Category Archives: Health

An African palliative care ‘No make-up selfie’

I today wrote this article for the Africa edition of ehospice news about why I posted a #NoMakeUpSelfie of myself on Facebook and why I donated money to the African Palliative Care Association (APCA)

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The ‘No make-up selfies’ trend has had extraordinary results. Cancer Research UK have reported that they have been donated over £2 million in just a few days.

While this social media trend has been dominated by those living in Australia, the UK and the US, sadly we know that cancer is a truly global problem. However, this global problem disproportionately impacts on low and middle income countries.

Indeed, we know that 70% of deaths caused by cancer are found in low and middle income countries.

The disparities don’t stop there. Here in Uganda, where the African Palliative Care Association is based, there is just one radiotherapy machine in the whole country. This one machine it is reported, can break down for weeks at a time.

In the UK by contrast, for a similar sized population, there are hundreds of radiotherapy machines available.

For almost every cancer patient in the UK there is access to basic pain control medications. Again though, just like the ‘No make-up selfies’ this is a luxury disproportionately enjoyed by those living in the UK, US and Australia.

recent study found that 4 billion people, over half of the world’s population, live in countries where regulatory barriers leave cancer patients suffering excruciating pain.

Part of what the African Palliative Care Association does is to campaign and lobby for everyone across Africa to have access to these pain medications. It is not a luxury that should only be enjoyed in developed countries but a fundamental human right that should be available to all.

ehospice reported last November that “Opioids are often unavailable [in Africa], and access is significantly impaired by widespread over-regulation that is pervasive across the region. In many countries access to strong painkillers such as morphine is impossible as they remain legally restricted.”

The results of this grim, often unspoken about, reality is that many cancer patients in countries like Uganda are diagnosed late and have little or insufficient access to treatments. A cancer diagnosis then is often a death penalty and this death comes with little support or access to pain medications.

There is no other way of saying this, cancer patients across Africa are too often left to die in considerable pain.

But it doesn’t have to be like this. All across Africa, the African Palliative Care Association are helping governments and other strategic partners to respond to this challenge.

If you feel, like everyone at the African Palliative Care Association does, that no cancer patient should ever be left to die in preventable pain then please support the ‘No make-up selfie’ spirit and post a photo of yourself on Facebook, donate, and ask others to support us.

Our work is only possible because of your support.  Please consider donating monthly whatever you can afford. The smallest of donations can have the biggest of impacts.

To donate, just click here.

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Coping with death: 10 years on from the Madrid bombings

 

 

 

 

 

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Today the internet has been awash with reflections and analysis of the 10th anniversary of the Madrid bombings that took the lives of 191 people and injured 1,820 more. The political aftermath in Spain has been analysed, the role of Al-Qaeda examined and the role of ETA dismissed (by most).

And yet, in all the articles I have read, with the exception of a few survivor stories, there has been a dearth of analysis to describe how people are feeling.

Us Brits know only too well that these occasions act as a sombre reflection on the needless and violent loss of life. I write this with confidence because I have seen these sombre reflections echoed on the 7th July in London. I have no doubt that some American friends can say the same for the 11th September in New York.

Being in London on the 7th July is a strange experience as the macabre anniversary intermingles with the vibrant life of the capital. Life bustles on with only the subtle behaviour changes of the living hinting at the loss that families, communities, and the nation experienced.

While life speeds on, a few people will struggle to get out of bed on these anniversaries. For some the weight of their loss will once more sit on their chest as they lay awake and alone next to the shadow of the ghost of a former lover. A few though will be out of bed and on the way into work only to uncharacteristically find themselves lost in thought as they wait at the bus stop thinking back to the awful explosions.

Many more though will go through their day changing their routine only a fraction to be a small part in the wider ritual of loss that is now, for better or for worse, part of their national identity.

This change in the national mindset is like a shard of glass inserted deep into a national psyche. But the rupture that caused this change is not just about a sense of grief or loss, but also vulnerability. This vulnerability can manifest itself in individuals, and especially survivors, in ‘what if thoughts’. What if I hadn’t been running late that day? What if my wife had been working from the office that day? What if…

On days like this, on anniversaries of atrocities, our own mortality sits slightly closer to our hearts and weighs slightly more on our subconscious.

Politicians will talk with bravado about how these attacks will not change us. They will say that they will make us stronger in the face of adversity. But, deep down we know that we are changed. We know that there is now a chink in our personal and collective armour. We know that we have experienced vulnerability and that this has crushed our completely false sense of invincibility.

For some this anniversary will bring flooding back an intense wash of emotion…grief, pain and loss. For many more though it will leave us feeling uncertain, insecure, and vulnerable.

