental health and legal services, and non-government advocacy organisations. The role of advocacy should not be underestimated. Provoking bureaucratic guilt is not a crime.

In regard to community attitudes, one of the issues is misinformation about the disorder and perhaps the lack of understanding of the extensive disability and pain that can occur. The stigma remains. One might argue rather than living with schizophrenia, a patient simply exists with it.

There have, however, been very positive changes in recent years referenced in this book.

In the first instance, the move towards transferring patients from hospitals to community living has proven a success, where supported housing has been available. To suggest we need more supported accommodation is simply an understatement. The introduction of the NDIS has also been a significant move forward, providing broader social support and activity for patients and, at times, respite for families. Family and care teams always feel “enough” can never be enough. However, on the international stage Australia does remarkably well and funding is used efficiently. We get bang for our buck.

Leggett and Ryllis Clark have produced a wonderful and easy read providing multiple and rich perspectives on what is a disabling and poorly understood disorder. Both health professionals and family and friends of those with schizophrenia and lay community members can learn a lot from this book. The flavour of the book is one of hope.

The views expressed in this article may or may not reflect those of Pearls and Irritations.