Lucy Watts MBE is a patient advocate, a young person’s representative for numerous charities and projects, and founder of the Palliative Care Voices global patient advocacy network. Here, she describes a memorable meeting with the Director-General of the World Health Organization – an opportunity to discuss the importance of ensuring that the voices of people who are currently living with conditions that require palliative care, now or in the future, are included in palliative care advocacy at the highest level.
In 2017, I set up Palliative Care Voices, a spin-off project from a direct stakeholder engagement project funded by the Open Society Foundations (OSF), that aims to strengthen the voice of direct stakeholders and increase their impact as advocates to improve access to quality palliative care worldwide. Direct stakeholders in palliative care are defined as people who are currently living with conditions that require palliative care now or may require it in the future and those who are in older age and approaching the end of the life cycle. We also include current and former carers and family members in our group. Patient advocacy, writing, blogging and lots of meetings are a huge part of my life as I try to make sure that the voices of people like me are heard, with Palliative Care Voices being created to provide the platform to achieve this.We exist to ensure that direct stakeholders are included in all aspects and levels of palliative care.
On Friday 23rd February 2018, an incredible meeting took place. I met with Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO). This is quite an achievement – for the director general to make a connection and request a meeting with a direct stakeholder like me!
It all came about when my words were spoken at the WHO Executive Board in January, taken there and spoken by Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance (WHPCA). My words made their mark on Dr Tedros. He asked for his details to be passed onto me, which led to a telephone call in which he asked to meet me on his next London visit.
We organised the meeting for Dr Tedros’s short trip to London on 23rd February – very grateful to him for giving me some of his time. The meeting was an incredible experience. For Dr Tedros to shed a tear, whilst explaining how much my words had impacted upon him, made me feel truly humble. He complimented me on my strength, my determination, my courage, and also the advocacy and voluntary work I do. He referred to me as a friend and said that he would look forward to moving into the future as friends and colleagues, that together we could make a difference in the world of palliative care and universal health coverage.
I went to the meeting with key messages I wanted to convey. However, I need not have worried for Dr Tedros had done his research and was well versed in the topic and the points I wanted to raise. We discussed palliative care (for both adults and children) and universal health coverage, access to medications and the involvement of direct stakeholders – a chance for me to explain about the international palliative care direct stakeholder network I’ve set up, Palliative Care Voices.
Dr Tedros said how important it is that direct stakeholders, such as me, are involved, so I hope we can also use my connection with him to improve and set the standard for the involvement of direct stakeholders at the highest levels.
The meeting ended with a kiss on each cheek and a thank you from both of us. I look forward to working with Dr Tedros moving forwards, to maintain that friendship and connection with him, and to make a difference for others through that relationship.
I am truly privileged to count Dr Tedros as a friend and hope this friendship will lead to great things. The meeting is something I will never forget; I still can’t believe I’ve had this opportunity and I’ve achieved this connection with the highest-level individual in global health.
- Lucy’s website.
- View the video clip – Dr Stephen Connor reads Lucy’s words at the WHO executive board meeting in January 2018.
- Follow Lucy on Twitter @LucyAlexandria
- Palliative Care Voices.
- Click here to read how Lucy’s personal story of palliative care impacts the WHO leader.