MPF

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Multi Professional Forum Sept 15th 2008 Title
Supporting people with Learning Disabilities to
access Health Services
Adult Protection
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What do we know already?

• An increased risk of early death
• A higher prevalence of certain medical conditions
• Part of a disadvantaged group of society
• Have unhealthy lifestyles

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How about these for shocking statistics?

• 40 of people with learning disabilities
• (PWLD) are affected with hearing difficulties

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• 30 of people with learning disabilities
• (PWLD) experience problems with their vision

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• Cancer is 50 higher in people with learning
  disabilities when compared to the general
  population.

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• 22 of people with learning disabilities have
  epilepsy compared with 1 of the general
  population, this increases to 30 in people with
  profound and multiple learning disabilities

Royal College of Nursing 2006. Meeting the Health
Needs of People with Learning Disabilities.
Guidance for Nursing Staff. RCN London
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How about these for shocking statistics?

• Only 10 of ladies with learning
• disabilities take up Breast Screening

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• Only 24 of women with learning disabilities take
  up the opportunity of Cervical Smear Screening

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• Dysphagia affects 52 of people with learning
  disabilities and is linked to early death rates

Ref Emerson E, Hatton C, Elliott J (2004).
Key Highlights of Research Evidence on the
Health of People with Learning Disabilities. Insti
tute for Health Research Lancashire University
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How about these for shocking statistics?

• Coronary Heart Disease is the 2nd most common
  cause of death in people with learning
  disabilities

Ref Emerson E, Hatton C, Elliott J (2004). Key
Highlights of Research Evidence on the Health of
People with Learning Disabilities. Institute for
Health Research Lancashire University
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How about these for shocking statistics?

• Gum disease is 86 more likely in people with
  learning disabilities

Royal College of Nursing 2006. Meeting the Health
Needs of People with Learning Disabilities.
Guidance for Nursing Staff. RCN London
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How about this for a shocking truth?

• Diabetes often goes undetected in people with
  learning disabilities

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• People with learning disabilities are often
  medicated unnecessarily because they have
  behaviours which challenge!!
• Diagnostic overshadowing is a reality as people
  with learning disabilities are seen as being
  disabled first and their real medical problems
  are overlooked!!

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• BARRIERS TO HEALTHCARE
  
• Poor quality physical environments
• Refused screening because of a lack of
  specialist equipment
• Training issues eg 75 of GPs report that they
  had no
• training in supporting people with LD. (Treat
  me Right
• Mencap 2004).
• Mental health issues
• Epilepsy
• Long term health problems
• High physical support needs

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• VALUING PEOPLE (2001)
• A major driving force in changing the way
  services are delivered to people with LD in the
  UK. It identified targets that aim towards
  improving the health status for this group of
  people, including addressing the issues relating
  to inequalities in and access to good quality
  health care.
• The paper identified evidence that in comparison
  to the general population, people with LD are
  less likely to
• Receive regular health checks
• Have positive health outcomes, particularly those
  with complex needs even fewer people in
  this group access health screening services
• Have coordinated care packages e.g. between
  primary health care specialist services

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What is already being done?

• Some health professionals are already giving a
  fair and
• equitable service although much more needs to be
  done
• Communication boxes
• Training for Nurse Learners
• Plans to develop a means of delivering training
  
• awareness to others on a broader scale.
• Health Check Assessments and Health Action Plans

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• HEALTH WELLBEING
• Health Check Assessments
• - A tool that helps to determine if an individual
  requires
• a Health Action Plan not everyone will!
• - A means by which health needs can be identified
  
• Treated where necessary
• - A questionnaire format with 3 main functions
  i.e.
• A service obligation - a duty of care to check
  the health status of people who use our services
• To support individuals to make choices about
  their health lifestyle
• To provide us with locally based information

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Health Check Assessment



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• HEALTH ACTION PLANS
• What needs to be done, who by,
• when the outcomes for the individual
• HEALTH SUMMARY PROFILE
• this will travel with the
• individual

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Extract from a Health Action Plan



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• MORE BARRIERS TO HEALTH CARE ARE
• Challenging behaviour
• Communication difficulties
• These two barriers are very often linked as
  difficulty in communicating often leads to
  behaviour which challenges us! Its important to
  be aware of this so you can either
• Avoid a situation
• Prevent a situation form escalating
• Deal effectively with an incident that is
  already occurring

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• Studies show that 50 90 of all people who
  have LD have
• Communication difficulties.
• 80 of people with severe LD do not acquire
  effective speech
• A person may have fluent speech yet lack of
  understanding
• A person may have the ability to understand
  information but
• be unable to relay it
• (Foundation for People with LD 2000)

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Communication
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Communication Difficulties

