(Written by –  Parmi Dheensa – Include Me TOO Executive Director)

This post has been difficult to write as last Thursday I received a message from a wonderful mother Kate sharing the overwhelming sad news of her incredible daughter Lucy Watts who had passed away. I alongside so many who had the privilege meeting Lucy, Kate & Molly (Lucy’s assistance dog) & those who worked with Lucy will feel her loss as she was a formidable young woman, great disability advocate who has truly left her mark in her 29 years.

I met Lucy in 2015 during the Include Me TOO Awards & our charity was delighted to have Lucy become an Ambassador.

Lucy was truly a great role model, an example of the importance of disabled young people’s inclusion and recognition as key actors in the human rights movement & disability advocacy. She was a strong passionate young disability activist who advocated for disabled children & young people’s right to good quality health & social care, holistic person-centred support, independence & rights. Her work, talks, resources for hospice, palliative and end of life care have left an everlasting impact and a legacy as an extraordinary, intelligent, compassionate young woman, who will be very missed.

Lucy supported several charities through her lived experience, strong leadership & knowledge worked tirelessly despite the challenges she had with her life limiting condition which required 24/7 care. Lucy laid strong foundations in her patient advocacy, palliative care and end of life , worked hard for a better future for the disabled community to have choices and be treated with humility and dignity.

Lucy achievements are many which included:

➡ Was elected as Co-Chair role for Pathfinders Neuromuscular Alliance only after a few weeks joining as a trustee for Pathfinders

➡ Supporter and Ambassador for Hospice UK, Together for Short Lives & Festival Spirit

➡ Presented at the World Health Organization (WHO) roundtable on palliative care alongside Stephen Connor of the “Worldwide Hospice Palliative Care Alliance. Advocating for improvements in access to palliative care & symptom relieving medicines.

➡ Amongst those who were Lucy’s friends was Tedros Adhanom Ghebreyesus, WHO Director-General, who spoke highly about Lucy’s work & the power of Lucy’s lived experience, her voice & story as an example of how stories & real lived experiences can make change.

➡ Presented at the Commonwealth Heads of Government Meeting (London) 2018 at the official side event a Disabled Youth Led Round-table Event at the Palaces of Westminster

➡ Digital Leader of the Year in the #DL100 Awards in recognition for how Lucy used tech to enable disabled people and those with health/care needs to have their voices heard & to contribute to research, health, care & society.

➡ Named as the 9th most influential disabled person in Britain – Shaw Trust #DisabilityPower100

➡ At 22 years old Lucy was honoured with a MBE for services to disabled young people.

Lucy Watts MBE we celebrate you & will miss you❤️