Category Archives: Health

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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Photo essay – palliative care workers from francophone Africa

I am not a photographer, and would never claim to be. But these are photographs that I took of a few of the participants of the palliative care training course for francophone Africa that is currently being held at Hospice Africa Uganda. Some of these photos are published on the African edition of ehospice.

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“You cannot be happy to see your dad suffering…”

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


Mutagubya Bruno is the son of Lawrence Ssenyonde. Lawrence has cancer of the prostate and needs oral morphine to relieve his pain. Bruno recently talked to ehospice about what life is like caring for a family member in severe pain.

On the outskirts of Kampala, Mutagubya Bruno lives with his mother and father. A small alleyway leads to a neatly kept garden that is lined with palm trees and freshly hung clothes on a washing line. Bruno breaks the conversation he is having with his mother as a small delegation from Hospice Africa Uganda arrive through a side gate to their house.

In the living room, the three health care professionals sit in a line craning their necks to try and listen to Bruno’s father as he describes his pain. As Bruno’s father speaks, one of the nurses sorts through her case notes. She glances at the previous dosages of oral morphine Bruno’s father has received.

Throughout the conversation Bruno sits on the edge of a worn-out arm chair opposite his father looking on.

Read the full article here >> 

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A visit to Hospice Africa Uganda

This is an article that I wrote for ‘ehospice‘ about my recent visit to a hospice in Kampala.

An incongruous collection of books sit on the shelves next to hand-made jewellery and other bits of bric-a-brac. I stand and flick through the books for a minute enjoying being out of the hot Kampala sun. As I rummage around looking for a bargain the shop assistant, Joy, begins to talk to me about her role at Hospice Africa Uganda.

Joy is one of a dedicated team of volunteers who make it possible for the hospice to carry on offering palliative care services to patients with Cancer and/or HIV/AIDS. Joy, a recently retired surgical nurse, is clearly someone who is driven by the need to help others. When I ask her why she gives up five days a week to help at the hospice she explains:

Read the full article here >>

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The pursuit of happiness

This is an article that I wrote for the Africa edition of ‘ehospice‘ on the overlap between happiness and palliative care. It marks the first ever International Day of Happiness:

“The pursuit of happiness is enshrined into the US Constitution, the subject of countless books and is now even being measured by governments. Policy makers and development agents are now recognising that ‘progress’ should be about increasing human happiness and wellbeing, not just growing the economy at all costs. In light of this, the UN today marks its first ever ‘International Day of Happiness’.

To read the full article click here >>>

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Leo McKinstry should be glad there isn’t a fit for work test for journalists. If there was, he’d fail

This is a guest article from Eugene Grant. Eugene works in the third sector as a public policy advisor on poverty and welfare, and comments regularly on disability and issues of social policy. He blogs at Dead Letter Drop.

Over the last few months we have seen a continuous drip-feed of stories which have promoted a range of inaccurate and generalised accusations against disabled people with long term health conditions. As a result disabled people have faced greater hostility from the public, with many claiming that they have experienced hostility, discrimination and even physical attacks from strangers.”

So starts the National Union of Journalists’ opening statement on media coverage of disabled people.

Last summer, a report strongly criticised some sections of the media for the way in which they reported stories on disability benefits. Specifically, the pejorative language such as the use of terms like ‘work shy’ or ‘scrounger’. The fact that this report came, not from a ‘usual suspect’ disability charity or campaign organisation, but from the respected, cross-party Work and Pensions Select Committee is an indication as to just how serious the problem has become.

The 2012 London Paralympics is a wonderful opportunity to openly celebrate disability and difference. But, a change in our social narrative is badly needed. As I have written before, disability hate crime – which itself is under-reported and often ignored by police – remains a vile and stubborn stain on our social fabric.

This goes not just for adults, but children too; a recent academic study of disabled children found a fifth of them had been attacked physically, sexually, abused emotionally or neglected.

It is worth bearing this all in mind, when you read this spiteful, professionally weak and woefully misleading article, titled, ‘The Paralympics show up a corrupt benefits system’ by Leo McKinstry in the Daily Express. It is not that Mr McKinstry’s view of the welfare state differs to mine, which vexes me most; I fully accept that people will have different views on what the role of the state should be in providing disabled and vulnerable people with financial support. It is the fact that Mr McKinstry’s tendentious argument is based on un-checked, un-picked and inaccurate assumptions; he presents fiction as fact and fact as fiction.

Let the dissection begin.

He says: “One particular target of the activists’ fury is the international firm ATOS, which, under the coalition’s new, more rigorous, benefits regime, carries out assessments to decide if individuals are fit to work and what level of support they might require.”

