Becoming Lucy Watts MBE - My Day At Buckingham Palace

My name is Lucy Watts MBE, I'm 22 years old and I have a life-shortening presentation of Ehlers-Danlos Syndrome with multiple organ failure, numerous complications and many secondary conditions, which mean I'm fed TPN via a permanent line into my heart, through which most medications are also administered, meaning I'm hooked up to one or more pumps for at least 21 hours every day, and I have other bags and tubes necessary for my survival.

My name is Lucy Watts MBE, I'm 22 years old and I have a life-shortening presentation of Ehlers-Danlos Syndrome with multiple organ failure, numerous complications and many secondary conditions, which mean I'm fed TPN via a permanent line into my heart, through which most medications are also administered, meaning I'm hooked up to one or more pumps for at least 21 hours every day, and I have other bags and tubes necessary for my survival.

I've been involved with Dreams Come True as an Ambassador since 2014 when I first applied for a wish, we went through a few ideas which weren't possible, before settling on seeing Ed Sheeran live with my mum and sister. Sadly in late April 2015, mum was diagnosed with a brain tumour and needed major brain surgery to remove it 3 weeks later on the 21st May. It would mean our trip to see Ed Sheeran live wouldn't be possible; I didn't want to go without mum, so we had Dreams Come True gift the tickets to someone else. With mums surgery looming and a mad dash to set up a suitable care package for me to remain at home whilst mum had her surgery and recovered, which ruined our few weeks before mums surgery which should have been spent enjoying time together.

However, another dream of ours was fulfilled just in time; Dreams Come True had managed to get us to see The Paul O'Grady Show live and meet him backstage. We had a lovely day, mum and I and Sarah from DCT, we met and chatted to Paul and to Danny Dyer who was on the show that day, and it was a magical experience. It happened two days before mum's surgery, our last outing together and last quality time together before our lives changed forever. Sadly, following mum's surgery, she suffered a bleed on the brain and then a stroke. She might not make it through the night, we were told, and if she did, they didn't know whether she'd still me herself and whether she'd be permanently disabled. She was in hospital for 6 weeks, 2 of those in ITU and for weeks she wasn't aware, couldn't communicate, couldn't move and was combative, she needed total care, but she slowly made progress after progress; a year on she's walking, talking and functioning, she still struggles with her memory - the four years prior to her operation are very hazy - and struggles with her speech at times, and sadly she suffered a long seizure in February 2016 so must be on anti-epileptic drugs for the rest of her life, but she's alive and still 'mum'.

 I do a lot of charity work, which has taken me to many exciting places. Parliament twice, where I gave a speech in 2013 and attended another reception there in 2015, the Department of Health multiple times, including co-chairing an event there, to many other events and places including Middle Temple. I've appeared in a BBC Three documentary, a BBC Radio 4 "The Listening Project" piece, Sky News, BBC Essex, ITV News and more. I've given many speeches and written blogs, articles and forewords to booklets. I've done many things over the last 3 years. My work is my life and gives me a positive focus away from my condition, and it has completely changed my life. I love my work, using my experiences - good and bad - constructively to benefit others.

Despite my relatively short period of work (compared to the decades and whole careers of work leading to Honours for other recipients), in the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire (MBE) for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture at Buckingham Palace, presented to me by His Royal Highness The Prince of Wales. It is a huge honour to be appointed an MBE, especially so given my young age, I’m only 22, and the fact that my period of work hasn’t spanned decades like many others. However, it’s highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work, and am still well enough and able to attend my investiture, and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work. My charity, health and disability work gives me a positive focus away from the pain, suffering and struggles I have as a result of my conditions, and the restrictions the conditions and their complications impose upon my life. To have something to focus on, a purpose in life and an ability to use my experiences - good and bad - constructively to benefit others, is very important and a key component of my coping mechanism. Being able to distract myself with my work, and at the same time, advocate for, represent and support others with chronic and complex conditions and disabilities is a great way to use my energy in a productive and worthwhile manner - however limited my energy may be on some days.

My day was very special at Buckingham Palace, going behind the gates and into the forecourt was a magical feeling; it’s not every day you get to go into a Royal residence. Not only that, but to do so to receive an award was truly an amazing experience. Their wheelchair access, and support of those with disabilities, is second to none. I had someone there for me all day, and someone else pushed my grandmother in her wheelchair, so that mum didn’t have to do it. Once out of the car, we gathered in the lobby of the Palace, before going up a floor where my mum, Grandma and nurse were taken straight into the Ballroom, and I was taken into a very beautiful and decadent room where the other recipients were gathering. It was lovely talking to the very worthy recipients and hearing their stories; they were positively surprised and very impressed that I was receiving an Honour at such a young age. We were then taken to the room next to the Ballroom in groups of 15 to 20, the rest of us watched the ceremony on a TV whilst we waited, and then I was taken through in group three to go through to receive my award. We walked through a few different rooms, then through the back of the Ballroom and into a room next door, where we lined up in order, and went through into the Ballroom one by one to receive our award. When I went in to receive mine, Prince Charles stepped off his stage so that he could put my MBE on the hook that had been placed on my jacket earlier in the day, and talk to me on my level. He congratulated me on my work and asked a little bit about it. He said that I must make a big impact and help a lot of people, and to be very proud of myself, as well as telling me to keep up the good work. He then admired my wheelchair, so we talked about that very briefly, and he held out his hand, I shook it, reversed away, bowed my head and drove out of the room. There my MBE was taken off my hook on my jacket, it was put in a box and I went to the back of the Ballroom to join my family to watch the rest of the ceremony. I was so worried about what I would say to His Royal Highness, but I needn’t have worried as the brief conversation flowed effortlessly. He was genuine and very interested in my work and congratulated me more than once. He was so lovely with me, and those few minutes of receiving my award, talking to him and shaking his hand I will never, ever forget. Once the ceremony was over, the national anthem was played. It was extremely moving when the national anthem was played, though we couldn’t sing along. It was hearing that national anthem that made the magnitude of what has happened, and what it means, dawn on me.

It was an extremely special day, one myself, my mum and Grandma will never forget. A real day to remember and look back on fondly. It was an experience of a lifetime, and I know I will never forget that feeling of talking to, receiving my award from and shaking the hand of His Royal Highness, The Prince of Wales. Nor will my nurse Faggie ever forget this day; she is the envy of all of my team of ITU nurses because she was the one who came with us to Buckingham Palace! Just a truly magical day, and one which we shall cherish the memories of.


It is wonderful to be recognised for my work in such a big way, and that people think I’m worthy of such a prestigious accolade. Not just my family, but the person who nominated me - I still do not know who it was - as well as the Cabinet Office, who selected me for an MBE out of many thousands of applications, and the Queen who approved the list of nominees, and then for Prince Charles to present it and congratulate me on my work, appreciate what I have done and tell me to keep going. Nothing says you’ve done well and made a difference like being awarded an Honour, in my case an MBE. I hope that I will be able to continue with my work, make an even bigger difference, expand what I do and continue to make life better for others with illnesses and disabilities. I do hope it will allow me to do more, that it will be a springboard into other opportunities, and that my MBE will raise awareness of my conditions and of the difficulties the unwell and disabled face in their daily lives. I hope to use it to the benefit of others.




Share on:

Author: Lucy Watts

Date: 24/06/2016

« Back to blogs