Palliative Care and People with Learning Disabilities. Linda S McEnhill Coordinator NNPCPLD and Macmillan Network Information and Support Service. What Is Learning Disability?. Department of Health
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Linda S McEnhill
Coordinator NNPCPLD and Macmillan Network Information and Support Service
Department of Health
‘A reduced ability to understand new or complex information (impaired intelligence) and reduced ability to cope independently ( impaired social functioning) which began before adulthood and which has a lasting effect on development.’
a) significantly lower access to screening
b) issues related to care setting
c) ‘over attribution’ of learning disability
especially by mainstream staff
d) subjective quality of life decision making
Whose decision is it anyway?
Mental Capacity Act
How do we ensure ‘informed’ consent?
Majority of carers elderly and have their own health needs (PMLD 18 hrs:20mins.)
‘Understanding Distress in people with severe communication difficulties: piloting and assessing DisDAT’
Regnard C et al
‘Its very difficult having sickness & diarrhoea together- because you don’t know which one to do first!
The doctors call this a ‘side effect’ but [it doesn’t just affect your sides] …it affects your whole body!’
Spoonface Steinberg (BBC)
‘Caring For Kathleen’ By Margaret Fray ( BILD)
Contact: Linda McEnhill
Chair, NNPCPLD & MNISS
PO Box 522, Cambridge CB1 0BL
Phone 01223 573 173
Or at St. Christopher’s Hospice
0208 768 4657