Profound and multiple learning disabilities: setting standards of care
Through our work at Achieve together – a social care provider organisation – we knew that people with PMLD lack presence and voice. There was under-representation of this group at all levels with little opportunity for networking and advocacy. Discussions with other partners revealed an appetite nationally for greater networking and sharing of best practice with collaborations between families, advocates, and health, education and social care services. Noting the absence of any formal benchmarking of what ‘good’ looks like for supporting people with PMLD, our nurse-led team collaborated with Dr Thomas Doukas, who was then at Choice Support, Annie Fergusson, then senior lecturer at the University of Northampton and editor of the PMLD Link journal, and Joanna Grace, founder of Sensory Projects, to develop core standards (Doukas et al, 2017). We invited family members, health, social care and education professionals to take part in creating the standards with the guiding principle that r...