Directed Enhanced Services:

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• Directed Enhanced Services
• Guidance to ensure delivery of effective Primary
  Health Care to people with a Learning Disability
• Kay Graham and Trish Bailey
• Community Team Learning Disabilities

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WHAT IS A LEARNING DISABILITY?

• A reduced ability to understand new or
• complex information
• Learning new skills can take longer
• Impaired intelligence and intellectual
• functioning
• A reduced ability to cope independently
• Impaired social functioning  
• Difficulties started before adulthood with
• a lasting effect on development

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ICD 10 Definition

• Mental Retardation is defined as a condition of
  arrested or incomplete development of the mind,
  which is characterised by impairment of skills
  manifested during the developmental period, which
  contribute to the overall level of intelligence,
  e.g. cognitive, language, motor and social
  abilities.

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What is a Learning Disability?

• Learning disability is the official term used in
  the UK to describe people who suffer significant
  disabilities in their day-to-day lives as a
  result of an impairment in intellectual
  functioning. Its onset is before birth or during
  infancy, childhood or adolescence.
• This therefore excludes by definition people who
  suffer restricted intellectual functioning with
  an onset in adulthood because of head injury or
  dementia and people whose intellectual
  functioning is impaired on a transient basis
  because of a mental illness (although people with
  a learning disability may also suffer from a
  mental illness).

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Assessing for a Learning Disability

• Learning disability is usually defined by a
  combination of IQ tests and measurements of
  adaptive behaviour (ability to carry out
  day-to-day tasks).
• Several ways exist for categorising different
  degrees of learning disability, the descriptions
  on the next slide are based on the definitions
  used by the World Health Organisation. However,
  these categories are not discrete groups, and
  many individuals have particular skills in some
  areas. Careful assessment is therefore required
  to identify each individuals abilities, which
  should take account of other disabilities,
  sensory impairments, and psychiatric disorders.

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Categories of Learning Disability
Category I.Q. Range Adaptive Behaviour
Mild 50-70 Holds conversation. Full independence in self-care, practical and domestic care skills. Basic Literacy
Moderate 35-50 Limited language. Needs supervision for self care. Simple practical work with supervision. Usually fully mobile
Severe 20-35 Uses words/gestures for basic needs. Activities need to be supervised. Work only if very structured, marked motor impairment likely.
Profound Intellectual and Multiple Difficulties Less than 20 Cannot understand requests. Very limited gestures, or none. Immobile or severely limited mobility. Incontinent.
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Direct Enhanced ServicesAim of the Presentation

• To give you an understanding of the Direct
  Enhanced Service (DES) for the delivery of
  effective Primary Health Care for people with a
  Learning Disability.
• 2013/14 general medical services (GMS) contract-
  Guidance and Audit requirement for new and
  amended services (Sept 2013)
• To inform you of the Local and National findings
  that led to the need to address the health needs
  of people with a learning disability in this way.
• To offer advice and guidance as to how the DES
  can be met in partnership with other agencies

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Issues to Consider

• It is estimated that about 2.2 of the general
  adult population have a learning disability.
  (Emerson and Hatton 2006)
• The report on Health Inequalities and People with
  Learning Disabilities in the UK 2010,states that
  people with a Learning disability are
• Fifty eight times more likely to die
  prematurely than the general population.
• Three times more likely to die of respiratory
  disease.
• Twenty times more likely to have epilepsy.
• Four times more likely to die from a
  preventable death.
• Likely to have 2.5 times more health problems
  than the general population.
• Significantly more likely to have physical
  disabilities, such as hearing and
• visual impairment, or chronic conditions
  such as chronic heart disease.
• Sixty five per cent more likely to be obese.
• Almost twice as likely to be admitted to
  hospital in any one year.

