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 works for many different communities across her various subjects and areas of work. Lucy is committed to equality and human rights and takes a rights-based approach to her work, regularly deploying human, civil, social and cultural rights to improve the lives of different communities, particularly 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 roles as an Independent Advocate and Support Broker, working directly on the frontline with people needing support and ensuring their needs are met, their dignity is maintained, their right to agency and autonomy is upheld and they have the ability to live a life that is worthwhile and enjoyable for them, with all the right support, funding and services in place to make that happen.
Lucy is a disabled woman (she/her) who has had to overcome low expectations and great adversity to get to where she is today and to attain the achievements she has accumulated over the years, all the while living with the knowledge her condition will shorten her life, and conducting her daily life with the support of intensive interventions to sustain her life, and round-the-clock nursing and care. Lucy has been defying the odds for many years and does so in spectacular fashion. She endeavours to live “a life worth living” at all times, and to use her time and abilities to create change for others.
Lucy’s work takes place across a wide spectrum of topics and niches, and across different sectors, including governance (charity and business); inclusive governance; strategy and strategic planning facilitation; equality/equity, diversity and inclusion (EDI) with a particular focus on disability and complex needs; user-led organisational structures; user-led change management and innovation; co-production and collaborative practice; patient/user engagement; patient/user experience; utilising lived experience as an asset and its key role in change, transformation and growth; lived experience-led training, particularly in health and social care education, training and CPD; disability in business and employment including reasonable adjustments; human rights and disability rights across the spectrum; patient rights in healthcare; dignity, autonomy and agency in health and care; self-directed support including Personal Health Budgets; communication in healthcare; shared and informed decision-making; peer support; project management; co-production facilitation, digital co-production methods and involvement/engagement practice; entrepreneurship; and co-research in the medical/health and social science sectors.
Lucy is an entrepreneur and social entrepreneur, as well as a very accomplished individual. She works across business, the public sector and the third sector, with particular work focussing on the NHS, lived experience and D/deaf and disabled people’s organisations.
Lucy is founder and CEO of Lived Experience Learning Ltd, a startup business offering training, e-learning, education services, consultancy, audits and disability and equality related professional services. The business works B2B and B2C. Working alongside Lucy in this business is her business partner, Damian Joseph Bridgeman FRSA, and together they are developing and growing the company. Lucy’s idea for Lived Experience Learning saw her win a Young Innovators Award and a related grant to assist with its setup.
Lucy is the founder and Managing Director of Lucy Watts Ltd, her business offering her own services including Independent Advocacy and Support Brokerage, consultancy, facilitation and speaking. Lucy Watts Ltd is a very small “solopreneur” venture.
Also a social entrepreneur, Lucy founded the Palliative Care Voices network, an independent, international palliative care patient and carer advocacy network. Palliative Care Voices was the first of its kind, with no other patient- and carer-led palliative care advocacy and support network existing internationally. Independent in running, but supported by the Worldwide Hospice Palliative Care Alliance (WHPCA), Palliative Care Voices has led to some groundbreaking commitments to palliative care by the World Health Organisation and has elevated the voices of patients (especially) and carers in palliative care and health advocacy and lobbying, including taking the words of individuals to – and even supporting people to attend – meetings of the World Health Organisation. PCV and the WHPCA are the only ones doing this in this field.
Lucy has other business interests and activities in development.
Lucy holds the following roles:
- Chair of Pathfinders Neuromuscular Alliance – a user-led, pan-neuromuscular condition charity, for which she oversees the running of the charity, its governance, leads on governance and policy development, sets the organisational culture, oversees strategy and its implementation, holds the organisation and its staff to account, assists the CEOs and works closely with them, appraises the CEOs as needed, and gets involved with the charity to keep her knowledge up in all areas of the charity and its work. She became a Trustee in October 2020 and Chair in November 2020.
- Shadow Trustee of St Elizabeth Hospice, since March 2020, supporting the charity through COVID, assisting with business planning and strategy development, oversight of the organisation and getting involved in different committees and areas of work within the charity; her particular non-board involvement comes within the ZEST service, the hospice’s enterprise aimed at young people to help fund the young adult support service within the charity.
