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“The next problem
we faced was... the
bedroom tax...
it’s been a difficult
journey but we’ve
kept fighting”
were too narrow for us to
move it anywhere. I was
also sleeping on the sofa
when Neil wasn’t well.
Our social worker helped
us secure a two-bedroom
bungalow, which is fully
accessible and has a wet
room. The next problem
we faced was fighting the
bedroom tax. We were
initially turned down for
Discretionary Housing
Payment (DHP) to help with
the bedroom tax. However,
after contacting our local MP
we have been awarded DHP.
It’s been a difficult journey,
but we’ve kept fighting.
Since then Neil’s health
has declined even further,
he was diagnosed with
autonomic neuropathy,
Barrett’s Oesophagus,
and has suffered a couple
of mini strokes. Dramatic
problems with his blood
pressure affected his sight
and he’s now fully blind.
He has dialysis in hospital
three times a week, and
is hoping to lose enough
weight to be put on the
transplant waiting list.
My caring role mainly
involves giving Neil help
when he asks for it, running
errands, such as going to
the shops for him, guiding
him or pushing him in his
wheelchair, and helping
with his communication
needs or filling out
forms. Neil likes to be as
independent as possible and
most of the time he can do
things like wash and dress
himself unaided.
We have a Carecall alarm
system in our house so that
in an emergency Neil can
get help via his pendant if
he’s on his own. This gives
me great reassurance,
so that I can leave the
house. I like attending
a weekly photography
group, and I sometimes
go on day trips with
the local Carers Centre
and I’m taking driving
lessons. It is important
“It is important to
me to have a life
of my own”
@carersuk
/carersuk
to me to have a life of my
own, obviously Neil’s my first
priority, but he says himself
he doesn’t need a nanny.
I’m quite passionate about
trying to improve things
for carers and disabled
people, so I like to attend
local groups such as our
local disability forum to try
and give carers a voice. I will
never forget how difficult
those first six months were,
everything changed we were
thrust into a new world we
knew nothing about.
Looking back on it all, it
was quite stressful. I am
determined to try to make
sure no other new carer goes
it alone and gets access to
the help they need.
Need help
and advice?
T 0808 808 7777
E [email protected]
carersuk.org/help
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