Within This Issue

Welcome to the Summer Issue of PMLD Link focusing on Meaningful Lives. Being able to lead a fulfilling and meaningful life is important to us all. This issue has been wonderful to edit as it has involved reading about the creative work being done to support people with PMLD to lead meaningful lives. The new PMLD Core & Essential Standards show what needs to be in place to support people with PMLD to have a meaningful life and many of the articles demonstrate the standards-in-action.

Some of the Standards are very obviously relevant to this issue of PMLD Link, such as Standard 3: Meaningful/ Quality Relationships, Standard 5: Meaningful Time and also Standard 7: Social, Community and Family Life. But to be able to enjoy life it is vital to get the basics rights – for example, making sure people’s health and communication needs are met – so all the standards are relevant. We can also see how important Standard 1: Leadership is – developing a culture where it is expected that people with PMLD will be supported to have lives full of meaning.

In this issue we are very grateful to Nikki Lancaster for sharing her blog about her son Lennon, and how their family made sure his life was filled with rich experiences.

Marion Messmer reminds us of the basics that need to be in place for people – Changing Places toilets! We challenge you not to want to get involved in the campaign after reading what others have been up to.

On a similar theme, Nancy Beesley highlights the learning opportunities within toileting routines and how they can be made more meaningful.

Mark Bullock and Angela Lydon focus us in on sport, whilst Marie McGovern tells us about the yoga programme she has developed for children and young people with PMLD.

Tracy Barton McClean & Julia Nagy explain how they ensure college learners with PMLD have a meaningful curriculum, and Sarah Parkes gives us a detailed picture of how she teaches Religious Education to pupils with PMLD and the sense of meaning in peoples’ lives that may be created.

The role of meaningful relationships and benefits that Intensive Interaction can bring to people with PMLD in hospital are explored in Dr Julie Calveley’s article, and Janet Gurney explains how people can be supported to embed good practice around Intensive Interaction.

Sarah Townsend’s article focuses on ensuring staff have the skills to support people with PMLD in a person centred way. She discusses a new national qualification around supporting individuals with PMLD.

Professor Peter Oakes describes an evaluation of an innovative community project using music therapy with the aim of encouraging open and honest communication and developing a safer culture.

Through sharing the experiences of Ted, Adrian, Ralph and Lucy, Helene Abbiss shows how their specialist day services support people with PMLD to have a meaningful life by encouraging a sense of purpose and self-worth.

People with profound and multiple learning disabilities deserve a meaningful life. We hope that you find the articles a source of inspiration. Enjoy!

Rachel Hughes, Martin Goodwin and Bella Travis, Guest Editors.

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