What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Friday 4th October, I became a TEDx speaker. I became part of a group of accomplished speakers with an international reach. I ticked an item off my bucket list. I discovered so much about myself.
TEDxNHS is an event started in 2016 by two NHS clinicians to inspire, empower, enlighten and motivate NHS staff with talks from NHS professionals and patients each year at a TEDx event in honour of our amazing NHS and the 1.5 million stars within it (to borrow Alexandra Adams’ TEDxNHS 2019 talk title). As the world’s 5th largest employer, and a pioneering health service offering universal health coverage free-at-the-point-of-use, the NHS must be celebrated, and we must hear stories within it, and connected to it. Ideas worth spreading, the TED slogan, is certainly accurate in describing why TEDxNHS is needed – we need to share ideas, and we need to hear stories.
“TEDxNHS was founded as a unique movement to allow the voices of everyday NHS staff and patients to be heard on a national stage and spread their learning across the system. It aims to break down the walls that can exist between professions, organisations and cultures to share learning in a new and exciting way.
We aim to create a celebration of the NHS like no other, a unique event allowing to celebrate the NHS and share their stories on a national stage; inspiring us to think differently, dream bigger and design better for the population we serve.”
Out of hundreds of applicants to speak at TEDxNHS 2019, I was delighted to be accepted with my talk about the power of asking “what matters to you” rather than “what’s the matter with you”, working towards quality of life and not just quantity, personalising care not just to medical conditions but to the people and their lives, goals and aspirations, the importance of planning for end of life, getting communication right and the importance of showing humanity in healthcare. My primary “idea worth spreading” was that we should be asking everyone what matters to them and tailoring care to the life and goals of each individual. Entitled “One sentence that transformed my life”, I wanted to share my experiences of living with a life-shortening illness, knowing I am dying, the importance of and transformative impact of talking about death and planning for end of life, how important personalised care is, how good palliative care has enabled me to live well and survive far beyond my prognosis, and how one professional having the courage to ask me what I wanted to do with my life led to me to live the most amazing life, to achieve so many things, and to find my purpose in life. Judging by comments after my speech and social media posts, I think I hit the mark, struck a chord and will inspire and empower professionals to give the best care to their patients and to have so-called “difficult” conversations with their patients.
Giving a TEDx talk has been a dream of mine ever since I knew TED existed. I greatly admired the skill of the speakers and their way of communicating their message with impact and conviction. I admired the ethos of what TED and TEDx is all about and dreamed of a time where I would be a good enough speaker to grace a TEDx stage. I wanted to one day have the chance to give a TEDx talk so I’d have the platform to share my story, my thoughts and ideas, to inspire and influence on a global scale, and to have the the platform to truly change hearts and minds. However, I never thought I’d actually achieve it. Early this year I saw the call for applications for what is the most perfect TEDx platform for me to speak on – TEDxNHS. My life depends on the NHS, has been saved and transformed by the NHS, and now I work with the NHS to improve care, support, services, patient experience, to better serve the population and to improve and increase staff knowledge and understanding of people’s lives and lived experiences. So what better TEDx stage, than the one dedicated to the organisation I depend on to survive and that I work tirelessly to support? So I applied – well, truth be told, I wrote my application and before sending imposter syndrome completely overtook me and I toyed with whether or not to press send. Eventually I just thought “what have I got to lose?” and sent it. Then, I spent ages feeling completely stupid for doing so and began to worry that the curation team would think “who does she think she is?” and think me silly for even dreaming of applying, let alone actually doing so. So I shut down my hopes of ever doing a TEDx talk and tried to forget about it. And then I was told I’d been shortlisted and was invited to be interviewed. I later found out that I had been selected to speak – and I could not believe it. I was going to give a TEDx talk – “little old me” was going to give a TEDx talk!?! The curation team had liked my idea and felt me competent enough to take the TEDx stage. I could not fathom how I’d got to this point.
