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Get In Touch

Email: support@total.com
Phone: 1-800-Total-Theme
Address: Las Vegas, Nevada

Our Location

My Current Roles

I’ve included a full list of my current roles and projects, mostly voluntary, which does not include my paid work/self employment, nor does it include all the one-off or short-term work I do.

Roles & Projects:

  • Member of the Open University Sexuality Alliance & Chair of the AdversiTeam Young Advisory Group – also Project Manager of the “Talking about…sex and relationships: young people speak out” project
  • Founder of Palliative Care Voices
  • People in Partnership Steering Group Member for Hospice UK
  • Independent Consultant for the Worldwide Hospice Palliative Care Alliance
  • Trailblazer for Muscular Dystrophy UK
  • Patient and Young People’s Lead for the Digital Legacy Association
  • Include Me TOO Ambassador
  • Young Ambassador for Dog Assistance in Disability (Dog A.I.D.)
  • Founder of the Young Adult Complex Condition Alliance (YACCA) – currently in development.

Committees & Boards:

  • Member of the NHS Assembly
  • Member of the NHS England Personalised Care Strategic Coproduction Group
  • Member of the NHS England End Of Life Commissioning Steering Group
  • Member of the NHS Citizen Advisory Group
  • Member of the Transition Taskforce East of England Regional Action Group
  • Member of the Transition Taskforce North London Regional Action Group
  • Member of the NHS England Children Complex Needs & SEND Board (CCN SEND)

Research:

  • Lead Co-Researcher for Living Life To The Fullest
  • Co-Researcher for the Dignity Therapy Research Project (MAGICYL)
  • Other research projects in development

Charity:

  • Ambassador & Young Avenger for Together for Short Lives
  • Global Youth Ambassador for the International Children’s Palliative Care Network
  • Ambassador for Dreams Come True

Other:

  • Huffington Post blogger
  • Blogger at Lucy’s Light
  • Affiliate Member of iHuman (The Research Institute for the Study of the Human at the University of Sheffield)
  • #MedLearn Ambassador
  • ehospice contributor
  • Member of the Autumn 2018 NHS Peer Leadership Academy

Former Roles:

  • Trustee of the Pseudo Obstruction Research Trust
  • Lay member for NICE End of Life Guideline Committee
  • Young Person’s Representative for the Ofsted and Care Quality Commission External Board for SEND Area Inspections
  • Patient Reviewer for the British Medical Journal
  • Patient Partnership Panel Member for the British Medical Journal
Last Updated: 23.01.2020
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