Definition of Learning Disability Damage to the brain which has occurred before the age of 16 and has a lasting effect on development and has contributed to the overall level of intelligence, it may also be accompanied by a physical 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 usually defined in terms of IQ with an IQ of 70 or less indicating learning disability. It is the reduced ability to understand new or complex information and to cope independently. 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

Number of adults within NHS boards in Scotland (2017) 25/11/2018

Number of adults with a learning disability known to local authorities per 1000 population (2017) 25/11/2018

Community Learning Disability Team CLDN- 1 team lead, 6 CLDN’s, 1support worker Learning disability liaison – 1 nurse, soon to be 2 Whitetop Centre – 1 staff nurse Hawkhill day hospital – 2 staff nurses, 3 health care support workers Art therapist Recreation – 2 recreation officers Occupational therapy – 1 team lead,3 specialist OT’s 4 support workers Physiotherapy – 1 team lead, 1 therapeutic exercise officer 2 support workers Music therapist Speech and language – 2 team leads, 6 speech therapists, 2 support workers Psychology Psychiatry 25/11/2018

Role of the Community Learning Disability Nurse Carry out physical and mental health checks to identify any issues and offer continued support to address these. Support people to access primary and acute care services Health promotion and education for clients, carers and care providers. Ensure clients have access to easy read information and/or appropriate resources eg. DVD’s prosthetic body parts with examples of breast and testicular abnormalities. Provide the client with the appropriate level of information to make informed choice. Provide specialist services such as, Sexual and Reproductive Health , Health Clinic for People with Downs Syndrome, Epilepsy Clinic, Nurse Prescribing, Specialist Educational Programmes in College, Anxiety Support, Keeping Safe, Healthy Living Healthy Living, LD Parenting Network. Work in conjunction with the wider learning disability multi disciplinary team.

The Role of the Acute Liaison Nurse To support effective and efficient episodes of acute care for adults with a learning disability. The service exists to promote access to hospital services for people with LD by directly supporting individuals, carers families, influencing strategies and policies and education. In the past the role was primarily an advisory one in promoting the understanding of caring for individuals with a learning disability within the acute care setting. A pro-active role is now taken in identifying and undertaking the educational needs of staff within these clinical settings. This role supports communication between the disciplines and agencies involved with an individuals care, to reduce risk and make reasonable adjustments to the patients care journey. This is essential in developing the services to the needs of the local learning disability population as highlighted through data collection, audit and being involved in strategic developments, which are driven by government initiatives.

Dr Sandra Miller ,acting Consultant Psychiatrist Capacity and consent 25/11/2018

Why we need a palliative care pathway for learning disability Increasing population Poorer health and more complex health issues. Life limiting illness more prevalent High incidence of premature deaths in LD population Health Inequalities and Discrimination Different disease profiles Diagnosis difficult People with Learning Disabilities are more likely to experience complex and severe health conditions. 25/11/2018

Increasing Population

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

“People with learning disabilities were less likely than the comparator group of people without learning disabilities to have access to specialist palliative care services and received less opioid analgesia in their final illness. There deaths were sometimes described as not being planned for, uncoordinated and poorly managed.” CIPOLD

Palliative Care in Learning Disability All people ,regardless of their condition and where they are being cared for, have the right to good end of life care and control over their care – that applies as much to people with learning disabilities as to anyone else. To achieve that, communication and partnership working between the individual , the family and all those involved in their care are even more important in end of life care situations” National End of Life Care Programme 25/11/2018

Barriers to Diagnosis and Early Intervention Person not recognising that they are unwell or there is a change in their body Limited verbal communication. Challenging behaviour and or mental health issues. Limited ability to provide medical history Diagnostic Overshadowing Difficulties in understanding the importance of having routine screenings. Rigid patient appointment systems Waiting rooms / waiting times Attitudes and asumptions

Diagnostic overshadowing This is used to mean the tendency to attribute all behavioural, emotional, physical and social issues to a person's learning disability or a pre-existing condition, while overlooking the possibility that they could be symptoms of other conditions or difficulties. An example would be attributing challenging behaviour to a learning disability when it could be a reaction to abdominal pain, which in turn might be symptomatic of a physical health problem. Youtube 21/05/18

Approaching End of Life Care People with Learning Disabilities are Less likely to be informed of their diagnosis and prognosis. More likely to experience Disenfranchised Dying. Less likely to be encouraged to explore sensitive issues around loss, death and dying A concern that prognostic indicators are often overlooked. 25/11/2018

Solutions Partnership and collaboration ACP Legal Frameworks High Risk Group Equal Access to investigations and Treatments Health Advocacy Coordination of Care Understand the palliative care framework Education Understand your role Reasonable adjustments Joint assessment Identify need Pathway and Key Practitioners 25/11/2018

Aims for the Future Key Practitioners to be identified; this role is held by recognised learning disability champion nurses and palliative care nurses selected from their respective teams and hospices. The aim 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 realise that they have a shared philosophy of holistic and person centered care . This concept will ensure that PWLD who have palliative care needs are recognised and better placed to receive more equitable and robust care.” 25/11/2018

The Benefits Link to Specialist Team. Learning Disability Team and Palliative Care Team Implementing evidence based practice Bridge the gap between theory and practice. To improve quality of care and outcomes for individuals with palliative care needs Improve communication Sharing knowledge and expertise. Joint Assessment 25/11/2018

Gary’s Story Gary is 44 and has a mild learning disability, he lives independently but receives 20 hours support per week. Gary went to see his GP complaining of pain when going to the toilet. The GP diagnosed a UTI and gave him antibiotics. Gary continued to tell staff that he had pain and staff were giving him reassurance that this was due to his infection and would clear up. Gary noticed a lump developing on his penis and he thought that this was also due to the infection and kept thinking it would get better, he never went back to the GP. Gary was finally diagnosed with Penile cancer when a family member noticed a growth the size of a melon. Gary died 18 month later. Urology specialists stated that they had never seen such an advanced case of penile cancer.

Bills Story Bill is 52, he has a moderate learning disability and cerebral palsy, he uses a wheelchair to mobilise. He communicates verbally, but his speech can be difficult to understand. Bill shares a flat with another gentleman and they have support staff 24 hours a day. Bill has recurrent chest infections and is treated regularly with antibiotics. Bill has had a cough for most of his life due to a poor swallow reflex. When Bill is 54 he is diagnosed with lung cancer, he received palliative care and died 3 months later. 25/11/2018

The Statistics Release is available on the Internet by accessing the SCLD website: http://www.scld.org.uk/learning-disability-statistics- scotland/ NHS Scotland People with Learning Disabilities in Scotland: 2017 Health Needs Assessment Up-date Report. https://www.youtube.com/watch?v=xJ7jCgZDmNY https://www.youtube.com/watch?v=oZdZ2taxSIo https://www.youtube.com/watch?v=JZA9cClHqWA 25/11/2018