This is from last week’s Stroud News and Journal about my up-coming charity run aiming to raise money and awareness of the African Palliative Care Association.
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Filed under Gloucestershire, Health, Media, Uganda
It is important to state from the start, I don’t like running and nor am I any good at it. You would be right then to comment that it seems just a smidgen odd to decide to run 21 kilometres, out of my own free will, however good a cause it is for.
Well let me assure you that it is for an exceptionally good cause. I am fundraising for the African Palliative Care Association (APCA). APCA has been my employer now for the last 18 months. I am not too proud to say though that when I started working for them I knew little about palliative care – let alone palliative care in Africa.
I guess I was a little naive but I never expected the raw reality that I was met with on day one of my job. Literally millions of people suffering the most debilitating of pain because they don’t even have access to basic elements of palliative care such as access to pain medication.
I started to grasp the magnitude of what this actually meant when I went with staff from Hospice Africa Uganda on home visits. I met patients and their family who benefited from having access to oral morphine and who had grappled back a sense of normality in their life.
I remember meeting Bruno on the outskirts of Kampala. I remember how he had said to me that “You cannot be happy to see your dad suffering”. But most of all, I remember how deeply sincere he was when he thanked the hospice staff for coming, for caring and for bringing his monthly does or oral morphine.
This realisation though of how important palliative care services are only truly sunk in when I met someone who, like most Ugandans, did not have access to this service.
That person asked me not to publish her name and I can understand why. She spent 6 months nursing her mother who died of cancer as the rest of the family refused to let her seek medical help because of the financial implications. She watched her mother everyday lie in bed unable to move because of the pain she was in. With tears in her eyes she said to me one of the most powerful sentences that I have ever heard: “When I die, I don’t want to go like that.”
This is what APCA campaigns for. To ensure that no-one in Africa dies without access to palliative care.
Over the last 18 months of working for APCA I have almost every day had a realisation of some sort. Sometimes it is still about how dire the situation is in many parts of Africa. Other times it is about these faceless numbers impact on people lives. But increasingly these realisations come through meeting the varied and wonderful volunteers and staff who working to change all this.
Because of a small band of committed people there are now policies, projects and pain killers popping up all over Africa. The staff and volunteers I have met have at times humbled me but more often than not, they have inspired me.
In South Africa the national association is supporting the training of traditional healers in palliative care. In Uganda they have been training journalists and editors. In Zambia they are engaging the HIV AIDS community. All people who used to see themselves as separate to palliative care all now working to ensure everyone has access to these services.
When the palliative care community reaches out – others cannot help but to respond seeking out what they can do, how they can contribute to helping to end this perfectly preventable humanitarian disaster of untreated pain.
It is a natural response that I too felt.
But what can I, as a non-medical professional, contribute? And that’s when it struck me that even if I was already over stretched professionally, I could always do something that anyone of us could do…run a half marathon to raise money and awareness for APCA’s work.
And so, not only do I want you, if you can afford to, donate to APCA through my ‘Just Giving’ page. I would also love you to help me raise awareness of palliative care in Africa. Can you share this article on facebook, visit APCA’s website, or share this video?
Together I know we can do this – there are already hundreds of talented wonderful people out there doing the most amazing work. It might not be obvious how you can help but believe me, just by reading this article you have taken your first step.
There is a long-way to go and my half-marathon is really just the first few steps but together we can make a real difference.
You don’t have to believe me, just go and listen to patients both with and without access to palliative care and you will soon see the difference it can make.
“without the political will to change, vulnerable people remain deprived of humane treatment and an end to life free of pain.”
This is the conclusion of the Channel 4 documentary, ‘Africa’s Drug Scandal’ that I helped to coordinate through my work – the African Palliative Care Association. The documentary is due to be broadcast on Channel 4 in the UK at 7:35pm on Friday 30th May 2014.
I am posting about it here because it strikes me as a rare opportunity to get a large number of people thinking about an issue that is incredibly important to me.
The documentary focuses in on the issue of access to pain medications – predominantly oral morphine. Having access to such medication is something that most people in the UK take for granted. If you were diagnosed with a life-threatening illness tomorrow you would assume that you would be given the appropriate pain control that would firstly enable you to live your life to the full but secondly, would enable you to die a peaceful death.
For the majority of people in the world this is simply not the case. Indeed, as ehospice reported last November, due to a lack of access to inexpensive and effective essential opioids more than 4 billion people, over half the world population, live in countries where regulatory barriers leave cancer patients suffering excruciating pain.
In countries like Senegal where the documentary is set the situation is dire. Last October Human Rights Watch found that the government only imports about one kilogram of morphine each year – enough to treat about 200 cancer patients when there is an estimated need in the tens of thousands of patients!
And so, this is one of the corner stones of my organisations work – to lobby, offer training, educate and empower people to ensure that everyone has access to the pain medications they need.
It might seem like an abstract issue, but as Krishnan Guru-Murthy, the renowned Channel 4 reporter finds out, once you see a patient suffering in unbearable but perfectly treatable pain you instantly understand the importance of the issue.
Guru-Murthy concludes the situation amounts to “needless cruelty”.
I find it impossible to see how anyone, when faced with this reality could conclude anything different.
The programme can be watched live online here, on 4OD for 30 days after broadcast here, and you can read a preview in the Radio Times here.
Let me know what you think of it in the comments below.
I occasionally link here bits of my work with the African Palliative Care Association that I think could be interesting to a wider audience.
Here is a short Al Jazeera report on access to morphine in Uganda that I helped coordinate. It serves as a nice introduction to the subject that leaves millions suffering from perfectly preventable pain.
The film was shown on repeat last week. On Thursday they had our Executive Director, Dr Emmanuel Luyirika, on to speak about the subject. You can watch the interview here:
In Uganda, a regional leader in terms of medical morphine availability, only one in ten people who need medical morphine have access to it!
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At the moment millions of Africans suffer terrible pain because they don’t have access to really basic pain medication that many people in Europe take for granted. If you feel like I do that no-one should be left to die in pain then please consider:
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).
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.
A 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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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.
Filed under Health
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.
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.
This is an article that I wrote for the African edition of ehospice news.
“The African Palliative Care Association (APCA), in collaboration with The Open Society Initiative for Eastern Africa (OSIEA), the Open Society Institute (OSI), the Ministry of Health (MoH) in Uganda and the Palliative Care Association of Uganda (PCAU), has launched a series of publications on legal and human rights issues in palliative care.
Filed under Health, Human rights, Uganda
This is an article that I wrote for ehospice on a new study outlining the cost of living with HIV in Africa.
The African Palliative Care Association (APCA) and Measure Evaluation have launched a new study on the cost of HIV care, treatment and support in Africa.
The study, based in Uganda, found that the average adult with HIV pays out $98 annually on indirect costs such as transportation and time lost to receive care, treatment and support. In addition to this the study estimated that the annual cost of delivering anti-retroviral therapy (ART) was $281 per patient.
The study will have a direct impact on the 1.2 million Ugandans currently living with HIV…
Hynd's Blog 