Within Issue 95

We know it is a difficult and uncertain time at the moment and our thoughts are with all of you. We want to praise both NHS workers and those working in social care, education and other services for people with PMLD. We are hugely grateful for the work you are doing to support people with PMLD and all of us at this time.

We hope you enjoy this Spring issue of the journal. We have had a wealth of articles covering a range of topics, which we want to share with you. So we have decided to make this a general issue. We hope the ideas and insights from families and practitioners will inspire you, and their personal experiences – whether challenging, joyful or both – offer you something to reflect on.

There are articles exploring Intensive interaction, on valuing a person’s communication and the role of important objects from Mark Barber and Graham Firth, Sheridan Forster, Anne Laney, Andrea Ricci and Magdalena Jordan.

Pat Thomson has looked at the practice and guidelines of sensory storytelling and Pete Wells gives us a detailed step-by-step guide to delivering one. We hear about sensory songs from Bev Cullen, creating community through song from Eleanor Gibson, and we hear from Susannah Crump’s family about the wonderful experience she had sharing sensory experiences with people with PMLD. In another piece, Shibden Hall is brought vividly to life as we read about the rich sensory experiences Gerard Wainwright and the young man he supports shared on a visit there.

Lucy Williams talks about her son Thomas and their family, sharing how difficult it is for her to think about the future. In Mike Ormian’s article he shares the profound impact that a personal health budget has had on his daughter Rebecca’s life. The photo of Rebecca says it all!

We also have two thought-provoking poems – one from Pat Graham, a family carer and another from Jo Fitch, a teacher. We have an article on play for children with PMLD from Helen Fitchett, a reflection on the meaning of independence from Sara Davis, and an article about ‘Skiggle’ from Christine Singleton (you will have to read it to find out more).

This issue is dedicated to Jeanne Carlin, our friend and colleague at PMLD Link. She will be much missed by us all. We start with an Appreciation of her.

With very best wishes from us all at PMLD Link

Rob, Jo, Maureen and Bella

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