Emotional support for sight loss
Mhairi Thurston
University of Abertay, Dundee
What kind of emotional impact is
commonly reported?
• Depression
• Anxiety
• Social Isolation
• Reduced well being
What are the specific challenges
facing people with acquired sight
loss?
• Diagnosis
• Degenerating sight
• Loss
• Changing identity
• Rehabilitation
• Being treated differently by others
Being diagnosed with a serious
sight condition
• “The main thing was the panic. It was
scary.”
• “You’re told you’re going blind and they
boot you out the door.”
• “Nobody ever said, ’How are you going to
manage?”
Coping with deterioration of sight
• “You are always having to adjust and readjust.”
• “It’s like you get a remission with loss of vision
•
and then you get a drop and that’s traumatic.
You think, ”Is this going to be it?” and then it
levels out again for a long time and I mean it
just went on like that. It just went on and on.”
“Your life grinds to a halt. It took me to the
brink.”
Experiencing loss
• “I just can’t do the things I used to do.
That’s it. Every day’s the same.”
• “You lose all the time. You lose your
independence, you lose your pride and
you lose your self esteem.”
• “You lose everything in a oner.”
Experiencing changed
perceptions of self
• “You feel a bit second class.”
• “I feel like a leper. I should go around
with a label saying unclean.”
• “You’re on the bottom rung and you can’t
get off it.”
Experiencing others
• “People have all got problems, but ours are
•
•
visible. People say ‘There’s that blind guy’. You
can’t hide blindness.”
“The general public treat you differently,
because they don’t understand. They don’t
understand sight loss.”
“People talk to my husband when we’re
together. They seem to think that because my
sight’s gone, that someone took my brain along
with it.”
Experiencing rehabilitation
• “You don’t want to accept the fact that
you have a sight problem.”
• “It’s a journey, isn’t it. You have to take it
at your own speed.”
• “Its like another step along the way.
Another nail in the coffin.”
What are common coping
strategies?
• “You don’t die of it.”
• “You can’t say, ‘Oh well, I’ve got it, I’ll just
act like a dummy.’ I just say, ‘Well, I’ve
got it and I’ll just carry on the way I am.
Just look at what I can do. Just keep
going.”
• “I actually think that RP has given me not
just taken away. It has given me things I
wouldn’t have had if I hadn’t had RP.”
A transitional process from sight to
blindness
• point of diagnosis –shock/ panic/ disbelief
• no outward signs of sight loss- resistance to
rehabilitation/hiding sight loss/desire for life to
remain unchanged
• point of impact- enforced life style changes due to
sight loss (e.g. loss of driving license)/loss stage
• rehabilitation-outward manifestations of sight loss
(e.g. white stick, guide dog)/change in perception of
self/ change in perception by others/emotionally
challenging
• acceptance-re-conceptualisation of self/condition
What about formal counselling?
• “Counselling is for the weak willed. People who don’t
•
•
•
•
want to help themselves.”
“Counselling is not being able to cope.”
“I know that counselling’s not going to help me. The
only thing that’s going to make you feel better is getting
your eye sight back.”
“They say they understand but they don’t. How could
you? Walk about in darkness for a month and then come
back and tell me.”
“The problem is who is doing the counselling. If it’s a
sighted person then it’s a waste of time.”
However….
• “At the point of telling somebody there’s
nothing that can be done, there should be
a counsellor in the room.”
• “I’ve always maintained that there should
be a counselling service alongside an eye
clinic. Somebody should be there if people
need them.”
RNIB Draft Group Framework for Emotional
Support
Tier
3
Service/Interventions
Mental health professionals i.e.
Psychiatrist/Mental Health Services
GP
Functions
Statutory Health Support
Tier
2
Services/Interventions
RNIB Emotional Support Service
Action Counselling Services (e.g.