He is correct in so far as Atos – which, with a note of sad irony, also sponsors the Paralympic games – does conduct the government’s fit-for-work assessment, the WCA. But this is a test that is not fit for purpose. Were it fully functioning it would not have been the subject of several internal and independent reviews; nor would experts like Paul Gregg – who designed some of the welfare-to-work support packages connected to the test – have spoken out against it; nor would almost a third of those decisions that are appealed then be successfully overturned in favour of the claimant. But no matter. Let’s move on.

He writes: “[Benefit] claims have rocketed in recent decades because the system is so lax. In fact, the definition of incapacity has been remorselessly expanded to widen the scope for dependency.”

I presume he means when in 2005 the Disability Discrimination Act was expanded to include conditions like Multiple Sclerosis, cancer and HIV? So, none of these conditions could have adverse impact on a person’s ability to work or give rise to any additional costs? Right. There’s a reason you’re not a doctor, Leo.

He goes on “claims for incapacity benefit are dominated, not by the physically disabled, but by those with mental health problems like depression, stress and behavioural disorders.

Read this again. What he’s suggesting is that people with mental health issues should not be entitled to state support, or that they’re all fakers who should just snap out of it. I myself am not an expert in mental health conditions but I’m pretty sure my colleagues over at Mind and Rethink would know of some people who would take serious issue with this.

He goes on:

“In this chaotic world, it is no surprise, that the total number of people on Disability Living Allowance has gone up from 1.1 milllion in 1992, when the benefit was first introduced, to 3.2 million today…”

See what he’s done here? All he’s done is point out that the caseload for DLA (a vital benefit that acts as a contribution to the extra costs disabled people have to pay as a result of living in our society with an impairment or condition) has increased. The ‘chaotic world’ and ‘no surprise’ bits helps frame it in a way that leaves readers with the impression that the only explanation for this rise in claims for DLA must be because people are fraudulently claiming it. Not because, oh I don’t know, that it’s well established that our society is getting progressively older and disability increases with age? Or that more people with critical needs are surviving into later life? Or that medical advancements are enabling many disabled people to live longer? Or that academic research shows that survival rates of very premature babies are, thankfully, improving, which suggests the number of people born with severe disability has increased. But these things are of no consequence right?

But wait, here comes the best bit. McKinstry writes:

AND the anti-reform campaigners are in denial about the extent of this costly failure. They are fond of telling us that fraud represents just 0.5 per cent of disability claims, but that is a completely bogus figure.

In the courts there is a constant parade of cases involving serious benefits fraud, like the conviction last week of serial cheat Barry Brooks, who grabbed £1.8 million from the taxpayer by pretending to be confined to a wheelchair

First, is the claim that the 0.5% fraud rate for DLA is “bogus…” Funny that, when you consider the figure comes from – wait for it – the Department for Work and Pensions. But more to the point, his only evidence for his claim that a Government statistic is ‘bogus’ is that there have been court cases of benefits fraud brought to his attention – of which he cites just one. And even then he fails to pick a case of DLA fraud. A quick Google search of Barry Brooks shows that he was jailed for fraudulently claiming support from Access to Work, and not DLA.

Mr McKinstry, you can lambast the welfare benefits system all you like. All that I ask is that, as a journalist, you do it accurately and check your line of argument. It’s a shame there isn’t a fit for work test for journalists and social commentators. If there was, you would fail it miserably.

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The silence in Kafr Qaddum

The silence was the most telling part of the whole meeting. The silence was intermittently punctured by the muttering of an occasional word. These words though, when they came, held the weight of a thousand. In this silence I could feel the presence of Waseam Barahem next to me throughout the meeting. Even when others were speaking I was conscious of his silence next to me.

Just over three weeks ago, seventeen year old Waseam was struck in the head by a tear gas canister, nearly died and momentarily lost his ability to speak. Today he is only able to say a few words. His father, Abu Walid remembers the day painfully, “I saw it all, I saw the soldier aim directly at my child”. Accounts vary, but most report the soldiers being fifty to one hundred meters away. All accounts that I have heard agree that the soldiers were firing directly into the crowd. This is something I have seen too many times before and is something that the IDF’s own regulations prohibit.

Waseam was struck directly on his head and suffered large amounts of internal bleeding. He was taken first to Nablus but then to a hospital in Jordan for a life saving operation.