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• Further issues-
• A significant number of people with a learning
  disability do not access local health care
  services due to a variety of difficulties
  attributed to their learning disability
• Minor health problems that may have the potential
  to develop into more serious conditions can go
  undiagnosed until the individual suffers
  unacceptable pain and discomfort
• People are known to visit their GP at a lower
  rate than the general population but have a
  raised incidence of admission to accident and
  emergency services (Facing the Facts, 1999)

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• The requirements for taking part in the enhanced
• service are as follows
• The practice will liaise with their Local
  Authority to share and collate information, in
  order to identify the patients on their practice
  list who are known to social services primarily
  because of their learning disability in order to
  establish a 'health check learning disability
  register'.
• They will then ensure that each of these patients
  are placed on their QOF learning disability
  register (LD001)
• The practice providing this service will be
  expected to have attended a multi-professional
  education session-
• The minimum expectation of staff attending will
  include the lead general practitioner
• (GP), lead practice nurse and practice
  manager/senior receptionist. Practices may also
  wish to involve specialist LD staff from the
  community learning disability team to
• provide support and advice.
• They will then offer a health check to those
  identified on their practice register.

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National guidance relevant to the project

• Department of Health (2001)Valuing People-A New
  Strategy for Learning Disability for the 21st
  Century
• Mencap (March 2007) Death by Indifference.
• Department of Health (2008) Health care for all
  Report of the Independent Inquiry into access to
  health care for people with Learning
  Disabilities- Sir Jonathan Michael
• Department of Health(2009) Valuing People Now A
  New Three Year Strategy for People with Learning
  Disabilities.
• Healthy Ambitions Looks at the Challenges we
  face across Yorkshire and the Humber over the
  next Decade
• Health Equalities Framework 2013

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• What is the DES?
• This enhanced service is designed to encourage
  practices to identify their patients with a
  learning disability aged 18 and over with the
  most complex needs and offer them an annual
  health check.
• They are to use the Local authority (LA) lists of
  people known to social services primarily because
  of their learning disabilities, to identify
  patients on their registers
• to be offered the checks.
• The rationale is to target people with the most
  complex needs and therefore at highest risk from
  undetected health conditions (usually people with
  moderate to severe learning disabilities).
• Generally LA criteria for access to social care
  services are related to complexity
• of need, although sometimes individuals with mild
  learning disabilities and other additional health
  needs, usually associated with mental health
  needs, will meet
• social services eligibility criteria.
• From the prevalence figures available, it is
  estimated that approximately 240,000 patients
  fall into this category across the country.

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Previous Initiatives Undertaken

• Tailor made screening clinics
• Health garages- local initiative including
  District, Health Visiting
• and Learning Disability Nurses acting as the
  mechanics supporting
• individuals to attend
• Health promotion workshops- Run by
  multi-agency professionals
• from Health and Social Care
• Service development through East Riding Health
  Authority for a
• secondment of a health facilitator to work
  closely with Primary
• Health Care Teams and Community Teams Learning
  Disabilities.
• Research undertaken and a programme of health
  screening
• developed
• Development of Health Action Plans
• Launch of the DES - Extended to March 2014

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Barriers to Accessing Primary Health Care

• Accessibility
• Lack of Knowledge and Understanding
• Health Screening
• Resources and Facilities
• Anxieties and Fears
• Waiting

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Accessibility

• Accompanied visits
• With family member or social care staff
  (acknowledging the findings of Sir J. Michael
  (2008) Making a Difference" in seeing family
  members as partners)
• Followers or Leaders ? Manthorpe Martineau
  (2010) Which looks at the role for Social Care
  Practitioners in annual health checks for adults
  with learning disabilities?
• Associated physical disabilities
• Transport
• Complicated telephone systems
• Physical access
• Times and availability of appointments
• Appointment cards and letters

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Lack of Knowledge and Understanding

• Communication
• Associated Behaviours and Mental Health
• Explanations
• - Consent Best Interest

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Practical Exercise

• If a person didnt understand speech, which of
  the items on your sheet do you think would be
  helpful in finding out if they wanted a drink?
• Number the items from 1-9 with the most helpful
  communication aid at number 1 and the least
  helpful number 9.

