Definition of Learning Disability Learning Disability (LD) is “a state of arrested or incomplete development of the mind, which includes significant impairment of intelligence and social functioning”. It is the reduced ability to understand new or complex information and to cope independently. This would have occurred before adulthood and has a lasting effect on development and has contributed to the overall level of intelligence, i.e cognitive, communication, motor and social abilities. The level of disability varies greatly between one person and another and may or may not be accompanied by a physical disability. Learning disability is usually defined in terms of IQ levels with an I.Q of 70 or less indicating learning disability / Intellectual disability Dyslexia or any other educational difficulty, adult acquired head injury and cognitive decline due to psychosis are not learning disabilities.

Categories of learning disability Mild LD Most common, I.Q. Range from 50-69 Delayed processing and speech – able to use simple everyday speech Full independence – personal care, practical and domestic tasks Difficulties with reading and writing Capacity to undertake unskilled or semi skilled work Problems with social or emotional immaturity Rarely organic aetiology.

Moderate LD I.Q range 35-49 Limited comprehension and communication skills Prompting or support with personal care Can carry out simple practical tasks but may need support and guidance Majority organic aetiology Epilepsy and physical disability common

Profound and Multiple LD (PMLD) I.Q less than 20 but difficult to measure, mental age of less than three years Severe limitation in ability to understand or comply with requests or instructions Little or no self care skills Often require a modified diet and full assistance to eat and drink or have entral feeding Often require continence aids Often have little or no verbal communication, some people can sometimes use simple Maketon Often have a severe physical disability Palliative diagnosis

Number of adults with a learning disability known to local authorities per 1000 population (2017) 09/05/2019

Health Inequalities National statistics estimate that approximately 5.2% of the national population has a learning disability with Dundee having the highest number of people with a LD known to Local Authority. People with a LD have poorer health than the general population much of which is avoidable. Inequalities often start in early life as people with a LD face barriers in accessing timely, appropriate and effective health care. People with a LD are 58 times more likely to die before the age of 50 than the general population. Confidential inquires into premature deaths of people with a LD showed that they are 3 times as likely as people within the general population to have a death classified as potentially avoidable through the provision of good quality health care. They are also more likely to have problems in having their needs identified and appropriate care provided. Their families or carers also reported having problems getting their views heard. https://www.youtube.com/watch?v=xJ7jCgZDmNY

Why we need a palliative care pathway for learning disability Increasing population and people with a learning disability are living longer High incidence of premature deaths in LD population Health Inequalities and Discrimination Different disease profiles Diagnostic overshadowing Profound and Multiple Learning Disability 09/05/2019

Hopes for the Future Key Practitioners to be identified; recognized learning disability champion nurses and palliative care nurses selected from their respective teams and hospices. The hope is for the team to meet regularly to develop, skills, knowledge and confidence within a framework of partnership and collaborative working and for practitioners to come to realize that they have a shared philosophy of holistic and person centered care . This concept will ensure that PWLD who have palliative care needs are recognized and better placed to receive more equitable and robust care. 09/05/2019