- Patron of Arkbound, to which Lucy brings her equality and diversity and inclusion background, her disability rights knowledge, her passion for mentoring and peer support and using creativity as a tool for growth and therapy, including her love of writing and how she uses this as a coping too. She hopes to be able to help the charity to further its work.
- Former Trustee of the Pseudo Obstruction Research Trust (PORT) from 2014-2019. A small rare disease medical research charity, Lucy voluntarily ran the charity in partnership with the Chairperson, doing much of the day to day work, until she decided to move on in 2019 after 5 years as a Trustee and 8 years in total as a volunteer (when you combine the 3 years as a volunteer with the 5 years as a Trustee).
She has volunteered with many charities and organisations including the International Children’s Palliative Care Network (Global Youth Ambassador), Hospice UK (People in Partnership Group), Together for Short Lives (Ambassador and Young Expert), Include me TOO (Ambassador), Dreams Come True (Ambassador), Muscular Dystrophy UK (Trailblazer) and many more.
She also undertakes a great deal of work in a voluntary or off-payroll working paid capacity, including:
- Member of the NHS Assembly, who oversee the implementation of the Long Term Plan.
- Peer Leader within the NHS England Personalised Care Strategic Co-Production Group.
- NHS Patient and Public Voice activities and roles, working on different committees and subcommittees, advising on policy and guidance, developing resources, advising different departments and pieces of work, and supporting the delivery of support to national, regional and local NHS organisations.
- Former member of the NHS England Personalised Care Organisational Development Board; NHS England End of Life Commissioning Steering Board; NHS England Medicines Review Board, Service Specification, for GP Contracts; the NHS England Children with Complex Needs and SEND Board; and the NHS Children and Young People’s Health Outcomes Forum.
Speaking and Other Activities:
Lucy is a sought-after speaker, able to give engaging and entertaining motivational and after-dinner speeches as well as informative and educational talks such as for the NHS and social care. She’s a popular speaker within healthcare, palliative care, disability and social care, known for her approach using consultative speaking, tailoring every speech to the unique needs of that audience, organisation or conference outcome.
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. “Once Sentence That Transformed My Life” can be watched by clicking here.
She is a frequent speaker, trainer, lecturer or delivering workshops for:
- NHS organisations including trusts, other bodies, quality improvement services and non-departmental bodies
- NHS England Personalised Care Team
- Healthcare Conferences UK (HCUK)
- Westminster Health Forum
- Open University Sexuality Alliance
- NHS Graduate Management Training Scheme
- and many others.
Every year she delivers a lecture on the Hospice Leadership Module of the MSc in Voluntary Sector Management for The Business School (formerly Cass Business School), talking to the students about her lived experience, Lucy’s vision for the future of hospices and palliative care services, ways of engaging people with lived experience at all levels of hospices and third sector organisations, and different funding and delivery models.
She has also appeared in an Emmy-nominated documentary by the Wall Street Journal, “E-Ternal: A Tech Quest to ‘Live’ Forever”. Filmed in-person in Autumn 2019 and virtually in 2020, due to COVID-19, Lucy and her mother, Kate, talk about Lucy’s life, conditions, her digital plans and you see them on a journey to create a digital legacy item that may support Kate when Lucy is no longer here.
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.
Lucy was awarded the MBE (Member of the Most Excellent Order of the British Empire) 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 2018.
In 2019 Lucy was named the 9th most influential disabled person in Britain in the Disability Power 100 List (and was also in the top 100 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.
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)
- Fellow of the Royal Society of Arts
- Member of the Support Brokerage Network (Imagineer Development UK CIC)
- Member of the International Association of Facilitators
- Member of the Citizen Network
- Member of the International Association of Hospice and Palliative Care (IAHPC)
- Affiliate Member – iHuman (the Research Institute for the Study of the Human) at the University of Sheffield
- A Member of Hospice UK’s People in Partnership Group
- A Member of the NHS England Peer Leader Network
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.
Lucy’s Media/Press Kit will be coming soon.