What if we viewed lived experience as an asset? As an asset of professional, economic,…
Digital Leaders 100 List Finalist
Will You Vote For Me?
I am delighted to announce I have made the Digital Leaders 100 List in the Digital Leader of the Year category. The Digital Leaders list recognises leaders who are working hard to advance and secure digital transformation and are using tech for good. It is a tremendous honour, and a huge surprise, I never really think of myself as a digital leader but obviously the person who nominated me felt that and the team who have shortlisted me also felt I am worthy of being on the top 100 Digital Leaders List. I truly would be so grateful if people did think me worthy, that they will vote for me. I have no idea who nominated me, so thank you to the person who did.
So, what is the Digital Leaders 100?
Digital Leaders is an initiative that has created a shared professional space for senior leadership from different sectors promoting effective, long-term digital transformation. Our community of 100,000 senior leaders are involved in leveraging technology to promote economic growth, increase social well-being and narrow social gaps across the UK.
About the Digital Leaders 100 (DL100)
The DL100 list is created by public vote and celebrates the teams and individuals who are working hard behind the scenes to secure the UK’s Digital Transformation. We have been asking you to help us find these digital pioneers from across the UK and from the public, private and non-profit sectors, every year since 2013.
Digital technologies are an essential part of my life and my work. I couldn’t do what I do without digital tools, tech, social media and so on. Laptops, websites, apps, social media, iPhones, iPads, TV, and then other tech such as IV pumps, highly specialist wheelchairs, and so much more — they are all integral to my life and my work. I always endeavour to use tech for good, utilising everything we have to benefit and support others and to ensure tech is used to its full capabilities for maximum impact.
Not only do I depend on tech to survive, I also depend on digital tools and technologies to undertake my work. I have been able to enhance the lives of others through digital tools and technologies and to do great work without ever leaving my bed. So much of my work is done remotely and online, so although I go to events and meetings — enabled and enhanced by digital tech — a large part of my work takes place digitally.
The internet has been essential to my survival, finding information, doctors, answers, and finding a community, support, friends, and connecting with family and friends and the outside world in the 5 years I spent bed bound and isolated. However, not only did it benefit me, I was also able to utilise it for good. I began offering peer support to others, especially other disabled and chronically ill people, helping them access the information they required, helping them to get a diagnosis, helping them to find out where to get the best treatment and care, and how to access the services and support they required. As soon as I began benefitting from tech, I also began using it to help others. I did this on an informal basis for many years. I also used to offer more intensive peer mentoring of other young disabled/chronically ill people, helping them to build their confidence, find their voice, find the positives, help them to achieve their goals and to have the confidence and self-belief to set goals in the first place. So not only did I benefit, I used it to benefit.
My regular followers will know I live with an ultra-rare, possibly unique life-limiting, neuromuscular/mitochondrial (plus) disease. I was born with this illness, had a lot of problems in my early years, always struggled, had early medical problems and intervention, met milestones late, couldn’t always keep up with peers, but for all intents and purposes I lived a relatively normal life From 10 I had regular physiotherapy to try and slow down the muscle weakness, and my condition was rapidly processing, until at 14 my body completely gave up. All the problems I’d lived with all my life had come to a head, and new issues had arisen. Initially I did my education at home, in bed, and got 10 GCSEs at A* to C grade despite only 6 hours tuition a week, at home, doing my exams in my bed with a scribe and an adjudicator. I then tried to go to college to do A levels part time, but soon had to give that up. By age 17 I was on intravenous nutrition (TPN), had multiple organ failure, had to use a catheter to empty my bladder, needed an Ileostomy stoma to be formed, needed 24/7 care from people trained to meet my needs, was under a hospice and already living longer than expected. My 18th birthday was unlikely to be met. It was doing my first end of life plan at age 17 that my hospice nurse asked me a pivotal question: “so what do you want to do now?”. No one had ever really asked me that. I exclaimed, almost unconsciously, that I wanted to make a difference. My hospice nurse encouraged me to be filmed by the hospice, and the volunteer journalist encouraged me to start my blog. Thus, technology became an even bigger part of my life. My blog became my way to communicate with the outside world in a way that I could express myself through words, pictures and posts. It became an integral part of my life. In 2013, my palliative care nurse put me forward to speak at a reception in the House of Commons for Together for Short Lives, on the transition to adult health services. I gave that speech, albeit not the greatest delivery, and as I looked up at the end and saw the room erupt into applause, I realised I’d found my new purpose in life. My work took off from there, and technology became a way I could help people on an even greater scale.
