Edinburgh and Lothians
Joint Sensory Partnership
(ELJSP)
Tuesday 18 March 2014
Katharine Jackson
Project Development Offic...
EDINBURGH AND
LOTHIANS JOINT SENSORY
PARTNERSHIP
(ELJSP)
2
ELJSP: Background
• RNIB Scotland and Deaf Action: 2 year partnership
(October 2012-March 2015)
• Scottish Government fund...
WHO ARE RNIB SCOTLAND
AND
DEAF ACTION?
4
RNIB Scotland
• is led by blind and partially sighted people
• 80% of our trustees and 95% of our 10,000 members have
a vi...
RNIB's Vision and Mission
"A world where blind and partially
sighted people have the same
rights, responsibilities,
opport...
7
For further information and support
RNIB SCOTLAND
12-14 Hillside Crescent
Edinburgh
EH7 5EA
T: 0131 652 3140
Deaf Action
• is a *deaf-led charity managed by an elected Board of
Directors
*includes deaf British Sign Language users, ...
Deaf Action's Vision and Mission
" Raise awareness of the needs and rights
of deaf people; challenge discrimination;
and p...
10
For further information and support
Deaf Action
49 Albany Street
Edinburgh
EH1 3QY
T: 0131 556 3128
THREE
DIFFERENT
ROLES
11
ELJSP
Delivering Better Services for Ethnic Minorities
Tariq Mahmood
Project Development Officer (Ethnic Minorities)
Full-time: ...
Delivering Better Services for Ethnic Minorities
Raising Awareness:
Improve knowledge and understanding of the impact of s...
Delivering Better Services for Ethnic Minorities
Volunteering:
Establish a network of volunteers to sustain support for
pe...
Delivering Better Services for Ethnic Minorities
For further information, contact Tariq on:
t) 0131 652 3140
(e) tariq.mah...
Supporting Families of Children with Sensory Loss
Agnes Branny
Project Development Officer (Early Intervention: d/Deaf)
Pa...
Supporting Families of Children with Sensory Loss
Tess McNatt
Project Development Officer (Early Intervention: Sight Loss)...
Supporting Families of Children with Sensory Loss
Prior or following diagnosis of
sight and/or hearing loss,
there can be ...
Supporting Families of Children with Sensory Loss
Our friendly family support service
offers
comprehensive support and inf...
Supporting Families of Children with Sensory Loss
Improve Access:
to the services for families of children with sensory lo...
Supporting Families of Children with Sensory Loss
For further information,
contact
Agnes or Tess on:
t) 0131 558 5292
(e) ...
Hidden Sensory Loss: Pilot Project
• Identify, train and co-ordinate up to 20 Sensory
Champions across Edinburgh and the L...
Sensory Loss and Complex Needs
RNIB Scotland and Deaf Action
recognised that people
with complex needs:
• may not be aware...
Sensory Loss and Complex Needs
As a result:
• individuals behaviours may be mistakenly attributed
to learning disability/s...
PREVALENCE OF
SENSORY LOSS
25
UK Statistics: Population
26
UK Statistics: Sight Loss
27
1 in 30
UK Statistics: Sight Loss: Expected to Double
28
1 in 15
Every day
100 people in the UK
start to lose their sight
29
1 in 6 outpatient
appointments in many
hospitals are now for
eye care
30
Children and Sight Loss
2 in every 1000 children are born with a sight loss
31
UK Statistics: Hearing Loss
32
1 in 6
UK Statistics: Hearing Loss: Expected to Increase
33
1 in 4
On average, it takes
people 10 years to
address their hearing
loss
34
By 2030, the World Health
Organisation predicts
adult onset hearing
loss will be ABOVE
diabetes and cataracts
in the top t...
Children and Hearing Loss
90% deaf children born to hearing parents
4 babies are born deaf every day
36
However....
....a significant proportion
of
sight and/or hearing loss
is
related to age
37
Scotland Statistics: Population Growth
38
40%
50+
50+
Sight Loss
1 in 5 people over 75
1 in 2 people over 90
39
Hearing Loss
40% of people over 50
70% of people over 70
40
But....
