My name is Les and I am a retired bricklayer. I have a
son called Brian who I care for and has severe learning
disabilities. I have always tried to do the best for Brian, and for
his sister and I believe that the way Brian lives, and how he was
brought up, should not just be dictated by the services offered by
official bodies.
Finding appropriate care and support for Brian has not always
been easy for me. Until some years ago, I relied on staff from
agencies who had been commissioned by the local authority. Over
time, agency staffing and staff absences became a common problem so
I decided to take matters into my own hands.
I persuaded the local authority to allow me to manage
a direct payment to pay for Brian's care. The money was used
to pay for a personal assistant to give Brian regular care. His
personal assistant goes with him to the pub or sports centre,
and works more hours than he's paid for and a good friendship
has built up between them. People with learning
disabilities don't know how to make friends, so this really
helps.
Brian's social skills have improved because he gets to meet lots
of different people. I believe that having a personal assistant
allows Brian to make his own choices. He can do what he
wants to do and not what he would have to do at a day
centre. My son doesn't want to play with crayons or do
painting, he wants to go swimming or to the gym.
Although I managed to set up direct payments for Brian, it was
not easy to manage the financial and legal issues that come with
employing personal assistants. So I, along with four other local
parents, set up a group called the West Lancashire Peer
Support Network. Members of the network share their experiences of
employing a personal assistant in order to help people in
similar situations. We set up the group because there was a
lack of knowledge. You're given these payments, but then you think,
'What happens now?' There were no support mechanisms around.
The network has proved to be so useful that social workers often
refer people to it if they need help managing direct payments.
The network has also built up a register of more than 150
personal assistants working in the area, many of whom can be called
on to help people whose own personal assistant is ill.
I believe that mine and Brian's situation was transformed by a
training course I attended. In 2000, I received a letter which
suggested I attend eight sessions organised by a
group called Partners in Policymaking. It was the best letter
I've ever had, short of one telling me I'd won the Pools. It struck
a chord with me, so I went along. Partners in Policymaking
run courses that train families and carers to work with local
authorities to improve services for them and the people they care
for. Its eight sessions cover different aspects of disability and
explain how carers can show their local
authority how they can get a better service for the same
money or less. With the knowledge of legislation I got
from the course, I was able to help other people.
Instead of banging on the door of social services, I was able to
approach them with a better way of doing things that would
save money. I now use what I learnt through the Partners in
Policymaking courses to help other families through West Lancs Peer
Support Group.
Content reproduced with permission from NHS
Choices website.
Last Updated : 20 January 2011. Page Author: Paul Ferguson.
