Within Issue 108
Welcome to our Summer edition of PMLD LINK – Health Matters! In everyday conversations, it’s so common to hear, “As long as you have your health”. Good health is of central importance in all of our lives. Here at PMLD LINK we think health is especially important to everyone with profound and multiple learning disabilities (PMLD). So, it’s no surprise to hear this Summer 2024 Health journal is our TENTH issue dedicated to health and wellbeing. These journals may date back almost twenty-five years but so much of their content remains very relevant today. It’s also quite salutary to reflect on the lack of progress in some areas for people with profound and multiple learning disabilities.
As we edited this journal, the UK experienced a hiatus as a general election was called and a new government elected. Government and other departments went into the pre-election period of sensitivity, which meant some of the articles we expected to include did not materialise. We also received fewer than hoped for personal stories and articles from families and paid carers. The reason for this was simply that those involved in direct caring duties are so busy fighting and advocating for the health needs of the person they love and care for, they often have little time or energy left to write. This strengthens PMLD LINK’s motivation to continue to push for change, for people with profound and multiple learning disabilities, not only being acknowledged but their needs fully included in healthcare policy and planning processes. Health inequalities must end!
Despite these challenges we hope you enjoy reading the rich material included in our Summer journal. We open with a thought-provoking article asking important questions about what it means ‘to be a person’ and the inequities of how people are valued when so many approaches define personhood primarily in terms of cognitive capacities. These same issues underpin so many healthcare decisions or opportunities, so it’s vital we acknowledge them.
We have many valuable articles offering information, insights and practical advice relating specifically to people with profound and multiple learning disabilities. These topics include the role of lung health and chest physiotherapy; good oral health in relation to preventing aspiration pneumonia (a frequent risk for people with PMLD); positive health benefits from chiropractic treatments; research into Safe, Efficient and Enjoyable Mealtimes (SEEM); safely and respectfully delivering essential delegated healthcare activities in adult social care settings; accessible eye care and vision checks; a PMLD Network to support social care staff, and the huge topic of sleep!
We’re particularly grateful to include two health focused items from families, who share valuable insights from their lived experiences – an article on Personal Health Budgets and another sharing very personal reflections and practical advice (or rather, survival tips!) on hospital stays.
We have also drawn together health-related updates, news and resources for you to browse, which we hope will help support people to have improved healthcare experiences. Ultimately we aim through this issue to capture a rich and diverse range of health issues and creative solutions to improved wellbeing, being respectful of ‘personhood’ and ensuring people with profound and multiple learning disabilities are treated as equals in relation to health promotion, prevention and planning.
And don’t forget to look through some of those older health-themed journals we mentioned at the start of this editorial (see below for health editions). There are some real treasures to be found in there!
Let’s not forget, Health Matters … because it really does!
Guest Editors: Sue Thurman, Michael Fullerton, Maureen Phillip and Annie Fergusson, with help from Amy Nokes, Leigh Wharton
