Direct route to freedom

In 1992 I was a supervisor in the local hospital. I had six staff
to supervise and was very happy there. I also did some charity work
for Barnardo’s and all my colleagues helped me raise money for the
children at Barnardo’s. My life was interesting and varied and,
like many others, I took it all for granted.

But then I had to have a brain scan and the doctors told me I might
have a tumour. On the same day my husband was diagnosed with
multisystem atrophy, a progressive neurological disorder. His
prognosis was not hopeful. I felt like the world had crashed in on
me and all hope of any future was gone.

Despite my own ill health, I could not think of myself any longer
and put my time and energy into looking after my husband. I had to
leave my job to dedicate myself to taking care of his needs. I
asked my colleague, who was a social worker at the hospital, what
support was available to people in our position. My husband was
assessed and given a person one hour a day to help me with his
personal care needs.

That is when all the trouble started. I had to spend the hour
teaching the agency staff how to care for my husband. He was in
such pain that he had to be moved in ways to minimise the pain,
otherwise he could be reduced to tears. Even though the agency
staff were so-called trained and professional people, they could
not seem to grasp this. It was so difficult for me to stand by and
watch them manhandle my loved one. So I constantly watched them to
ensure they were doing it correctly. Every day it was the same
story. I could not go out or have a rest because I was constantly
needed. Our social worker asked my husband why I was always nervous
and unfriendly and I told her what I had to put up with.

I collapsed under the stress and strain of our circumstances and
was taken to hospital. Only after this were we given more help but
it was still the same story, just different staff every day. What
we needed were staff who knew our situation and respected us as
individuals.

After four years of living this nightmare our social worker told us
about an independent living scheme and direct payments. We were
assessed again and were allocated more hours – and at night times
too. We were then able to employ our own personal assistants using
direct payments. For the first time, I could sleep at night and
also go out shopping. The independent living scheme gave us the
freedom to choose our staff and to train them, as we required. I
could leave them in charge and feel quite confident in doing so.

We were lucky to find a woman who knew her job and was strong
enough to lift my husband. She has been with us for eight years.
The independent living scheme gave us more than I can say. It was
like being in prison and the direct payments opened the door to
freedom. The scheme gave me back my life and I will always be
grateful.

Caroline Kathuria has a physical disability.