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

1. Edinburgh and Lothians
Joint Sensory Partnership
(ELJSP)
Tuesday 18 March 2014
Katharine Jackson
Project Development Officer
Hidden Sensory Loss
1

2. EDINBURGH AND
LOTHIANS JOINT SENSORY
PARTNERSHIP
(ELJSP)
2

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. WHO ARE RNIB SCOTLAND
AND
DEAF ACTION?
4

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. 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
For further information and support
RNIB SCOTLAND
12-14 Hillside Crescent
Edinburgh
EH7 5EA
T: 0131 652 3140

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. 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
For further information and support
Deaf Action
49 Albany Street
Edinburgh
EH1 3QY
T: 0131 556 3128

11. THREE
DIFFERENT
ROLES
11
ELJSP

12. Delivering Better Services for Ethnic Minorities
Tariq Mahmood
Project Development Officer (Ethnic Minorities)
Full-time: Based at RNIB Scotland
12

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. 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. 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. Supporting Families of Children with Sensory Loss
Agnes Branny
Project Development Officer (Early Intervention: d/Deaf)
Part-time: Based at Deaf Action
16

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. 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. 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. 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. 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. 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. 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. Sensory Loss and Complex Needs
As a result:
• individuals behaviours may be mistakenly attributed
to learning disability/stroke/dementia
24

25. PREVALENCE OF
SENSORY LOSS
25

26. UK Statistics: Population
26

27. UK Statistics: Sight Loss
27
1 in 30

28. UK Statistics: Sight Loss: Expected to Double
28
1 in 15

29. Every day
100 people in the UK
start to lose their sight
29

30. 1 in 6 outpatient
appointments in many
hospitals are now for
eye care
30

31. Children and Sight Loss
2 in every 1000 children are born with a sight loss
31

32. UK Statistics: Hearing Loss
32
1 in 6

33. UK Statistics: Hearing Loss: Expected to Increase
33
1 in 4

34. On average, it takes
people 10 years to
address their hearing
loss
34

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. Children and Hearing Loss
90% deaf children born to hearing parents
4 babies are born deaf every day
36

37. However....
....a significant proportion
of
sight and/or hearing loss
is
related to age
37

38. Scotland Statistics: Population Growth
38
40%
50+
50+

39. Sight Loss
1 in 5 people over 75
1 in 2 people over 90
39

40. Hearing Loss
40% of people over 50
70% of people over 70
40

41. But....
....lifestyle choices
play
a really
important part
41

42. Sight Loss
Smoking and obesity
can DOUBLE the
probability of
sight loss
42

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. Diabetic Retinopathy is the
SINGLE BIGGEST CAUSE
of sight loss
among Scots of working age
44
Lifestyle Choices: Scotland: Sight

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. Inserting objects into your ears is unsafe. This includes:
FINGERS, COTTON BUDS, COTTON WOOL, TISSUE
46
Lifestyle Choices: In General: Hearing Loss

47. SENSORY LOSS
AND
COMPLEX NEEDS
47

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. 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. Sensory Loss and Complex Needs
• A person may be unresponsive
• They may also display disturbing, angry, challenging
and/or frustrating behaviour
50

51. Sensory Loss and Complex Needs
Ask yourself, what role
sensory loss may be playing
in the situation?
51

52. SENSORY LOSS
AND LEARNING
DISABILITY
52

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. 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. SENSORY LOSS
AND STROKE
55

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. 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. 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. 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. SENSORY LOSS
AND
DEMENTIA
60

61. Sight Loss and Dementia
1 in 5 people over 75
1 in 2 people over 90
61

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. Hearing Loss and Dementia
REMEMBER
If the person is over 70,
they will have
some degree of hearing loss
63

64. SENSORY CHAMPION
TRAINING: BENEFITS
64

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. • 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. FIVE LEADING
CAUSES
OF SIGHT LOSS
67

68. Refractive Error
68

69. Refractive Error
69

70. Full Sight
70

71. Macular Degeneration
71

72. Cataract
72

73. Glaucoma
73

74. Diabetic Retinopathy
74

75. Leading Causes of Sight Loss in the UK
75
Over 50%
of
sight loss
can be
avoided

76. Tasks

77. EIGHT LEADING
CAUSES
OF
HEARING LOSS
77

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. Leading Causes of Hearing Loss in the UK
• Head injury
• Benign tumours
• Genetics
• Complications at birth
79

80. LIPREADING –
THE MYTHS
80

81. Lipreading:
• Only 25-30% of speech is lip-readable
• Relies on good, clear lip pattern
• Requires immense concentration
81

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. WORKSHOP
LIPREADING
83

84. Lipreading Exercise
Where Do You Stay?
84

85. Lipreading Exercise
Take these tablets _______ a day
once/twice
85

86. Lipreading Exercise
I must _______
Buy that chicken
Pay that cheque in
86

87. Lipreading Exercise
He’s _______ with me
discussed it/disgusted
87

88. Lipreading Exercise
I _______ do that
must/mustn’t
88

89. Lipreading:
• Lipreading is tiring
• Involves facial expressions and
body language
• Helps to know the topic being discussed
89

90. SENSORY
CHAMPION ROLE
90

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. 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. 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. SENSORY CHAMPION
TRAINING DATES
94

95. Sensory Champion Training: Learning Disability
Pilot Training: March 2014  Autumn 2014
95
20
People

96. Sensory Champion Training: Stroke
March 2014  Stroke Study Day  April 2014
96
40
People
20
People

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. 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. Any Questions?
99
Thank You