My message then to anyone who is reading this and is today feeling out of sorts is this: it’s OK. It’s not ‘letting the terrorists win’ to feel whatever you’re feeling.

Death, near-death, and collective grief are messy subjects that don’t fit nicely into political rhetoric or motivational clichés. We are what we are – a jumble of thoughts, feelings and emotions that are shaped by our experiences.

Thousands of people across Spain and especially in Madrid experienced something truly awful 10 years ago today. No amount of pressure will squeeze their individual responses into a politically useful box.

This article was cross-published on the International edition of ehospice

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Patient photos from Hospice Africa Uganda

Last week I visited Hospice Africa Uganda. I was lucky enough to spend a couple of hours with some of the patients. I had a really wonderful time.

Sometimes people think of hospices as places where people go to die. This perception is so different to the reality I experienced. This is, at least in part, why I wanted to share these photos. During my visit I was blown away by the vibrancy of life the patients radiated.

Click on the images below to see them enlarged.

*Please do not reuse these photos without my consent. Thanks. 

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An inspiring start to the week

Totally humbled. That’s how I felt this Monday morning. Reading, editing and publishing the story of Moses Byomuhangi after a weekend of partying and rock climbing has inspired me to be back in the office working for a palliative care organisation.  

After a weekend of having a lot of fun I made my way back into the office of the African Palliative Care Association where I work. I was feeling a bit ‘Monday morning’ when I started to work on an article submitted by a recent graduate, Moses Byomuhangi.

I would really encourage you to read Moses’ story.

Reading his account was a really inspiring start to my week. It left me feeling not only humbled but also inspired to keep working for the roll out of palliative care. It reminded me just why it is so important to communicate palliative care to a wider audience: because no one should have to experience what Moses’ parents did and no 15 year old should have to watch their parents die in pain.

There was so much of Moses story that took my breath away. I cannot even begin to imagine how hard it would have been for Moses, at the age of just 15, to watch his parents die in pain.

At the age of 15 I was playing football and drinking cans of beer in the local park with mates. To this day I have not experienced such a level of responsibility that Moses experienced at the age of 15. I am not sure how I would cope with being the primary care giver if my parents fell ill. If I had that responsibility at 15, I am not sure if I would have coped at all.

This is, at least in part, because growing up in the UK I was sheltered from suffering. If someone was dying or in extreme pain I would (we would?) take it for granted that they would be prescribed strong pain killers. They would almost certainly go to hospital for medical attention.

As a result, the prospect of watching (let alone caring for) a loved one in their dying moments suffer excruciating pain simply does not occur. In the age old British adage, ‘it doesn’t bear thinking about’.

It is worth reflecting though quite how unusual this is though. It is thought that about 90% of those who are in need of palliative care around the world do not receive it. In fact Australia, Canada, New Zealand, US and parts of Europe account for over 90% of the global consumption of opioid analgesics (strong pain medications).

In short, Moses’ parent’s reality of dying in pain is the crushing, devastating and completely avoidable reality for the majority. My British experience of being sheltered from such suffering leaves me in the absolute global minority.

But it is not the suffering that Moses has experienced that left me feeling so humbled and inspired. It was the fact that he used this suffering as catalyst to work so incredibly hard to work towards such an admirable goal – the relieving of suffering of others.

I hope that I can take on just a little bit of Moses’s passion, dedication and spirit in my work.

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On genocide, palliative care and enduring hope

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One of the many reasons I love my current job is because of the amazing people I get to interact with on a daily basis.

When working in palliative care you meet people who are being pushed both physically and emotionally and it never ceases to amaze me how people respond to these challenges with humour, courage and most of all, hope. This is true for both patients and medical practitioners.

Today I feel really honoured to have received an article from Dr Christian Ntizimira from Rwanda that marks International Holocaust Memorial Day by looking at the challenges to providing palliative care in a post genocide society.

If you accept my observation that death can push people in conventional circumstances to their limits both emotionally and physically then it is a small step to observe that genocide has the potential to rip both people and society to shreds.

But what sets Dr Christian’s article apart is not the description of how people’s lives were ripped apart and how millions were killed of displaced but how, in the aftermath of such suffering, Dr Christian has chosen to draw out a narrative of hope and courage.

If I was to draw one thing from this last year of working for the African Palliative Care Association – and more generally with palliative care practitioners – it is this optimism in the face of adversity.

Whatever happens, however bad, palliative care offers a simple framework to be able to help. I have seen this in the care patients receive right up to their last breath and Dr Christian powerfully illustrates this point in his article on genocide and palliative care.

