@NHS from 11/12/17 to 15/12/17
Job title: Patient Leader as well as a Consultant, Ambassador, committee member & young person’s representative for numerous charities and projects and founder of the Palliative Care Voices global patient advocacy network.
Place of treatment/care or work: London and Essex – The Royal London Hospital, University College London Hospital, National Hospital for Neurology and Neurosurgery and Broomfield Hospital (and Southend Hospital for emergency care).
I’m 24 and a passionate Patient Leader, patient advocate, young person’s representative, consultant, speaker, writer and blogger. I dedicate my life to my work, which involves speaking, writing , bblogging, media work, contributing to resources, managing websites, social media and running projects and more. The most common topics of my work are the transition to adulthood, palliative care, patient involvement, young adult care, life-limiting and long-term conditions, sexuality and disability, and complex health needs.
I hold numerous roles from Ambassador for Together for Short Lives, ICPCN and Dreams Come True; to member of the Open University Sexuality Alliance, Hospice UK People in Partnership Group, an NHS England board, the Patient Partnership Panel for the British Medical Journal and two Transition Taskforce regional action groups; to Trustee of the Pseudo Obstruction Research Trust.
I’m a co-researcher on a few projects and I am also a Consultant for the Worldwide Hospice Palliative Care Alliance and founder of Palliative Care Voices, as well as a Huffington Post Blogger.
For my work I received an MBE in the 2016 New Year’s Honours for services to young people with disabilities, aged 22.
My work gives me a purpose because it gives my struggles and experiences meaning, as I can use them constructively to benefit others.
I’m a very positive and determined person. Despite having very complex medical needs and being disabled and very dependent, and despite living with an unknown prognosis which means I shouldn’t have reached the age of 24, I live a great life. I love the life I have, despite everything I go through.
Outside of work, I enjoy writing, photography, making videos and spending time with family. I also have a wonderful Assistance Dog, Molly, whom I trained myself with help from the charity Dog A.I.D.