I won’t say the TEDx process has been stress free – it’s been extremely stressful at times. Especially when my first rehearsal the day before the TEDxNHS event went so badly. I loved crafting my speech with help from the curation team, especially my coach Gemma and also support from Charlotte, who supported me to make it the best speech possible. Then practising began – and I realised just how much my memory is impaired by opioids, fatigue, pain, multi-organ failure, chronic incurable infections (especially since I’ve had fevers daily since May) and my underlying conditions themselves. My long term memory and memory for things like dates is fantastic, but my short term memory is impaired and my ability to memorise large pieces of text is poor – well, impossible. I could almost completely remember my speech, but despite rehearsing every day numerous times I couldn’t memorise, recall and perform my speech entirely and to deliver it in the correct order. That is just beyond my capability. I began to panic. You’re not allowed prompts on TEDx talks – or so I thought. Fortunately the team agreed the day before the event that I could keep my prompts as my mind would go completely blank to the point I probably couldn’t tell you my name and address let alone remember my speech and it meant I also couldn’t wing it – if you have no words and a blank mind, there’s nothing you can do. So they made a ‘reasonable adjustment’ and allowed me to keep my prompts on stage. And, to be honest, I relied on them very little in the end, a few downward glances during my talk to remind myself when I stumbled and that was it.
I was so, so anxious and stressed the day before, I sobbed to mum that I was going to fail and it would be a disaster and I would let everyone down. I needn’t have worried, as it went as well as it could possibly have done. The best bit? I had almost no nerves, and loved every minute. Sometimes for big talks I get so nervous that I can’t always enjoy my speeches as much as I’d like to, but I was so calm and relaxed and so excited beforehand that I loved the entire thing – in fact, I enjoyed it to such an extent that once I’d finished, I wanted to do it all over again! I was buzzing. I cannot explain to you the feeling of achievement I have now. I cannot believe I did it – I’m a TEDx speaker. I am excited for once my talk is uploaded to YouTube, to be able to share it with everyone and to make an impact globally. This is one of the best experiences of my life – a defining moment of my life and ’career’. I’ve also gained so much through the process, learning a lot about my strengths and weaknesses, the ways I learn, tips and tricks that I can utilise moving forward, and realising just how much of a visual learner I am – I’ve always known it, but it was even more obvious in this process. The only way I could learn was primarily through visual combined with kinaesthetic learning and audio was a very minor factor in the process, and that I needed to be able to mentally picture the words in order to recount my speech. However kinaesthetic learning was also important – reading and seeing wasn’t enough to remember, the kinaesthetic learning of speaking and rehearsing verbally was also important and it was the combination of ‘seeing’ the words in my mind and the kinaesthetic ‘memory’ of saying it that needed to combine for me to perform my talk. I’ve learnt so, so much that I will take forward with me and benefit from. And it was not just the TEDx talk itself that was the attraction of doing it, obviously it was most important to me that I wanted to give a TEDx talk, but the coaching through the curation process was also a big attraction, as I knew I’d learn and gain so much – I’ve never had speaker training, I’m completely self “taught” – I’ve learnt on the job and grown and developed through each speech. When we look back on my very first speech, in which I was simply reading my words from sheets of paper and making no eye contact with the audience, to where I am today, I can see the journey I’ve been on and how I’ve grown, learnt, developed and honed my skills. What a journey it’s been. And I’ve reached the pinnacle (in my eyes) of public speaking – I’ve given a TEDx talk.
A part of me still cannot quite believe I’ve done it. I feel utter jubilation, pride in myself – something I struggle with – and an overwhelming sense of achievement. I feel truly privileged to have had this opportunity, and not only that, to do it for the NHS, an organisation I depend on and work hard to support, through the fantastic TEDxNHS.
Watch my TEDxNHS talk below.
Below I’ve included some tweets from people talking about my TEDx talk. I’m truly humbled by the response.
All working in #endoflifecare should hear from @LucyAlexandria – so much wisdom in a short TEDx talk – “Absence of a cure is not the absence of great care”, “good communication of bad news can have a more positive impact than bad communication of good news” #TEDxNHS pic.twitter.com/q1hABDRg5S
— Jess Nyman (@NymTime) October 4, 2019
I am so proud to know @LucyAlexandria: a determined campaigner, a woman of passionate integrity, a public speaker par excellence, and a person who relishes the wonder of being.
