The hidden experiences of patients treated with radiotherapy for gynaecological cancer are described in a book by Lancaster researchers working with NHS staff.

The Gynae Cancer Narratives Project from 2019 to 2022 involved a collaboration between Lancaster University and The Clatterbridge Cancer Centre NHS Foundation Trust in Liverpool, funded by North West Cancer Research.

The book is published during September’s Gynaecological Cancer Awareness month.

The Lancaster project team included Dr Lisa Ashmore, Dr Hilary Stewart and Dr Mette Kragh-Furbo from Lancaster Medical School and Professor Vicky Singleton from the Department of Sociology. The Clatterbridge team included Daniel Hutton, Lynda Appleton and Lorraine Salisbury. The team also included a researcher with lived experience of cancer, Corinne Singleton.

The aims of the Gynae Cancer Narrative Project were:

· To increase understanding of how radiotherapy impacts on social, personal and sexual lives

· To improve future patient experiences of living with the social and personal impacts of radiotherapy

Project lead Dr Ashmore said: “We have collected two sets of narratives relating to individual experiences of radiotherapy treatment for gynae cancer. The first set includes narratives from sixteen women, who recorded their experiences of radiotherapy treatment from the start of their treatment and up to six months following treatment. The second set includes narratives from eighteen women, who have had radiotherapy treatment for gynae cancer at some point, ranging from less than one year to up to twenty-five years ago.”

The resulting book entitled “We need to talk …about radiotherapy for gynaecological cancer” brings together patient experiences in the hope that the care for people with a gynae cancer will be the best it can be for every patient.

Professor Singleton said: “The book gathers together the variety of experiences of the participants in seven sections representing key themes. These include: Sexual Selves, Late Effects and Dignity. In doing so the book highlights experiences of radiotherapy treatment that are often not spoken about or acknowledged.”

Dr Ashmore said: “Conversations is the theme that frames the book, and its key message. Each section is entitled “Conversations about…” because the participants’ experiences revealed that conversations can be difficult to initiate or are easily closed down, even though many issues could be resolved through careful conversations.”

The researchers hope that the book will be read by patients, relatives, radiographers and all involved in care. For patients and their relatives there is advice, alongside examples of how and what to ask prior to, during and after treatment, and encouragement to ask again if they do not get answers. For practitioners there are questions to encourage reflection, conversation, communication with patients and also to challenge current services. The aim is that questions can be used directly or as prompts, or as part of a support or reading group.

Kathleen (name changed for anonymity), a participant quoted in the book, wrote: “I would have preferred more realistic information from the Macmillan leaflets. I recently reread the one about radiotherapy while doing this and I commented to a friend that I think it was the Disney version that I read. I really wasn’t scared or nervous of the treatment but I think I should have been more aware of it. I think the info you get should be more realistic and should be told what can happen mentally and physically.”

Professor Singleton said “The book includes a Manifesto for Change that details 10 key actions to promote the best possible care for everyone undergoing radiotherapy for a gynaecological cancer.”

Alastair Richards, CEO of North West Cancer Research, said the charity was delighted to have supported the project and resulting book.

He said: “As a regional research funder it has been so refreshing to hear the authentic voices of patients coming through and telling us about the importance of dialogue, patient dignity, access to services and clear information before treatment starts. We need to hear more of these voices to ensure that cancer services are supporting women during what can be a traumatic experience.

“We know that resources are strained in healthcare at the moment, so we hope that the findings of the project can help to improve patient care and ensure each individual’s concerns and circumstances are able to be acknowledged. It was great to see this book being launched to clinicians who were eager to learn and to incorporate this into their practice – and to hear that it has been sent to treatment centres across the region. We hope to see more excellent, patient focussed studies like this in the future.”

Danny Hutton from the Northwest Radiotherapy Operational Delivery Network said: “The patient narratives are extremely powerful and bring to life real experience and emotion. This insight from a patient's perspective is invaluable and will cause professionals to reflect on their practice. My hope is that this book will encourage conversations about some of the less well discussed aspects of treatment, care and life during and after radiotherapy.”