Uganda - For Sulait Ssemujju, the hardest part of watching his mother die of cancer was knowing how much pain she was in. After being diagnosed just one year to her death, the tumour in her breast was only getting worse. The family was directed to Hospice Africa Uganda (HAU) - an outpatient facility in Makindye that specialises in palliative care, or the lessening of pain, for patients with "life-limiting illnesses" - namely cancer and Aids. "They really helped a lot, they really care about the patients," Ssemuju said. Across its three branches in Kampala, Mbarara and Hoima, HAU still only manages to reach a fraction of its target.

"We and the people we train are not even seeing 10 per cent of the people in need in Uganda," says Dr Anne Merriman, the HAU founder. This week, British High Commissioner Martin Shearman visited the hospice, and lauded Uganda for being a continental leader in palliative care.

"It's very impressive... the difference they are making in people's lives," he said. "Uganda is ahead of most in Africa." According to the World Health Organisation (WHO), an average of 70 per cent of cancer patients in developing countries are diagnosed at very late stages of illness - rendering treatment ineffective.

A 2010 Lancet study found that only 13 per cent of patients diagnosed with cancer in Uganda survive. The hospice is currently seeing approximately 1,500 patients across their three facilities, and the same number through home care.

HAU estimates cancer and late-stage Aids patients not receiving pain medication in Uganda is 50,000 or more. The WHO says palliative care fails to reach more than five million cancer patients every year.

HAU Clinical director Eddie Mwebesa, says they have seen a steady increase of patients - from the beginning of this year, a one third jump every month.

Dr. Mwebesa attributes it to word-of-mouth, an increase in hospital referrals and an improved diagnostic capacity across the country.

While HIV/Aids infection rates have remained relatively stable, he says the cancer registry is growing. Those with the illness are now actually making it on the radar, and need to be addressed in the same vigorous way the HIV/Aids pandemic was.

"HIV deaths have gone down while the number of people living with Aids has gone up," he said. "Cancer has remained more or less the same. We have no effective cures, we have only one radiotherapy centre at Mulago - that means patients cannot access treatment... So cancer is actually a bigger problem right now."

HAU estimates that about 50 per cent of their cancer patients are also infected with HIV/Aids, while those who are HIV positive are known to be at higher risk for all types of cancer.

Cancer is also a much more expensive illness to treat, while ARVs have become affordable or free. Even if more are being diagnosed, the costs of actually reaching Mulago for treatment are again, too high for most.

A Canadian NGO, Road to Care, raises money to provide transport and accommodation for women with cervical cancer to reach Mulago Hospital for treatment.

They estimate the cost of transportation, accommodation, food for two people along with the medical costs is equivalent to the average Ugandan's yearly wage. HAU focuses on home-based care. Their research has shown that patients in excessive pain prefer it.

And they say since 57 per cent of Ugandans will never see a health worker in their lifetime, bringing care to the home makes perfect sense. HAU also produces the entire country's supply of oral morphine.

Dr Mwebesa said despite having vilified in the past as a dangerous and addictive drug, oral morphine is "the cornerstone for palliative care".

"This liquid is affordable, culturally appropriate, can be administered at home without specialist training," he said.

HAU manufactures the drug on site in Makindye, which is then distributed by National Medical Stores countrywide, free for those who cannot afford it. The key to oral morphine is in the control of it, says Dr Merriman.

While morphine injections will relieve pain, it will be in one straight dose that will put patients to sleep. Here, very small doses are given throughout the day so the patient can continue to live their life as they normally would have.

"Palliative care buys quality years before death - people can live a normal life and do what they want," she said. "It's a human right to be free of pain when you are dying."

Ms Sylvia Namazzi is a 29-year-old mother of young twins, who is also suffering from Kaposi's sarcoma - a cancerous tumour that stemmed from her being HIV positive.

She is able to come to HAU once a month to pick up her morphine supply and is able to administer it herself from home.

"It's a big difference," she said. "I can wash, cook, walk to the hospital... and take care of my kids."

However, the number of people able to prescribe morphine in the country remains low.

As doctors are already scarce, and centred in Kampala, Dr Merriman says the ongoing training programme run by HAU needs to be fully integrated into ministry training.

"We realise it's no use having morphine if you don't have enough prescribers for the patients," she said. HAU was behind a landmark change in legislation that would allow wider range of health workers to prescribe pain medication once properly trained.

"We have been doing that since 2003, so we have increased the prescribers but it's very slow," Dr Merriman said. Its training has grown - last year it launched a diploma programme through Makerere Univeristy, and also provides shorter courses for practicing professionals. But there continues to be more spaces than health professionals to fill them.

Hospice Africa is currently in eight countries across the continent, and supporting about 16 new initiatives, for which Uganda is a model.

"About one third of countries across the continent don't have any radiotherapy or chemotherapy, let alone palliative care - "and their people are dying in agony," Dr Merriman said.

Philippa Croome

The Monitor/06/06/2011