Edinburgh and Lothians Joint Sensory Partnership (ELJSP)

Tuesday 18 March 2014

Katharine Jackson

Project Development Officer

Hidden Sensory Loss

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EDINBURGH ANDLOTHIANS JOINT SENSORY PARTNERSHIP(ELJSP)

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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

 

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WHO ARE RNIB SCOTLANDANDDEAF ACTION?

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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

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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"

 

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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, 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

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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" 

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"Working together for an

equal and better future for all

d/Deaf people"

 

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For further information and support

Deaf Action 49 Albany Street Edinburgh EH1 3QY

T: 0131 556 3128

THREEDIFFERENTROLES

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ELJSP

Delivering Better Services for Ethnic Minorities

Tariq Mahmood

Project Development Officer (Ethnic Minorities)

Full-time: Based at RNIB Scotland

 

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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

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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

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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

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Supporting Families of Children with Sensory Loss

Agnes Branny

Project Development Officer (Early Intervention: d/Deaf)

Part-time: Based at Deaf Action

 

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Supporting Families of Children with Sensory Loss

Tess McNatt

Project Development Officer (Early Intervention: Sight Loss)

Part-time: Based at Deaf Action

 

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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.

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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.

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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.

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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

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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

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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

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Sensory Loss and Complex Needs

As a result:

• individuals behaviours may be mistakenly attributed

to learning disability/stroke/dementia

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PREVALENCE OFSENSORY LOSS

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UK Statistics: Population

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2014

62 Million

UK Statistics: Sight Loss

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2014

2 Million

1 in 30

UK Statistics: Sight Loss: Expected to Double

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2050

4 Million

1 in 15

Every day

100 people in the UK

start to lose their sight

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1 in 6 outpatient

appointments in many

hospitals are now for

eye care

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Children and Sight Loss

2 in every 1000 children are born with a sight loss

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UK Statistics: Hearing Loss

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2014

10 Million

1 in 6

UK Statistics: Hearing Loss: Expected to Increase

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2031

14.5 Million

1 in 4

On average, it takes

people 10 years to

address their hearing

loss

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By 2030, the World Health

Organisation predicts

adult onset hearing

loss will be ABOVE

diabetes and cataracts

in the top ten ailment list

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Children and Hearing Loss

90% deaf children born to hearing parents

4 babies are born deaf every day

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However....

....a significant proportion

of

sight and/or hearing loss

is

related to age

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Scotland Statistics: Population Growth

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2021

40% 50+ 2021

50+40% of the Population

Sight Loss

1 in 5 people over 75

1 in 2 people over 90

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Hearing Loss

40% of people over 50

70% of people over 70

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But....

....lifestyle choices

play

a really

important part

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Sight Loss

Smoking and obesity

can DOUBLE the

probability of

sight loss

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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

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Lifestyle Choices: Scotland: Sight

Diabetic Retinopathy is the

SINGLE BIGGEST CAUSE

of sight loss

among Scots of working age

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Lifestyle Choices: Scotland: Sight

Listening to any sound at a high volume –

89dB for more than 5 HOURS a week

– can damage hearing permanently over time

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70dB

25 ft 90dB

80dB

Lifestyle Choices: In General: Hearing Loss

Inserting objects into your ears is unsafe. This includes:

FINGERS, COTTON BUDS, COTTON WOOL, TISSUE

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Lifestyle Choices: In General: Hearing Loss

SENSORY LOSSAND COMPLEX NEEDS

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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

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

Sensory Loss and Complex Needs

• A person may be unresponsive

• They may also display disturbing, angry, challenging and/or frustrating behaviour

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Sensory Loss and Complex Needs

Ask yourself, what role

sensory loss may be playing

in the situation?

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SENSORY LOSSAND LEARNINGDISABILITY

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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

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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

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SENSORY LOSSAND STROKE

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Sight Loss and Stroke: Hemianopia

• Not being able to see to either the left or right from the

centre of field of vision

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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

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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)

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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)

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SENSORY LOSSANDDEMENTIA

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Sight Loss and Dementia

1 in 5 people over 75

1 in 2 people over 90

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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

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Hearing Loss and Dementia

REMEMBER

If the person is over 70,

they will have

some degree of hearing loss

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SENSORY CHAMPION TRAINING: BENEFITS

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• 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

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Sensory Champion Training: Sight Loss

• Causes of Hearing Loss

• Types/Effects of Deafness

• The Hearing Test

• Lipreading/Communication Tactics

• Hearing Aids

• Assistive Equipment

• Sensory Champion Toolkit

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Sensory Champion Training: Hearing Loss

FIVE LEADINGCAUSESOF SIGHT LOSS

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Refractive Error

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Refractive Error

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Full Sight

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Macular Degeneration

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Cataract

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Glaucoma

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Diabetic Retinopathy

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Leading Causes of Sight Loss in the UK

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Over 50%

of

sight loss

can be

avoided

Tasks

EIGHT LEADINGCAUSESOFHEARING LOSS

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Leading Causes of Hearing Loss in the UK

• Age-related

• Regular and prolonged exposure to loud sounds

• Medication/drugs

• Infection/disease (eg rubella)

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Leading Causes of Hearing Loss in the UK

• Head injury

• Benign tumours

• Genetics

• Complications at birth

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LIPREADING – THE MYTHS

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Lipreading:

• Only 25-30% of speech is lip-readable

• Relies on good, clear lip pattern

• Requires immense concentration

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Lipreading:

• Many letters/numbers look alike on the lips

(baby, paper, maybe)

• Numbers: 13/30 14/40 15/50

• Colours: Red, Green, Grey

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WORKSHOPLIPREADING

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Lipreading Exercise

Where Do You Stay?

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Lipreading Exercise

Take these tablets _______ a day

once/twice

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Lipreading Exercise

I must _______

Buy that chicken

Pay that cheque in

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Lipreading Exercise

He’s _______ with me

discussed it/disgusted

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Lipreading Exercise

I _______ do that

must/mustn’t

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Lipreading:

• Lipreading is tiring

• Involves facial expressions and

body language

• Helps to know the topic being discussed

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SENSORYCHAMPION ROLE

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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!

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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

 

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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

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SENSORY CHAMPION TRAINING DATES

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Sensory Champion Training: Learning Disability

Pilot Training: March 2014 Autumn 2014

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20 People

Sensory Champion Training: Stroke

March 2014 Stroke Study Day April 2014

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40 People

20 People

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

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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

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Any Questions?

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Thank You