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An extraordinary life well lived: a tribute to Lucy Watts

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Care pathways and transition

Yesterday, we heard the very sad news that Lucy Watts has died.

Our thoughts are with her Mum Kate, sister Victoria and all her family and friends. Lucy touched the lives of thousands and has been a huge inspiration and driving force for change, helping to give young people a voice. Lucy will be greatly missed across the palliative care and disability world and beyond, both here in the UK and globally.

A gifted and eloquent writer, Lucy recently shared a poignant and beautiful poem, reflecting on her health and mortality, called Longing for Life.

“…Each day lived fully; every day treasured
I lived and loved and laughed through strife
Can the worth of my life truly be measured?
Alas, I am stuck here in the in-between
Alive, but not quite, visible but unseen.”

[Excerpt of Lucy Watt’s poem “Longing for Life” – 2 March 2021]

Despite living with a complex health condition, Lucy was a tireless advocate, motivational speaker and disability activist, with the passion and determination to improve the lives of children and young people living with a life-shortening condition, and vitally, to put young people’s transition on the map. Lucy achieved so much in her short life; she leaves a huge legacy and will remain an inspiration to us all. She was committed to doing everything she could to help others, through advocacy and giving others a voice, often through periods of her own ill-health.

We were very fortunate to first meet Lucy and her Mum Kate in 2012. It was clear that Lucy had a lot to say, and a vision to greatly improve the lives of young people like her. Lucy became our first-ever Young Avenger in 2012 and went on to be a keynote speaker at our first Parliamentary Reception at Westminster in 2013. She spoke incredibly powerfully about what life is like for young people making the transition to adulthood, the pressure and anxiety it inferred on families and the wholly inadequate services to support this growing group. The room of professionals and politicians was silent, captivated by this passionate young woman’s refusal to accept the inadequate and the strength to speak truth to power.

Lucy Watts
Lucy Watts attending the Westminster event where she made her first public speech

Lucy and her beloved assistance dog Molly were to become regular visitors to Westminster over the years. To name but a few, Lucy contributed to many of our transition resources and campaigns, including writing about having difficult conversations, young people’s sexuality and giving evidence to the All-Party Parliamentary Group for Children with Palliative Care Needs inquiry into the extent to which the government is meeting its end of life care choice commitment for babies, children and young people.

Lucy spoke honestly and candidly about life and death and everything in between. Always passionate about breaking taboos, Lucy talked with good grace, candour and humour, encouraging us to talk about the big issues for young people living with complex heath conditions that we often avoid – from sex and relationships to death and facing our own mortality. Above all she perfectly articulated the importance of great palliative care and the difference it makes. Her inspirational TEDx talk for TEDxNHS in 2019 began with the question – ‘would you believe me if I said the best years of my life were those when I knew I was dying?’ She went on to speak about the impact of the simple question ‘what do you want to do now?’ as a way of supporting people to achieve their ambitions and goals and adding quality to life.

Lucy’s advocacy meant she was in high demand and she was always willing and able to speak up for palliative care and the needs of young people. She was a member of the NHS Assembly and part of the NHS England Strategic Co-production Group and played a key role in developing international palliative care networks. She received an MBE in the 2016 New Year Honours, for services to young people with disabilities, and in 2019 was named the 9th most influential disabled person in Britain in the Shaw Trust Disability Power 100 List. She also received an Honorary Masters Degree from the Open University for commitment to public services.

We will remember Lucy fondly, as a strong and passionate woman with so much to give, determined to improve the lives of others. Her answer to that question after her diagnosis – ‘what do you want to do now’ was ‘I want my life to mean something, I want to make a difference.’

Lucy made an extraordinary difference – to those lucky enough to know her and to many who she never met through her advocacy and influence on how palliative care has developed over the last decade.

While we mourn her loss and share condolences with her family, we also celebrate her extraordinary life, her huge legacy and the difference she made to so many.

Andy Fletcher is CEO of Together for Short Lives and first met and worked with Lucy in 2013.

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