Whether you live in Malawi or Manchester, when someone in your family is terminally ill your life is turned upside down. The practicalities of hospital visits disrupt once-settled routines. Once a child, spouse, sibling or parent, but now a carer. The feeling of loss begins long before death.
This week the UK was recognized as having the best end-of-life care in the world.
In poor communities without developed end-of-life care there are many hidden patients, around them are many more hidden lives.
On a visit to Malawi last year, I met Patrick. A patient of the home-based care team of Mulanje Mission Hospital.
Image: Patrick and his family (Kieran Dodds)
While we sat in front of his house he shared of how the tumor on his leg prevented him from caring for his family like he desired to. His wife, mother-in-law and children sat near-by.
He couldn’t mend the roof and the rainy season was coming. He couldn’t work and they relied on the generosity of his former boss, along with provisions from the hospital, to eat.
While we sat there my eye was drawn to his eldest daughter and her downcast expression. She sat in the shade facing away from us and the rest of the family. She seemed to carry a burden beyond her years.
To my shame I never learned her name. Her life was hidden by her father’s illness.
Her father’s illness could mean the end of her education, having to give it up to care for him or to earn money for the family. Her whole education, an opportunity to work herself and future generations out of poverty, was at risk along with her childhood.
Thankfully they have the support of Mulanje Mission Hospital. Palliative care isn’t about saving lives, but it can save the lives of patients’ loved ones.
Patrick is thankful for that help and is all too aware of what it means for his family too. He knows it is vital work, in his own words:
"Keep doing this. Do more of this. Not just for me, but for people like me."
Today (Saturday 10th October 2015) is World Hospice and Palliative Care Day, a unified day of action to celebrate and support hospice and palliative care around the world. This year’s theme is “Hidden Lives, Hidden Patients”.
EMMS International and its partners, along many others around the world, are working hard to bring palliative care to everyone who needs it. So that nobody suffers unnecessarily, and so that there are no hidden patients and no hidden lives.
Gary Brough, Communications Manager