Aida Nagoli worries a lot.

She agonises about her kids, where their next meal will come from, and not being able to do little chores around the house.

Mary-John Glanya worries too. For her it is the terrifying prospect of being left alone if her husband Lloyd is forced to find work elsewhere so they can make ends meet. Tuberculosis of the spine has robbed both women of the ability to walk. Their condition and the poverty they face is for most of us unimaginable.

Now, as you read this, Aida and Mary will probably be lying on the same concrete floors of the ­sweltering brick shacks where I recently met them in the Mulanje district of Malawi.

What follows is not an easy story. How can it be when it deals with the things we all fear most: incurable illness, the vulnerability of our loved ones, loneliness, dying.

That we fear such things comes with good reason. During our lives the chances are most of us will have a family member or friend diagnosed as terminally ill or in need of specialist care ­resulting from a painful debilitating condition.

I watched my own father's ­painful, protracted struggle with leukaemia and the terrible physical and emotional toll it took on my mother who subsequently suffered a stroke and needed lengthy care until her own death.

If I draw any consolation from such an experience, it is the ­knowledge that both my parents received some of the best ­professional palliative care any health service can provide.

In Malawi, however, such care is at best in its infancy and at worst non-existent in some places. It was to see for myself the ­determined efforts to move forward the ­provision of palliative care that brought me to this East African country with which Scotland has long had an affinity.

Aida Nagoli knows nothing about faraway Scotland. Since June this year, her world has been limited to how far her sisters or neighbours can carry her. In April, while four months pregnant, Aida began to suffer from back pains.

A check up at the Mulanje Mission Hospital (MMH), a ­facility in part supported by charity EMMS International, or to give it its full name, The Edinburgh ­Medical Missionary Society, produced the dreadful diagnosis of spinal tuberculosis.

Aida is lying flat out on the filthy concrete floor of the tiny near-lightless room that she and her family cram into. From the pitch-dark of an alcove the faces of her two older children are caught faintly in the shafts of weak sunlight that filter through the single-shuttered window of the shack.

"After delivery of my son, I found myself unable to pick him up," Aida tells me, as I sit alongside her with her other children and sisters.

I notice the catheter bag that lies full on the floor and Aida complains of the pressure sores that have broken out across her legs from lying in the same ­position too long. There is no mattress, just a thin cotton sheet between her and the dank floor that will become increasing damp as Malawi's rainy-season ­downpours seep into her home. I'm no stranger to extreme poverty close up, but familiarity never deflects the shocking impact of seeing one's fellow human beings living in such circumstances. How different our levels of outrage and concern would be if each of us was presented with just a few minutes' real-time glimpse into such lives.

That EMMS International's palliative care (PC) programme that has managed to reach Aida is in itself remarkable. Not only is her rural community remote, but it falls outside the catchment area of Mulanje Mission Hospital's PC scheme. Such are the trying ­conditions under which she suffers her illness, however, that the hospital decided to take up her case and provide medical care anyway.

Today, that care is delivered by 36-year-old nurse Annie Khruza Kasaka. Annie's is a job few of us would ever contemplate and the kind only those driven by a real desire to help take up. She speaks of a "passion" she has and how at the tender age of 10 she "loved" the cap she saw a nurse wearing and decided there and then that she too would one day wear that cap and care for people.

Tending her patients and making them comfortable is one thing. But a substantial part of Annie's vocation is delivering the worst possible news to sufferers of terminal cancers and HIV/Aids, the incidence of which in Malawi remains among the highest in the world.

I asked her how she went about telling her patients that their illness would take the ultimate toll and how they reacted to such devastating news.

"You need to make the patient understand their condition, they have to realise they are dying but that they have the right to die in peace and with dignity," she tells me. Annie says it's impossible to predict individual reactions.

"They often ask: 'Why me?'," Annie says. Sometimes Annie herself bears the brunt of the patient's anger and frustration, while others blame God.

"The little I can provide can take them another step, but it's still not enough," she admits.

As we sit with Aida I begin to see for myself the gift Annie has for engaging with her patients. Later, after this devoted carer has changed Aida's catheter and cleaned up and dressed the young mother's "bed" sores, Aida is moved outside into the sunshine with the help of her sisters.

Almost instantly I see another woman from the one who lay in the semi-darkness of the room half an hour earlier. On her pallid face there is the first signs of a smile and in Aida's body language a recognition that she has not been forgotten and that life has much to offer as her children gather round her.

Aida's husband has long since left her. He is said to be working in Malawi's second city of Blantyre. Occasionally he returns here to the village of Woongondole to see the children but makes no ­contribution to the family's upkeep.

Sadly, it's a story I am to hear all too often from women patients on the PC programme. Those I met spoke of their husbands' leaving because their illness had rendered them unable to cook meals, do other household chores or fulfil the sexual "obligations" of a wife.

Listening to such accounts and explanations it can be difficult to understand the motives of such men, but important to realise the cultural pressures that exist in many communities here in sub-Saharan Africa.

The same too can be said about the provision of PC itself. The simple fact is that often the struggle to survive in such impoverished environments takes so much effort and all of the meagre resources available to people that the idea of expending valuable energy or effort towards those already dying seems a "luxury" most can ill afford.

Not everyone, of course, feels this way. Just a few miles from where I met Aida, Mary-John Glanya and her husband, Lloyd, live in a similar village and tumbledown shack. She too is paralysed with TB of the spine, and so hot is the interior of their home that Mary-John spends most of her life lying on an outside porch on a mattress, covered with a mosquito net at night.

She takes painkillers but not the cheap and effective morphine that here in Malawi can be so difficult to obtain because of restrictive ­regulations in prescribing the drug. This despite the fact that it is recognised by the World Health Organisation (WHO) as the drug of choice for relief of severe pain in diseases such as cancer and HIV.

After seeing her stricken with her illness, Lloyd knew he would face major problems in earning enough to take care of his wife and talked of leaving the community to work on a tea plantation some distance away.

The prospect not only of being left alone, but that Lloyd might never return, terrified Mary-John.

"We sat down and talked about it, and I told her I would never leave her," said Lloyd, when asked how they came to the decision about how they would face the future together.

Now he works the nearby fields and does odd jobs in the village to help them survive but most ­importantly to enable him to stay close to his wife.

This home-based care is only possible with the help of organisations like EMMS International, that works to provide PC in some of the most remote and difficult ­environments in Malawi. Here, as elsewhere in ­sub- Saharan Africa, the disease burden is huge, and greatly exacerbated by the devastating impact of HIV and Aids.

Dr Cornelius Huwa is the medical director at Queen Elizabeth Central Hospital in Blantyre which is part of the Palliative Care Trust and supported by EMMS International.He says that many financial donors opt for preventative issues because of the impact on Malawi's economy but argues that in ignoring PC provision many people are robbed of their dignity.

"If palliative care was just about the patient that's one thing, but when you see how much it helps the whole family then you realise how much it matters."

If such care is about one thing more than anything else it is about adding life to days, not just days to life. On the walls of the hospital in Blantyre, a plaque is inscribed with the WHO declaration: "Relief from suffering is a human right." No doubt Aida Nagoli, Mary-John Glanya and countless others like them would agree.

You can change this ...

Making a gift to the Sunday's Child appeal

You can relieve pain and take away fear by helping to improve end-of-life care in Malawi. Your donation will be doubled by the UK government, helping even more people in desperate need. Making a gift is easy using any of the options below:

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Telephone: Call EMMS International on 0131 313 3828.

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