3rd ICPCN Conference wraps up in Durban
A time of vital learning, networking and energy, the Third ICPCN conference, held from 30 May to 2 June 2018 was a huge success. Close to 250 delegates from 43 countries met in Durban, South Africa, to share information and be inspired by colleagues from around the world working in all aspects of children's palliative care.
One highlight was hearing 2018 Nobel Peace Prize Nominee, Dr MR Rajagopal, speak, and then seeing his life's work featured in the first South African screening of the film "Hippocratic: 18 Experiments in Gently Shaking the World" which is immensely moving and inspiring. You can watch the film's trailer here and order it online.
Writing about the film, the producers say" "Dr Raj is a small man with a big dream: a pain-free India. His mission is to bring ethical practice to modern medicine through whole person care. To achieve this he must provide universal access to essential, and heavily restricted, pain medicines.
Hence, this spiritual leader of ethical medicine now shares the story of his life’s work. Reflecting on effecting change and relieving unnecessary human suffering in a country of 1.25 billion people, almost one sixth of the world’s population"
Watch the SABC National News interview with Prof Julia Downing (Chief Executive, ICPCN) and Dr MR Rajagopal here and read more about the conference on the ICPCN website.
Conference speakers include psychologists, doctors, nurses and therapists of all kinds. Below we share some of the presentations by Busi Nkosi, Director of Advocacy for ICPCN, and Kerry Jones, lecturer in End-of-Life Care at the Open University, UK.
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Prof Julia Downing, Chief Executive of ICPCN and Dr M R Rajagopal take a moment to chat after the screening of the film 'Hippocratic: 18 Experiments in Gently Shaking the World'
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The Desperate Need for Children's Palliative Care
Busi Nkosi, Director of Advocacy, ICPCN
Within her presentation, Busi pointed out the following key facts:
- Globally, more than 21 million children need palliative care
- More than 8 million of these need specialised palliative care
- Global provision is less than 1% of the need.
- Many countries in the developing world have little or no access to palliative care.
In South Africa, an estimated 801 155 children need palliative care, and only around 4.7% of those children receive it.
Looking at the ICPCN world map estimating the levels of CPC worldwide, we can see how the more developed countries have a better access to children's palliative care services. The darkest green colour shows the most comprehensive offering of palliative care, and white shows the countries where there are no known children's palliative care provision.
In the context of Africa only, South Africa has greater access to services compared to the rest of Africa but we are still only reaching less than 5% of children who need it.
The Lancet Commission reveals that at least 2.5 million children die every year while needing palliative care. In low income countries, childhood deaths account for more than 30% of all deaths associated with severe health-related suffering.
ICPCN and other organisations are training people in palliative care globally, and we are thrilled to reveal that PatchSA will be starting a training programme that will integrate with existing palliative care providers, to help increase training possibilities.
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PatchSA's new nurse trainer, Tracy Rawlins
Tracy says:
I am a professional nurse and midwife who married a farmer way back in 1988. We were too far out of town for me to work in a hospital, so I filled my days with part time work at clinics, doctor’s surgeries, running a private well baby clinic, offering birth education classes, facilitating children’s playball, being the school nurse and teaching at a preschool for 5 years, and then in between doing home care visits to those diagnosed with terminal illnesses (which I still do).
In 2011 after being employed by the local hospice as the clinical manager I made the decision to study palliative care and completed the Short Course in PC for professional nurses (SCPNC) at South Coast Hospice. Sadly, our little hospice had to close its doors due to lack of funding. In the time I had been with the hospice I realized I had the passion for teaching and empowering caregivers with knowledge and skills and took the next step and completed my postgraduate diploma in nursing education through Potchefstroom university. I became the the travelling tutor for the Hospice Palliative are Association (HPCA) and facilitated the SCPNC distance programme in Mpumalanga for 3 years. In 2016 I coordinated the SCPNC for Hospice nationally but sadly at the end of that year my position was made redundant, however HPCA offered me a partial bursary to study the Postgraduate Diploma in Palliative Medicine at UCT in 2017.
My experience in adult palliative care had laid a wonderful foundation of knowledge and skills but my heart and passion has always been in working with babies and children. Through the years I had identified a gap and need to offer more specialized care for babies and children with life-limiting and life- threatening conditions. I therefore, without hesitation, chose to complete the paediatric sub-specialty of the diploma. In the year I met Michelle Meiring (our lecturer) and all the other wonderful people working for Paedspal, PatchSA and Umduduzi and knew by the end of the course that my journey in children’s palliative care was just beginning. Thanks to a grant from Discovery, I have now been employed by PatchSA as training coordinator from 1 May 2018.
My role in this 3 year project will be to review paediatric palliative care training material nationally (and globally) and then in consultation with various paediatric organisations and professionals we will develop standardized training material and from year 2 roll out a variety of training workshops (1 day, 3 day and 5 day) to institutions offering paediatric care services. In partnership with BetterCare, we will also design a self study will be facilitated by a group leader at facility level.
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Do you want to learn more about children's palliative care? Look at the ICPCN's e-learning programme.
http://www.icpcn.org/icpcns-elearning-programme/
Available in 8 languages!
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Compassionate Clinical Practice: Supporting men following perinatal death
Notes taken from the presentation of Kerry Jones, lecturer on End-of-Life Care at the Open University in the UK at the 3rd ICPCN Conference, Durban, 2018
Some statistics
There are approximately 7 million perinatal deaths each year i.e in the period just before or just after birth. The impact on the parents is huge, causing anxiety, depression and even post-traumatic stress disorder. Often, fathers seem to have fewer symptoms of stress than the mothers, but does that mean that their experience is less traumatic?
More involved
Fathers are far more involved with their children than they used to be, and many support their wives at all stages of pregnancy, but in a difficult situation, health professionals don't involved them as much. Men can end up having a host of problems related to the traumatic loss of a child, including substance abuse, debt, employment difficulties- all perhaps relating to the suppression of grief. Society tends to expect men to be strong and support their wives, when they too, are grieving and need support. Perinatal loss can be 'invisible' to those who look at a man - they do not see someone who was pregnant and now there is no child. At work, he looks the same as he always did.
All grief guidelines should include support and involvement for the men, such as allowing the father and the mother to hold the baby after death, not just the mother. Their role is not only that of supporter and comforter but also of someone who has suffered the same great loss as the mother and who needs support and comfort himself.
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Upcoming Events
4th Global Gathering Maruzza Congress on Paediatric Palliative Care
October 24 - October 27 Rome, Italy
The goals of this International meeting are to transfer experiences and encourage knowledge sharing, to divulge fresh perspectives and innovative solutions. Moreover, to foster new synergies across disciplines and geographical regions aimed at promoting improved palliative care delivery to children with serious illness and their families worldwide.
Details: October 24- October 27
Website: http://www.childrenpalliativecarecongress.org/congress-2018/
Organizer: Maruzza Foundation
Phone: +39.06.45582593
Email: segreteria@maruzza.org
and.... coming up in 2019....
APCA (African Palliative Care Association) Conference 2019
www.africanpalliativecare.org
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