By Vicky Allan, Herald Scotland
Cancer is now the leading cause of death in wealthy countries. But what’s seldom highlighted is that rates are rising in every country and where you live has an impact on how likely you are to die from your diagnosis, and how much pain you are likely to suffer.
It has an impact on whether you get effective painkillers and on what chance you have of surviving.
In sub-Saharan Africa you are more likely to be diagnosed late and not receive chemotherapy, radiotherapy or painkillers, a 2018 report found.
The region has, for instance, the highest age-standardised breast cancer mortality rate globally.
When I visited Malawi in 2017, it was reported to have the highest rate of cervical cancer in the world. On my travels in remote northern areas, I saw sufferers in extreme pain, and without even paracetamol to ease it.
I witnessed how the most basic kind of palliative care, which we have come to see as a right in the UK, was only just starting to penetrate the country.
But a project called Chifundo, meaning “compassion”, funded by the Edinburgh-based medical charity EMMS International, has been changing that. It has started a palliative care revolution in the country which has had an impact.
Among those helping to deliver it is nurse Mwandida Nkhoma, working for the Palliative Care Support Trust. She made the decision to train in the field because of the pain she saw a loved one go through.
“My sister died of breast cancer,” she says. “I was young when she died, but still I was around and I could see how she was feeling.
“She was in severe pain. She had a wound that was oozing pus and producing some smell.
“She died in that way — in pain, with that bad wound — because at that time there was no palliative care in Malawi. There was no morphine.
“That is what prompted me to learn palliative care.”
A key trailblazer in the field is the executive director of the Palliative Care Association of Malawi, Lameck Thambo, a former clinical officer who first started to advocate for palliative care in 2002 after he saw a talk by the pioneering Dr Anne Merriman about morphine and cancer patients.
He was then working for HIV and Aids centre, The Lighthouse.
“At that point we had no strong analgesics for pain management,” he recalls. “The government at that time was not procuring morphine.
“It was, in fact, anti-morphine, because they were afraid of addiction. They were afraid of abuse, so they were afraid of all those misconceptions.
“After seeing her talk, I — through The Lighthouse, where I was working — started advocating for palliative care. What inspired me was my experience working with HIV patients who were dying every day, and dying in a lot of suffering.”
A system of palliative care began to be rolled out in urban centres. But, given that 85% of Malawi’s population live in rural areas, this meant that the vast majority were still not being reached.
But Chifundo has been changing that. Public response to EMMS International’s 2017 appeal was matched pound for pound by the UK Government, and, as a result, 36,930 patients and family carers have been delivered palliative care.
In 2017, I visited villages on the shore of Lake Malawi, which were two hours by boat from the nearest road. From there, the nearest hospital was accessed only via an escarpment road with hairpin bends and scattered boulders that would in itself be deemed a risk to life in the UK.
In one of the villages, 80-year-old Kesnary, who had cervical cancer, was suffering from bleeding so copiously it sometimes left her weak or unconscious.
Her husband had died some years earlier, and she was being looked after by her daughter and her brother-in-law.
“I am very worried because this is the first person in my family to have this disease,” her brother-in-law said.
“We had a woman in the area who passed away of this two years ago. We never used to see this.
“When she sees one is passing away she automatically becomes afraid that the same thing will happen to her. We try to comfort her because she has got so many worries.
“This is not the end of your life. Many people have been attacked by such a disease. Just pray. God will help you.”
The biggest problem, he said, was their inability to afford the drugs — and it’s when she didn’t have the drugs that her bleeding got worse.
“Sometimes we don’t have any money. Sometimes, instead of having the drugs for a month, we just have two weeks, and they run out. So for weeks it is a problem.
“We get money through fishing. We just fish. We sell our fish and then maybe we have enough money to buy the drugs.”
Among those who accompanied me on my visits was nurse Chawanangwa Smith Beza, who wore a T-shirt saying Give Me Morphine For My Pain.
“We ran out of morphine some time back,” he recalled. “We didn’t have morphine. It was a problem – even in big hospitals you cannot get morphine.
We give other painkillers. But morphine is the strong opiate of choice.”
A 74-year-old woman, Loveness, was being looked after by her 85-year-old husband Jackson and her 19-year-old granddaughter Rabekah, who had recently fled domestic abuse.
All were surviving off the meagre sales they made from farming bananas at a subsistence level.
Loveness had cervical cancer and was experiencing frequent pains and dizzy spells. She could no longer walk the distance down to the main road to sell her bananas and had to ask others to sell them for her.
At the time, she had no drugs for her pain. Her codeine had run out, and she could afford no more.
She recalled that when the bleeding that is the symptom of her cancer started she did not know what it was: “I wondered how come I have started bleeding. It’s past my age of menstruation.
“Then I heard from the radio someone talking about cancer of the cervix. I heard that people should go for screenings and I went to the hospital. That was when I was diagnosed with cancer.”
Palliative care is now something that is beginning to be talked about as a right for those with chronic or life-limiting conditions. The right, for instance, to relief from extreme pain.
In 2014, the World Health Organisation, in its Global Atlas of Palliative Care, argued that it was a human rights issue. Globally, it estimated that 37.4% of deaths from all causes need palliative care.
Chifundo is part of a huge shift, globally, and making a difference in Malawi.
As Lameck Thambo says: “There has been great progress made from 2017 until now. Palliative care is available in some of the health facilities in rural areas in health centres, and we have more trained staff, nurses and clinical officers.”
The revolution continues. This year, EMMS International aims to renovate 30 more health facilities across Malawi, ensuring good-quality palliative care for 10,000 more patients and their families.