Learning Disabilities

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					 Lochaber Protected Learning Time
           1 May 2012

   Learning Disability

What is working well just now
and what could be improved?

Who does what in team care?
Learning Disability Team Roles
• The Carer and person with LD
• The GP and Consultant roles in Learning
• Specialist LD Nursing roles
• Celebrating Difference and Diversity of
  being human.
Role of the Learning Disability
   NHS Team in Highland
            The GP Practice team

   Dr Sheena Jones, NHS Highland, Learning
        Disability Consultant Psychiatrist

  Mrs Morag Hughes Learning Disability Nurse

      The family and professional carers
 The GP role in Learning Disability
• Diagnosis and specialist opinions
• Family support and explanations
• Prescribing for acute and long term illness e.g.
• Health Screening as required
• Learning Disability registers ( coding )
• Capacity assessments
• Adult Protection procedures
• Working with carers on acute and chronic illness
 Definition of Learning Disability
• 'a significant lifelong condition which has
  three facets:
  – reduced ability to understand new or complex
    information or to learn new skills;
  – reduced ability to cope independently; and
  – a condition which started before adulthood
    (before the age of 18) with a lasting effect on
    the individual's development'
                             From Same As You?
 Definition of Learning Disability
• In other words:
• 'a significant lifelong condition which has
  three facets:
  – IQ less than 70, with
  – Associated deficits in adaptive function, and
  – Onset before the age of 18 years
 Causes “genetic” and “environmental”
     impaired development of the brain
  before birth ,during birth within childhood

• Genetic disorder: eg phenyketonuria
• Chromosomal:
  Downs Syndrome ,Fragile X
• Cranial malfunction: hydrocephalous
• Congenital factors: maternal disease,
  substance exposure, prematurity,
  perinatal illness
• Psychosocial and environmental factors
    Learning Disability and Learning Difficulty

• Disability              • Difficulty
•   Downs                 •   Blindness
•   Fragile X             •   Deafness
•   Prada Willi           •   Dyslexia
•   Autism 70%            •   Behavioural problems
•   Cerebral Palsy        •   ADHD
•   Foetal Alcohol        •   Autism 30%
    Labelling Positive and Negative
Negative                      Positive
•   Stigma                    • Access to services
•   Oppression                • Reducing uncertainty for
•   Discrimination            • Model for actions and
•   Restrictive                 behaviours by parents
                                and society
•   Adjustment of
                              • Rationing of services to
    behaviour to the labels     those with most need
                              • Individual self
                                understanding of
Peter Howson OBE soldier ,war artist, Scottish painter has
been helped by a diagnosis of Aspergers Syndrome in later
Famous people with
a Learning Difficulty
        The genius and the tragedy
        of Vincent Van Gough we can
        observe today

Self harm self portrait   The bipolar view of a starry night
The Paradox of Standing on the Borderline
  between Learning Difficulty and Disability

• No label to help once you have left school
• Substantial risks to young adults of
• Drink and drugs with poor insight and
  probably a family history
• Poor engagement on “lifestyle issues” when
  young and well.
• GPs and NHS sending letters you cant read!
• Pathways to work is likely best intervention
         Downs Syndrome
• Trisomy 21
• 40% of Downs babies may also have heart
• May have sight and hearing problems
• May have thyroid problems
• May have reduced immune function
• May have GI defects, coeliac disease
  ( gluten)
• May develop dementia earlier than general
         Downs Syndrome
• Slower development but continue to
  learn through out life
• Normal relationships and feelings
  including sex
• Cardiac legacy, obesity , leukaemia
  and earlier dementia are main medical
• 75% of people with Autism have an IQ
  below 70 i.e. Learning Disability
• 10 -15 people with Autism in a practice
  of 5000
• 4:1 male to female ratio
• Abnormal Social Development:
  impaired empathy, difficulty in
  relationships, social rules problem,
  eye contact
• Communication difficulty
  – expressive language and comprehension
• Restricted and repetitive interests and
  behaviour – lining up toys , rigid behaviour
• Aspergers variant – normal IQ and speech
• In Autism social and language development
  is out of keeping with general development
  in contrast to a specific language delay
• Fragile X may have some but not all features
Capacity, Disability and Consent
       Legal Framework

• Adults with Incapacity Act Scotland
  2000 “Welfare Power of Attorney”
• Disability Discrimination Act
• GMC guidance on consent
• Care Programme Approach in mental
• Mental Health Act Scotland 2007
        Learning Disability
        in General Practice
• Learning Disability register
• QoF review framework with recalls for
  epilepsy , BP, thyroid, mental health
• Anticipatory Care Plans ( OOH/
  Unscheduled Care)
• Electronic record sharing – the balance
  between confidentiality and team needs
• Good in theory for planning care and
  patient involvement
• It changes in real life!
• An LD persons normal capacity may
  become overwhelmed by pain.
• Adults with Incapacity Act:
  Welfare Guardian consents to
  necessary treatment if the patient cant
 Clinical Risk and Patient Safety
• “Diagnostic overshadowing”
• Atypical Presentations
• Communication and insight will always be a
  challenge in Learning Disability
• “Challenging Behaviour”
• Sexuality
• Patient physical or sexual abuse
• Complex medical and lifestyle environment
   Family and Professional Carers
 for people with Learning Disability
• Family strain when young parents
• Sibling rivalry for parental attention
• Aging mother with her dementia and
  adult with early onset Downs dementia
• Parental anxiety about their death
• Carers legal agenda to report
  everything and document things for
   Referrals – Learning Disability
• Specific issues that may require input from
  the LD Psychiatrist include the following:
  – Suspected or known mental illness (including
  – Risks associated with mental illness
  – Review of psychotropic medication
  – Significant problem/ challenging behaviours
What could we do better in General Practice
for people with Learning Disability and their

• Getting the registers and coding correct
• Providing continuity for patients “a doctor who
  the person with LD builds up a long term trust
  and relationship”
• The goal of continuity needs management and
  agreement to happen in the chaos of demand!
• Learning from Learning Disability
  GPST teaching, a challenge to modern medical
  thinking !
Further Information for GPs
    Summary of GP Role in LD
•   Diagnosis of new problems
•   Prescribing
•   Disease registers on computers
•   Screening recall clinics for chronic diseases
•   Specialist referrals
•   Capacity assessments
•   GP Training and Education
•   People not boxes to tick!
         Coffee and Tea
        15:30-15:50 Learning Disability Nurse Role
               Morag Hughes, Lochaber Learning Disabilities Nurse

    15:50-16:10                          Challenging Behaviour
                          David Holloway, Mid CHP Professional Lead
                  for Learning Disabilities

16:10 – 16:20             Enhancing Communication – “The Pink
                  David Hughes, Accessible Information Officer NHSH

16:20-16:30                   Summary Discussion and Close

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