Raising the Bar

Thomas Doukas and Annie Fergusson share what happened at the second Raising the Bar, National PMLD conference which took place at the University of Birmingham on 2nd November 2018.

Following the launch of the co-produced Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities in 2017, ​when the 1st conference was not only oversubscribed but a great success, the need and drive to create a better life for the people we care about was palpable. In the year since the launch, everyone has been working hard to see those changes happen. With this in mind and the continuous interest shown online at the Community of Practice Facebook Group we established to keep in touch, this 2nd conference was a much bigger event and a triumph again!

The day was packed with keynote speakers and workshops and an unprecedented number of families members of people with profound and multiple learning disabilities (PMLD) were involved and attended the conference — and this was the strongest feature of the conference.

Keynote speakers included:

• Simon Duffy (Citizen Network) talking about everyone – yes everyone – being a citizen in society
• Rachel Wright (Born at the Right Time) with Trev and Steve, and Jane Thakoordin raising expectations in their work with people with PMLD (Go big or go home!)
• Helen Laverty (MBE, University of Nottingham) focusing on health matters (living, learning, working or having fun: my health matters & you best not forget it)
• Rebecca Pender (Family Fund, Glasgow) talked about the Power of the Parent Voice and Changing the Narrative of Collaborative Care
• Ruth Ryan from University of Limerick about moving forward in supporting persons, living with PIMD, in decision making
• Elly Chapple (CanDoELLA) about Flipping the narrative – a personal story of hope overcoming adversity in the face of great challenge and tragedy
• Rachel Gale about Exploring consent with young adults with profound and multiple learning difficulties
• Alison Cooper (Parity for Disability) about the aims and objectives for better Quality of Life for people with PMLD
• Sandra Archibald (parent) about a Cooperative Working Model of Support
• Flo Longhorn (Flo Publications) showed us that When you wish upon a star ~ you WILL raise the bar!

A series of parallel workshops sharing the influence of the PMLD Standards ‘in action’ ran across the day:

• Annie Fergusson (PMLD Link) & Sage Savage (Phoenix School) – The use of aromatherapy and massage for individuals with PMLD. A review of aromatherapy explored potential benefits; responding to health and wellbeing needs/priorities; creating meaningful opportunities for learning; promoting individuals with PMLD to have a voice and take the lead.
• Julie Calveley (Intensive Interaction Institute)– Communication and Intensive Interaction: The use of video for training, observation, reflection and identifying outcomes and progress.
• Siobhán Brennan (The University of Manchester) – Supporting people with PMLD and sensory needs.
• Sarah Hall (Willows Sensory Services)– I don’t want to go to the dentist. Recognise and respond to the holistic vulnerability of people with PMLD.
• Scott Watkin & Stephen Kill (SeeAbility)– How can we prove that not all persons with severe or profound intellectual disabilities, should be considered visually impaired?
• Eleanor Gibson (Phoenix School) – Sound Spirituality. Exploring spiritual experience for people with PMLD as relational consciousness: our ability to relate to ourselves, to others, to the world around us and to the unknown.
• Erren Wheatland & Katie Reid (CMG) – Supporting the Complex Health Needs of people with PMLD in social care. Focusing on the LeDeR programme reporting that the mean life expectancy for someone with PMLD is just 41 years of age.
• Gwenne McFadzean (MacIntyre) – Let’s be social! Looking at the evolution of intensive interaction at MacIntyre with a focus on the practical application of this process.
• Joanna Grace (The Sensory Projects)– The Mental Health Needs of People with PMLD. Reviewing research findings into the mental health of people with PMLD.
• Les Staves (Very Special Maths) – The roots of learning and living. Celebrating the value of working at sensory beginnings and sharing the joys of nurturing growth.
• Janet Gurney (Us in Bus) – “The Power of Being Heard: Everyday Intensive Interaction”. Looking at practical ways to use Intensive Interaction to ensure that being heard can be part of everyone’s experience – and the difference it can make.
• Lila Kossyvaki, Helen Bradley, Martin Goodwin, Nancy Beesley & Emma Brough (University of Birmingham) – Applying the PMLD Core & Essential Service Standards at Higher Education (HE): the case of the University of Birmingham S/PMLD programme.

The organisers (all volunteers): Annie Fergusson (PMLD LINK), Michael Fullerton (CMG), Joanna Grace (The Sensory Projects) and Thomas Doukas (Choice Support) welcomed the delegates and explained about the journey of this initiative and its importance for people with PMLD and their families.

People with profound and multiple learning disabilities are, like everyone else, unique individuals. But sometimes are excluded from being full citizens in their community because their needs are often not understood. These service standards were co-produced by a group of families, carers, sector professionals and experts interested in improving the quality of support and life of people with profound and multiple disabilities.

The aim of the standards is to ensure people with profound and multiple learning disabilities, of any age, have access to consistent high-quality support throughout their lives​ and wherever they live. The standards will help services to ensure people have full citizenship rights and acceptance/respect within their social circles and local communities. We aim for each person to be supported (with regard their likes and wishes), to participate and be included in their communities and to achieve citizenship in a meaningful manner. These standards are designed to be used by educational, health and social care providers and commissioners of these services – to work together to ensure consistently good practice in all settings and respect the right of people with profound and multiple learning disabilities to be included.

People from across the UK and abroad, joined Raising the Bar II to hear about the progress of the ​PMLD Standards and to learn from inspirational speakers from a range of backgrounds. The ​conference feedback was overwhelming and we cannot help but feel really proud to have hosted this event.

We will carry on running the Community of Practice Facebook Group and ​continue to publish articles about the PMLD Standards in the journal, PMLD Link.

We plan to host a 3rd conference next year and we also want help to review the standards for next year’s event, so please get in touch if you want to be involved and share your ideas.

Check out the website and journal at: www.pmldlink.org.uk

Email Thomas Doukas at: Thomas.Doukas@choicesupport.org.uk