National learning disabilities conference sets new standards for better care


Family carers, health and social care professionals, academics, education and social care providers joined together on Friday 24th November for the first national conference with an exclusive focus on Profound and Multiple Learning Disabilities (PMLD) Service Standards.


Taking place in Manchester, Raising the Bar saw the launch of the new Core and Essential Service Standards for supporting people with profound and multiple learning disabilities, setting out aspirational benchmarks for what best practice care looks like across the UK and beyond. The conference also aimed to establish better networking around PMLD, which until now has been a largely neglected area in the sector and society more widely.


With over 150 delegates representing England, Scotland, Wales, the Republic of Ireland, the Isle of Man and the Channel Islands, the conference raised greater awareness of this often overlooked population, and brought discussions around care provision to the forefront of the social care conversation.


Launching the new and pioneering service standards were Clinical Director of CMG, Michael Fullerton, Head of Inclusive Research at Choice Support, Dr Thomas Doukas, Annie Fergusson, Editor at PMLD Link and a family carer, and Joanna Grace, from The Sensory Projects. The Standards, contributed to by families, sector professionals and academics, have been endorsed by NHS England and received support from Norman Lamb, who provided the Foreword for the Guide. 


The Core and Essential Service Standards are aimed at commissioners, providers of care services and educational establishments, including specialist schools, to ensure equity and quality of support and provision, in the hope that the standards will be used to support adults and children with PMLD, in social care and assisted living settings. The standards focus on what should be put into place within the organisation, including quality of care, leadership, support and training for staff members.  


Keynote speakers at the conference included Professor Julia Goldbart Director of RIHSC, Associate Dean for Research & Professor of Developmental Disabilities, Manchester Metropolitan University; Jonathon Bryan, Eye Can Talk; Becky Loney, Founder of the Lambeth Mencap Carousel Project; Jayne Leeson, Changing Our Lives; Sarah Clayton, Postural Care Simple Stuff Works CIC; Rachel Wright, Born At The Right Time; Jenny Miller, CEO of PAMIS and Pat Graham a family carer and member of PAMIS.


As part of the event, a range of workshops were also hosted by expert professionals across the sector, including sessions on training staff to work with individuals with PMLD; listening and responding to people with PMLD; safe touch; sensory strategies to support mental wellbeing; team approaches to personalised care and support; and implementing standards in a care setting.


The event hosts, Jo, Thomas, Annie and Michael commented:


“We have been absolutely delighted to launch the Core and Essential Service Standards at the first national conference for people with profound and multiple learning disabilities. The conference has been essential for ensuring that children, young people and adults across the country with profound and multiple learning disabilities receive the high-quality care they both need and deserve, so that they can continue to lead happy and fulfilling lives.


“It was brilliant to see so many people across the sector, from care providers and education organisations, to practitioners and family carers, joining together to ensure that we are raising the bar when it comes to care provision and I look forward to seeing these high-standards of care being implemented.”


Rachel Wright, trained nurse and parent of a child with profound and multiple learning disabilities, commented:


“The National PMLD Conference presented a fantastic mix of research, inspiring practice and standards that, if employed, can change the lives of those with PMLD. But the best part for me, was that throughout the day the voices and views of those with PMLD and their families were at the centre.”


The Standards can be downloaded from


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