People living with MS share stories in new book
Lichfield locals directly affected by multiple sclerosis (MS) have shared their stories and offered honest insights into living with the condition in a new book.
'Collected Stories: Living with Multiple Sclerosis' has been developed to provide a learning resource for health professionals across the UK and was released during National MS Awareness Week.
The book is one of the outputs from a research project carried out by St Giles Hospice, Keele University and members of the hospice 's MS support group.
The project began in 2018 and involved focus groups and interviews designed to help understand the experiences of people with MS in accessing hospice care and support.
It was conducted by Professor Sue Read and teaching fellow Dr Sotirios Santatzoglou from Keele University, Dr Emma Hodges from St Giles Hospice and participants from the hospice 's MS groups based in Whittington and Sutton Coldfield.
Following the study, the research team were so inspired by the experiences the group shared that they spoke to participants about how they might want to share their stories more widely.
Professor Read said: “I have been involved in the production of books previously as a way of sharing important life experiences and supporting healthcare professionals to learn and reflect on their practice. The group wanted to have their voices heard so they asked us to support them. It was a pleasure to help them do that as an outcome of the research.
“The book incorporates a wonderful, unique collection of stories that provides powerful insights into the impact that multiple sclerosis has on the individual, their families and professional carers.
“We didn 't intend to pull together this collection of stories from the beginning of the research project - it simply evolved as stories often do in life. Little did we know the work that it would entail, or the impact that these stories would have on those people involved and those listening to the stories. ”
The powerful testimonies in the book feature the life stories of several people diagnosed with MS, highlighting their different experiences, the philosophies and coping mechanisms that have helped them through the years and the actions of the wider community that have helped or hindered their daily lives.
Dr Emma Hodges (pictured), chief executive of St Giles Hospice, said: “Research is a small but important part of our strategy at St Giles.
"We support a range of national research studies and also design our own in order to improve patient care and/or community support for people with a terminal illness. In all of our research we aim to proactively involve the people we support.
“We are extremely grateful to members of the St Giles MS groups who shared their stories with us and wrote with such thoughtfulness, dignity and compassion. We hope that their candour and wisdom will help us to better understand their individual and varied experiences of MS and to shape our services more effectively to support their needs."
All proceeds from the sale of the book will support St Giles Hospice and help fund vital care for local people and families living with a terminal illness.