Case histories
We are grateful for the help and co-operation of the people who
use our services who volunteered to write up their experiences for
use in this section.
We hope these personal real-life stories will help explain how
we try and help people with disabilities living in West Sussex.
Where photographs have been used, the people concerned have
given their consent for us to use them.
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Adapted housing
This young person says: "In the last house I lived in, I had to
use the downstairs lounge as a bedroom. If I wanted to watch
TV it had to be what the whole family wanted to watch. If I wanted
an early night the whole family had to go to their beds. If I
wanted to be on my own - tough! I would have to wheel myself into
the bathroom, sit staring at the sink and then back myself out
again because there wasn't room to turn my wheelchair. If anyone
wanted to spend a penny or use the bathroom I would have to go
out. To bathe, I need a special bath chair and if Mum hadn't put it
back into the bath when the others had had a shower then I couldn't
get into the bathroom anyway.
"It was so lonely and frustrating knowing
I couldn't get upstairs if I wanted to, especially when I could
hear the rest of the family talking and having fun.
"The house we live in now is so much nicer because I can go up
and down stairs using the lift when I want to, which is great
as it also helps Mum and Dad. I've now got a lovely big room
upstairs in which I have enough room to move around with ease
and chill out when I want to. I can go into Mum and Dad's room
or my brother's room if I like - and I can go to my room
if I want to be alone.
"The lounge has loads of room to move about in. It's even got
room for a proper three-piece suite. Brilliant! The kitchen I can
get into with ease. I even have my own low-level worktop (which
means I have to do more chores!) and there's a serving hatch
between the kitchen and the dining room so I don't get out of
setting the table anymore....And the bathroom is fab - it
makes mine and Mum's life so much quicker and easier. The bath
chair is great. It's so much nicer to be in control of the seat
which, when not in use, sits in the bath, leaving us all heaps of
room to move around in. And, when the others want to use the bath,
Mum has it easier - no back breaking struggle, just a finger on a
button."
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Equipped to cope
Mr C says: "My father has been diagnosed with Parkinson's
Disease, which affects his mobility, manual dexterity and, at
times, ability to think and cope. He needed some physical aids to
help him around the house.
"The occupational therapy service provided us with a raised
toilet seat and stool for the bath. We were also provided with an
additional hand-rail to assist my father in getting up and down
stairs. Discussion also took place regarding contact with a
local agency that helps vulnerable people to adapt their homes, and
of the possible installation of walk-in shower.
"Further meetings with the occupational therapy service have
helped to provide additional equipment, from adapted cutlery,
battery operated bath chair, wheeled commode to, most recently,
fixed electric hoists, one for the bedroom and one for the
lounge.
"The hoist in the lounge enables safe transfer to a wheelchair,
or wheeled commode, where my father can be taken to the bedroom.
Here he can be comfortably and safely transferred into bed using
the second hoist without fear of injury to either him or the
carer."
Mr C adds: "Increasing disability and frailty means we will
continually be adjusting and adapting how we care for my father.
Support from the occupational therapy service has been, and will
continue to be, invaluable in making it possible for my father to
be cared for and to remain at home."
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Disabled facilities grants
Mrs T was diagnosed with Multiple Sclerosis and was visited by
an occupational therapist from the county council. She says:
"From day one, the occupational therapy service has done me
proud. I had been struggling to reach the toilet, and needed a
downstairs loo. My occupational therapist explained that a grant
might be available to help meet the cost."
Disabled facilities grants are means-assessed grants managed by
your local council. Some people are entitled to financial support.
If this is the case, the occupational therapist can make a
recommendation to the council to support a disabled person's
application using their specialist knowledge. For people
who are not entitled to a council grant, the occupational therapist
can still give professional recommendations. The process of
deciding what needs to be changed, then planning for it and
organising quotes and so on can take several months, or more than a
year, depending on how much needs to be changed.
Mrs T adds: "We were novices at the time. Plans, permission,
builders were all outside our realms of experience, but
my occupational therapist lead us through the mire. From
beginning to end was probably about a year. The outcome is that an
extension was eventually built on to the front of the house,
comprising a toilet, hand basin and shower. Access to the new
building is by way of a ramp, with iron railings on the garden
side, and a handrail on the wall, and inside, a wide sliding door
provides access to the shower room. The council provided a 75%
grant, and we increased our mortgage to meet the balance. The
ground floor loo is magic! I cannot imagine how I managed
without it."