Bristol, Merseyside)
Some local societies counselling
provision
Genetic counselling (CCYP)
Specialist support (e.g. Macular
Disease Society)
GP and IAPT (Improving Access to
Psychological Therapies - NHS
programme)
Middle Step Programme (spans Tiers 1
& 2 - To be agreed)
Functions
Structured counselling support delivered by a
qualified professional, supported by an ethical
framework
Allows for - regression, acceptance,
beginning and end and relief in between
Triggers into Tier 3
Continued threat of suicide
Other diagnosable mental health
disorders
* Tier 2 services might work in
partnership with a Tier 3 Services if it
is in the best interest of the client
Tier
1
Services/Interventions
ECLOs
Helpline
Advice Team
Local info & advice services
Rehabilitation officers/ ILCOs
"Finding Your Feet" programme
Local societies
"Middle Step" Programme (spans tiers
1 & 2 - To be agreed)
Functions
Initial hearing and identification of distress
Listening Ear
Next step-signposting
Checking understanding of information
Normalisation (acknowledging where
thoughts and feelings are a normal reaction
for the context)
Triggers into Tier 2
Suicide ideation
Repeat story telling
Not taking up practical support
Not moving on
Denial
Depression
Anxiety
•A client requesting support
RNIB Draft Group Framework for Emotional
Support
Tier
1
Services/Interventi
ons
ECLOs
Helpline
Advice Team
Local info & advice
services
Rehabilitation
officers/ ILCOs
"Finding Your Feet"
programme
Local societies
"Middle Step"
Programme (spans
tiers 1 & 2 - To be
agreed)
Functions
Initial hearing and
identification of distress
Listening Ear
Next step-signposting
Checking understanding
of information
Normalisation
(acknowledging where
thoughts and feelings are
a normal reaction for the
context)
Triggers into Tier
2
Suicide ideation
Repeat story telling
Not taking up
practical support
Not moving on
Denial
Depression
Anxiety
•A client requesting
support
RNIB Draft Group Framework for Emotional
Support
Tie
r2
Services/Interventio
ns
RNIB Emotional
Support Service
Action Counselling
Services (e.g. Bristol,
Merseyside)
Some local societies
counselling provision
Genetic counselling
Specialist support (e.g.
Macular Disease
Society)
GP and IAPT
(Improving Access to
Psychological Therapies
- NHS programme)
Middle Step
Programme (spans Tiers
1 & 2 - To be agreed)
Functions
Structured counselling
support delivered by a
qualified professional,
supported by an ethical
framework
Allows for - regression,
acceptance, beginning and
end and relief in between
Triggers into Tier 3
Continued threat of
suicide
Other diagnosable
mental health disorders
* Tier 2 services might
work in partnership
with a Tier 3 Services if
it is in the best interest
of the client
RNIB Draft Group Framework for Emotional
Support
Tie Service/Interventi
r 3 ons
Mental health
professionals i.e.
Psychiatrist/Mental
Health Services
GP
Functions
Statutory Health
Support
Tier one, tier two or tier three?
• Counsellor or ECLO?
RNIB Draft Group Framework for Emotional
Support
Tier
3
Service/Interventions
Mental health professionals i.e.
Psychiatrist/Mental Health Services
GP
Functions
Statutory Health Support
Tier
2
Services/Interventions
RNIB Emotional Support Service
Action Counselling Services (e.g.
Bristol, Merseyside)
Some local societies counselling
provision
Genetic counselling (CCYP)
Specialist support (e.g. Macular
Disease Society)
GP and IAPT (Improving Access to
Psychological Therapies - NHS
programme)
Middle Step Programme (spans Tiers 1
& 2 - To be agreed)
Functions
Structured counselling support delivered by a
qualified professional, supported by an ethical
framework
Allows for - regression, acceptance,
beginning and end and relief in between
Triggers into Tier 3
Continued threat of suicide
Other diagnosable mental health
disorders
* Tier 2 services might work in
partnership with a Tier 3 Services if it
is in the best interest of the client
Tier
1
Services/Interventions
ECLOs
Helpline
Advice Team
Local info & advice services
Rehabilitation officers/ ILCOs
"Finding Your Feet" programme
Local societies
"Middle Step" Programme (spans tiers
1 & 2 - To be agreed)
Functions
Initial hearing and identification of distress
Listening Ear
Next step-signposting
Checking understanding of information
Normalisation (acknowledging where
thoughts and feelings are a normal reaction
for the context)
Triggers into Tier 2
Suicide ideation
Repeat story telling
Not taking up practical support
Not moving on
Denial
Depression
Anxiety
•A client requesting support
Further Information/Feedback
m.thurston@abertay.ac.uk