On behalf of the Worldwide Hospice Palliative Care Alliance (WHPCA), Lucy Watts MBE, Founder of the Palliative Care Voices global patient advocacy network, urges palliative care organisations and networks led by people living with life-limiting conditions and/or older people in low- and middle-income countries to apply for a project grant to increase the voice of direct stakeholders to advance palliative care.
I have a simple message. It is time the voices of experts – those with experience of palliative care and life-limiting illness – are heard, because:
- We know what we are talking about.
- We bring fresh perspectives and ideas and;
- We can change hearts and minds in ways that professionals possibly can’t. Our lives, our knowledge, our experience and our stories are our power.
I have often heard that people who access palliative care are too ill to be asked to participate in advancement activities, or that those who have experienced palliative care through the death of a loved one must not be involved in case it prolongs their bereavement. Obviously, all cases are different but I refute this – because of the experience of myself and many others that I know.
I have lived for many years with a life-limiting condition. I was told I only had five years to live six years ago. I am fed through a line directly into my heart. I have fentanyl patches permanently to alleviate my pain. I have to be hoisted from my bed to my wheel chair each day. I have had sepsis 12 times. I have a 24-hour care package with a nurse to look after me at home. I battle to get the care I need to live and work and participate in society.
Yet, I am alive, and capable, effective and efficient. My time is limited and I am impatient to make change happen. I am able to make my own decisions about what I can and cannot do. And I am not a check box. I do not want to be wheeled out at public engagements, briefly thanked and then left until the next time it is deemed I am needed. I am a change agent. We are all possible change agents and we should be included across all activities and be working together towards our shared goal.
And how do you do this? It’s simple – I ask of you as global health, Universal Health Coverage and palliative care advocates, professionals and managers the following:
- Do not be scared of our voice. We want dialogue and true participation.
- Do not be scared to ask us what we think or what we can do. We will tell you.
- Do not be afraid of our criticism or suggestions. These are what will make things better.
- Do not bring us out only for public engagement or use our photos and images without empowering and enabling us. We need to be involved in governance, planning, budgets, activities, research, and evaluation. We are not just a case or a story – we are human beings with capacity, resources, passion and creativity. We are powerful.
- Ask us to be plenary speakers at your conferences first – not last.
The recent Lancet report showed that 61.5 million people worldwide experience serious health-related suffering. I understand what that means, truly I do. The situation is appalling and enough is enough.
For that reason, I am working with the WHPCA and many other charities to make change happen. I want to see a situation where people living with, or affected by, life-limiting conditions access the care that they need as part of Universal Health Coverage packages. I cannot fly all around the world, but I, with others, can mobilise networks and build support and hold people to account.
WHPCA’s grants round is an opportunity for palliative care organisations and networks led by people living with life-limiting conditions and/or older people in low- and middle-income countries to work together to make change happen. It is imperative we enable the voices of those with direct experience across the world to make people understand palliative care and demand and provide it.
If you’re working or living in a low- or middle-income country, please apply by 1 May 2018 – find more information here. Even if you’re not eligible to apply for a grant, please look at how you interact with people accessing palliative care. Are your patients just your beneficiaries or are they potentially your partners to be empowered and enabled to make their own choices in how they participate in the palliative care movement? How are you engaging internationally? And, importantly, are you doing enough to address the terrible global inequity?
I will be working hard from my bedroom in Essex to make a difference to people’s lives worldwide? Will you be joining me?
- Find out more about the WHPCA grants round here.
- Follow Lucy Watts on Twitter @LucyAlexandria
- Lucy’s website.
- Read Lucy’s post on her meeting with Dr Tedros, Director General of the World Health Organization, on the EAPC Blog.
- The Lancet Commission on Alleviating the Access Abyss in Palliative Care and Pain Relief.