A new book which offers honest insights into living with multiple sclerosis (MS) and which was written by people directly affected by the condition has been launched.
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 (19-25th April, 2021).
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 MS group.
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.
Professor Sue Read, Keele University
“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.”
Contributors include people living with the condition along with volunteers and staff at St Giles Hospice. The book also features a foreword written by community historian Professor Carl Chinn, who offers a moving account of his childhood experience of living with his own grandfather who was diagnosed with MS in the 1950s.
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.
An exercise instructor working with the MS groups at St Giles and a hospice member of staff have also contributed to the collection, revealing how their own preconceptions have been challenged by their experiences and the insights they have gained as a result.
Dr Emma Hodges, CEO 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.
“We also hope that their insights will be useful to professionals in the wider community as they learn from the real MS experts – the people who are living with the condition every day of their lives.”
For more details of the book or to buy a printed copy or downloadable version, visit www.stgileshospice.com/MS-book
All proceeds from the sale of Collected Stories: Living with Multiple Sclerosis will support St Giles Hospice and help fund vital care for local people and families living with a terminal illness.
For more information about St Giles Hospice and the expert care it provides, please visit www.stgileshospice.com
Front Picture: Dr Emma Hodges, CEO of St Giles Hospice.
St Giles Hospice is a registered charity offering high-quality specialist care free of charge for people living with diseases which are terminal or incurable as well as providing support for their families and carers.
Patients come from across the hospice’s catchment area, which ranges from Ashby-de-la-Zouch and Atherstone in the east, to Cannock in the west – and from Burton and Uttoxeter in the north, to Sutton Coldfield and Coleshill in the south.
Care is offered at the hospice’s centres in Whittington and Sutton Coldfield and in patients’ own homes across the region.
St Giles spends over £10 million a year providing its specialist services and with little more than a third of this funded by the Government, the registered charity relies heavily on donations and income generation from the local community.