His father described to me the moments after the shooting, “At first I didn’t think it was serious, just some blood on his head. Then the man who works with the ambulance told me it was bad. I wanted to go through the olive trees [to avoid the Israeli flying checkpoint] because I was worried they would try to arrest Waseam [on the way to the hospital]. The man who works with the ambulance though told me we had to go straight through the checkpoint because we didn’t have time to go through the trees. The soldiers also knew it was serious because when we come they open the checkpoint for us. They telephoned ahead to the hospital because they knew every minute counted”.

By any account Waseam is lucky to be alive.

Less than six months ago Mustafa Tamimi died after being struck by a tear gas canister. It is a very real danger that both internationals and Palestinians face when they attend protests.

Regardless of the dangers, the villagers of Kafr Qaddum continue to protest every Friday. I asked Waseam if he was worried about this coming Friday’s demonstration and the possibility of soldiers coming into the village. His answer was short but clear, “next Friday, I will go to the demonstration”. I looked at Waseam trying to read him, to distinguish the macho pride of a seventeen year old boy from what he was really feeling. Did he really not feel any fear after having such a close brush with death?

I turned to his father and asked if he was happy with his son being on the streets during the demonstration. His answer was framed in the context of the impossibility of criticising anyone who is ‘opposing the occupation’. He half shrugged and said “I always knew he would protest”.

I tried once more to frame a question in a way that would allow them to perhaps partly express their feelings. I asked Waseam if he was worried about his friends who go to the front of the demonstration. His silence stretched out for what felt like minutes before he finally replied, “I do worry about my friends”. His gaze fell to the floor and once again we were absorbed into his silence.

The sound of scraping chairs marked the end of our meeting. I left wishing Waseam a full recovery and I asked him to promise to “stay safe”. It felt ridiculous saying these words considering the context. Living in Kafr Qaddum, even if you avoid the weekly demonstration, is anything but “staying safe”.

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The good news story of Aref Sameer Chbieteh

At 25 years of age, he has spent nearly a quarter of his life in prison. Despite his tender age, he has the look of a man who has already seen too much. Sat in a plastic garden chair Aref looks into the near distance as he answers our questions. Surrounding him are his friends and family who have not seen him since his arrest 6 years previous. The room holds a feeling of collective cohesion, together they are strong, but alone I suspect anyone of them could fall apart. Six years ago, the Israeli Defence Force (IDF) took him from his house in the middle of the night and he was charged him with possession of a weapon – a charge that he denies but for which he was found guilty.

I ask Aref about his experiences inside the four different Israeli prisons where he was kept. What he does not say tells a story in itself. His gaunt and clearly underfed body sits slumped in his chair as he struggles through his mind for details that he is not comfortable recalling. He was moved between different prisions after making formal complaints about the conditions in which he was kept. When I tentatively ask him to expand, he simply replies, “they were bad”.

Aref has been a free man for only a few hours when we are ushered to his house. They wanted us to see a ‘good news’ story – a young man returned to his mother. What I heard and saw however was that of a life reduced to distant stares and painful memories.

Aref was detained inside of Israel despite living in the occupied Palestinian territory (oPt), this meant that he was cut off from his family. This is a clear violation of international law.  As Malcolm Smart of Amnesty International said, “International human rights standards and international humanitarian law guarantee every person deprived of liberty the right to humane and dignified conditions of detention…and regular family visits”.  What Aref described to me was a breach of these rights.

His case however is not unique. 6 years is a standard punishment for being caught in possession of a weapon. Equally, Aref was just one of the 5,200 Palestinians from the West Bank – including East Jerusalem – and the  Gaza Strip,  who are currently detained in facilities run by the Israel Prison Service. The vast majority are detained inside Israel. For Aref, years went past where he was not allowed to receive any visitors at all.

I ask him, perhaps through naivety, if he suffered any physical punishment inside prison and for the first time in the meeting a flicker of life passes through his eyes as he snorts before muttering, “of course”.  There is an awkward silence as all we all stare at the floor – I feel embarrassed for asking such a crass question. Aref breaks the silence by explaining that he will never forget what happened to him inside prison. I do not have the nerve or inclination to ask him to expand.

His family around him are buzzing with excitement to see him again after all these years. Before I go, I turn to his mother and ask a question which I hoped would encompass the ‘good news story’ that we had come to see. I ask her what it feels like to have her son back. She looks at me and smiles as a tear forms in the corner of her eye and she says in clear English, “very happy”. My professionalism drops and I meet her smile.

On the way out, Hassan who had arranged the meeting for us moves the conversation onto the 7 other young men who were arrested last night. My heart sinks as I imagine each of their mothers sitting out the years waiting for their sons to be returned. Tomorrow we will try to meet with some of the families of those newly arrested.

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