@NHS from 12/02/18 to 16/02/18
Condition: Duchenne muscular dystrophy
Place of treatment: West Sussex
I am 37 and an adult living with Duchenne muscular dystrophy (DMD). I have managed a Personal Health Budget since 2014 to meet my health & care needs, which I use to employ a team of Personal Assistants to provide round-the-clock care. I live independently in my own flat with my partner in Shoreham-by-Sea.
I was diagnosed with Duchenne when I was three years old, and have gradually lost muscle function over time. I am now almost paralysed and rely on a ventilator to breathe. Yet I have an excellent quality of life.
In 2014 I co-founded DMD Pathfinders with Mark Chapman, a fellow adult with DMD. DMD Pathfinders is a user led organisation of adults living with Duchenne which provides advice, guidance and support for other teenagers and adults living with the condition. In 2016 I became the CEO on a part-time basis.
I am a patient advocate and campaigner and produced the 2012 documentary, A Life Worth Living: Pushing the Limits of Duchenne following my journey around the UK and Europe to meet other adults living with DMD.
I also sit on the NHS England Strategic Co-production Group for Personalised Care, an advisory group of people with lived experience of personalisation in the NHS.
I am also the Chair of Trustees of Possibility People, a user led organisation of disabled people in Sussex which provides advice, advocacy and support.
I was awarded a PhD in Government from the University of Essex in 2008 and have previously worked in two separate disability charities and as a Political Assistant at a City Council before taking up my role at DMD Pathfinders.
I enjoy movies, video games and technology and love socialising with friends. I also like to travel and visit new places.