Within Issue 99

This issue of the PMLD LINK journal was supposed to be our annual general issue without any specific theme but, almost inevitably, most of the articles deal with concerns arising from and responses to the coronavirus pandemic and successive lockdowns. The articles share different people’s stories of their experiences and their ways of coping with the pandemic which will probably resonate with many readers. Many thanks to all our wonderful contributors.

During the past fifteen months of the Coronavirus pandemic children and adults with profound and multiple learning disabilities and their families and carers have suffered a great deal. Sheila Moorcroft presents accounts from three mothers of adult children with PMLD that reflect on how they and their children have coped; how the loss of services has had significant impact on them; and how poor communication and inaction from service providers and commissioners have added to the challenges and difficulties they have faced. Dreenagh Lyle expresses similar frustrations with local authorities and describes how much her daughter’s daily life has changed and the impact on her. It is pertinent to note Julie Calveley’s article about increased stress and anxiety and trauma resulting from the pandemic and what can be done to protect mental health. She emphasises that positive relationships are critical for restoration of health and wellbeing and fully enjoying life. This is reiterated in Sheridan Forster’s latest thoughts about communication and relationships.

Personal health budgets are difficult to manage but can give families greater control of what support and experiences are available. Peter Glick describes his development of a practical, online resource of templates and documents to support parents and other family members who want to use personal health budgets themselves to recruit, employ and manage personal carers and the myriad of other services that are needed.

Matthew Laurie gives an account of Rapport-Based Music as an inclusive way to make positive connections and build relationships with the people with PMLD. Delyth Williams describes one school’s approach to using music as a powerful motivator and foster greater engagement of pupils in school life as a whole. Peter Blaker describes an impressive art project developed to tell the lockdown story of people with learning disabilities and showcasing the art produced in a virtual art gallery online.

The pandemic has forced change in every type of service. Judith Cooper describes the transition of a young man with PMLD from full time education in a specialist school setting to a service which provides nursing care and how the service team had to develop methods of home schooling in the case of this young man that benefitted him and others subsequently. Louise Molineux describes how one service, faced with a ban on face-to-face working with adults with PMLD, developed the use of Facebook portals to provide interactive stories, visual, voice, and face changing effects and various eye‐catching backgrounds that would engage its service users with a bespoke virtual offer to meet their sensory needs. Sam Murray and Beccy Johnson describe ways they have had to adapt to deliver the best quality education possible in their respective schools and how they responded to challenge to provide access to meaningful, online teaching. The impact of the COVID-19 pandemic on schools is yet to be documented properly but Ange Anderson and Carrie-Anne Sutton describe the changes in lifestyles of both staff and pupils and working patterns and the complex decisions that have to be made by school leaders to ensure that the possible education is still available.

Despite the problems experienced since March 2020, there have been positive developments by individuals and services illustrated in these articles and others. Lina Graham describes her work as a volunteer trustee during lockdown to develop a dedicated sensory room, which underscores how much depends on volunteers and charities. Leanne Tonks describes how Gillian Robinson has been creative in her use of available resources to introduce Lili Nielsen’s Active Learning approach in her classroom. Joanna Winster gives us information about an online resource developed as a good substitute for a multisensory day. Pete Wells has produced a popular sensory story which he designed to give parents some ideas of things to do with their children who could not attend their college.

Last but by no means least there are reflective pieces which are not related to the pandemic at all. Antony Morris recommends that people living or working with individuals with PMLD should always consider how an individual’s sensory processing may motivate their behaviours since this may suggest ways of improving that person’s development, learning and experiences exponentially. Rachel Gale works in Further Education and reflects on the design of the curriculum for learners older than nineteen years that will meet their needs and Government requirements for accessing funding.

Our final article, by Melanie Nind, signals a new partnership with the British Journal of Learning Disabilities. She provides the first of a new regular feature in PMLD Link by looking back at two key papers on listening to people with PMLD. Future articles will hopefully provide summaries of new research including people with PMLD as well as reflection on landmark papers from the past. Melanie explains her motivation for writing this piece; her aim is to spark dialogue with PMLD Link readers and promote research in support of people with PMLD.

The coronavirus pandemic and insufficient government response at national and local levels has made plain the lack of services, inequalities and, what Dreenagh Lyle, calls ‘general cracks in the social fabric’. Readers will know that these concerns have been expressed by many for years. It is to be hoped that people with PMLD and their families and supporters will be resilient and bounce back as some kind of normality is to be restored. But not all that was normal before the pandemic was good and there are lessons that must be learned in the long term by all service providers and commissioners at all levels. The timing is right for more dialogue between families and services and, probably, campaigns to increase awareness of these issues and bring about more flexible, responsive and inclusive services that are better resourced. But it must also be borne in mind that services have responded to the pandemic threats by creating novel ways of engaging with people with PMLD and their families (e.g. use of Portals, development of online resources, organising home loans of resources) and these will continue to have value in future in strengthening partnerships and relationships if they are properly maintained and developed.