Within Issue 101

Welcome to the Spring edition of PMLD Link in 2022. Our ambition or hope was that the title ‘Listen Up’ would give prospective writers a wide subject area to consider: how we support people with profound and multiple learning disabilities to have a voice and to be heard, as well as the broader areas of decision-making and communication as a basic human right. This is timely given the UK Government’s delayed consultation in 2022 on the long-awaited consultation on implementing the Liberty Protection Safeguards (LPS) and the revised code of practice on the Mental Capacity Act 2005 (the legal framework for decision-making where people lack capacity).

We had a hard act to follow given the wonderful 100th edition of PMLD Link (published Winter 2021), but we think you’ll agree this journal covers a lot of ground, including a range of ways in which families and practitioners have focused on meaningful inclusion and supported the individual’s voice to be heard, despite the perceived barriers this group of people face.

As you can see from the array of articles, there are so many creative approaches to ensure people have opportunities to voice their wishes and dreams, to be seen, heard and supported to participate in decision making, and to ensure their full and meaningful inclusion in society. A recent highlight was the collaboration between PMLD Link and Campaign 4 Change (Self Advocacy Group), jointly-presenting at the Learning Disability England Annual National Conference. Through the conference theme ‘Good Lives: Building Change Together’, we encouraged delegates to take action, to help remove the invisibility cloak that surrounds people with profound and multiple learning disabilities, so they are seen and heard! You can read more about this inside the journal.

This edition sees people being ever more creative when it comes to developing relationships and environments that are nourishing, that promote and maximise everyone’s communication potential. We benefit from personal stories where the smallest and subtlest of actions and responses from individuals are noticed, valued and interpreted as meaningful by those who know them really well. The responsive role of communication partners is significant in giving these individuals a sense of being heard, in having their say and some control in their lives.

Isaac’s visual story about Hot Monkey offers us an opportunity to reflect on what we need in our life to be at ease and open to new experiences – What’s your Hot Monkey? What’s the Hot Monkey for the person with profound and multiple learning disabilities in your life?

Our readers may not be aware that PMLD Link has no paid staff, and in fact our charity, journal, website and social media pages are run and produced entirely by a small team of dedicated volunteer editors and trustees.

Spring 2022 marks two years since we were last able to meet face to face as an editorial board due to the pandemic. We have managed to keep the ball rolling through the wonders of technology but it’s fair to say we have really missed seeing each other in-person at our editorial board meetings. It’s good to be able to tell readers that the team has exciting plans to meet up in Birmingham in May 2022, to work on a development plan to ensure the sustainability of PMLD Link: as a charity, as a journal, and as a network that links and brings people together to improve the lives of people with profound and multiple disabilities.

This will be an exciting and busy year for PMLD Link so please keep following us on social media, keep getting in touch to share your stories, your ideas, resources and experiences – and we’ll let you know when we have some further news to share about the future of our wonderful community of practice.

Enjoy your reading.

Guest Editors: Becky Loney, Michael Fullerton and Maureen Phillips