Patient Experience Book Club

Welcome to the Patient Experience Book Club

At the heart of healthcare lies an essential truth: every patient’s story matters. The Patient Experience Book Club is a space where we can come together to explore those stories—delving into books that illuminate the diverse, often deeply personal, realities of healthcare.

Whether you’re a patient, carer, healthcare professional, or simply someone passionate about understanding the human side of medicine, this is the space for you. Through shared reading, we aim to bridge the gap between clinical care and lived experiences.

Our chosen books will inspire empathy, foster understanding, and challenge assumptions. They may span memoirs of resilience, studies of healthcare systems, novels rich with human emotion, or thought-provoking non-fiction. Together, we can reflect on these stories to uncover lessons that can transform the way we perceive and deliver care.

So, grab a cup of tea, a comfortable seat, and your book of choice. Let’s embark on this journey to deepen our understanding of what it truly means to care—and to be cared for.

Welcome to the Patient Experience Book Club. Let’s turn the page together.

Synopsis:

Michael once an athlete, surfer and college student has his life turned upside down at 19 years old but with the power of love and support he is able to get through the challenges that chemo, radiation and other a bone marrow transplant bring. Throughout the story, Michael describes what it is like from his perspective to live through such a traumatic experience and he shares his insights and important life lessons he learned.

Synopsis:

In summer 2023, Hazel Carter, self published a unique book about living well with a terminal disease.

When Hazel’s husband, Alan, was diagnosed with amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease (MND), it was devastating.

A shocking prognosis of six months to two years to live, and no hope of a cure, spurred them on to take a holiday of a lifetime overseas, have four UK breaks and enjoy countless social events, while Alan became gradually locked into a failing body, dependent on a PEG tube for feeding and a ventilator to help him breathe. Alan also tried to get on a drug trial, and participated in tests to help researches establish more about the cause of the disease.

In this 350 page book Hazel describes the challenges of providing care in their home, how their deep love for each other kept them strong and the ups and downs of their adventures. She also shares her private thoughts and feelings to help readers understand the emotional toll such a situation creates.

In diary format, the book was produced using extracts from the journals and notes Hazel kept every day during her husband’s illness.

It has been produced for medical professionals, and healthcare workers, in the hope it will provide a far wider perspective than they can gain during their brief interactions with people affected by terminal diseases.

This book should be read by leaders and decision makers across health and social care services, GPs, neurologists, physiotherapists, occupational therapists, respiratory nurses, hospice staff, dieticians, speech and language therapists, social workers, communications technicians, wheelchair technicians, alternative/complementary therapists, bereavement counsellors, psychologists, and those in the front line of adult social care.

To learn more and to buy the book, go to https://lifesgoodbook.co.uk/