Hospice UK is hugely sad to learn that Lucy Watts MBE, a tireless campaigner for hospice, palliative and end of life care, has died.
"She was remarkable in so many ways, a true champion for hospice care and the rights of people living with disabilities and complex health conditions. And of course her quite extraordinary understanding with her dog Molly. Above all, Lucy was for many years one of the clearest, most articulate and compelling voices across our entire palliative care community."
Toby Porter, Hospice UK CEO
Despite being born with a life-limiting condition, Lucy went undiagnosed until the age of 14, when her condition deteriorated to the extent that she was reliant on 24/7 care and wasn't expected to reach her 18th birthday.
That she became a tireless campaigner for hospice, palliative and end of life care - and was so for many years, well beyond her original prognosis - says everything about her personality and extraordinary ability to bring people together. Her powers of persuasion even included presenting a TEDTalk, and working with Dr Tedros, the Director General of the World Health Organisation.
In 2019 her work led Lucy to being named the 9th most influential person with disabilities in the UK; and she was awarded the MBE for her campaigning. The Open University honoured her with an honorary masters degree - but despite the attention and accolades that came her way, she always simply preferred to be known as Lucy.
For Hospice UK, Lucy worked on our People in Partnership forum, bringing her knowledge of palliative care for young people and helping our work to ensure that people with lived experience have a greater say in hospice care. Lucy - and her companion dog Molly - were hugely popular on the forum, and also at many of our conferences.
In 2018, Lucy spoke passionately about her experiences of living with a life-limiting condition at our National Conference.
And in 2019, she provided one of the most compelling plenary sessions seen at the National Conference, talking with Leah Booth about a subject that isn't often discussed publicly - looking at sexuality and emotional wellbeing.
She was also an advocate for the Dying Matters campaign. In a powerful piece written for Havens Hospices (where Lucy received care on a number of occasions), she talked openly about her experience of care within the hospice:
"All the staff took time to talk with me, to get to know me, talking about Molly and my work and encouraging me to keep focussed on my goals. I regularly saw members of the wellbeing team including the spiritual care lead, as well as seeing the social worker and some support from the creative therapist. At the hospice I was Lucy the person, not Lucy the patient."
She also took part in the first series of the Dying Matters podcast, talking about the importance of talking about death and dying with young people.
Lucy touched the lives of millions of people in a hugely positive way. It was impossible not to see Lucy and Molly at a Hospice UK event and not come out of it without a smile on your face.
Everyone who worked with Lucy is proud and privileged to have known her. In addition to working with Hospice UK, Lucy was a huge supporter of Together for Short Lives, as one of their Ambassadors, and worked too with Marie Curie.
Hospice UK sends its condolences to Lucy's family and her many friends, both in the UK, and around the world.
Death is a normal part of life. Facing & embracing death can help you live a better life.
Lucy Watts MBE