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Help to live independently
Theresa says: "I first came into contact with occupational
therapy after I had developed Guillain Barré syndrome and
Transverse Myelitis. These left me with limited use of my arms and
a permanent wheelchair user.
"I've had regular dealings with both the hospital and county
council occupational therapists ever since. They have looked at a
whole range of situations and difficulties to assist me to live as
independently as I ca
n.
"The major issue at first was where I would live after
being discharged from hospital. I had previously owned my own
flat but this was now inaccessible to me and, being an independent
person, I didn't want to move back with my parents full time.
"The hospital and occupational therapists - in liaison with a
housing officer, my social worker, and the district nurse - were
able to help me find a more suitable new house. Once I had decided
to move to the new place the occupational therapist had some minor
adaptations done and arranged for equipment that I would need, such
as a ceiling track hoist system.
"Over the last four years, since my condition first
materialised, they have helped me with everything, from not
slipping out of my shower chair to finding a way for me to open the
windows of my flat myself. I have always felt that I can simply
call up the occupational therapists. They will see me as soon as
they can and offer a constructive viewpoint on my options, whatever
the situation. It has taken a long time but they have helped me
become settled in my new home and with a new life in general."
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After a stay in hospital
Betty says: "Arriving home after five months in hospital, I was
a pathetic, chair-bound old lady.
"I was put in touch with the
occupational therapy service and they turned me into an
independent person living on my own in a sheltered housing
flat.
"They provided me with a stool for my kitchen and bathroom, a
walk-in shower, a raised toilet seat and grab-rails, a commode in
my bedroom and a gadget on my bed to help me to sit up and get out
of bed, with no trouble at all. They also supplied me with a
trolley."
She adds: "I cannot thank the occupational therapy service
enough for helping me back to being a person able to cope once more
to come to terms with everyday life."
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Getting around at home
Albert says: "Before the occupational therapy service was
involved I had two very bad falls at home. I was badly hurt
and taken to hospital at Haywards Heath.
"I was also having difficulty getting up and down the
stairs. Sometimes I had to stay in my bedroom for a couple of
days because I couldn't get up and down the stairs, at times coming
down on my bottom for the fear of falling. So I got in touch
with the occupational therapy service at Haywards Heath, and told
them about myself.
"An occupational therapist visited my
home and I was assessed and told of different aids there were
to help me. It was recommended that I had perching stool in
the kitchen, raised my armchair in the living room because I
had a job getting out of it, and raised my toilet seat.
"I was put in touch with a local agency that helps
vulnerable people to adapt their homes and told who could help
me to try for a grant for a stair lift. It took
about seven months to get my stair lift installed."
Albert adds: "The stair lift has made me more independent. Now
my family, who are my carers, do not have to worry so much."
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Help with bathing
Charles says: "My problems are due to a wartime back injury
which, combined with a hip replacement and getting older, meant I
was in a lot of pain and discomfort for much of the time. My number
one problem was with using the bath, which, despite having some
simple equipment, caused me a great deal of stress and pain. I had
become fearful of using the bath at all.
"The occupational therapist and I discussed what my needs and
abilities were. We talked about my previous medical history and my
life in general. Once we had looked at my difficulties, the
occupational therapist asked me what I felt I needed and we then
discussed what she felt would be the best option to take.
"We both felt the best solution was to remove the bath and
replace it with a shower with a very low step. And so the bath was
removed and I now have a shower that takes up the same space. It
has a small step in and a chair on the wall. The work was done
through a grant from the district council. I think it all took
about two months to get completed, from when the
occupational therapist had made her recommendations to the plumbers
getting the work done.
"Now that the work has all been finished I am able to use
the shower anytime I like without worry or pain. I have much more
peace of mind about it all. I am a very independent person and this
enables me to remain living my life the way I want to and, really,
I don't know what I would do without it now! I would simply like to
thank everyone who was involved with helping me get this work done
as it has very much changed my life for the better."
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