Within This Issue
Our theme for this issue seems to have struck a chord with many of you and we have been thrilled at how this focus has inspired readers to contribute so eagerly! Articles reflect perspectives from both ends of the continuum, prompting us to reflect on the current picture and aspire to an exciting potential future– both for individuals and for authentic, person-centred provision.
We start with articles describing the only too common failings of services and provision that lack essential reasonable adjustments and the necessary attention to detail that make services, care and support truly responsive and personalised to individuals. This issue of PMLD Link opens with a ‘call to arms’, encouraging us to be champions for people with PMLD and make the change we need a reality. Michael Fullerton’s article proposes we need some national quality standards of care for individuals with PMLD – because the necessary level of awareness and attention to the ‘detail’ are missing. He reminds us of the too numerous recommendations that remain largely unmet, from government commissioned reports reviewing the needs and provision for this population. Sue Turner and Naomi Harflett share further evidence of the concern that people with PMLD continue to miss out on true personalisation. All of these challenges are set within a climate of significant and growing financial constraint.
Fortunately we include some really positive and inspirational articles to respond to such challenge at both an individual and a service level. Each of these stories describe practical and realistic ideas to demonstrate how we can improve the current picture. Articles from Helene Abbiss, Peter Limbrick and Tess Ellis explore a shift in conventional models of service delivery further offering ‘outside the box’ thinking. In the News section too, you can read about an innovative service in Lambeth who report clear evidence of improvements to health and quality of life for people with PMLD, as a result of their specialist approaches and responsive activities.
Articles from Amandine Mouriere, Laura Valentine, Peter Taylor and Juliet Goldbart share some valuable tools and insights enabling us to hone our attention to the very unique responses and approaches we currently use. This systematic observation and reflection enables us to be most responsive. Sheridan Forster throws down another ‘gauntlet’ to challenge us, through her thought-provoking piece about our approaches and perspectives on personal passport and profile. Do we really consider these issues?
Our theme ‘it’s all in the detail’ highlights services and provision that are still not person-centred or personalised for those with PMLD, but articles share strong evidence of just what CAN be achieved – some great examples demonstrating ‘what good looks like’ in practice. It is this real attention to and level of ‘detail’ that allows us to be most responsive and to create the most empowering and meaningful opportunities for people with PMLD. Ultimately it is our understanding and our responding to the all-important ‘detail’ that gives meaning and enriches lives – for people with PMLD …and for us too. Keep on demanding the essential detail and be a champion for those with PMLD!
Annie and Jill, Editors
