Coping with Psychosis and Schizophrenia: Family Stories of Hope and Recovery

Carolyn Chew-Graham OBE is a professor of general practice research at Keele University and a general practitioner in Manchester. She is on X: @CizCG

Ihave known co-author David Shiers for 15 years – he had already spent many years campaigning to improve the lives of people with severe mental illness (SMI).

In that time, David has supported research and, more importantly, worked tirelessly to get evidence into practice, particularly focussed on tackling the mortality gap for people with SMI. He worked with the late Helen Lester to develop the Lester resource with it’s mantra “don’t just screen, intervene”, which we recently updated.

During the COVID-19 pandemic, a group of us, working at home and led by David, focussed on the need to highlight the importance of oral health in people with SMI: bit.ly/42NcBM3

This new book, co-written with Elizabeth Kuipers and Juliana Onwunmere, highlights the importance of support networks and informal carers of people living with SMI. As clinicians, we know this, but reading people’s accounts really brings this home. This book includes a brief chapter giving basic information about psychosis and schizophrenia – symptoms, comorbid physical health problems, management and support.

The first lived experience account comes from Aisha – what struck me was Aisha’s reflections on the words used to describe her in her case notes: aggressive, disillusioned, paranoid. We write these words, maybe without thinking. Language is so important – and this is a thread throughout the book. Philippa describes the relief of her son being given a diagnosis of schizophrenia – this highlights what we all understand – that a label or diagnosis can be so important, to explain symptoms and behaviours, and to access care. We should never forget the importance of diagnosis, but should also focus on needs, as other stories outline, the diagnosis should not over-shadow everything else.

David and his wife Ann write movingly of their own experiences as parents of their daughter with schizophrenia, highlighting the tensions of being healthcare professionals as well as mum and dad. Their final sentences moved me immensely – highlighting what parents want for their family and how good care for their daughter with schizophrenia has enabled them to achieve this: “Our whole family has regained its balance, and family life feels reassuringly normal. One more able to have fun and to be serious, to laugh and to cry, to work and to play…..not perfect, just an ordinary life.”

The final chapter is a summary of the first-hand accounts included in the book, with key messages for the reader. The tensions in romantic relationships when a partner becomes a carer was a key message for me – I don’t think I had really considered this before. The importance of having the expertise as a carer recognised is stressed. As GPs, we should ensure that the practice carer’s register includes those caring for people with SMI and we need to ensure we offer support to them.

This book is a must-read for health and social care students and practitioners.

Featured book: Juliana Onwumere, David Shiers and Elizabeth Kuipers, Coping with Psychosis and Schizophrenia: Family Stories of Hope and Recovery, Cambridge University Press, 2024, ISBN 978-1911623694

Conflict of interest: The author is a personal friend of David Shiers

Featured photo by Hannah Busing on Unsplash