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New book shines light on the wellbeing and independence of young people living with PMLD

25 June 2021

Julie Tilbury is the lead teacher for children living with PMLD (Profound and Multiple Learning Disabilities) at Chailey Heritage Foundation and is a passionate advocate of improving the lives of these young people. Her latest venture has led to the publication of a book: ‘Enhancing Wellbeing and Independence for Young People with Profound and Multiple Learning Disabilities’ which she co-wrote with Andrew Colley, a former senior lecturer in Special Education at the University of East London, and Simon Yates, Headteacher at Chailey Heritage School. Andrew Colley led the project and has carried out extensive research in the area explored in the book and this article.

In recent years there has been a real lack of research into the experiences of young people living with PMLD, so the collaboration of these three experts and their research and recommendations in the book is eagerly anticipated. It shines a light on an area often overlooked by society, by exploring the experiences of individuals living with PMLD, and recognising that each person is an individual with their own experiences and feelings – not just part of a group with a label. This is very much the ethos of Chailey Heritage Foundation, where Julie teaches, which embraces a curriculum tailored to the individual, recognising and embracing their unique needs and abilities.

The book is split into three parts. The first part explores established and current perspectives on wellbeing and independence. The second part shares the results of the Lives Lived Well Survey which, in addition to a number of special schools in the UK, was sent to countries worldwide to compare and contrast learnings internationally. The third and final part of the book focuses on the curriculum at Chailey Heritage Foundation and explores how the school is achieving best practice in this area. Julie is particularly passionate about how physical activity can have a direct impact on cognitive ability and advocates the methods staff use at Chailey Heritage Foundation in helping other schools and organisations to achieve this.

A reflective read, the book makes the reader question what wellbeing and independence mean for someone living with PMLD and how different that looks when compared with mainstream individuals who have the ability to communicate with language. We learn how a person’s disability might prevent them from telling us when they are in physical or mental pain – and also learn how we can better understand individuals and their unique ways of communicating, so we can respond to their needs more sensitively. The book also asks questions of society and how communities might embrace diversity more, working towards inclusivity for individuals living with PMLD and their families, who are often isolated and left on the margins of society.  

It is hoped that the book will influence the way we teach, relate to and care for young people with PMLD. It has already been added to the reading list for Birmingham University’s PMLD Masters Degree, so will be educating and influencing future practitioners in the field – a positive step in the right direction. Julie Tilbury is also keen for it to be a knowledge sharing exercise, encouraging best practice both here in the UK as well as internationally, by feeding learnings back to all the international partners that participated in the Lives Lived Well Survey. The book is intended to be used as a guide, resource and inspiration for everyone from practitioners to parents, and concludes by asking what we can learn from these young people to support us all in living life to the full.

*Images pre-covid

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