Module 02

Mick Scadden

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Module 02: Mick Scadden

Teaching notes
When I lost my sight, Werner, people said I was brave. When my father left, people said I was
brave. But it is not bravery; I have no choice. I wake up and live my life. Dont you do the same?
Anthony Doerr, All the Light We Cannot See.
Here is some information on sight loss from the Royal National Institute for the Blind (RNIB):
Key information and statistics on sight loss.
As of 2015, over two million people in the UK are living with sight loss.
Sight loss affects people of all ages, but as we get older we are increasingly likely to experience
sight loss.
One in five people aged 75 and over are living with sight loss.
One in two people aged 90 and over are living with sight loss.
Nearly two-thirds of people living with sight loss are women.
People from black and minority ethnic communities are at greater risk of some of the leading
causes of sight loss.
Adults with learning disabilities are 10 times more likely to be blind or partially sighted than the
general population.
Age-related muscular degeneration is by far the leading cause of blindness in adults. Other
significant causes of sight loss are glaucoma, cataracts and diabetic retinopathy.
The number of people in the UK with sight loss is set to increase dramatically in the future. As
we get older we are increasingly likely to experience sight loss, and the UK population is ageing. In
addition, there is a growing incidence in key underlying causes of sight loss, such as obesity and
diabetes. This means that, without action, the numbers of people with sight problems in the UK are
likely to increase dramatically over the next 25 years.
It is predicted that by 2020 the number of people with sight loss will rise to over 2,250,000. By
2050, the number of people with sight loss in the UK will double to nearly four million.
Many older people are needlessly living with sight loss. Almost two thirds of sight loss in older
people is caused by refractive error and cataract. Both conditions can be diagnosed by a simple eye
test. In most cases the persons sight could be improved by prescribing correct glasses or cataract
surgery.
Over 50 per cent of sight loss can be avoided.
In 2008 sight loss cost at least 6.5 billion, and this is likely to increase as the number of people
with sight loss increases. This figure does not include the cost of sight loss in children.

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Guiding a blind or partially sighted person:

How do you introduce yourself to someone with a sight problem? How do you support someone
with a sight problem in getting around within buildings and outside? Each persons experience
is different and unique and there are no hard and fast rules on how to assist people with sight
problems. If you see somebody with a sight problem who you think may need help, then ask. Let
them tell you what kind of help they need. It may be that they need help crossing the road or finding
the train station.
If your help is needed, keep a few common-sense things in mind:
Introduce yourself and talk directly to the person you are guiding.
If you are going to guide them, let them take your arm, dont grab theirs.
Tell them about kerbs and steps as you approach them and say whether they go up or down.
Mention any potential hazards that lie ahead and say where they are.
If you are guiding someone into a seat, place their hand on the back of the seat before they sit
down, so they can orientate themselves.
Dont walk away without saying you are leaving.

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Module 02: Mick Scadden

Handout 01 Micks Story
Summary.
Mick was born in London in 1948. He was born with G6PD deficiency, which is a blood disorder.
Mick worked for many years as a truck driver and haulier. In 2008 he had a heart bypass operation
and also had his prostate removed. In 2010 he was diagnosed with Optic Neuropathy which means
the nerves between his eyes and his brains have malfunctioned, leaving him with severe sight loss.
Mick quickly learned how to get around with the help of his guide dog Mollie, and plays many sports
specifically adapted for people with visual impairments. He also has Charles Bonnet Syndrome, a
condition specific to people with a visual impairment. This condition means he has hallucinations
where his brain tries to fill in the missing information that it is not receiving from the eyes.
Read/Listen to the following account from Mick about Charles Bonnet Syndrome.
When I was doing this group with counselling, when I closed my eyes at night I seen new-born
babies, theyre naked and theyre all interlinked like with, you put your fingers together. And the more
I concentrate on em they go into oblivion and disappear. And I could be sitting in the car or on a bus
and I could see a tree in the middle of the road. I know mentally its not there but it, its my, in my
sight its there. I can see, I can see, when I done the London to Cambridge cycle ride on a tandem
and we were three hours into the ride and going through the country lanes in the bushes, I could see
faces of masked, um, not gargoyles but masks. And uh, when I closed my eyes and open them and
go back theyre not there. And I used to like doing my garden and when I was cutting my bush, in
one of the bushes, I had me hands in the bush and from the tips of my fingers to my elbow, I can see
all insects, every creatures crawling up my arm. Right up to, and Im looking at them and I can see
all the insects and spiders and everything. Withdraw my hand from the bush and theyre gone. Put
my hand back in the bush and theyre all there. And I thinking, I dont know. Im going mad here. So,
when I came to this group, I plucked up the courage to tell these people that this is whats happening.
And one of the people who run the group went outside, got a magazine, brochure and came back
and she said, there you are Mick, she said, thats your condition. Its Charles Bonnet syndrome.
Yeah. Its what your mind makes up for whats missing.Yeah. Some people see buses coming
through the room of the house.And some people can see cats running round the pelmet of the
house Some people think that theyve got another room in their house.

