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 regardless of age and circumstance, those with PMLD receive excellent support and services consistently and are always respected.

A draft version of the standards was piloted in some residential school and college settings before the final document was launched at a conference in 2017. They were supported by NHS England and former health minister Norman Lamb for providing an important framework for organisations to ensure a clear vision for their support of this population.

Designed to be used by educational, health and social care providers, it was hoped they will be adopted nationally as a way of committing to and self-assessing whether services are providing consistently good practice in all settings. Application of the standards should lead to enhanced quality of life and improved health outcomes for people with PMLD.

The seven organisational standards are based around: leadership; quality; staff development; physical environment; communication; health and wellbeing; and social, community and family life. For each standard, we outline in detail what good practice in this area means and how to make sure it is happening.

There are also standards for individuals providing care or services covering: communication; health and wellbeing; meaningful relationships; social and community life; meaningful time; and transitions (with a focus on transition to adulthood but it could mean any form of transition in a person’s life).

The team worked with self-advocacy group Campaign 4 Change to enable people with PMLD and their families to overcome health, mobility and communication barriers to ensure they have a stronger voice and presence both internally in the organisation and nationally. Meaningful and active engagement in such groups requires meticulous planning, intensive support, protection of body shape and physical health, time, and space to communicate and listen – and the skill to interpret the thoughts and feelings of people involved.

The key aims of this initiative are to raise the profile of this group and ensure their needs and wants are not neglected or taken for granted. For any of us to enjoy a healthy and meaningful life with good mental health, it is important for us to feel valued and included.

We asked Learning Disability England if people with PMLD could present at their national conference in 2020 to show they should be ‘at the table’. The organisation, preparation and presentation took significant planning but we showed that people with PMLD can successfully overcome challenges and barriers to have an active voice. This meant so much to them in terms of quality of life, as well as a sense of pride for their families, and hopefully can change public perceptions. The sister of Samir El-Ziftawy, one of those who presented, said:

“Involvement in Campaign 4 Change has made a huge difference to him personally. I feel it has given him a sense of meaning, and greater chance to socialise with a wider group of people. It gives him a good chance to take part in society and have a good impact on making changes for himself and others with PMLD.”

Our learning on self and peer advocacy has also been shared through a Learning Disability England webinar and a presentation at the IASSIDD European Congress.