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Exercise 1
Means Order of helpfulness
Black and white photograph of a mug 6
Miniature mug 2
Gesture or sign the word drink 4
Partial object or object of reference, mug handle 3
Colour photograph of mug 5
Line drawing 7
A mug 1
The written word Drink 9
Pictorial symbol of a drink 8
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Health Screening

• Availability of Health Screening
• Level of Health Screening
• Consultation Time
• Practicalities of Health Screening
• Fear of Medical Procedures
• Lack of Health Promotion Opportunities

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Resources and Facilities

• Resources
• - local contacts, networks, practitioners
  with
• special interest and information.
• - Health Education packs/booklets
• Facilities

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Anxieties and Fears

• Waiting too long
• Busy environment
• The sound of buzzers and telephones ringing
• Not knowing when its their turn
• The smell of antiseptic
• People at the surgery looking sad, worried or
  crying
• Afraid of the unknown
• Fear of injections or giving blood
• Carers were afraid of others responses, worried
  about what
• could be wrong and were concerned for the
  individuals comfort

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Waiting

• Bored and frustrated
• People stared
• Others lacked understanding
• Overcrowded waiting area
• Not enough room for wheelchair users
• Pleased to find there were some special
• arrangements made

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What Should the Health Screening Tool Cover?

• Practices taking part in the enhanced service
  should base their health checks on the Cardiff
• Health check or a similar protocol
• Well person physical health check - identify and
  review chronic illnesses
• System review
• Monitor behaviour and mental health
• Epilepsy where relevant
• Signpost to national screening programmes
• Address syndrome specific issues
• Address health promotion/education opportunities
• Measurable - for both individual and service
  outcomes
• Relevant physical examinations
• Referral pathways
• Medication review
• Annually
• Acknowledge concerns of carer
• Consider transitional issues
• Ensure inclusion in National Service Frameworks
  and adhere to NICE guidance.

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Pre-disposed Health Problems

• There are some associated health problems
  that have a higher prevalence for
• individuals with a learning disability as a
  result of genetic and socio-economic
• factors. These include
• Heart Disease
• Endocrine and Metabolic Disorders
• Respiratory Difficulties
• Eating and Swallowing Difficulties
• Neurological Disorders
• Cerebral Palsy
• Sensory Impairments
• Communication Problems
• Cancers
• Alzheimers Disease
• Obesity
• Underweight
• Psychiatric illness
• Behaviour Difficulties
• Orthopaedic Problems

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Syndrome Specific Health Issues

• There are specific medical complications with
• syndrome specific conditions like-
• Downs Syndrome
• Prader Willi
• Fragile X Syndrome
• Sturge Weber
• Phenylketonuria
• Neurofibromatosis
• Tuber sclerosis
• Foetal Alcohol Syndrome
• Autism

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Autism and Learning Disability Autism is a
lifelong developmental disability that affects
how a person communicates with, and relates to,
other people and the world around them. It is a
spectrum condition, which means that, while all
people with autism share certain areas of
difficulty, their condition will affect them in
different ways. Asperger syndrome is a form of
autism. NAS website 2013
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Anxiety
What is Autism?
Impairments of Social Interaction
Social imagination
Routines
Lifelong
Social Communication
Executive functioning
Repetitive behaviours
Sensory differences
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Social Imagination Differences

• Hard to instinctively understand of others
• mental state
• Problems with time and consequences
• Not able to predict others behaviour
• Functional not imaginative play/actions
• Difficulty imagining how things might be
• different
• Difficulty transferring skills

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Social Interaction Differences

• Limited instinctive understanding of others
  feelings
• Limited in when (and how) to communicate their
  own
• feelings
• Different instinctive understanding of personal
  space
• Using people as tools
• Difficulty understanding social conventions
  (white lies)

People with autism follow an autistic social
protocol not a neuro-typical social
protocol. Luke Beardon 2012
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Social Communication Differences

• Limited instinctive understanding of others
  interests
• or topic
• Difficulty taking turns
• Literal understanding
• Difficulty with non-verbal communication
• (facial expression, body language, tone)
• Difficulty with question words
• Difficulty in processing language
• May use behaviour to communicate
• Difficulty with metaphors, jokes and sarcasm

