Lucy is a 26 year old woman with a life-limiting condition and complex health needs. She’s a social entrepreneur, prominent patient advocate and disability activist, a distinguished (and in-demand) speaker and an independent advocate, as well as a media commentator, blogger and peer mentor. Named as the 9th most influential disabled person in Britain in 2019, Lucy is also a Member of the Order of the British Empire (MBE), appointed in 2016 at the tender age of 22, for services to young people with disabilities, appointed Master of the University by the Open University in 2018 for commitment to public service, a Fellow of the Royal Society of Arts, Manufacture and Commerce (FRSA), a Top 50 Patient Leader (HSJ, 2015) and the recipient of the Jack Petchey Achievement Award (2010), the Diana Award (2010), a finalist in the 2019 Women of the Future Awards (Community Spirit category) and a 2018 Queen’s Young Leader runner-up.
Lucy was born with health issues and deteriorated throughout childhood, having various medical interventions and care during her childhood, but for all intents and purpose led a relatively normal life, until age 14 when things had progressed to the point that Lucy became dependent upon a wheelchair for mobility, quickly became bed bound and she developed multiple-organ failure and became seriously ill. Since then, her condition has rapidly progressed. Lucy depends on 24/7 care, mostly provided by specialist nurses and trained carers (PAs), needs intensive intervention to survive including intravenous feeding (TPN), intravenous fluids and medications, intravenous antibiotics, other buccal and patch medications, she has a PEG or gastrostomy tube constantly draining her stomach, an Ileostomy and also a Urostomy (specifically an Ileal Conduit), she uses a specialist powered wheelchair for mobility, hoisting to transfer, and needs help with almost every task. Lucy’s condition is life-limiting, it will shorten her lifespan. Her original prognosis was that she wouldn’t see her 18th birthday, but here she is at 26 with a lot of living yet to do! She has also survived sepsis 14 times, and lives with a number of chronic, incurable infections.
Lucy holds a number of roles within various organisations, is involved in numerous projects, sits on various committees and more. These include being elected to sit on the NHS Assembly, a member of the NHS England Strategic Coproduction Group, the NHS End Of Life Commissioning Steering Group and two transition regional action groups (North London and East of England), Ambassador of Dog A.I.D. and Include Me TOO, a Project Management Lead and Member of the Open University Sexuality Alliance, for whom she also founded their young advisory group, AdversiTeam, works with the Digital Legacy Association as their Patient Lead, and is a Young Shadow Trustee of St Elizabeth Hospice. Lucy does a lot of work within palliative care, both nationally and internationally, independently and through roles including as a member of the Hospice UK People in Partnership group, an Ambassador and Young Expert for Together for Short Lives, her aforementioned role on the NHS End of Life Commissioning Steering Group, internationally via her role as an independent consultant for the Worldwide Hospice Palliative Care Alliance (WHPCA) and the International Children’s Palliative Care Network, and other work she undertakes, including influencing the World Health Organisation (WHO). Lucy also founded a pioneering international palliative care patient and carer advocacy network, Palliative Care Voices, in 2017. Further to this, Lucy co-leads research and is involved in more than a few research projects at various stages from early development to analysis and dissemination, including on young disabled people’s lives and experiences, on dignity therapy interventions, on youth involvement and others, and was a Patient Advisor to a medical research project. She speaks at various events and functions, in front of audiences ranging from 8 people up to 1,100, including giving a TEDx talk in 2019, speaking at national conferences and down to small local groups, as well as international conferences via video link or pre-recorded video. She frequently delivers workshops and training including for NHS staff, is setting herself up as an Independent Advocate as she is in demand to do so, appears in the media, has appeared in a few documentaries (some still in development), has contributed to or appeared in various books, has her own book in development, is in the process of setting up a charity, and also delivers talks and demonstrations with her Assistance Dog Molly to raise money for the charity who helped train Molly (Dog A.I.D.).
Lucy also has a job, well various jobs, and is financially self-sufficient. She works as a self-employed administrator, comms, marketing, fundraising and social media manager for Festival Spirit, a charity who provide disability-accessible accommodation at festivals for people with complex disabilities and medical conditions who need specialist equipment and support in order to camp at the festival. Within the tent they have individual cubicles with each cubicle having an electric profiling bed and a carer bed, they provide electricity, lighting, heating, hard flooring, mobile hoists, a larger carers area, wheelchair charging area, medication fridge, and a separate kitchen tent. Lucy herself has benefitted from the charity and was delighted to take up a paid role working for the charity. Lucy also does freelance/self-employed work for other clients, paid speaking engagements and a casual employed role with the University of Sheffield as a Research Assistant, specifically working on a project with UoS for Youth Employment UK. Furthermore, she offers a service as an independent advocate, offers healthcare staff training, and empowerment workshops for young disabled people.