....lifestyle choices
play
a really
important part
41
Sight Loss
Smoking and obesity
can DOUBLE the
probability of
sight loss
42
Scotland has the SECOND HIGHEST level of
obesity in the developed world (after the USA)
In 2012, 1 in 4 adults (aged 16 an...
Diabetic Retinopathy is the
SINGLE BIGGEST CAUSE
of sight loss
among Scots of working age
44
Lifestyle Choices: Scotland: ...
Listening to any sound at a high volume –
89dB for more than 5 HOURS a week
– can damage hearing permanently over time
45
...
Inserting objects into your ears is unsafe. This includes:
FINGERS, COTTON BUDS, COTTON WOOL, TISSUE
46
Lifestyle Choices:...
SENSORY LOSS
AND
COMPLEX NEEDS
47
Sensory Loss Often Goes Unrecognised
• Barriers to eye and auditory
health care which include:
• Inflexible appointment sy...
Sensory Loss Often Goes Unrecognised
• Eye and hearing loss conditions -
insufficient knowledge
• Visual behaviours misund...
Sensory Loss and Complex Needs
• A person may be unresponsive
• They may also display disturbing, angry, challenging
and/o...
Sensory Loss and Complex Needs
Ask yourself, what role
sensory loss may be playing
in the situation?
51
SENSORY LOSS
AND LEARNING
DISABILITY
52
Sight Loss and Learning Disability
• People with learning disabilities are 10 times more
likely to have serious sight prob...
Hearing Loss and Learning Disability
• As many as 40% of adults with a learning disability
have a hearing loss
• Hearing l...
SENSORY LOSS
AND STROKE
55
Sight Loss and Stroke: Hemianopia
• Not being able to see to either the left or right from the
centre of field of vision
56
Sight Loss and Stroke: Visual Neglect
People may:
• ignore food on one half of their plate
• avoid shaving one side of the...
Hearing Loss and Stroke
Many different experiences!
• Deaf (born Deaf)
• deafened/hard of hearing and in denial of their h...
Hearing Loss and Stroke
• deafened/hard of hearing and have accepted their
hearing loss (may wear hearing aids)
• become d...
SENSORY LOSS
AND
DEMENTIA
60
Sight Loss and Dementia
1 in 5 people over 75
1 in 2 people over 90
61
Hearing Loss and Dementia
• 40% of over 50 year-olds have some form of hearing
loss
• More than 70% of over 70 year-olds h...
Hearing Loss and Dementia
REMEMBER
If the person is over 70,
they will have
some degree of hearing loss
63
SENSORY CHAMPION
TRAINING: BENEFITS
64
• Causes of Sight Loss
• Common Eye Condition
• Other Visual Loss Effects
• The Sight Test
• Environment (Signage, Lightin...
• Causes of Hearing Loss
• Types/Effects of Deafness
• The Hearing Test
• Lipreading/Communication Tactics
• Hearing Aids
...
FIVE LEADING
CAUSES
OF SIGHT LOSS
67
Refractive Error
68
Refractive Error
69
Full Sight
70
Macular Degeneration
71
Cataract
72
Glaucoma
73
Diabetic Retinopathy
74
Leading Causes of Sight Loss in the UK
75
Over 50%
of
sight loss
can be
avoided
Tasks
EIGHT LEADING
CAUSES
OF
HEARING LOSS
77
Leading Causes of Hearing Loss in the UK
• Age-related
• Regular and prolonged exposure to loud sounds
• Medication/drugs
...
Leading Causes of Hearing Loss in the UK
• Head injury
• Benign tumours
• Genetics
• Complications at birth
79
LIPREADING –
THE MYTHS
80
Lipreading:
• Only 25-30% of speech is lip-readable
• Relies on good, clear lip pattern
• Requires immense concentration
81
Lipreading:
• Many letters/numbers look alike on the lips
(baby, paper, maybe)
• Numbers: 13/30 14/40 15/50
• Colours: Red...
WORKSHOP
LIPREADING
83
Lipreading Exercise
Where Do You Stay?
