Thank You Lucy – Your legacy will live on

Lucy Watts MBE – 1994 – 2023

We are all at ICPCN immensely saddened to hear of Lucy’s death on the 26th April 2023 at Southend Hospital. Lucy was a passionate champion of hospice and palliative care across all ages, especially for children and young adults, advocating for global access to palliative care and disability rights for all, regardless of where in the world they live. Her indomitable spirit shone through in all that she did and achieved and she outlived her initial prognosis by many years – using her energy and passion to advocate for palliative care and disability rights.

Lucy lived at home with her mother Kate, and for many years her Assistance Dog, Molly, who she trained to provide support to her with help from the charity Dog Assistance in Disability. Following a normal and energetic childhood, Lucy had a life-limiting condition, an undiagnosed, progressive neuromuscular disease that meant she had very complex health needs and required round the clock care.

She had multiple organ failure and was dependent on Total Parenteral Nutrition (TPN), thus being fed directly into her bloodstream , as well as intravenous medications and fluids around the clock.  Alongside this she had a gastrostomy tube to drain her stomach as well as an Ileostomy and a Urostomy. She received palliative care since the age of 17 and was supported by several different hospices including the J’s Hospice (a local young adult hospice-at-home service) along with Southend Hospice.

She recognised the importance and value of access to palliative care and the difference that it made to her life, yet was aware that many people around the world had no access to palliative care services, and were suffering needlessly. Thus, she used any opportunity that she could to advocate for access to palliative care at the national, regional and international level.

Her work involved writing, speaking, media work, sitting on national and regional boards, co-leading research, consultancy and advisory roles, working with charities in various roles, such as Together for Short Lives, the International Children’s Palliative Care Network (ICPCN) and the Worldwide Hospice Palliative Care Alliance (WHPCA). She also set up an international palliative care patient and carer network in 2017 called Palliative Care Voices, and worked with individuals to raise awareness of issues of sexuality within young people with palliative care needs.

Despite her poor health, Lucy was an advocate to the end, contributing to books, papers, TED talks, blogs, social media and generally doing what she could to raise awareness of palliative care. She was also key to promoting palliative care with the World Health Organization, and would regularly meet and speak with the Director General Dr Tedros. In 2016 she received an MBE for services to young people with disabilities; a huge achievement for someone who was just 22 at the time.

Alongside Lucy, her mother Kate and beloved assistance dog Molly were there to support her and enable her to do all that she did – her work and legacy would not have been possible without them, her sister and others who supported and cared for her day in day out. She commented that “despite my illness, I live a great life – a life I love.” She loved her work and on her blog ( she once wrote: “My biggest fear in life is that I won’t have made a difference, that my life won’t mean anything. I hope I am making a difference with what I am doing”. She was always keen to remind people that “palliative care is not just about dying, It’s about living as well.”

Lucy’s enduring legacy will be that she campaigned tirelessly, despite many personal challenges, to increase access to the palliative care that she received, and which she fervently believed should be available to everyone, no matter where they lived. The world will be the poorer without her energy and determination as a formidable campaigner and we will miss her greatly.

All of us at ICPCN send her family and friends our deepest condolences and say “Thank you Lucy”.