Death to Indifference meeting the end of life care needs of People with a Learning Disability

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Death to Indifferencemeeting the end of life
care needs of People with a Learning Disability
Anne Hutchinson Health Facilitation
Coordinator Carolyn Western Transition Liaison
Nurse Ann.hutchinson_at_shsc.nhs.uk Carolyn.western_at_
shsc.nhs.uk
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What is a Learning Disability?

• a state of arrested or incomplete development of
  mind (WHO)
• The international criteria to identify a learning
  disability are-
• Intellectual Impairment
• Social or adaptive dysfunction
• Early onset.

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Rebeccas Story

• Key factors
• Knowing who Rebecca was
• Death with dignity plan
• Care coordination
• Working in partnership

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What do we know about people with a learning
disability needing End of Life Care.

• An increased risk of early death
• Late Presentation of illness
• Diagnostic overshadowing
• Problems with identifying symptoms
• DH (2007) Death by Indifference

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What do people with a learning disability need?

• The Same as You with extra support to make sure
  that people get the care they need when they
  need it
• Collect the data and information necessary to
  allow people with a learning disability to be
  indentified by your service.
• Track and monitor their pathways of care. i.e.
  Preferred Place of Care (accessible version)
• Support with Making Decisions The Mental
  Capacity Act (2005)

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What You Can Do?

• Be aware of who has a learning disability
• Know who and where to get information from to
  support the person
• Work in partnership with learning disability
  specialist health services if needed

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Working together

• The Sheffield Case Register provides information
  about who has a learning disability to the GP
  practices and the Sheffield Teaching Hospitals
• The Community Learning Disability Teams can
• provide advice to services and support to
  individuals and families where appropriate,
• work in partnership with health services to
  give good healthcare to people with a learning
  disability.

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Community Learning Disability Teams

• South (Health and Social Care professionals )
• Lightwood House 0114 2716552
• North (Health professionals)
• The Yews 0114
  2716101
• Ivy Lodge 0114
  2716982
• North Learning Disabilities
• Social Work Team 0114 2037095
• Carolyn Western Transition Liaison Nurse
• Telephone [phone]