You can read Dr Christian’s article visiting ehospice by clicking here >>>

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Integrating palliative care into international human rights mechanisms

To mark World Human Rights Day (10th December) I wrote this article for ehospice about the importance of integrating palliative care into international human rights mechanisms. 

logo_460x88As we celebrate Human Rights Day we should take a moment to reflect on the millions of people around the world who are suffering from excruciating but ultimately preventable and manageable pain because states have not set up systems that meet and respect their basic right to health – their right to palliative care!

Palliative care is defined by the World Health Organisation as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Human rights and palliative care are in many ways natural partners. Both are based around the dignity of the individual being applied universally and without discrimination. But they also overlap. Not only is palliative care a human right in itself, it also allows for the fulfilment of other rights.

Without good palliative care, people can become imprisoned in their own homes. Trapped by the burden of disease symptoms including pain making them incapable of accessing education, health, transport or other basic elements of life that most of us take for granted. These are elements of life that we all have a right to.

Read the full article here >>>

 

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What is palliative care? Views from around the world

ehospice has today launched a series of articles looking at different understandings of palliative care from around the world. Each edition (there are currently 10 around the world) has produced an account of one person’s understanding of what palliative care is, and why it’s important to them. These articles include accounts from patients, carers and health care professionals. 

On the Africa edition of ehospice I wrote this account after speaking to my colleague, Mackuline Atieno – a Kenyan palliative care nurse. 

Palliative care is…accepting that “death is a part of life”

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Mackuline Atieno, a palliative care nurse based in Kampala, sits patiently, thinking carefully before answering:

“When you find life, you also find death because death is a part of life.”

The question she had been asked was simply, what does palliative care mean to you? When asked to elaborate Mackuline once again exhibits a thoughtful nature and an articulate manner.

“Palliative care means that you have to live life well no matter what circumstances you find yourself in. If you have a life-limiting illness, you have to find the best way to live with that because you only have one life. And when death comes, all we can do is deal with it the best we can.”

Mackuline Atieno is a Kenyan palliative care nurse who is currently studying for a Masters in Medical Anthropology, working for the African Palliative Care Association (APCA) whilst also still finding time to be a full-time mother.

Mackuline grew up a long way from Kampala in Iten, a small Kenyan town high in the hills. 

When Mackuline was growing up the village was “quite rural” with few health care facilities. Mackuline explains, “We had just one district hospital that provided basic care. When I was growing up I had not come into interaction with palliative care.”

From an early age Mackuline experienced death but at the same time, as with many cultures, she was also encouraged not engage with the subject.

“I stayed with a relative who had HIV/AIDS but I know that [residents of Iten including the Keiyo and Nandi Tribes] have a real fear of the dead. It is a real challenge about how to deal with death, how to talk about it. There is a story [in Iten] that says when people were close to death they would take them to the forest with a long rope and pull on the rope. If the person did not pull back they knew they were dead.”

As a young professional Mackuline left Item to study nursing at the University of Moi in the neighbouring town of Eldoret. Here Mackuline had her first experiences of interacting with death in a professional setting.

“I was in a Labour ward where the mother died on the table. I remember coming out of the Labour ward and the relative was looking at me intently and I just shook my head. Looking back, this is such a bad way to send a message. I was not able to do justice to this patient because of my fear of how to handle such a situation.”

Since training and working in palliative care, Mackuline has become much more used to talking about, and supporting others, in issues around death and how to deal with difficult situations. Looking back on these early experiences Mackuline commented that, “You do not even need to speak sometimes, palliative care is in the attitude with which you approach someone. That can be good enough. If nothing else, I can be with a patient.”

It was also however during these early nursing years that Mackuline started to develop specialist interests that she would take with her into her palliative care career.

“It was in this time that I became interested in paediatrics. I really felt like I needed to give myself to help children, especially children’s palliative care because that is something few people are comfortable with talking about.”

This interest has continued throughout her career. Just last week Mackuline was featured on Ugandan national television talking about the new UNICEF/ICPCN report on child access to palliative care in sub-Saharan Africa.

Mackuline now works for APCA where she is responsible for supporting Kenya, Gambia, Rwanda and Zambia in implementing and integrating palliative care programs. However, Mackuline continues to work with a passion for learning. Now studying for a Masters in Medical Anthropology, Mackuline insists that only by understanding individuals within their cultural heritage can you truly hope to offer effective palliative care.

Part of this Mackuline says is, “to breakdown the paternalistic nurse/patient relationship and start to learn from the patient. Once you understand and are interested in where they have come from you can start to do better palliative care.”