84
Lipreading Exercise
Take these tablets _______ a day
once/twice
85
Lipreading Exercise
I must _______
Buy that chicken
Pay that cheque in
86
Lipreading Exercise
He’s _______ with me
discussed it/disgusted
87
Lipreading Exercise
I _______ do that
must/mustn’t
88
Lipreading:
• Lipreading is tiring
• Involves facial expressions and
body language
• Helps to know the topic being discuss...
SENSORY
CHAMPION ROLE
90
Sensory Champion Role
• S ensory Partnership (ELJSP)
• E nsure sight and hearing assessed
• N ew understanding and skills
...
Sensory Champion Role
Sensory Champions will ensure that:
• individuals with complex needs have
regular eye health and hea...
Sensory Champion Role
• up-to-date sensory information/support
is incorporated into health and social
care plans
• conside...
SENSORY CHAMPION
TRAINING DATES
94
Sensory Champion Training: Learning Disability
Pilot Training: March 2014  Autumn 2014
95
20
People
Sensory Champion Training: Stroke
March 2014  Stroke Study Day  April 2014
96
40
People
20
People
Sensory Champion Training: Dementia
• 6 Post Diagnostic Dementia Support Workers attended a
half day Sensory Loss Awarenes...
For more information, please contact:
Katharine Jackson
Project Development Officer, Hidden Sensory Loss,
Edinburgh and Lo...
Any Questions?
99
Thank You
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RNIB Scotland and Deaf Action: Innovation in improving outcomes for people who have a visual or hearing loss E12

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RNIB Scotland and Deaf Action are presently undertaking pioneering activity in three key areas which includes: Hidden Sensory Loss (Learning Disability, Stroke and Dementia); Ethnic Minorities; and Early Intervention Family Support. This workshop predominantly explores the Hidden Sensory Loss issues for people with complex needs and introduces the innovative Sensory Champion Training Programme which is being delivered across Edinburgh and the Lothians throughout 2014. Contributed by: RNIB

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RNIB Scotland and Deaf Action: Innovation in improving outcomes for people who have a visual or hearing loss E12

  1. 1. Edinburgh and Lothians Joint Sensory Partnership (ELJSP) Tuesday 18 March 2014 Katharine Jackson Project Development Officer Hidden Sensory Loss 1
  2. 2. EDINBURGH AND LOTHIANS JOINT SENSORY PARTNERSHIP (ELJSP) 2
  3. 3. ELJSP: Background • RNIB Scotland and Deaf Action: 2 year partnership (October 2012-March 2015) • Scottish Government funded • To ensure a better quality of life for: • individuals with complex needs • Black Minority Ethnic communities • children and families • Who are all affected by sensory loss 3
  4. 4. WHO ARE RNIB SCOTLAND AND DEAF ACTION? 4
  5. 5. RNIB Scotland • is led by blind and partially sighted people • 80% of our trustees and 95% of our 10,000 members have a visual loss • Based at Hillside Crescent, Edinburgh • Please visit our exhibition stand 5
  6. 6. RNIB's Vision and Mission "A world where blind and partially sighted people have the same rights, responsibilities, opportunities and quality of life as sighted people" "To prevent avoidable sight loss; support independent living; and create an inclusive society" 6
  7. 7. 7 For further information and support RNIB SCOTLAND 12-14 Hillside Crescent Edinburgh EH7 5EA T: 0131 652 3140
  8. 8. Deaf Action • is a *deaf-led charity managed by an elected Board of Directors *includes deaf British Sign Language users, deafened, deafblind and hard of hearing people • at least 51% of our members are d/Deaf • Based at Albany Street, Edinburgh • Please visit our exhibition stand 8
  9. 9. Deaf Action's Vision and Mission " Raise awareness of the needs and rights of deaf people; challenge discrimination; and provide services to promote independence and quality of life" 9 "Working together for an equal and better future for all d/Deaf people"
