19 September 2019
The mini-exhibition is up and running at the 6th African Palliative Care conference in Kigali. The films by participants from John Taylor Hospice are being watched by delegates from all over Africa and beyond.
I had the opportunity to talk about the project, its intent and how the power of film can be harnessed, ethically, for advocacy, empowerment and training purposes. Among the many remarkable people I got to talk to as a result, there was a steady theme of the need for similar projects in African countries. Inspiring people. Extreme need. Compelling stuff.
17 September 2019
Last week, I joined one of the teams from RHHJ – Rays of Hope Hospice Jinja, Uganda, on a field visit to patients. It put everything – from the celebration of the advances in treatment in Kampala that I’d heard about at the conference there, to the tragedy of shortened lives in the UK and other similar countries – into perspective. Please read to the end of this post…
I’d travelled to Jinja, to spend the day at the hospice by invitation of the extraordinary woman behind it, Dr Margrethe Junker, a Danish Doctor who I’d met at the Cancer and Palliative Care conference in Kampala. During their early morning team meeting, I was given the opportunity to talk about the Life:Moving project, at John Taylor Hospice, and the value of film for giving voice to patients’ experience of terminal conditions. As Margrethe told me in Kampala: her patients desperately need their voices to be heard.
The fantastic team at Rays of Hope hospice delivers home-based palliative care to extremely poor people in the region. They provide this care in the form of medication, principally pain relief, and psycho-social support. Together these help their patients to die more comfortably, and for them and their families to experience a good death, if you like. This will sound familiar.
But the team provides palliative care because this is the only care available to the majority of these patients. Most of these patients should not be dying of their conditions. They have very treatable, and often even curable conditions, like cervical and breast cancer. We saw patients with HIV, who the hospice supplied with ARVs (anti-retrovirals). But for all kinds of reasons, these sometimes weren’t taken or weren’t affective. And then there were all those in these communities with conditions who the hospice didn’t know about, who were ignoring their symptoms or who had heard that treatment was prohibitively expensive and so didn’t do anything about it, or who just felt, or were told, that they were cursed. And then there are those who live out of reach of a hospice team.
Uganda is one of the poorest countries in the world. There is no universal healthcare. Rays of Hope is one of many hospices and projects dependent on donations. If you would like to support their work, our spare pounds/dollars etc can go an extremely long way. Please visit their website: http://www.raysofhopehospicejinja.org/donate
11 September 2019
Yesterday I had the pleasure to teach a group of Medical Students here at University of Global Health Equity, in Butaro in Rwanda. We explored the fantasies about illness and dying that appear in the mainstream via a very fruitful comparison of the trailer of ‘Bucket List’ and of ‘Wit’. I then told them about the Life: Moving project with John Taylor Hospice, and screened our films.
Like my students at Film and Television Studies, University of Warwick, these young people were some of the most engaged and engaging that you could meet. There is something incredibly special – my favourite thing and privilege I think – about getting to teach outside of my discipline.
They were, apparently, ‘blown away’ by the class, according to Dr Marissa Mika, Head of Humanities and Social Sciences here. All they know is ‘biology, physics and chemistry’ she said. These honest accounts of the patients’ experiences provided powerful insight into some of what lies ahead in their chosen professions. But how much better, how much more important, it would be for them also to see films by Rwandan or East Africans patients. These films, as far as I am aware at the moment, don’t exist.
5 September 2019
It’s always thrilling to arrive in a new country: windows open as you speed along a highway away from the airport. Vaguely terrifying on the Ugandan roads at night but the taxi driver, wrists covered in plastic bangles declaring a love of Jesus, got me to Kampala in one piece.
Exhibition is now set up for the start of the conference in Kampala, today. The 2nd Uganda Conference on Cancer and Palliative Care is a big deal – we just had to stand for the Prime Minister’s entrance. I’m hoping some of the many delegates will watch the films during the breaks. So far just one of the young performers from ‘3C’: Children Caring about Cancer’ is taking a look at the films we made with participants from John Taylor Hospice. Probably about the same age as Reem who figures prominently in the film about her father Yussef. That I think is why she chose to watch that film first.