My blog quickly gained traction, and to date my blog — on the original blogger site, combined with my now self-hosted website — has amassed over 450,000 views. My blog has taken on a life of its own over the years — it’s connected me with a range of new individuals and communities. My blog is read by other disabled and chronically ill people, by parents, carers and family members, by health and care professionals, and also people with no strong connection to illness, disability or to our family. People take different things from my blog and my posts, and it’s always interesting to see and hear how a blog about a certain topic can have unintended, unrelated benefits for other people. My blog has helped many, many people find information, find support, understand complex medical terms and topics easily through having them explained in layman’s terms, it’s helped inspire people that there’s life beyond illness, challenged people to talk about death and dying, and much, much more. I have connected with people all over the world – UK, Ireland, America, Iceland, all over Europe, Asia, Australia and New Zealand, South America, Africa and everywhere in between. It’s amazing how I — one girl with my blog — have been able to influence, impact, inspire and empower so many people the world over.
Through my work, I utilise a lot of technologies. I utilise Zoom, Skype, Microsoft Teams; websites, apps, social media; WhatsApp, Messenger, Email; digital video, photos, graphics; and everything in between. I am able to deliver speeches all over the world through remote video technology and also through pre-recorded video clips.
I undertake a lot of work supporting people to become patient advocates and disability activists through online methods. I have run and continue to run various Facebook and other social media based patient involvement groups. This includes running the AdversiTeam for the Open University Sexuality Alliance, a young advisory group that I founded for young adults with life-limiting conditions. I founded a digitally based co-researcher collective for the ESRC-funded Living Life To The Fullest research project, setting up and running a collective of young disabled people who co-lead and conduct the research. I also run a TPN support group on Facebook, a Facebook support group for Breathe On UK, and various others.
In 2017 I founded Palliative Care Voices, the independent, international palliative care patient and carer advocacy network. Palliative Care Voices seeks to unite palliative care patients and carers and to support them to become vocal and prominent advocates for palliative care nationally and internationally. The network relies totally on technology to exist. Based out of a Facebook group, which provides our virtual meeting ground, we have sent the words of patients and carers to the World Health Organisation Executive Board, which led to my personal meeting and relationship with Dr Tedros, the Director-General of the WHO. We’ve sent speakers to conferences, had people participate in media campaigns, provide statements and stories for policy and other work, produced a briefing statement for UN member states, and more.
Digital technology has also allowed me to get off welfare benefits and into work. I work remotely for a number of individuals, clients, charities and organisations, offering a range of services. For chronically ill and/or disabled people, and their carers, I offer independent advocacy and care package brokerage. I work with clients to understand their situation, help them “fight” for services and support, write letters, virtually attend meetings, help advocate, and on the care brokerage side, I help with the eligibility and access side of care and funding, building personalised care and support plans, helping to source providers, training and services, cost-up the package, help work with the client and the funding body to agree the plan, then help people to set up the package, with recruitment and so on. I also deliver speeches (virtually and face-to-face), digital tools meaning I’ve been able to speak remotely in dozens of countries, and I can deliver and facilitate workshops, host and participate or speak in webinars, and many other digitally facilitated roles.
It is a huge honour to have been shortlisted as Digital Leader of the Year and to be on the Digital Leader 100 List. I hope that people will feel me worthy of being voted for, and take the time to vote for me. I hate asking people to do things for me but this is a huge honour and will be a fantastic platform to share my work, raise awareness of the causes and issues i work on, and to build the profile of the organisations and projects I work with/on.