  10. 10. 10 For further information and support Deaf Action 49 Albany Street Edinburgh EH1 3QY T: 0131 556 3128
  11. 11. THREE DIFFERENT ROLES 11 ELJSP
  12. 12. Delivering Better Services for Ethnic Minorities Tariq Mahmood Project Development Officer (Ethnic Minorities) Full-time: Based at RNIB Scotland 12
  13. 13. Delivering Better Services for Ethnic Minorities Raising Awareness: Improve knowledge and understanding of the impact of sensory loss amongst members of ethnic minority communities Educating: Educate healthcare professionals working with people from ethnic minority communities with sensory loss Supporting: Facilitate effective pathways and access to health care and sensory services for people from ethnic minority communities 13
  14. 14. Delivering Better Services for Ethnic Minorities Volunteering: Establish a network of volunteers to sustain support for people with sensory loss, their families and carers from within their own communities Training Work with people from ethnic minority communities with sensory loss 14
  15. 15. Delivering Better Services for Ethnic Minorities For further information, contact Tariq on: t) 0131 652 3140 (e) tariq.mahmood@rnib.org.uk (sms) 07917 593 154 15
  16. 16. Supporting Families of Children with Sensory Loss Agnes Branny Project Development Officer (Early Intervention: d/Deaf) Part-time: Based at Deaf Action 16
  17. 17. Supporting Families of Children with Sensory Loss Tess McNatt Project Development Officer (Early Intervention: Sight Loss) Part-time: Based at Deaf Action 17
  18. 18. Supporting Families of Children with Sensory Loss Prior or following diagnosis of sight and/or hearing loss, there can be many different professionals involved in a child or young person’s life. Finding support and helpful information can be a challenge for families. 18
  19. 19. Supporting Families of Children with Sensory Loss Our friendly family support service offers comprehensive support and information to all parents and carers of children and young people who are d/Deaf, blind or partially sighted from the time of diagnosis. 19
  20. 20. Supporting Families of Children with Sensory Loss Improve Access: to the services for families of children with sensory loss Work and build partnerships: with other agencies based in Edinburgh and the Lothians Share information: about their work with the families. 20
  21. 21. Supporting Families of Children with Sensory Loss For further information, contact Agnes or Tess on: t) 0131 558 5292 (e) earlyint@deafaction.org (f) 0131 557 8283 (sms) 07775 620757 21
  22. 22. Hidden Sensory Loss: Pilot Project • Identify, train and co-ordinate up to 20 Sensory Champions across Edinburgh and the Lothians who work with people with: • Learning Disability • Stroke • Dementia • To improve routine access to eye care and audiology services 22
  23. 23. Sensory Loss and Complex Needs RNIB Scotland and Deaf Action recognised that people with complex needs: • may not be aware that they have a sensory loss • may not be able to tell others 23
  24. 24. Sensory Loss and Complex Needs As a result: • individuals behaviours may be mistakenly attributed to learning disability/stroke/dementia 24
  25. 25. PREVALENCE OF SENSORY LOSS 25
  26. 26. UK Statistics: Population 26
  27. 27. UK Statistics: Sight Loss 27 1 in 30
  28. 28. UK Statistics: Sight Loss: Expected to Double 28 1 in 15
  29. 29. Every day 100 people in the UK start to lose their sight 29
  30. 30. 1 in 6 outpatient appointments in many hospitals are now for eye care 30
  31. 31. Children and Sight Loss 2 in every 1000 children are born with a sight loss 31
  32. 32. UK Statistics: Hearing Loss 32 1 in 6
  33. 33. UK Statistics: Hearing Loss: Expected to Increase 33 1 in 4
  34. 34. On average, it takes people 10 years to address their hearing loss 34
  35. 35. By 2030, the World Health Organisation predicts adult onset hearing loss will be ABOVE diabetes and cataracts in the top ten ailment list 35