When asked what palliative care has taught her Mackuline once again looks back to her early days as a nurse before responding:

“From my first experiences I felt helpless, as soon as I did my first placement in Hospice Africa Uganda though I stopped feeling so helpless. In palliative care you can support someone who is dying. You see a situation where there is no stigma, where people who are dying are smiling. Palliative care has also taught me never to give up.”

As well as supporting her patients Mackuline has adopted a ‘palliative care ethos’ in her own life. Just before rushing back to work Mackuline commented: “There is always someone who is in a worse situation than you who is enjoying their life. I think I have to live my life well. When death comes, we just make the transition as comfortable as possible. Until then we can just live in the reality we have been given.”

*You can read more personal stories from around the world on ehospice:

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Eugene Grant: “We need to talk about men’s health.”

This is a guest post by Eugene Grant. Eugene is a great friend of mine, a freelance writer and social commentator. 

173796_507019340_815239236_nWe need to talk about men’s health. Not the magazine filled with adverts of pricey protein bars and photo-shopped photographs of male models. I mean we need to talk about the health of men.

It’s not an easy subject. For many males – admittedly, this writer included – our psyches are modelled and moulded by traditional discourses of masculinity, hardiness and gendered provider/protector roles. Forget what you’ve heard about man-flu: we don’t get ill, hurt or tired. Well, much. And when we do, many of us abide by an Omerta-like code of silence that could inspire the envy of even the most conspiratorial Mafia family.

But it’s not true, and it’s not helpful.

Almost 20% of men are likely to be treated for mental health issues. Over the past three decades, three to four times more men have taken their own lives than women. There has been no point during this thirty-year period when the rate of suicide among women was higher than that of men.

One of such man was a close friend of mine. One of the hardest, toughest, most creative and humorous people I’ve known took his own life after years of trouble and turmoil most of us cannot – thankfully – even imagine became just too much. That was a few years ago. I wish his family knew how much I miss him, sometimes.

A year or so later, in 2011, over 10,500 men died from a different health condition: prostate cancer. Prostate cancer is the second most common cause of cancer death among men in the UK. That year, a further 2,000 men were diagnosed with testicular cancer, according to leading charity, Cancer Research UK.

Us men do get ill. Seriously ill. We do breakdown. We die – often before our time.

It is with all this in mind that this year, for the first time, I signed up to participate in Movember – growing a moustache, on it’s own (no beards allowed), for the whole of November – to raise funds for vital support and research programmes that help men and their families who live with these conditions, day-in-day out.

Movember is great fun – and possibly the best example of global, co-ordinated and (effectively) branded volunteer fundraising there is. Men everywhere are either taking part or know someone who is. Facebook is awash with clean-shaven ‘selfies’; gyms, pubs and canteens buzz with discussion about whether to grow a handlebar, or a walrus; whether to emulate Tom Selleck or copy Salvador Dali.

My girlfriend is utterly horrified and a staunch opponent of me growing a ‘tache’. I can’t say I blame her. I am under no pretences that, by the end of the month, I will look truly terrible: more like a prepubescent Ethan Hawke than a modern day Teddy Roosevelt.

But it is precisely the sacrifice of dignity – something else many men are bad at – that embodies much of the spirit of Movember.

After all, we’re not invincible; we do get ill; we do breakdown.

And that’s okay.

So let’s help each other, and our families, through it the best we can.

We need to talk about men’s health. We need to talk about your mo’.

If you’d like to donate, then please give what you can, if you can. To find out more about Movember or the programmes it supports, click here.

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Human Rights Watch intervenes in Russia drug trafficking case


Last June I wrote in Liberal Conspiracy about the shocking case of Dr. Khorinyak who had been convicted of drug trafficking offences after prescribing basic pain medications to a friend who had muscular dystrophy since childhood, was unable to walk, and was diagnosed with cancer in 2007.

I am delighted therefore to read in ehospice that HRW has now written to the Prosecutor General of the Russian Federation, Yury Yakovlevich Chayka. In their letter, HRW makes a clear legal and moral case for why the Russian authorities should drop these ludicrous charges against Dr. Khorinyak. The letter states:

“Our research has found that regulations on medical use of controlled substances in Russia are overly bureaucratic and excessively onerous, interfering with proper prescribing and with the ability of patients to access these medications. A report detailing these findings is forthcoming. Russia has among the strictest drug control regulations in the world, going far beyond what is required under international law. Russia not only strictly regulates morphine and other drugs in its class but also tramadol, a significantly weaker opioid that is not a controlled substance internationally.

Under international law, countries have an obligation to regulate the availability and accessibility of strong opioid medications, such as morphine, to prevent its misuse and diversion. However, drug control efforts must be continually balanced against the responsibility to ensure opioid availability for medical purposes, in line with the right to health under international law.”

