How I helped an inquiry

I work at Rotherham Speak Up, a self-advocacy group run by and for
people with learning difficulties. My parents told me about Speak
Up when I was a little girl. Now I work there and speak for other
people. I am a good self-advocate.

I was surprised and pleased when asked to help with the Commission
for Health Improvement’s (CHI) investigation into Bedfordshire and
Luton Community NHS Trust. I thought the role might go to someone
at Speak Up with more experience but my support worker Annie asked
me if I wanted to do it.

I went to London to work with CHI. I had a couple of meetings with
the investigations manager to talk about what was going to happen
and why they needed me. As a team, we wanted to know how the people
with learning difficulties in the trust were living and if they had
choices. It was interesting but a bit scary because I was trying to
think what I would see and the questions I would ask.

Being part of the investigation made me feel sorry for the people
in the trust. I make my own decisions and look after myself but the
people I saw can’t because they need someone to help them. I
expected that they would have choices but often they didn’t. They
were not being treated as equals. I interviewed some people, which
was frightening at first but I felt more relaxed when I got used to
asking questions. It was a good experience for me as it was the
first time I had ever done something like it.

There were times during the investigation when people used words
that I did not understand and talked in jargon. I had to ask them
to speak in plain English. In the end they did it well and I felt
like one of them.

What really interested me was getting to know the team and
interviewing people. I found it really interesting and getting to
speak for myself was really good for me. But I enjoyed it all;
there isn’t any one best moment as I enjoyed every bit of it.

I was impressed about how important my point of view was to the
team. I feel that I did a good job and understand exactly how
people with learning difficulties feel and know how frightening
things can be for them because I have seen and experienced this
myself. Some people don’t always have the voice to speak up. I am
lucky that I do and think I really made a difference and helped. I
was able to tell the team things they might not have noticed and
would not have experienced themselves.

It was great to be able to help with something that was very
important and also to be given the chance to be equally involved in
something challenging and rewarding. I feel that my involvement
will make life better for those people at the trust.

Vicki Farnsworth works at Rotherham Speak Up, and is a
service user with learning difficulties.