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About Lucy

Lucy is a prominent disability and health advocate, activist and consultant. She’s a committed individual who dedicates her time to making a difference for others. As a disabled young woman, Lucy has to overcome a wide variety of barriers, not least the low expectations of disabled people by others and the lack of accessibility, as well as living with a complex, life-limiting illness causing complex medical needs. Lucy is not one to allow barriers to get in the way and has created a life for herself that is enjoyable and fulfilling and contributes to society.

Lucy’s work spans various topics, issues and roles, including as a paid consultant, a speaker, an Ambassador for various charities, Trusteeships, committee member, research collaborator, peer mentor and patient leader. A list of her roles can be found below. Lucy’s work originated from a conversation with her palliative care nurse in 2011. Whilst doing Lucy’s advance care (end of life) planning, Lucy suddenly and unexpectedly (even to herself) exclaimed that she was scared that she’s die and be forgotten, that nothing would be different or better because of her and that her life wouldn’t have meant anything, that she wanted to make a difference. This conversation would transform her life. Lucy had, at the time, just had to let go of the dream of becoming a doctor that she’d geared her life towards from an early age, due to her illness and disability having progressed to the point that she wouldn’t be able to fulfil that dream, and Lucy had lost her focus in life. The hospice supporting Lucy asked her to do some filming and Lucy accepted, also being encouraged by a journalist volunteering at the hospice to start a blog, which Lucy finally started in 2012 (Lucy’s Light). She did some more filming for the hospice a year later, but it wasn’t enough. Then, Lucy’s palliative care nurse heard that the charity Together for Short Lives (TfSL) were looking for young people to join their newly created Young Ambassadors Network, known as the Young Avengers, as well as looking for a young person to speak at their reception in the House of Commons. Despite the fact that Lucy had never given a speech before, and previously having always avoided being centre of attention, Lucy accepted the opportunity. This speech took place in November 2013 and Lucy delivered her speech, finishing to a round of applause, and having the amazing feeling of achievement.  This was a pivotal moment in Lucy’s life; she’d found her purpose.

Lucy’s Illness and Disability:

Lucy lives with a life-limiting condition, a rare neuromuscular disease that has recently been narrowed done to being a rare form of Mitochondrial Disease, exactly what the specific form of “Mito” and gene mutation are is as yet unknown. This has caused multiple organ failure and complications affecting most organs and body systems, necessitating intravenous nutrition (TPN) and medication, various interventions, devices and surgically created stomas, as well as being dependent on the use of an electric wheelchair, and requiring round the clock care. Lucy has exceeded her prognosis and has benefitted from palliative care for eight years. 

Lucy had health problems from birth and regularly saw medical professionals but managed to live a somewhat normal life until she became completely disabled and seriously ill at the age of 14. At 14 she needed a wheelchair for mobility and became housebound and soon after, completely bed bound, requiring round the clock care. Despite this, she was determined to do her GCSEs, 10 of them, at the same time as her former peers, which she achieved with 6 hours per week home tuition and hours of self-directed learning, gaining all 10 GCSEs at A* to C grade, consisting of an A* in Sociology, A in English, Biology and Physics, B in Maths and Chemistry, C in French and two distinctions and a pass in IT. Lucy started college part time in the sciences, but was forced to give this up 6 months later. 

Lucy’s condition is extremely complex and she depends on a lot of intervention to survive. Over the years, Lucy’s condition has progressed and become more fragile and increasingly difficult to manage, indeed many times Lucy has suffered various complications and battles with sepsis, being lucky to survive. Her condition is progressive and it will shorten her lifespan, in fact in 2012 she was told she wasn’t expected to live another 5 years. She’s still here, however, and determined to continue defying the odds. 

Lucy’s honours and awards include:

  • Member of the Most Excellent Order of the British Empire (MBE) for services to young people with disabilities in the 2016 New Years Honours
  • Honorary Degree of Master of the University (MUniv) from the Open University for commitment to public services (2018)
  • Shaw Trust Disability Power 100 List 2018 – recognising the 100 most influential disabled people in Britain
  • Became a Fellow of the Royal Society for the encouragement of Arts, Manufactures and Commerce (FRSA) in February 2019
  • Runner-up for the 2018 Queen’s Young Leaders
  • Health Service Journal Top 50 Patient Leader (2015)
  • Jack Petchey Award for Achievement (2010)
  • Diana Award for achievement and being a positive role model (2010)

Current Roles:

  • Ambassador/Young Avenger for Together for Short Lives
  • Global Youth Ambassador for the International Children’s Palliative Care Network
  • Trustee of the Pseudo Obstruction Research Trust
  • Ambassador for Dreams Come True
  • Member of the Open University Sexuality Alliance – & Founder & Chair of the Young Advisory Group “AdversiTeam”
  • People in Partnership Forum Member for Hospice UK
  • Trailblazer for Muscular Dystrophy UK
  • Patient & Young People’s Lead for the Digital Legacy Association
  • Member of the NHS England Children Complex Needs & SEND Board (CCN SEND)
  • Lead Co-Researcher for Living Life To The Fullest
  • Patient Reviewer for the British Medical Journal
  • Patient Partnership Panel Member for the British Medical Journal
  • Independent Consultant for the Worldwide Hospice Palliative Care Alliance
  • Co-Researcher for the Dignity Therapy Research Project (MAGICYL)
  • Founder of Palliative Care Voices
  • Member of the Transition Taskforce East of England Regional Action Group
  • Member of the Transition Taskforce North London Regional Action Group
  • Young Person’s Representative for the Ofsted & Care Quality Commission External Board for SEND Area Inspections
  • Member of the NHS Peer Leadership Academy (2018 intake)
  • 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)
  • Include Me TOO Ambassador
  • Founder of the Young Adult Complex Condition Alliance (YACCA)
  • #MedLearn Ambassador
  • ehospice contributor
  • Member of the NHS Peer Leadership Academy Autumn 2018
  • Member of the NHS England Personalised Care Strategic Coproduction Group
  • Young Ambassador – Dog Assistance in Disability (Dog A.I.D.)
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1109522554 Miss Lucy Watts, MBE. Picture date: Thursday 9 June 2016. Copyright: PA Photos NOT FOR PUBLICATION WITHOUT WRITTEN CONSENT OF PA PHOTOS : 020 7963 7305.
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UK children’s palliative care charity Together for Short Lives announces a report by the APPG on how to improve palliative care for young people.
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