It continues:

“While Dr. Khorinyak and Mrs. Tabarintseva may have violated the letter of Russia’s drug control regulations, they did so out of humanitarian considerations to help a patient with a legitimate medical need, who was deprived access to medications for arbitrary, bureaucratic reasons. As a medical professional, Dr. Khorinyak felt duty bound to help Mr. Sechin, and her actions essentially did no more than seek to end a situation in which Mr. Sechin’s rights were being violated. The prosecution presented no evidence whatsoever that Dr. Khorinyak and Mrs. Tabarintseva personally benefited from prescribing and buying tramadol for Mr. Sechin, that any of the medication was used for non-medical purposes, or was diverted to the black market. We therefore consider the prosecution and conviction to be disproportionate and in violation of international human rights law.”

Human Rights Watch intervention in this case is welcomed. Hopefully the prosecutor will take their advice and drop these disproportionate charges.

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From San Francisco to Namibia – Father Rick Bauer on spirituality in palliative care

This article was originally published on the Africa edition of ehospice


“I’m a Catholic Priest. I did my seminary from 81-85. The seminary was in San Francisco. I entered it just wanting to be a country priest, and then HIV hit and it changed my life. It changed my understanding of church and what church could be. I knew nothing about palliative care and all of a sudden I was surrounded by people who were dying.”

Sitting in the warm afternoon sun, Father Rick Bauer relaxed back into his chair. It was clear that he was used to explaining how he was taken from his home in the US to travel across sub-Saharan African, driven by palliative care and a desire to limit human suffering. Very quickly it became clear that his early years as a priest in San Francisco were formative for him in developing his interest in spirituality as a part of good palliative care provision.

“So in the earliest days of the pandemic it was pastoral care, the doctors were saying there was nothing more we could do. Nurses would be leaving trays of food outside the rooms of the guys refusing to go in.”

His words were clearly carefully chosen – balanced between wanting to portray the reality of what he and others had felt at the time whilst clearly conscious of how common rhetoric around HIV and AIDS  had moved on since the 1980s.

“I mean…we were scared, I am not judging them. But it was up to us to carry these trays in, you know? Others didn’t want to be in there, but for me I saw no choice. There were guys needing help. People ask me if I was scared and I just think it was holy stupidity. I just saw a tray of food and a hungry guy. I don’t know, I guess yeah, I was scared.”

Father Bauer is now a specialist in spirituality in palliative care and is in Johannesburg, South Africa where he is taking part in a workshop on spirituality at the joint African Palliative Care Association and Hospice Palliative Care Association of South Africa 2013 Conference. Having spent much of his working life in different parts of sub-Saharan Africa, he now lives in Namibia where he continues to work with spirituality and palliative care.

“I spent 15 years managing HIV care and support organisations, first in Tanzania and now in Namibia. But now I am doing lots of things…one of which is teaching in palliative care and how to integrate spirituality into palliative care.”

Spirituality is included, alongside physical and psychological care, as an integral part of the WHO definition of palliative care. Despite this, it is often confused or misunderstood as just looking after the religious needs of a patient.

Father Bauer, however, was insistent that good spiritual care did not necessarily involve religion but rather that it depended upon each individual patient’s needs. Once again, he referenced his early experience with HIV patients in San Francisco to illustrate this point.

“When HIV first hit, the first thing to come up was good counselling practice. We are talking about active listening for example. I don’t think people have to be ordained or anything to provide spiritual care, but at times this can be useful. When someone is dying they have questions. You’re not there to answer them but to listen.”

The difference between psycho-social support that a patient needs and the spiritual support a patient needs is often blurred. Father Bauer offered a simple distinction for practitioners to consider when interacting with patients.

“The ‘Psycho-’ is about myself – for example, if I have been diagnosed with cancer what are my worries or concerns? The ‘social’ is how this then relates to my family my friends. The spiritual care is about helping to ask some of those deeper questions.”

It is common, as people approach the end of life, that they have questions and concerns about deeper, spiritual questions about what, if anything, happens after death. Father Bauer is insistent in pointing out that often patients have a deep spiritual need to also look back and reflect on their lives and what they have achieved.

“There is a growing emphasis on forgiveness. Social workers are seeing it’s important and this is such as spiritual concept. I can train someone on how to give an apology or even accept an apology – that’s a social thing. The spiritual thing is how to really forgive someone, or to forgive yourself. Again though, this is just about being there 100%, to be with a patient to listen to their concerns.”

Spiritual care, in one sense, is a simple amalgamation of soft skills such as active listening. Done well however, it also involves an in-depth knowledge of different cultural and religious factors to understand the specific need each patient.