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These areas of difference are underpinned by
sensory differences

• Tactile
• Proprioception
• Hearing
• Sight
• Smell
• Vestibular
• Taste

Differences can make people hyper aware, or under
aware at any particular time or in any particular
situation.
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Repetitive and Stereotyped Behaviours Another
important characteristic, in addition to the
triad, is repetitive and stereotyped behaviours.
People may be familiar with the image of children
with autism obsessively lining up toys,
repeatedly spinning objects or flapping their
hands in the periphery of their vision. As
development proceeds however, the focus of
attention may shift from physical activities to
the collection of information.
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• Strengths Neuro-diversity,
• not always a bad thing
• Organised - systemising
• Clear
• Honest
• Highly knowledgeable in their field
• Visual skills
• Accurate
• Helpful
• Resource centres for others
• If a person with autism loves you you will know
  it

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Temple Grandin

• I think in Pictures. Words are like a second
  language to me.
• I translate both spoken and written words into
  full-colour movies, which run like a VCR tape in
  my head.
• When somebody speaks to me, his words are
  instantly translated into pictures.
  Language-based thinkers often find this
  phenomenon difficult to understand.

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Visual Supports

• People with LD/Autism can find the world chaotic
  and confusing.
• Visual supports help them make sense of the
  world.
• People with autism and often people with LD have
• strong visual skills and are good visual learners.

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Visual Information can be

• Objects
• Photographs
• Pictures/drawings
• Symbols
• Written words
• Technology

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Top tips..
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Stuff

• Dont be surprised if the person with autism
  wants to play with or examine your instruments
  closely - remember, the last time they saw a
  doctor, that might have been allowed to help them
  relax, so they will expect it to be the same when
  they see you

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• Appointments
• Try to give the patient with an ASD the first or
  last appointment of the day. People with an ASD
  find waiting around for an appointment extremely
  stressful.
• Waiting in busy places will increase the stress
  levels of an already anxious child or adult. 
• If possible, find a small side room the person
  can wait in.
•  

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Talking to People with ASD
General Rules Keep language clear and simple to
a level each person can understand

• Use a quiet, calm voice sharp voices only in
  emergencies

• Use the persons name first to cue them in and
  include them in the question, even if the carer
  may answer (If they hear their name in a
  conversation that does not include them they may
  become stressed)

• Instructions are best given one step at a time
  and by one person at a time use a doll to
  demonstrate on

• Slow down and allow people more time to process
  language

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• People with an ASD tend to take everything
  literally. Thus, if you say "It will only hurt
  for a minute" they will expect the pain to have
  gone within a minute.
• Make your language concrete and avoid using
  idioms, irony, metaphors and words with double
  meanings, e.g. Pull yourself together." This
  could cause the patient to become confused.
• Give direct requests, eg "Please stand up." If
  you say, "Can you stand up?" this may result in
  the person staying seated or the answer "yes", as
  the person with an ASD may not understand you are
  asking them to do something.
• Check that they have understood what you have
  said - some people with an ASD may speak clearly
  but can lack full understanding.
• Avoid using body language, gestures or facial
  expressions without verbal instructions. These
  may not be understood.
• Ask for the information you need. A person with
  an ASD may not volunteer vital information
  without being asked directly

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Response by patient

•  
• Don't be surprised if the patient doesn't make
  eye contact, especially if he or she is
  distressed. Lack of eye contact does not
  necessarily mean they are not listening to what
  you are saying.
• Allow the patient extra time to process what you
  have said.
• Don't assume that a non-verbal patient cannot
  understand what you are saying.
• People with an autistic spectrum disorder find it
  difficult to understand another person's
  perspective. They may not understand what you
  intend to do, but may expect you to know what
  they are thinking.
• People with an ASD may not understand personal
  space. They may invade your personal space or
  need more personal space than the average person.

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• The three rules of communication
• Mean what you say - say what you mean
• Keep it short and simple
• Wait for a response