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Message from our Chief Executive
 Dear friends and colleagues,
How time flies! As I write this letter to you from my second home in Uganda, I’m acutely aware of how much of the year has already slipped away. I’m also happy at the thought of how soon many of us will all be meeting up with one another at our conference in Durban in one month's time. But more about the conference later.
Over the past month I have had the privilege of being involved in the launch of the Lancet Commission Report in Miami – unfortunately I was unable to make it to the event at the last minute but ICPCN was represented by Zipporah Ali and Wendy Gómez García. I have also been in Durban with the team getting ready for the conference and it was great to catch up on all of the preparations – the local team are doing amazing work so thank you to all of them.
We were thrilled to provide the very first training of an enthusiastic group of Mozambican health professionals in the basic principles of children’s palliative care last month. Despite the need for interpreters, the short course we provided, led by ICPCN’s Busi Nkosi and Alex Daniels, was well received by the group. We look forward to building on this initial work in the months and years to come to assist in the development of children’s palliative care in Mozambique.
As could be expected, myself and the rest of the ICPCN staff are presently focused on ensuring our upcoming conference will be every bit as successful as the previous two in Mumbai and Buenos Aires. It is going to be a truly multi-cultural experience for our delegates as we have already received registrations from over 50 countries! In addition, we are so honoured to have secured Dr MR Rajagopal as a plenary speaker and would like to congratulate him on his recent nomination for a Nobel Peace Prize. We also look forward to hosting at the conference the very first showing of the film ‘Hippocratic – 18 ways to shake the world” about his life’s work. With so many more great speakers, a stimulating selection of pre-conference workshops and some amazing events planned, it is still not too late to register to attend the conference.
Please do visit our conference website to find out more and to get your registration in.
Prof. Julia Downing
Chief Executive
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Children’s Palliative Care arrives in Mozambique
 A partnership between Mozambique Palliative Care Association (MOPCA), African Palliative Care Association (APCA), True Colours Trust (TCT) and ICPCN has resulted in the training in children’s palliative care of 19 Mozambican health professionals. The training took place from 19 – 23 March 2018. Alex Daniels, Education Officer for ICPCN, filed the following report.
The first ICPCN introductory course on Children’s Palliative Care commenced on a hot, sticky Monday morning in Maputo. Eleven nurses and eight paediatricians attended the training that was held in the Unidade da Dor (Pain Unit) on the sprawling grounds of Maputo General Hospital. The training was led by Busi Nkosi and Alex Daniels from ICPCN with guest lecturer support from Dr Angelina Dias (MOPCA) and Professor Joao Schwalbach (Comite Nacional De Bioetica Para A Saude).
A range of topics including communication with children and families, pain assessment and management, ethics, child development and play, grief and bereavement were presented.
Read more
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Paediatric Palliative care in resource-poor countries
Children, an international open access journal of paediatrics published monthly online by MDPI has recently published a paper focusing on the great need for paediatric palliative care in resource poor countries. The paper was written by ICPCN staff members, Julia Downing, Sue Boucher, Busi Nkosi and Alex Daniels.
The authors write that "there is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services."
The paper looks at the challenges that have been identified to the development of palliative care for children globally including acess to treatment, access to medications, lack of trained health and social care professionals and a lack of awareness and policies to support its development.
Suggested strategies to overcome these challenges include using advocacy and raising public awareness, provision of education, improved access to medications and promotion of the implementation of services and research.
The paper also looks at examples where paediatric palliative care has been provided in resource-poor settings highlighting the key element of an effective programme.
To read the full text or to download the paper, go to: http://www.mdpi.com/2227-9067/5/2/27
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Inspiration, Innovation, Integration – get it all at #ICPCNCON3
With an exciting and diverse line-up of world class speakers and a programme designed to provide inspiration and information for all members of the multi-disciplinary team, time is running out for you to book your spot at the 3rd ICPCN Conference to take place in Durban, South Africa.
