Guest Blog By Lucy Watts MBE
Lucy Watts lives with a debilitating, life-shortening illness, but far from holding her back, it’s nurtured a determination to become a powerful voice for those who are often forgotten or ignored by society. Lucy has taken on their causes with extraordinary success. This is the story of a woman who refuses to take “no” for an answer and is embracing every precious minute of every day.
There are people in society whose voices still go largely unheard. We are either invisible or targeted with negative rhetoric in the media. We rarely have a seat at the table. I’m referring to people with disabilities, health needs, learning needs, neurodiversity and/or mental health needs, as well as family/unpaid carers.
I am one of those people. I live with a life-shortening illness, now being 10 years beyond my original prognosis, as well as extremely complex medical needs requiring 24/7 care. However, I’ve been able to turn my lived experience into an asset to be utilised for the benefit of others. I’ve been able to have my voice heard.
I completely lost my focus in my teenage years when my illness really took hold. Too ill for school and bed-bound, tech became my window to the world. I completed 10 GCSEs with 6 hours per week home tuition and then tried to do AS levels but soon had to give those up. Then, in 2011, my palliative care nurse asked me “So what do you want to do now?” – the first professional to ask me what I wanted – and I blurted out “I want to make a difference”. Soon, I was working with various charities, collaborating with the NHS, appearing in the media and I had regained a sense of purpose.
However, I recognised there was still so much to be done. I was educated, articulate and – though I had not always been this way – very able to speak up. I was speaking at receptions in both Houses of Parliament, meeting with the Director-General of the World Health Organisation (at his request), training health and palliative care professionals, participating in and co-leading research, heading up conferences delivering the keynote speech, advising high-level professionals, sitting on committees and more. I had power – I had claimed it for myself, and for my peers, and others respected that power. For my work, I received an MBE at the age of 22, I was named 9th most influential disabled person in Britain in 2019, and most recently, 2020 Digital Leader of the Year.
I began to develop ways for the other unheard voices to be included. I set up the pioneering international palliative care patient and carer advocacy network, Palliative Care Voices, based virtually in a Facebook Group, giving these direct stakeholders a voice internationally for the first time; I set up a young people’s advisory group for the Open University Sexuality Alliance, in which the young people could get involved via Facebook, WhatsApp, Messenger, Zoom and email; I developed a co-production method for a research project based out of a WhatsApp group, which was a group of young disabled women feeding into research, and we conducted our data gathering using video calling software, Messenger, WhatsApp and other tools; and recently for another project I pioneered a five-day, Facebook-based virtual focus group to allow data collection in a way that also build community. I also work as an Independent Advocate and Support Broker, helping people fight for care and support and to build complex care packages for individuals and commissioners, in which tech is a key part of facilitating that work. I also mentor other disabled and chronically ill individuals, helping them find their voice and to get involved.
I am now setting up a new business which will develop a lived experience-led e-learning platform, with courses educating professionals on the lived experience perspective and also providing courses to benefit people with lived experience.
My life is devoted to making a difference. I was truly honoured to become Digital Leader of the Year 2020, since tech has been a key enabler in my life and a pivotal enabler for my work, not only allowing my engagement with the world and with others, but equally, their engagement with me. I’ve then utilised the tech and tools available to give a platform to the unheard, as best I can to redress the balance and give people the ability to be seen, heard and their experience valued. Lived experience is an asset – we all have it, and it informs all of our values, beliefs, actions and behaviours – and we must use that to benefit the world. When my time comes, I can hand on heart say I contributed something to the world; for me, that’s what makes my life worth living. Awards are wonderful, but it’s the doing of the work that gives me the enjoyment and feeling of achievement. I feel privileged to live the life I do – it may be different from the life I had planned, but if anything it’s more impactful than the life I would’ve lived otherwise.