Professionals and parents came together at the UK’s only national event focusing on people with profound and multiple learning disabilities. Jo Grace was there
The Great Exhibition Hall at Birmingham University buzzed with excitement, as 200-plus exceptionally passionate people flooded it with one mission in mind: to raise the bar with regards to what best practice looks like for people with profound and multiple learning disabilities (PMLD).
The Raising the Bar National PMLD Conference is the only national UK event focusing on the support of this group of people. It brought together speakers, exhibitors and delegates from across the UK and beyond to inspire and promote good practice.
Their tool for this bar raising? A document written by a dedicated group of people that describes in 13 bullet points what this care might look like – Supporting People with Profound and Multiple Learning Disabilities: Core and Essential Service Standards – which was first issued in 2017.
The hope is that services and settings that host people with PMLD will use the document as a tool to guide their provision and that those inspecting such settings might use it to judge how they are doing.
Unlike other events, this was not just professionals talking to professionals or parents to parents, it was not just education, just adult care, just the medical world – it was everyone working together for a common goal.
Seeing the whole person
On the main stage, Andrea Sutcliffe, outgoing head of the Care Quality Commission and newly appointed chief executive of the Royal College of Nursing and Midwifery, began the day calling for more learning disability nurses and underlining how much people matter.
She was followed by family carer Jeanne Carlin who told delegates: “Consultants saw my daughter organ by organ – it was only when they began to see her as a whole person that her life was saved.” She spoke about developing a holistic approach to care for her daughter Erica.
From Australia, Sheridan Forster, a researcher and speech pathologist, challenged the room with the notion of subtle ableism hidden in presumed competence. Forster was closely followed by Professor Melanie Nind (pages 20-21), famous in the PMLD world for her role in the development of intensive interaction, talking about the importance of belonging.
By this point you would be forgiven for thinking the full content of the day had been covered, but that was just the first hour of an extraordinarily packed programme of keynote speeches and interactive workshops.
Like the organisers of the event themselves, the speakers worked in a voluntary capacity and the whole day operates on a not-for-profit basis. It is not a job for anyone and it is not for making money – it is solely for Raising the Bar.
Everyone there and the many people following the event through social media – its hashtag #RtB3 trended in the top 100 hashtags in the UK on the day – are working towards a common goal of a better future for people with profound and multiple learning disabilities.
Creative powers, strong stories
In the afternoon, delegates were joined by actress and comedian Sally Phillips, who lent her celebrity status to raise the profile of the standards.
Inspirational presentations were given by Frozen Light, who discussed how they created high-quality immersive theatre, and Rachel Wright from Camp JoJo, who talked about the lengths they go to enable people with complex disabilities to enjoy a camping trip. I told delegates about my award- winning Sensory-being Project, which sees people with profound disabilities meaningfully co-designing sensory resources with designers.
All gave us glimpses of how high the bar could be. Parent Emma Murphy and adult care professional Erren Wheatland showed how rich the lives of people with profound disabilities could be if they were provided for correctly. As Murphy showed us photo after photo of her son, “happy little Hugh”, she reminded us that she has had to repeatedly argue for his right to life and justify that his was a life worth living.
The images of adventure, joy, engagement, connection and community stood in stark contrast to Alison Pettit’s presentation about her son Timmy.
Failings in provision for Timmy meant that when he developed a rare disease, his daily cries of agony went unheard for two and a half years, dismissed as “behaviour”.
Pettit and her wife fought desperately to be heard but lost the right to care for Timmy, were reported to social services for talking to him about his impending death and were, ultimately, unable to protect him from a painful feeding regime that authorities at the time insisted was in his best interest.
Pettit stood alone at the lectern, her voice was clear, brave and unwavering, while those listening struggled to keep their emotions under control.
The bar must be raised. Together we will raise it.
- Supporting People with Profound and Multiple Learning Disabilities: Core and Essential Service Standards is free from www.pmldlink.org.uk
t @PMLDlink, #RtB3
f www.facebook.com/ groups/138188023527963/
Jo Grace, is founder of The Sensory Projects (www.thesensoryprojects.co.uk) and a sensory engagement and inclusion specialist, trainer, author and TEDx speaker