  36. 36. Children and Hearing Loss 90% deaf children born to hearing parents 4 babies are born deaf every day 36
  37. 37. However.... ....a significant proportion of sight and/or hearing loss is related to age 37
  38. 38. Scotland Statistics: Population Growth 38 40% 50+ 50+
  39. 39. Sight Loss 1 in 5 people over 75 1 in 2 people over 90 39
  40. 40. Hearing Loss 40% of people over 50 70% of people over 70 40
  41. 41. But.... ....lifestyle choices play a really important part 41
  42. 42. Sight Loss Smoking and obesity can DOUBLE the probability of sight loss 42
  43. 43. Scotland has the SECOND HIGHEST level of obesity in the developed world (after the USA) In 2012, 1 in 4 adults (aged 16 and above) was a cigarette smoker 43 Lifestyle Choices: Scotland: Sight
  44. 44. Diabetic Retinopathy is the SINGLE BIGGEST CAUSE of sight loss among Scots of working age 44 Lifestyle Choices: Scotland: Sight
  45. 45. Listening to any sound at a high volume – 89dB for more than 5 HOURS a week – can damage hearing permanently over time 45 70dB 25 ft 90dB 80dB Lifestyle Choices: In General: Hearing Loss
  46. 46. Inserting objects into your ears is unsafe. This includes: FINGERS, COTTON BUDS, COTTON WOOL, TISSUE 46 Lifestyle Choices: In General: Hearing Loss
  47. 47. SENSORY LOSS AND COMPLEX NEEDS 47
  48. 48. Sensory Loss Often Goes Unrecognised • Barriers to eye and auditory health care which include: • Inflexible appointment systems • Short appointment times • Reliance on the ability to read
  49. 49. Sensory Loss Often Goes Unrecognised • Eye and hearing loss conditions - insufficient knowledge • Visual behaviours misunderstood • Lack of awareness of the impact of complex needs on vision and hearing
  50. 50. Sensory Loss and Complex Needs • A person may be unresponsive • They may also display disturbing, angry, challenging and/or frustrating behaviour 50
  51. 51. Sensory Loss and Complex Needs Ask yourself, what role sensory loss may be playing in the situation? 51
  52. 52. SENSORY LOSS AND LEARNING DISABILITY 52
  53. 53. Sight Loss and Learning Disability • People with learning disabilities are 10 times more likely to have serious sight problems than other people • 6 in 10 people with learning disabilities need glasses and often need support to get used to them 53
  54. 54. Hearing Loss and Learning Disability • As many as 40% of adults with a learning disability have a hearing loss • Hearing loss affects up to 75% of young people with Down Syndrome 54
  55. 55. SENSORY LOSS AND STROKE 55
  56. 56. Sight Loss and Stroke: Hemianopia • Not being able to see to either the left or right from the centre of field of vision 56
  57. 57. Sight Loss and Stroke: Visual Neglect People may: • ignore food on one half of their plate • avoid shaving one side of their face • apply make-up to one side of their face 57
  58. 58. Hearing Loss and Stroke Many different experiences! • Deaf (born Deaf) • deafened/hard of hearing and in denial of their hearing loss (have done nothing about it or weren't aware) • deafened/hard of hearing and have had difficulties in accepting their hearing loss (may wear hearing aids) 58
  59. 59. Hearing Loss and Stroke • deafened/hard of hearing and have accepted their hearing loss (may wear hearing aids) • become deafened/developed a hearing loss as a result of stroke • Auditory Processing (hearing aids of no use) 59
  60. 60. SENSORY LOSS AND DEMENTIA 60
  61. 61. Sight Loss and Dementia 1 in 5 people over 75 1 in 2 people over 90 61
  62. 62. Hearing Loss and Dementia • 40% of over 50 year-olds have some form of hearing loss • More than 70% of over 70 year-olds have some form of hearing loss 62
  63. 63. Hearing Loss and Dementia REMEMBER If the person is over 70, they will have some degree of hearing loss 63
  64. 64. SENSORY CHAMPION TRAINING: BENEFITS 64
