A cup of tea with Lucy
What inspires you?
I am inspired by people who overcome difficulties, not just disability but any difficult situation or hardship. I am also inspired to do my work by the difficulties faced by people with long term conditions and disabilities, and anyone accessing health and social care. I want to be a voice for those who are unable to speak for themselves or don’t have the opportunity to speak up and be heard. It’s very important to me for my life to count and to leave my mark on the world and this also drives me to do what I do.
How would you define yourself?
I define myself as Lucy Watts MBE, Patient Leader, Charity Ambassador, Writer and Speaker. I so often introduce myself as my name then my conditions but I do prefer to be defined by what I do, not what afflicts me. I am a person with a condition, not just a condition, and I am a disabled person, but it’s not all I am.
Tell us a bit more about your important work and collaboration with so many different charities
My charity, health and disability work is my life. It takes the form of writing, speaking, attending events and appearing in videos shown at conferences worldwide, but also in the media, written media, TV and radio. I love my work, I love making a difference and being a voice for others. It gives me a positive focus and a purpose, and turns all experiences, especially the negative ones, into positive results. Currently I hold 7 positions as:
Ambassador and Young Avenger for Together for Short Lives
Global Youth Ambassador for the International Children’s Palliative Care Network
Trustee of the Pseudo Obstruction Research Trust
Member of the Open University Sexuality Alliance
Lay member of a NICE Guideline Committee
People in Partnership Member for the National Council for Palliative Care
And of course Ambassador for Dreams Come True.
I devote my life to my work, I may be in bed a lot of the time but that time is spent working. I am always doing one thing or another, incapable of relaxing. I do love what I do and to be able to contribute to society. My work covers areas including healthcare, social care, long term conditions, young people’s health, young adults with life-shortening conditions, palliative and hospice care, especially children’s and young people’s palliative care but will soon be impacting in adult palliative and hospice care, Personal Health Budgets, disabilities, complex conditions and specialist care needs and more. For my work I was named as a Health Service Journal top 50 foremost Patient Leaders, and received my MBE in the New Years Honours 2016, for services to young people with disabilities. I love working with charities, organisations and professionals and influencing MPs, commissioners, policy-makers, ministers and professionals. I love enlightening those in power, raising awareness of issues and campaign to improve care, services and support for people with illnesses and disabilities. It can almost make my suffering worthwhile, to know a lot of good has come from my life and my struggles.
My day at Buckingham Palace was amazing, a one-in-a-million experience. Driving through the gates of Buckingham Palace was when it really hit me what was about to happen. It all suddenly became very real. We were taken in, and I was separated from my guests; my mum, my Grandma and my nurse came with me, sadly my sister was too poorly to come on the day. My guests were taken to the Ballroom where the ceremony would take place, and I was taken to another room with all the other recipients that day; one of them being Sir Jack Petchey, who was knighted that day, from whose charity I received an award in 2010. It’s a small world. We all talked to each other and shared our nerves and apprehensions, and share our stories and achievements. We were taken through in groups, to a room beside the Ballroom, where we lined up in order and then, one at a time, entered the Ballroom, and when hearing our surname, proceeded towards His Royal Highness, The Prince of Wales who put our medal on a special hook that had been attached prior to the ceremony, and then talked to us about our work. He was genuinely very interested and appreciative of my work, told me to keep going and also complimented my wheelchair. We then shook hands, I reversed, bowed my head and drove out of the room. It was the most magical experience, and Prince Charles was very down to earth. I will never forget that day, and that minute or two speaking with Prince Charles. It was more than I ever could have imagined.
Tell us about the day you received an MBE… How did you feel? Did that, in any way, change your life?
It has changed my life by the recognition I got for my work; it has validated just how much of a difference I have made; not every person gets an MBE, and certainly not many 22 year olds. It was wonderful to think that I am worthy of such an accolade. My MBE has raised awareness of my work and the charities I work with, and opportunities have come about as a result. Most of all, it proves to me that other people think highly of me and my achievements. It made me stop and think about all the things I’ve done, and almost given me permission to feel proud. It sounds a bit odd, but I find it hard to feel proud of myself, but MBE after my name means I can no longer doubt my achievements.
What are your dreams and aspirations for the future?
My dreams for the future are to continue with my work; but to make a bigger impact, support more people and to really make a difference to the lives of others. I want to write my autobiography, and possibly children’s books with a positive disability role model. I want to improve my public speaking, so that I can deliver more speeches and be booked for events. I would also love to start making videos and short documentaries and see where that takes me. I thoroughly enjoy planning, making and editing videos, and would love to raise the issues I campaign for into short films, share people’s stories and to champion different causes. Most of all I want to continue with what I do and expand it, and to continue working with the charity and people I do now, and to work with others, too.