“Not everyone will be trained in spiritual care, but everyone can listen in a way that puts the patient at ease. Just be there for them,” said Father Bauer.

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Dyslexia – what do I know about it?

This is a copy of a letter I sent to the Daily Nation – Kenya’s leading newspaper

Dear Editor,

I was pleased to see your article “Dyslexia: What do you know about it?” (22/10/2013) – It is important to raise awareness of dyslexia. With the right support and help, a child can prosper in any profession they choose despite their dyslexia. .

Like Rachel, I am also dyslexic. But, so are an estimated 700 million people world-wide – approximately 10% of the global population.

While my dyslexia was only formally diagnosed towards the end of my masters degree, I was supported in a good education system that enabled me to prosper both academically and socially. For this I am truly grateful.

However, all around the world – including in Kenya – children do suffer greatly because of lack of diagnosis. The academic and psychological consequences of unaddressed dyslexia can be devastating for all concerned – including family and friends. Dyslexia is one of the main causes of school drop-out, marginalisation and social exclusion. Studies show that dyslexic people are over-represented in prisons, among adolescents who commit suicide, and among people suffering from mental illnesses, including depression.

This is a global phenomena but one that is exaggerated in low and middle income countries.

I now work in Kampala in communications writing under deadline and pressure on a daily basis. It is a profession that I love. With the right support there is no reason why others with dyslexia cannot consider going into any career that they wish.

Yours sincerely,

Steve Hynd.

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Millions in Africa do not have access to morphine and suffer unnecessary preventable pain

This article was originally published on Left Foot Forward, Britain’s No 1 left-wing blog

Palliative care

Palliation – literally, the removing of symptoms of life-limiting illnesses such as pain – has been brought sharply into focus in Africa due to the dual burden of an ageing population and an increased disease burden.

To give just one example, 70 per cent of people living with HIV worldwide live inside sub-Saharan Africa, a region which constitutes only 12 per cent of the global population.

Millions of these people in sub-Saharan Africa require palliative care to address the medical/physical, social psychological and spiritual challenges as a result of the life-limiting illnesses.

Despite the large demand, there is still little palliative care provision across much of Africa. Many countries do not have any element of palliative care: no hospices, no formal training for medical professionals, no or little integration of palliative care into national health systems and often little public awareness.

It is estimated that only 9 per cent of countries in Africa have palliative care integrated into mainstream health services.

One of the largest challenges facing pain relief efforts in Africa is the availability of, and access to, oral morphine. It is thought that Hospice Africa Uganda, a centre of excellence of palliative care in Uganda, can mix a three week supply for a patient for ‘less than a loaf of bread’.

Despite this, oral morphine is still not widely available to most Ugandans, let alone the rest of Africa.

Bernadette Basemera, a palliative care nurse based in Kampala, explains part of the problem:

“Morphine wrongly incites fear: Doctors wrongly fear patients becoming addicted, the police wrongly fear drug related crime, and members of the government fear falling short of international drug control frameworks.”

As a result of this fear, millions do not have access to morphine and suffer unnecessary preventable pain.

In recent years however, there have been signs that this might be a thing of the past. In the last two years alone four countries – Rwanda, Swaziland, Tanzania and Mozambique – have all adopted stand alone palliative care policies.

Although policy development does not immediately translate into oral morphine availability, a number of countries such as Kenya, Nigeria, Zambia, Namibia Ethiopia and a few others have improved access to oral morphine. Meanwhile Hospice Africa Uganda, in a partnership with the Ministry of Health of Uganda, continues to produce and distribute oral morphine whilst at the same time offering training courses to practitioners from all over Africa.

At the heart of these developments are passionate workers like Bernadette. Once again working late, Bernadette describes why she wants to work in palliative care, saying:

“Palliative care is the sort of care that you would hope you and everyone you care about receives. No one wants to think of a loved one suffering unnecessarily.”

Bernadette offers a simple motivation for her work in palliative care. This simple motivation, however, could benefit millions of Africans. Palliative care needs to be rolled out, and people like Bernadette might just be the way to make it happen.

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Reflections from a palliative care conference

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Delegates at the joint APCA/HPCA palliative care conference

I have just returned from the African Palliative Care Association and Hospice Palliative Care Association of South Africa joint regional conference in Johannesburg, South Africa and I am inspired.

This was my first palliative care conference. A year ago I didn’t even know what these words even meant. Before the conference started I could have told you about palliative care and perhaps more importantly why it is important. I would quite possibly have waxed lyrical about it being everyone’s right to live a life free from preventable pain. I might even have told you about someone inspiring that I’ve met who has spoken about the importance of palliative care to them.