Congrats on your #TEDxNHS triumph, Lucy, and thank you for your magnificent work.#makeeverydaycount https://t.co/uzDax5HWAa
— Kathryn Mannix (@drkathrynmannix) October 5, 2019
Every so often (well quite frequently) I find inspiration in an individuals story and experience. They might be a patient, carer or colleague. At #TEDxNHS today …. @LucyAlexandria you were there reflecting EVERYTHING that hospice care hopes to achieve and promote #thankyou
— emma johnson (@aemmarose) October 4, 2019
— Dr_MFG (@finegoulden) October 4, 2019
Great catching up with @LucyAlexandria post-talk on the @TEDxNHS stage! Beautifully empowering, wholesome, enlightening talk from this amazing person – it’s people like you that continue to reaffirm my absolute want to be a #Palliative doctor in the future! Thank you, you star ? https://t.co/LO2vpCNxrb pic.twitter.com/J44PGqM0PK
— ⭐️ Alexandra Elaine Adams (@alexandra_DBmed) October 5, 2019
Lucy & Molly reminding us that life has a prognosis of death – so discuss wishes about EOL but don’t forget to ask “but what do you want to do now?”
— Heather Humphreys (@_HeatherHH) October 4, 2019
What if every professional asked their patients “what matters to you”, “what do you want to do now?” @LucyAlexandria @TEDxNHS #TEDxNHS Thank you- I really hope I can remember this in my consultations. We should be talking to everyone about what quality of life means to them pic.twitter.com/bd0zacYT3o
— Hannah Morgan (@DrHannahMorgan) October 4, 2019
The amazing @LucyAlexandria takes to the stage @TEDxNHS #TEDxNHS with Molly, a lovely spaniel.Lucy speaks with such clarity of purpose+courage as one of the most influential disabled women today-communication+honesty vital @Tog4ShortLives https://t.co/hS5tac1Apc
— Karen Bloomfield (@KarenBloomfiel1) October 4, 2019
@LucyAlexandria shares how one sentence transformed her life: “What do you want to do now?” Someone simply asking ‘what matters to you’ is supremely powerful and impactful. What if every healthcare professional took time to ask patients what matters to them? #TEDxNHS @TEDxNHS pic.twitter.com/e0p74UHzf9
— Darshna Patel (@Darshna_P) October 4, 2019
@LucyAlexandria and #mollydog you were absolutely amazing! Speaking about how quality of life can be changed and transformed by the interactions with hcp, by simple sentences. Thank you for sharing your insight so eloquently, for making the difference for others. #TEDxNHS https://t.co/jf5NB4HGop pic.twitter.com/6PriGS929O
— Amy Frounks (@AmyFrounks) October 4, 2019
“What’s the point of having quantity of life when we don’t have quality?!” Well Done @LucyAlexandria opening the conversation about dying & when there is no option of treatment it shouldn’t mean we loose sight of compassion & quality of the life we still have! #TEDxNHS pic.twitter.com/rdjHbrfxoM
— Chrissie Francis (@Chrissie_QI) October 4, 2019
Incredible honest talk from @LucyAlexandria talking about end of life and how we should plan for the end at #TEDxNHS quality of life matters, and asking what matters to the person is key “death is something we all share” https://t.co/wZKH7o15gQ pic.twitter.com/x4Pvp7PCIx
— Kelly Anderson (@Nurse4lifeKelly) October 4, 2019
Powerful words from @LucyAlexandria about the importance of talking about death and making sure your family know your wishes.
— NHS Organ Donation? (@NHSOrganDonor) October 4, 2019
‘What do you want to do with your life?’
… changed her life…
The power of communication, honesty & sharing hope is so important.
— Helen Grote (@helengrote) October 4, 2019
— Dr_MFG (@finegoulden) October 4, 2019
‘So what do you want to do now?’ One transformative question asked by a palliative care nurse after discussion with one patient regarding her end of life priorities #TEDxNHS ‘sometimes we chase the quantity so much the quality of life disappears’ @LucyAlexandria @drkathrynmannix
— Oli Giles (@Oli93) October 4, 2019
@LucyAlexandria – ‘I found my purpose and myself… a life I have because I was told I was dying. We should all be planning for end of life. Talking about dying won’t make it happen. I don’t waste days of my life because I don’t have days to waste. Can you say the same’ #TEDxNHS pic.twitter.com/XHpYGUoH6W
— Craig Knott (@doctorcraigk) October 4, 2019
“We need to talk about death! My best years have been the ones since I was told that I have a terminal diagnosis. It means I have really learned to live!” Such strength, courage & wisdom from @LucyAlexandria to help us face our own #mortality #wewillalldie #TEDxNHS @TEDxNHS pic.twitter.com/6lPYQ3dPbY
— ?Andy Knox (@wellbeingandy) October 4, 2019