Helping deafblind people and their families to have an influence on legislation, policy and practice is by far the best thing about my job.
For example, over the past few years deafblind people have had their say on social care reform and there are aspects of the Care Act 2014 that exist only because deafblind people have fought for them.
My role ranges from organising meetings between groups of deafblind people, their families, practitioners and civil servants or other decision-makers, to providing information and advice on taking actions on campaigns or commenting on draft letters and giving reassurance and encouragement.
I work four days a week, mostly from home, though I go to the London office about once a month and attend events.
I am deafblind, which means that I can share experiences and understanding. My communication at work is by email. My computer has special screen reader software that displays text in Braille. When I need to phone people, I use my computer and software that cleverly turns it into a text phone and I call through a text relay service.
I enjoy peace and quiet so I don't feel isolated working from home, although I do enjoy having contact with people. I tend to travel by train and often have a support worker to assist me. At events or in face-to-face meetings I communicate using electronic notetakers or deafblind manual interpreters who use a form of tactile finger spelling. These methods are rather slow, so group discussions and fast presentations can be a bit frustrating because often I can't keep up.
Many deafblind people feel powerless and believe that no one will take notice of them. The hardest aspect of my job is convincing them that if we want things to change we must put feelings of helplessness behind us. Through our actions we can make a difference – but getting deafblind people to that point is tough.
Sense supports and campaigns for children and adults who are deafblind, a combination of sight and hearing impairment that causes difficulty in a range of areas including communication, access to information and mobility