But, if I am being honest, before this conference I wouldn’t have really felt it.

Something in the way I think about palliative care has changed over the last few days though. Trying to put my finger on exactly what is difficult – so much has happened. It could have though been the moment when a Ugandan journalist who I was sharing a stage with let a single tear drop roll down her cheek as she talked about her Aunty being unable to access basic pain medication in her dying days.

It could also have been when a complete stranger, who I still don’t know the name of, approached me and talked to me about the burden of feeding her bed bound mother every day as she was too frail to feed herself and that the local hospital would not accept her because, so they said, “there was nothing wrong with her”.

It might even have been that unspoken moment when a delegate was asked if she had children and after a moment’s pause she responded that, she “used to”.

But of course it was a cocktail of this and more. It was spending 4 days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the palliative care that they need.

People who had talked the Bush administration into setting up a fund for palliative care in their HIV response programme. People who had pioneered palliative care in Africa 2 decades ago and were still as passionate and articulate as they ever were. People who felt a guilt for attending a palliative care conference because it meant that they were away from their patients bedsides for just under a week.

The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.

On the final evening of the conference there was a diner reception. As I was standing watching delegates dance, joke and chatter, I thought to myself that it felt just like a family reunion. There was a tacit acknowledgement that everyone understood, at least on some level, why everyone else was there. Just like a family is bound by the bond of blood so at this conference it felt like there was an unspoken bond in the knowledge of, and passion for, palliative care.

As with all families though, there also exists unspoken traumas that rest just beneath the surface. But standing watching delegates dance I reflected on what I felt to be the strength of this “palliative care family”. Palliative care gave each member the opportunity to be able to share these traumas that we all have with each other. Everyone was accepting and expecting to offer a ear when someone needed to talk about losing a patient, friend or loved one.

During one of the workshops Reverend Rick Bauer made a comment that stuck with me. He said, “When you are talking to a patient the most important thing you can do is be there 100% with them at that moment.” I think what made the atmosphere at this conference so special was that, almost without realising, delegates were 100% attentive to those around them and to others commitment to rolling out palliative care to all those who need it.

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Gloucestershire County Council’s hypocrisy in tackling lung cancer

The Stroud News and Journal has today run the story “Lung cancer awareness campaign comes to Stroud”.

The article highlights the Gloucestershire County Council (GCC) campaign and the importance of getting yourself checked out if you display symptoms of lung cancer such as a persistent cough and breathlessness.

What it fails to comment on however are the causes of lung cancer. 90% of cases of lung cancer in the UK are attributed to smoking.

Equally it also fails to mention the £12.2 million that GCC has invested in tobacco firms.

On the one hand GCC are funding campaigns to raise awareness of lung cancer and on the other they are pumping money into an industry that is responsible for 90% of cases of lung cancer…

When I raised this with local politicians it only seemed to be the local Conservative MP, Neil Carmichael, who didn’t think this was a problem!

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Peace and palliative care in the DRC

This article was first published on the Africa edition of ehospice

Dr Paul Pili Pili is a representative of the Democratic Republic of Congo’s Ministry of Health. But like many people from the DRC, he has been affected by the war, knows people who have died and more than anything, wishes for peace and stability for his country. Steve Hynd from the African Palliative Care Association met up him to find out more.

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Scottish doctor runs ultra marathons to fundraise for palliative care in Africa

This is an article that I wrote for the Africa edition of ehospice

Endurance athlete Dr Andrew Murray is set to embark on a spectacular challenge across East Africa to raise money for the African Palliative Care Association UK.


Beginning on 1st July, Dr Andrew Murray will run more than an ultra-marathon (50km) every day in an epic 18-day run across East Africa, that will include running up and down Mt Kenya and Mt Kilimanjaro, through wildlife-filled game reserves, tropical rainforests, and running with world-record holders and world champions.

Dr Murray is hoping that his epic endurance test will inspire people to sponsor him to help raise money for causes he is passionate about such as improved patient care in Kenya.

Dr Murray grew up in Kenya and rose to fame in 2011 when he ran 4,290km from John O’Groats to the Sahara desert. In 2012 he won the North Pole Marathon, the Antarctic Ice Marathon, and completed a world record seven ultra-marathons on seven continents in under a week.

Read Dr Murray’s full story on ehospice

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Ageing Mandela reminds us of importance of palliative care in Africa

This article was originally published in The South African.

Whilst wishing Mandela a full recovery we can, and indeed must, use this opportunity to talk about the importance of palliative care – a taboo across much of the world including most of Africa.

