Jon Hastie

Jon Hastie@NHS from 12/02/18 to 16/02/18  

Twitter: @DrJonHastie

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.