2. 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.

3. 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.

4. 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

5. 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

6. Number of adults within NHS boards in Scotland (2017)
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7. Number of adults with a learning disability known to local authorities per 1000 population (2017)
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8. 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

9. 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.

10. 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.

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

12. 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

14. Increasing Population

15. 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.

16. “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

17. 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

18. 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

19. 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

20. 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

21. 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
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22. 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

23. 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

24. 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.

25. 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

26. The Statistics Release is available on the Internet by accessing the SCLD website: scotland/
NHS Scotland People with Learning Disabilities in Scotland: 2017 Health Needs Assessment Up-date Report.
25/11/2018