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Module 02: Mick Scadden

Handout 02 Micks Story
Charles Bonnet Syndrome
Here is some information from the National Health Service (NHS) website about Charles Bonnet
Syndrome.
In Charles Bonnet syndrome, a person whose vision has started to deteriorate sees things that
arent real (hallucinations). The hallucinations may be simple patterns, or detailed images of events,
people or places. Theyre only visual and dont involve hearing things or any other sensations. Its
important to be aware that hallucinations associated with Charles Bonnet syndrome are caused by
failing eyesight. Theyre not caused by a mental health problem or dementia. People with Charles
Bonnet syndrome are usually aware that the visions arent real, even if theyre vivid.
Types of hallucination
There are two main types of hallucination that people with Charles Bonnet syndrome tend to
experience. They may see:

simple repeated patterns

complex images of people, objects or landscapes

Simple repeated patterns can take the form of grids, shapes or lines, which can appear in bright
or vivid colours. The patterns may lay across or cover everything the person sees. More complex
hallucinations can involve people, places, animals and insects. Most people dont see hallucinations
of people they know or past events theyve experienced. The hallucinations arent usually unpleasant
or threatening, but they may be slightly frightening when first experienced. The can sometimes occur
out of the blue, and can last for a few minutes or several hours. They may be moving or static.
Who is affected and why?
Charles Bonnet syndrome affects people whove lost most or all of their eyesight. Its more likely
to occur if vision loss affects both eyes. According to the Muscular Society, up to half of all people
with muscular degeneration a gradual loss of central vision may experience Charles Bonnet
hallucinations at some time. Its thought there are more than 100,000 cases in the UK. People of
any age can be affected by Charles Bonnet hallucinations, but they tend to occur later in life after
a person starts to lose their sight. The hallucinations often begin when a persons sight suddenly
deteriorates. The main cause of Charles Bonnet syndrome is thought to be vision loss and how the
brain reacts to it. Its not clear how loss of vision leads to hallucinations, but research is beginning to
help us better understand the relationship between the eyes and the brain. When a person starts to
lose their sight, their brain doesnt receive as much information as it used to. Its thought the brain
sometimes responds by filling in the gaps with fantasy patterns or images that its stored. These
stored images are experienced as hallucinations.

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What effect can hallucinations have?

Visual hallucinations are a normal response the brain has to the loss of vision. However, as Charles
Bonnet syndrome isnt widely known, many people worry about what it means and fear they may be
developing a serious mental illness or dementia. It can also cause practical problems. People who
see complex hallucinations may find it difficult to get around. Streets and rooms may be distorted,
and brickwork or fencing may appear directly in front of you, making it difficult to judge exactly where
you are and whether you can walk straight ahead. Some people can overcome this problem by
having good knowledge of their surroundings. Complex hallucinations can be unsettling. Although
the visions may not be frightening, it can be disturbing to suddenly see strangers in your home or
garden. For most people, the hallucinations will improve over time, with episodes becoming shorter
and less frequent. Recent evidence suggests most people will still have occasional hallucinations
five years or more after they first started. If the hallucinations do stop entirely, theres always a
chance theyll reappear after a further decline in vision.
Treating Charles Bonnet syndrome
Theres currently no cure for Charles Bonnet syndrome. Simply understanding that the
hallucinations are a normal consequence of vision loss, rather than a mental health problem, can
be very reassuring and help the person cope better. No specific medication has been shown to stop
hallucinations caused by Charles Bonnet syndrome. Some medications that are designed to treat
epilepsy, Parkinsons disease and dementia have proved effective for some people. However, these
powerful medications can have serious side effects, and are therefore only recommended for people
who are severely affected and under close supervision.

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Module 02: Mick Scadden

Handout 03 Worksheet
Date:

Your name:
1) Put yourself in Micks position. What would you find most scary to hallucinate like he did?

2) Imagine you yourself went blind. What thing in your life would you most miss due to your
visual impairment?

3) Have a think and list 3 things that a sighted person can easily do that a person with a visual
impairment may find a challenge. Why would these things be difficult and how could the person
with a visual impairment adapt to overcome them?

4) Talk to the person next to you and discuss the things you could do to assist somebody who has
a visual impairment. Imagine being on a bus or in a supermarket or anywhere you can think of.
How could you assist someone with a visual impairment in those situations?

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Module 02: Mick Scadden

Handout 04 Comment Sheet
Date:

Your name:
My comment on the audio/transcript

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