  65. 65. • Causes of Sight Loss • Common Eye Condition • Other Visual Loss Effects • The Sight Test • Environment (Signage, Lighting, Colour and Contrast) • Assistive Equipment • Sensory Champion Toolkit 65 Sensory Champion Training: Sight Loss
  66. 66. • Causes of Hearing Loss • Types/Effects of Deafness • The Hearing Test • Lipreading/Communication Tactics • Hearing Aids • Assistive Equipment • Sensory Champion Toolkit 66 Sensory Champion Training: Hearing Loss
  67. 67. FIVE LEADING CAUSES OF SIGHT LOSS 67
  68. 68. Refractive Error 68
  69. 69. Refractive Error 69
  70. 70. Full Sight 70
  71. 71. Macular Degeneration 71
  72. 72. Cataract 72
  73. 73. Glaucoma 73
  74. 74. Diabetic Retinopathy 74
  75. 75. Leading Causes of Sight Loss in the UK 75 Over 50% of sight loss can be avoided
  76. 76. Tasks
  77. 77. EIGHT LEADING CAUSES OF HEARING LOSS 77
  78. 78. Leading Causes of Hearing Loss in the UK • Age-related • Regular and prolonged exposure to loud sounds • Medication/drugs • Infection/disease (eg rubella) 78
  79. 79. Leading Causes of Hearing Loss in the UK • Head injury • Benign tumours • Genetics • Complications at birth 79
  80. 80. LIPREADING – THE MYTHS 80
  81. 81. Lipreading: • Only 25-30% of speech is lip-readable • Relies on good, clear lip pattern • Requires immense concentration 81
  82. 82. Lipreading: • Many letters/numbers look alike on the lips (baby, paper, maybe) • Numbers: 13/30 14/40 15/50 • Colours: Red, Green, Grey 82
  83. 83. WORKSHOP LIPREADING 83
  84. 84. Lipreading Exercise Where Do You Stay? 84
  85. 85. Lipreading Exercise Take these tablets _______ a day once/twice 85
  86. 86. Lipreading Exercise I must _______ Buy that chicken Pay that cheque in 86
  87. 87. Lipreading Exercise He’s _______ with me discussed it/disgusted 87
  88. 88. Lipreading Exercise I _______ do that must/mustn’t 88
  89. 89. Lipreading: • Lipreading is tiring • Involves facial expressions and body language • Helps to know the topic being discussed 89
  90. 90. SENSORY CHAMPION ROLE 90
  91. 91. Sensory Champion Role • S ensory Partnership (ELJSP) • E nsure sight and hearing assessed • N ew understanding and skills • S upport people with ld, stroke, dementia • O phthalmology and audiology regularly accessed • R aising awareness, provide on-going assistance • Y our intervention is valuable – and vital! 91
  92. 92. Sensory Champion Role Sensory Champions will ensure that: • individuals with complex needs have regular eye health and hearing checks • sight and/or hearing loss is identified • prevention of further sight/hearing loss where possible 92
  93. 93. Sensory Champion Role • up-to-date sensory information/support is incorporated into health and social care plans • consideration is taken as to the impact that the environment may have on sensory loss • awareness is raised between behaviours associated with complex needs and sensory loss 93
  94. 94. SENSORY CHAMPION TRAINING DATES 94
  95. 95. Sensory Champion Training: Learning Disability Pilot Training: March 2014  Autumn 2014 95 20 People
  96. 96. Sensory Champion Training: Stroke March 2014  Stroke Study Day  April 2014 96 40 People 20 People
  97. 97. Sensory Champion Training: Dementia • 6 Post Diagnostic Dementia Support Workers attended a half day Sensory Loss Awareness Session in December 2013 • February 2014: Working in conjunction with VILD looking at finalising a 2 day training course to be delivered on 13 and 14 May in Edinburgh 97
  98. 98. For more information, please contact: Katharine Jackson Project Development Officer, Hidden Sensory Loss, Edinburgh and Lothians Joint Sensory Partnership (ELJSP) RNIB (Royal National Institute of Blind People) and Deaf Action 12-14 Hillside Crescent, Edinburgh EH7 5EA Tel: 0131 652 3140 Mobile: 07557 458 786 Email: katharine.jackson@rnib.org.uk Website: www.jointsensorypartnership.com 98
  99. 99. Any Questions? 99 Thank You

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