Speakers
Conference speakers have been confirmed. You won’t want to miss out on this once in a lifetime opportunity to be inspired and informed by the impressive line-up of invited plenary speakers at the conference. These include:
- Dr Marie-Charlotte Bouësseau Adviser at the Dept. of Service Delivery and Safety at the WHO
- Dr MR Rajagopal 2018 Nobel Peace Prize nominee and founder chairman of Pallium India
- Sister Frances Dominica (OBE) Founder of Helen House, the very first children’s hospice
- Dr Satbir Jassal (MBE) Chair and editor of the APPM Master Formulary and editor of the Rainbows Children’s Hospice Symptom Control Manual
Visit the conference website for information on all the invited speakers and to view the latest draft version of the conference programme.
Workshops
A full day of pre-conference workshops have been finalised for the conference and can be booked separately or along with your registration. These workshops draw on a pool of incredible expertise to bring you the most innovative ideas and allow you the chance to interact with presenters.
Events
The organisers have lined up a number of exciting events for delegates attending the 3rd ICPCN Conference. These include:
- A Welcome Reception hosted by the city of Durban and held at the famous uShaka Marine World on the Durban beachfront. Speakers at this event include the city’s mayor, the conference chair and Sister Frances Dominica.
- Film premiere The conference will be host to the premiere showing of the life story of Nobel Peace Prize nominee, Dr M R Rajagopal in the film HIPPOCRATIC 18 Experiments in Gently Shaking the World
- A Gala Dinner which will take place at the stunning Southern Sun Elangeni Hotel. Delegates will be encouraged to wear traditional attire to this event.
Meet the expert sessions
The conference will hold a number of early morning 50 minute ‘meet the experts’ sessions where delegates can learn from the ‘best of the best’ and will be given the opportunity to ask questions and enter into important discussions on the topics being presented.
Read more
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Upcoming Conferences and Events
The ICPCN website has a regularly updated Calendar of Events listing events related to children's palliative care taking place around the world. Contact us to have your event listed on this calendar at no cost.
- 30 May - 2 June 3rd ICPCN Conference, Durban, South Africa
- 9 -15 June 11th Annul Pediatric Pain Master Class, Minnesota, USA
- 23 - 27 July AIDS 2018 Amsterdam, The Netherlands
- 12 - 16 September IASP WOrld Congress on Pain, Boston, USA
- 2 - 5 October 22 International Congress on Palliative Care, Montreal, Canada
- 24 - 27 October 4th Global Gathering Maruzza Congress on Paediatric Palliative Care, Rome, Italy
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New survey reveals isolation felt by families
The study was carried out by children’s palliative care charity Together for Short Lives, who have published the findings in the report “Hidden Lives: tackling the social exclusion of families caring for a seriously ill child.” The report tackles the social exclusion of families caring for a child with a serious condition, showing that a child’s diagnosis can have negative effects on families’ relationships with other members of the family, friends, neighbours and their wider community. Most of the families who took part in the survey said that they often felt isolated and their social life had suffered considerably because of their child’s condition. The reasons cited for not going out socially ranged from exhaustion to a fear of being away from their child.
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Dr Raj nominated for Nobel Peace Prize
Dr Rajagopal has made it his life’s work to treat people experiencing high levels of pain and suffering from disease and trauma in his home state of Kerala, India, and far beyond. In addition, he has focused on overcoming the barriers to the delivery of effective pain relief and humane end-of-life care. Dr Raj’s work is not glamorous, and he is not in it for the fame. However finally, his extraordinary work and activism is being recognised. His nomination for the 2018 Nobel Peace Prize recognises that the impact of his work in reducing human suffering through the relief of pain is comparable to that achieved by the elimination of large military conflicts. In a country of 1.25 billion people, or one sixth of the world’s population, it’s easy to see why the impact of Dr Raj’s work has the potential to be enormous.
Read more
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Huyaam advocates for palliative care
Huyaam has a rare life-limiting condition called pseduo-achondroplasia and hypermobility syndrome. Among other painful symptoms, this causes her joints to dislocate without warning and leaves her in chronic, intense pain. Despite her health challenges, Huyaam is a tireless advocate for hospice and palliative care as part of Universal Health Coverage for all who need it. Huyaam says: “Palliative care gave me hope when there was none. My palliative care team help me to manage my pain and symptoms and this allows me to go to university. They ensure that I am medically fit, psychologically and spiritually supported and able to attend my lectures. My specialists and physiotherapists ensure that my chronic pain is well managed and that I am doing my daily exercises accordingly to my weekly workout regimes.”
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