This week’s blog is dedicated to event we held back in November, ‘Raising the Bar II’. This is a completely unique event, where families, carers, professionals and advocates are brought together with the same vision. Improving the quality of support and life of people with Profound and Multiple Learning Disabilities (PMLD) through campaigning, sharing information and providing support.
The previous year (2017) ‘Raising the bar’ and the launch of The Core and Essential Service Standards for Supporting People with Profound and Multiple were created to set a precedent of how people with PMLD should be supported. Following their successes it was agreed to do ‘Raising the Bar II’ in a bigger venue with a larger variety of speakers.
The events were produced and organised by Michael Fullerton (CMG), Annie Fergusson (PMLD Link), Joanna Grace (The sensory projects) and Thomas Doukas (Choice Support).
People with PMLD are often overlooked and/or their needs are not understood, this is unacceptable. We are all the different, but equal. Everyone deserves to be heard, have the right to lead fulfilling lives and have access to high quality support consistently. The only difference is we need to work harder to learn the ability to listen and communicate. To understand the needs, likes, dislikes and wishes of people with PMLD.
The agenda was jam packed with keynote speakers including family members of people with PMLD, who have learnt through their loved ones. These speeches were by far the most heart-warming and the most powerful.
Keynote speakers included:
- Rebecca Pender (Family Fund, Glasgow) talked about the Power of the Parent Voice and Changing the Narrative of Collaborative Care
- Elly Chapple (CanDoELLA) about Flipping the narrative – a personal story of hope overcoming adversity in the face of great challenge and tragedy
- 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!
Parallel workshops were available to join throughout the day including:
- 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.
- Scott Watkin & Stephen Kill (SeeAbility)– How can we prove that not all persons with severe or profound intellectual disabilities, should be considered visually impaired?
- 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.
- Joanna Grace (The Sensory Projects)– The Mental Health Needs of People with PMLD. Reviewing research findings into the mental health of people with PMLD.
- 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.
Michael Fullerton, Clinical Director
“Raising the Bar II was the sole national conference last year focused on the support of children and adults with profound and multiple learning disabilities. As the main organiser of the event I was delighted in both the range and quality of the speakers and workshops, as well as the enthusiasm of the delegates. There was double the number of delegates from the previous year, with around 200 people which included family carers, health/education and social care professionals.
The key theme was to follow up and impress the importance of the Core & Essential PMLD Service Standards, throughout the UK and Ireland and it was great to hear that despite the challenges and barriers, that there is excellent work going on in all our countries. The Conference has helped enormously to aid networking, particularly I hope for families, but also in ensuring we can all work closely together to enhance the quality of life of everyone with a profound and multiple learning disability.
We agreed at the end of Raising the Bar II that we would have a detailed review of the Core & Essential Service Standards during 2019 as well as holding another Conference later in the year. This conference date is now set and will be at the same venue (University of Birmingham) on the 25th October 2019. Tickets will be available shortly, so please save the date!”