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About Lucy
Lucy Watts MBE MUniv FRSA

Lucy Watts MBE is a serial entrepreneur including for-profit business and social entrepreneurship. She is an award-winning patient advocate, disability activist, consultant, public speaker, Independent Advocate, Support Broker and facilitator. Lucy has a passion for the fulfilment of the rights of disabled people, chronically ill individuals, people with terminal or life-shortening conditions, and family/informal carers, but also works for many of the ‘seldom heard’ communities (often incorrectly referred to as ‘hard to reach’). Lucy is committed to equality and human rights and bases much of the work she does on the human, civil, social and cultural rights of disabled people and those accessing health and care services, with a keen appreciation of the disability civil rights and independent living movements. 

Lucy takes her voice and her position very seriously. She detests the term “patient representative” and instead describes herself as a “conduit” — she is very often the vehicle by which the lived experience of many is carried, conveyed and incorporated into discussions at decision-making tables. Lucy believes in speaking up, even if her voice shakes, to uphold the rights, dignity and inclusion of all within society. 

She also takes very seriously her role as an Independent Advocate, fighting for the rights of her clients to be realised, their dignity taken seriously, their quality of life given centre importance, and for them to have equality of opportunity, equality of access an equality of choice and self-determination. Similarly, her work as an Independent Support Broker sees Lucy commissioned by CCGs and Local Authorities to develop care and support plans and packages of support to best meet the needs, wishes and desired outcomes of clients so they can have equality through equity and live their lives as they wish — and to their fullest.

Lucy is founder and CEO of Lived Experience Learning Ltd, a new training, e-learning and education business. She is also the founder and Managing Director of her own company, Lucy Watts Ltd, offering her own services including Independent Advocacy and Support Brokerage, consultancy, facilitation and speaking. A social entrepreneur, she founded the Palliative Care Voices network, an independent palliative care patient and carer advocacy network. Lucy has other business interests and activities in development. 

Lucy is Chair of Pathfinders Neuromuscular Alliance, a Shadow Trustee of St Elizabeth Hospice, a Member of the NHS Assembly, a Peer Leader within the NHS England Personalised Care Strategic Co-Production Group. 

Lucy delivered a popular TEDx talk at TEDxNHS 2019, talking about communication in healthcare, palliative and end of life care, personalised care, and living with a life-limiting/life-shortening illness and defying her prognosis. 

She has also appeared in an Emmy-nominated documentary by the Wall Street Journal.

An unlikely friendship — and how stories make changes:

It was Lucy sharing her story, through her words being taken to the World Health Organistion Executive Board by the Worldwide Hospice Palliative Care Alliance, read out by Dr Stephen Connor, that would lead to an unlikely friendship and a deep and meaningful impact upon the WHO. Dr Tedros, WHO Director-General, immediately asked to speak with Lucy. A telephone call occurred with a request to meet in London. That next month, February 2018, two kindred spirits met. Sharing her story moved Dr Tedros to tears; Lucy’s story full of gratitude, for the excellent healthcare she receives through the NHS, free of charge; the palliative and hospice care she receives; and the access to complex care within the home to enable her to live a great life. And a great life she has lived. Dr Tedros was moved by Lucy, inspired, but also deeply understand that, had the world been different, his son, the same age as Lucy, could’ve been sat in the wheelchair, hooked up to tubes, trying to keep on defying death. Dr Tedros was changed by the meeting; so was Lucy. Tedros frequently shares this story, their meeting, their friendship, and has made new commitments to palliative care and universal health coverage as a result of this; Lucy’s story changed his perspective, made him feel and see the reality, in a way facts and statistics over years just could not. Stories make changes. 

Alan Turing: Sometimes it is the people no one imagines anything of who do the things that no one can imagine. 

Areas of Expertise:

Lucy’s areas of expertise including NHS Continuing Healthcare (NHS CHC); NHS Children and Young People’s Continuing Care; Personal Health Budgets; Integrated Personal Budgets; self-directed support; patient rights in healthcare; communication in healthcare; lived experience and patient involvement; co-production including pioneering digital co-production methods; and ways of involving young disabled people in research; and works on palliative, hospice and end of life care both nationally and globally. 

Lucy’s Achievements and Honours:

Lucy was awarded the MBE at the tender age of 22 for services to young people with disabilities. 

She was awarded an Honorary Degree of Master of the University from the Open University. 

In 2019 Lucy was named the 9th most influential disabled person in Britain in the Disability Power 100 List (and was in the top 100 List in 2018 and 2020). 

She is a Fellow of the Royal Society of Arts, having been invited to become a member for her “commitment to furthering the rights of disabled people”. 

She was name Digital Leader of the Year at the #DL100 Awards 2020.

She is an Individual Member of the Citizen Network. 

Lucy was also a Runner-Up Queen’s Young Leader 2018, a Top 50 Patient Leader in the HSJ Awards 2015,  and a recipient of the Diana Award (2010) and the Jack Petchey Achievement Award (2010)

About Lucy’s Lived Experience:

Lucy is a young disabled woman (she/her). She as a unique genetic life-limiting condition, a COL1A1 mutation that has never been seen or documented before. This encompasses a neuromuscular (muscle weakening), connective tissue, multi-system disorder. It is a life-limiting condition that meant Lucy wasn’t expected to live beyond her 18th birthday, such is the severity of her condition. She spends her life hooked up to intravenous drips, requiring TPN (intravenous nutrition), intravenous fluids and intravenous mediations around the clock. She has other bags and tubes that provide functions that her body is unable. She has been under palliative and hospice care since she was 17. She is a powerchair user in a very specialist powerchair that is customised to meet her needs. She depends on 24/7 care, receiving NHS funds via a Personal Health Budget with which she employs a team of Registered Nurses (RGNs) and Personal Assistants (PAs) to meet her needs. She is also supported by her Cocker Spaniel Assistance Dog, Molly (#MollyDog or Molly, Dog With A Blog) and lives at home in Essex with her Mother, Kate.

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