October 13 is World Hospice and Palliative Care Day. This year the theme is ‘Because I Matter’, highlighting the importance of listening to, involving and collaborating with people with direct experience of serious illness in all aspects of palliative care. Dr Helena Davies, World Hospice Palliative Care Alliance (WHPCA) Direct Stakeholder Trustee, explains.
Everyone who has a life-limiting illness has a right to receive palliative care (ideally as part of a universal health coverage package). This ethos is embedded in the theme of this year’s World Day.
I am able to speak with the voice of experience – I have a serious, life-limiting chronic illness and have been receiving palliative care as part of my overall healthcare package for the past nine years.
A core skill of my palliative care team, along with the medical aspects such as excellent pain management, has been making me feel that I really do matter. I have been listened to, so that my healthcare providers understood what mattered most to me and were able to make treatment decisions and options available to me based on this knowledge.
It is perhaps because I have been so fortunate in this respect that I feel so passionately about palliative care in general and in particular about the ‘Because I Matter’ theme of World Day this year.
Many individuals who would benefit from palliative care are not receiving the care they need, especially in low and middle-income countries. World Hospice and Palliative Care Day is an opportunity to raise awareness of this issue and to engage organisations and individuals to work towards palliative care provision for everyone who needs it, wherever they live and whatever their particular need.
Raising awareness must include the voices of those directly affected by serious illness, both the individuals themselves and their caregivers, not just the voices of professionals and those in power.
People with direct experience of serious illness should be empowered to contribute to the governance and daily activity of hospice and palliative care organisations, and know that their voice matters.
World Hospice and Palliative Care Day provides an opportunity to raise awareness of this issue. The WHPCA has produced a collection of materials, such as the World Day toolkit, key messages and draft tweets, and posters and social media graphics that can be downloaded and customised with images and quotes by direct palliative care stakeholders.
What you can do to let people know that their voices matter
As someone working in a hospice or palliative care organisation, how can you promote the meaningful involvement of people directly affected by serious illness? Possibilities include:
- Employ people with direct experience of serious illness in your organisation.
- Invite people with direct experience of serious illness to join your Board of Trustees.
- Involve people with direct experience of serious illness in hospice and palliative care advocacy.
- Involve people with direct experience of serious illness in communications planning and drafting of materials. Don’t just use them as ‘case studies’.
- Invite people with serious illness to speak at events and conferences. We are the experts in our own health and care and can offer valuable insights.
Just because someone is living with a serious illness does not mean that they are powerless to effect change. Don’t assume that we are too ill to contribute. Ask us to speak, to write, to help review key messages and materials, to help evaluate services. Let us make the decision about whether we are well enough to contribute – we will say no if we need to.
Most importantly: Listen to me. Because I Matter.