In loving memory of Lucy Watts MBE

We are immensely saddened to learn of Lucy’s death on Wednesday morning. Lucy was an award-winning patient advocate, disability activist, consultant and public speaker. She was a hugely well respected palliative care advocate and a thought leader within this field.

Lucy was one of the most enthusiastic and passionate people who I have ever met, worked with and alongside. She was both a friend and colleague who will be missed dearly.

About Lucy

Lucy was a someone who got things done and the importance of her work is valued by all those who are aware of it. Lucy’s ongoing work and tireless campaigning leaves both a positive and meaningful legacy.

Lucy worked and innovated across an array of different fields. She provided a voice to those whose voice was muffled and campaigned both passionately and gracefully for the worthy causes she believed in.

A few years ago, there was a backlash against the media and those who would call high achieving people living with disabilities and life-limiting illnesses “inspiring”. I would like to take the time to apologise to Lucy because despite her being one of the people who didn’t like this term, she was inspiring. She inspired me and many others in both her life and work.

“I have a life-limiting condition, meaning I have had to do my end of life planning and put things in place for when the time comes, including my advanced care plan, my funeral wishes and lasting power of attorney (LPA). Naturally, my ‘social media will’ is a part of that end of life planning.” 

– Lucy Watts MBE

Lucy's work within digital legacy and digital assets

Once again, I cannot start to sum up the depth and importance of the work Lucy undertook over the years. The rest of this post will highlight a fraction of her work within the field of making plans for our lives digitally and areas relating to safeguarding our digital legacy.

I first met Lucy when working with Together for Short Lives in 2014. This project involved streaming the pantomime ‘Cinderella’ to 12 of children’s hospices at Christmas. After a number of discussions it was clear that Lucy was very interested in utilising technology for future care planning and for philanthropic reasons.

This shared interest led to friendship and collaboration on various projects over the last 9 years.

Documenting wishes within a 'Social Media Will' and informing people about it

Lucy made plans for her digital assets and her online accounts. This is clear today with posts being shared from her personal accounts informing her friends, family and wider society of her death. She spoke openly about her wishes and used her documentation process to help inform and empower others across TV, online and print media.

Insights were shared on the BBC’s ‘Rest in Pixels’ programme, Joan Bakewell’s ‘We need to talk about death’ on BBC Radio 4 and in a news post titled ‘My Social Media Will‘.

Joining MyWishes

Lucy joined the MyWishes team in 2020 as the ‘head of lived experience’. Her role was to “help MyWishes to better understand the end user, improve the user’s experience and help improve the support provided for all users. I will also help ensure that lived experience becomes a core part of MyWishes. We will develop the platform in a co-produced way enriched by the experiences of people who use this service – including those with disabilities, life-limiting illnesses, additional needs and people who are carers, as well as the wider public.” – Lucy Watts MBE

Lucy’s leadership and insights were vital in development of MyWishes. She also spearheaded the development of the ‘postural care passport‘ tool built at the request of Samantha Chadwick who was working for NHS Wales as a children and young people physiotherapist.

“On our gravestone it’s not the data or birth or date of death that matters but the ‘dash’ in between”. – Lucy Watts MBE

A lasting impact

Lucy brought energy, innovation, leadership and value to the world of palliative care, for those with life-limiting illnesses and the wider health eco-system within the UK and beyond. Lucy’s death is a loss for all who knew her and for those who did not.

I would encourage you to learn more about Lucy’s work and lasting legacy by visiting:

Lucy Watts BME

James Norris

Founder of MyWishes. Trying to make a positive change through the use of technology and innovation

Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom

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MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platform empowers society to make plans for both themselves and those they care about.