• Sentence length. Some people only respond to 1 or
  2 key words in a sentence.
• Abstract concepts may not be understood (e.g.
  time)
• Some grammar is difficult (e.g. negatives,
  pronouns)
• Vocabulary may be limited
• Question words are difficult (particularly how
  why)
• Symbolic Representation may not be fully
  developed
• Only literal language is understood

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Literal Language
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Use All Means of Communication

• Speech
• Signing Makaton
• Gesture and Facial expression
• Photos
• Symbols
• Objects

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Further Considerations

• Use the persons name to get their attention
  before you start speaking
• Always look at the person themselves and check it
  is OK to talk to their carer
• Get information from supporters on their
  communication abilities
• Consider offering the first appointment slot
• Consider offering double consultation time
• Explain what you are doing at the beginning and
  throughout the consultation

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The Bigger Picture of Health Inequalities

• Disability Discrimination Act 1995
• Human Rights Act 1998
• Care Standards Act 2000
• Carers Legislation
• Valuing People White Paper 2001
• Disability Discrimination Act 2005
• Mental Capacity Act 2005
• Our Health, Our Care, Our Say - 2006
• Comprehensive Advisory Frameworks to prevent
  discrimination

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Reports, Inquiries and Consultations

• Mencap Report 2004 - Treat me Right
• Disability Rights Commission Report 2006 Equal
  Treatment Closing the Gap
• Mencap Report 2007 - Death by Indifference

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Death by Indifference - 2007

• People with a learning disability are seen to be
  a low priority
• Many healthcare professionals do not
• understand much about LD
• properly understand and consult with families and
  carers of people with LD
• understand the law around capacity and consent to
  treatment
• Health professionals rely inappropriately on
  their estimates of a persons quality of life
• The complaints system is often ineffectual,
  time-consuming and inaccessible

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Reports, Enquiries and Consultations

• Healthcare for All 2008
• Valuing People Now 2008

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Action on Health Inequalities in the Isle of Man?

• To our knowledge there have been no official
  reports on the island which would identify if
  this was a problem or not
• Disability Discrimination Act 2006 this is not
  due to be implemented until late 2011/early 2012
• The Isle of Man Learning Disability Strategy
  2007-2012 Living Life to the Full
• Draft Health Strategy
• Areas of excellent practice

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Way Forward from Bigger Picture Perspective?

• Management and Government to consider the
  applicability of the reports to the island and to
  implement any recommendations which are seen as
  necessary if health inequalities are to be
  reduced and unnecessary suffering avoided
• A Multi-Disciplinary Forum to be set up to
  facilitate this process
• The Health Strategy to include a specific section
  which deals with the health needs of people with
  learning disabilities and how these are to be met

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Recommendations to Include

• Health professionals individually becoming more
  aware of the issues and implementing good
  practice in their own area of work
• Across the board reasonable adjustments to make
  Health Services equally accessible to people with
  Learning Disabilities eg
• Longer and more accessible appointments
• Accessible information
• GPs to ensure annual health checks are carried out

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Recommendations to Include

• Mandatory Learning Disability training for Health
  Professionals
• Inspectors and regulators extending their
  monitoring of the standard of general health
  services provided to specifically address the
  needs of people with Learning Disabilities
• Better data collection to identify people with
  learning disabilities

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PERSON CENTREDNESS
CORE VALUES
SAFETY
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Experience of using health services

• No Community Learning Disability Teams
• Access to GPs and other health care professionals
• Assumptions and attitudes
• Training and skills
• Poor quality of care

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Why change now?

Quote from Valuing People Now D.O.H. 2007
The NHS has to develop real strategies to support
people with Learning Disabilities to get a fair
and equitable health service If we fail to
meet these standards , this health service may be
found to be in breach of the Disability
Discrimination Act


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The Disability Discrimination Act

• Part II
• Section 4 (1) It is unlawful for a provider pf
  services to discriminate against a disabled
  person-
• (c) In the standard of service which it provides
  or the manner in which it is provided to the
  disabled person
• Section 6 (4) Where an auxiliary aid or service
  (eg the provision of information on audio tape or
  of a sign language interpreter would-
• Enable a disabled person to make use of a
  service
• To facilitate the use by a disabled person of
  such a service

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• The inquiry's recommendations include
• reasonable adjustments for people with a learning
  disability by health services, including regular
  health checks and liaison with staff across
  services
• a confidential inquiry into the avoidable deaths
  of people with a learning disability and a
  permanent public health observatory to promote
  good practice
• compulsory learning disability training for
  healthcare professionals
• the involvement of family/ carers in care and
  treatment
• better inspection of how the NHS treats people
  with a learning disability
• better data collection to identify people with a
  learning disability

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