People in Lichfield have shared their stories of life with multiple sclerosis for a new book.

Collected Stories: Living with Multiple Sclerosis has been created as a learning resource for health professionals across the UK.

Dr Emma Hodges with the new book

The publication has been released during National MS Awareness Week which ends on 25th April.

It is one of the outputs from a research project carried out by St Giles Hospice and Keele University since 2018.

Professor Sue Read, who was one of the experts involved in the study, 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.”

Prof Sue Read

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.

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 community support for people with a terminal illness. 

“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.”

Dr Emma Hodges

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

Leave a comment

Please familiarise yourself with our comments policy before posting.

Your email address will not be published. Required fields are marked *