What if we viewed lived experience as an asset? As an asset of professional, economic,…
Today I had the greatest pleasure of a personal meeting with Dr Tedros, Director General of the World Health Organisation (WHO) regarding my palliative care advocacy work and ensuring that palliative care gets included in universal health coverage packages. The meeting was more a meet/greet, a get to know each other meeting but we had a great conversation around palliative care, the current landscape, about universal health coverage, about access to medications and about how fortunate I am to live in the UK with our National Health Service (NHS), access to palliative care and hospice services and access to essential medications we require such as opioid analgesics to manage severe pain, for both adults and children.
Dr Tedros shed a tear when describing the impact my words had on him when read out by Dr Stephen Connor at the WHO Executive Board, and also the impact of my life, my work, my humility, my gratefulness and my determination to make a difference for others on him and his understanding of what really matters through stories such as my own. He called me an inspiration, to him and to others, and praised my humility and that appreciation for life, he said that most of the world’s greatest issues and conflicts would be resolved if we all came together and if we all saw life through my eyes and others like me, how I see the world and my appreciation for everything I have. We discussed the great things that can occur when we work together. He was extremely complimentary and grateful for the work I do. He said my words, my story and my work has touched him and he has great admiration and respect for me and the work I do and how I overcome a lot of challenges to do what I do, but I do not let this limit me. I was moved by his words, given the position he is in, a real distinguished individual, so it meant a lot to me. I am just truly privileged to live the life I do and to have the opportunities I have, such as this.
We talked about palliative care and its availability around the world and about ensuring it is included in universal health coverage (UHC) packages. I didn’t need to tell Dr Tedros how vital it was; he, in fact, said this to me, showing his understanding of its vitality and his commitment to doing something about it. He said about working together to improve access, we both discussed the sharing of stories as being huge drivers for change and I discussed he international direct stakeholder network I set up, Palliative Care Voices, which he was very appreciative of and hopes to be able to utilise the stories of the people through our network to help governments, high-ranking officials and all those in politics and in power around the globe to see the true benefit of palliative care and why universal health coverage, inclusive of palliative care, is a vital part of any society. I said how wonderful it is that my story can show the true benefit of palliative care, as well as an example of having an UHC package in the form of our National Health Service (NHS) done well and the benefit of having access to palliative care and hospice services and to medications such as opioid analgesics to manage severe pain. I hope my story can be a beacon of light in that sense, to help those in power to understand why palliative care is essential and what it can look like when done successfully. I know the setup in the UK that I benefit from can’t always be replicated everywhere at this time, however I do hope working with the World Health Organisation and Dr Tedros, we can show the human benefit as well as the financial benefit – receiving palliative care in my case has undoubtedly saved the NHS money by preventing unnecessary admissions, enabling me to be cared for at home, managing my symptoms effectively and reducing the number of professionals I need to see. Dr Tedros agreed that my case is an example of palliative care and universal health coverage done well. We both did agree it isn’t perfect and that nothing ever will be perfect, but I am a success story for palliative care as part of UHC. I said I don’t know what I’d do – or if I’d even be alive – if I lived in a lower or middle income country and didn’t have access to the NHS, palliative care, the medications I require and to round the clock care. I said how some of my friends are making sacrifices in order to get the care they require; face financial ruin and have the care they need or go without and suffer unbearably, ending in a ‘bad death’. Dr Tedros also shared stories that have touched him over the years, too. We both agreed that universal health coverage isn’t universal health coverage without palliative care. We also touched on access to medications for both adults and children.
He referred to me as a friend, a friend he will work together with to improve access to palliative care and universal health coverage. He explained my name in Ethiopian, Dinkinesh, which means precious. It was a very moving meeting, I was touched by Dr Tedros’ appreciation for me and my work, his kindness and compassion, his understanding of my work and his desire to work with me. He moved me with the things he said, especially since they are being said by the WHO Director General, no less. For someone to understand me so deeply when he’s only just met me – we both said it was like we’d known each other a very long time. Like old friends. He was also very complimentary and appreciative of my mum – he asked where I get my strength from, and I pointed at mum – and he said how he is honoured to meet us. We are extremely honoured to meet him! And to be called a friend – well, that has just made my day.
A handshake and a kiss on each cheek was the goodbye of this meeting, but signified the start of a beautiful friendship and collaborative partnership. A team, who will work together to affect change around the world. How truly privileged I am to be in this situation, to have this connection. I have offered my support to Dr Tedros in any way he would like my assistance with and I know for sure that we will be collaborating for years to come.
I am truly privileged to live this life, to have these opportunities and be able to affect change. I may have a life-limiting condition but I refuse to be limited by it. I am truly blessed to be in the position I am and I hope to give others the opportunities I have been given, through Palliative Care Voices and through the charity I am setting up separately to this. I want others to have the opportunities and experiences I have had. My work is not about me, it is about others, making a change for others, constructively using my experiences to benefit them, ensuring they have a better life with all the support they require, but also empowering and supporting them to become advocates too. I hope I will achieve this.
Thank you, Tedros. I cannot put into words how grateful I am. Here’s to a great friendship and to future collaborations.
So…this happened. An incredible meeting with @DrTedros. 1 person to another, mutual respect, an agreement of what needs to be done & look forward to working together to resolve it. Very touched to have this opportunity & have a friend & colleague in Dr Tedros. Thank you, Tedros pic.twitter.com/slbyIg6RKN
— Lucy Watts MBE (@LucyAlexandria) February 23, 2018
Thank you so much Lucy “Dinkinesh”. You are remarkable. Such an honor to meet you. You are such a great inspiration. Look forward to working with you closely my friend. https://t.co/OOh8yWa26k
— Tedros Adhanom Ghebreyesus (@DrTedros) February 23, 2018