Left: A 1961 photo of Nelson Mandela (AP); Centre: Mr Mandela and his then-wife on his release from prison in 1990 (AFP); Right: Mr Mandela pictured in 2007 (AP)

In 1999 Nelson Mandela famously said, “A society that does not value its older people denies its roots and endangers its future. Let us strive to enhance their capacity to support themselves for as long as possible and, when they cannot do so anymore, to care for them.”

Ever self-effacing, Mandela would have said these words to offer support to other South Africans and indeed other Africans who needed this care. Now however, approaching his 95th birthday, it is clear that Mandela needs this support for himself.

People from across the world have come together to wish Mandela a recovery from his latest lung infection – a legacy of the tuberculosis he suffered from when he was imprisoned on Robben Island. Prayers have been said and fingers have been crossed as anxious individuals wait for next bulletin of news to come from Pretoria’s Mediclinic Heart Hospital.

As difficult as it is to say, it would appear that Nelson Mandela is moving closer to the inevitability of death that faces us all at some point.

Writing in the Independent, Jeremy Lawrence comments on Mandela’s ill health saying, “The dilemma his doctors face – when to stop “striving officiously” as the Hippocratic oath has it, and switch focus from curing to caring – is all too familiar to palliative care specialists. Recognising that the end is approaching and broaching the subject with the patient and their family demands strength and delicacy – and is often avoided.”

Whilst wishing Mandela a full recovery we can, and indeed must, use this opportunity to talk about the importance of palliative care – a taboo across much of the world including most of Africa.

Mandela’s support and care that he is receiving at Pretoria Mediclinic Heart Hospital sets him out as unusual. The vast majority of African’s do not have access to basic palliative care provision. The African Palliative Care Association summarizes the scale of the challenges when they say:

“A survey of hospice and palliative care services on the continent found that 45 per cent of African countries had no identified hospice or palliative care activity, and only nine per cent could be classified as having services approaching some measure of integration with mainstream health provision.”

The WHO estimates that about 1% of the Africa’s population requires palliative care – this is approximately 9.67 million people across the continent – approximately half a million of whom live in South Africa.

Death is never an easy thing to contemplate. This is especially true when we are talking about someone we love and above all an anti-apartheid hero such as Nelson Mandela. When the inevitable comes closer however, it is not only the patient who can benefit from effective palliative care, but also the family, friends, and loved ones.

In the case of Mandela, it is not just his friends, family and loved ones who suffer the pain of uncertainty but his nation, his continent and, it is not over-stating it to say, most of the world. As Mandela faces the challenges of illness and hospitalisation, the support he receives will not only ease his pain, but also the pain that others around the world feel.

Mandela is in hospital for the fourth time this year already. We stand united wishing him the quickest and fullest recovery possible. We know that his medical team will look out for any indication of suffering that may be physical, social, spiritual or psychological and deal with it.

It is important that palliative care providers in Africa follow this example, and integrate the needs of the aged and the ageing.

Mandela is a man who has inspired a generation. In his later years, hopefully the quality palliative care that he receives will continue to inspire people from across Africa.

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The EU has NOT banned menthol cigarettes

Always eager to break a story, the blog Guido Fawkes ran with this headline:

EU Agrees Ban on Menthol Cigarettes

As this story breaks, I am sure that you will see comparable headlines cropping up in newspapers across the UK.

The problem is, the story isn’t really true. At best it is preemptive. The EU simply has not banned menthol cigarettes.

So what has actually happened? The Council of Ministers has met and voted to support a proposal to ban menthol cigarettes (although some Ministers such as the Polish Minister has opposed the move). This proposal will not become law unless the European Parliament votes it through.

You might at this point think I am being a little bit over the top? A mere technicality you say!

But think of this another way. Would a UK publication run the headline, “British Parliament agrees ban on xxx” if in actual fact only the House of Lords (one third of the British Parliament) had actually voted on it? No, of course not, it would be wildly misleading.

So why the different approach for EU related affairs? The Council of Ministers makes up just one third of major EU institutions and yet publications run headlines claiming it represents the whole of the EU.

The difference is of course that most Brits don’t know what the Council of Ministers is, let alone what it does and so are incapable and unwilling to hold the papers and politicians  to account.

The Council’s press release can be read here – https://www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/en/lsa/137571.pdf 

This article was cross-posted on Liberal Conspiracy

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Refugees also have a right to adequate palliative care

This is an article that I wrote for the Africa edition of ehospice news for World Refugee Day. 


The WHO states that: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being.” On UN World Refugee Day it is important to reiterate that this applies equally to people classified as refugees.

The fulfilment of this right is pushing both governmental and non-governmental organization’s capacity to their limits as the number of refugees across Africa continues to rise.

Read the full article here >>>

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