Professor Sheila Baroness Hollins 1 Getting it right for people with intellectual disabilities gets it right for everyone
Seeing the person behind the patient: the complexity of intellectual disability John's story- a man with Down syndrome whose parental bereavement was not recognised 2
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Dare to ask What is it like to be this person, at this time, in this place, with these caregivers? And what is it like to be his/her caregiver? Gary's story – a man with cerebral palsy and no speech whose distress at his brother in law’s violence had no easy expression 4
Books Beyond Words Stories in pictures with no words. About things that happen in life. Each person can use the pictures to tell their own story or someone else’s story including how they feel about it 5
To improve access to healthcare Going to the doctor How to share information through pictures Visiting Out-Patients How to empower people through communicating with pictures Seeing a therapist How to share stories and experiences through pictures Picture from: Sonia’s Feeling Sad© Sheila Hollins & Lisa Kopper 6
Copyright Beyond Words8 Read On one’s own ● Some people really do understand pictures better than words ● Some people who can read will still understand more from pictures 7
Reading Together 8
18 add picture A problem shared is a problem halved
Book Club in a Kent Library
11 Listen to the audio clip of book club members discussions
Co-production ‘Nothing About Us Without Us’ 12
Workforce skills provided at different levels of service: 13 Tertiary care Secondary care Primary Care My home and community 13  Not much support
Much more support Tertiary care Secondary care Primary Care My home and community 14
My unasked question What does the person you serve really want in their life? And where are they on the path towards what they want? Each person’s journey of recovery seeks to find new meaning and purpose - supported by people with shared values 15
Yvonne Newbold: ‘The Special Parent’s Handbook’ (2014) “Some health professionals barely listen at all. Others appear to listen, but you soon realise that it was only so they could formulate their reply. Occasionally, we meet someone very special who really listens, and with their whole selves, so they even hear what's left unsaid. They're the ones who make magic happen. As well as absorbing our words, they gain a tangible sense of what our lives are really like.” 16
What does person centred medicine mean to me? Listening to people Treating with respect and as an equal As close to home as possible Working with family and friends who love the person Turning the over 17
Concluding thoughts Compassionate staff work in organisations that care about them too Relationships of respect are at the heart of effective treatment, support and recovery- including long term support Supervision and reflective practice are not optional extras Person centred approaches apply at each stage of the life course- from before birth to death 18
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