Physical Health South Africa Project #39506

Promoting Paediatric Pain Management

by International Children's Palliative Care Network

Project Report | Jul 1, 2023
Our June Update

By Julia Downing | Project Leader

Thank you all for your ongoing support to promote paediatric pain management. We have been delighted that Lizzie has started working with us and is continuing the work on the best practice pain guidelines that we are working on for the WHO. We will be sending out a survey to individuals from as many countries as possible in the next few weeks and hope that they will let us know about what medications they can access which will then inform the guidelines. We are also in the process of reviewing guidelines from around the world so that we can see what has already been done, and the information that we can draw from. It is important that we build on what has been done and not reinvent the wheel. If you have existing pain guidelines please do share them with us so that we can include them in the review. For example, we heard in the Netherlands recently about the guidelines that they have been developing and have included these in our review. It does not matter what language they are in please send them to us anyway.

We have continued to provide training on children’s palliative care around the world, including in countries such as Serbia, Italy and Moldova. An important part of this included that of pain assessment and management and it has been interesting hearing what people are doing with very limited resources. It reminds us that we have learnt to become resourceful and how important it is to share what we are doing with others. We are excietd to be speaking at a workshop on palliative care at the Internatioanl Council of Nurses Annual Conference next week. We have also been talking to the APPM in the UK with regards the guidelines they are developing, the formulary and the Basic Symptom Control in Paediatric Palliative Care publication and how we can make these more accessible and available.

Our elearning programmes, including on pain assessment and management continues to be accessed by people around the world with over 9,500 people having accessed our courses from 191 countries.

A couple of months ago ICPCN launched our new logo and website. We are excited by the our fresh new look and hope that you will be able to find your way around the website – please do look at it and you can read more about the Pain App on our website - www.icpcn.org. You might also be interested in reading our ICPCN impact report to get a feel of some of the work that we have been doing – you can also find that on our website.

Thank you again for your continued support.

Links:

Our website

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Mar 2, 2023
An update from ICPCN

By Julia Downing | Project Leader

Training in Ghana

Thank you all for your ongoing support to promote paediatric pain management. We have been delighted to be able to continue teaching on pain management in children’s palliative care since our last report. We ran an online training on children’s palliative for clinicians in Iraq for the WHO. It was a great experience and we were able to discuss some of the challenges in assessing and managing pain in children, particularly within contexts such as in Iraq. We are now discussing options for ongoing support for the team in Iraq. Other aspects of pain management we are working on is with regards to best practice guidelines and potential priorities for research in pain management.

It is great to be part of a global network committed to children’s palliative care, some of whom we met when we were in India recently at the Indian Association of Palliative Care congress (IAPCON 23). Prior to the conference we helped organise a pre-conference workshop on children’s palliative care in children with non-oncological conditions, with the management of pain and other symptoms for children with neurological conditions, complex heart disease and HIV/AIDS. One of the great things about these workshops is how much we learn from each other and it was a great opportunity of sharing and so good to be back in India after the pandemic. We also had the opportunity to do some training in Ghana in January and to advocate for access to childrens palliative care and pain management.

Our elearning programmes, including the one on pain management continue to be accessed by people around the world with over 8,000 people having accessed our courses from 191 countries. We continue to develop the courses, which are now available in a wide range of languages.

Alongside this, ICPCN are in the process of rebranding and launching a new website, which we hope to do in the next few weeks, so please do look out for thus, and information about our pain app can be found on the new website.

Thank you again for your continued support.

Training in India

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Nov 2, 2022
Project Update November 2022

By Julia Downing | Project Leader

Attending the training at St Jude's

Thank you all for your ongoing support to promote paediatric pain management. We have been delighted to be able to continue teaching on pain management in children’s palliative care since our last report. As we mentioned, we attended the EPEC Paediatric Become an EPEC-Pediatrics Trainer Conference and EPEC-Paediatrics Professional Development Workshop in San Francisco in July, so that are able to support the running of the EPEC courses alongside St Jude’s and others form the EPEC team. This was a great opportunity to attend the programme and now means that ICPCN are able to support the delivery of EPEC Pediatric courses.

A combined EPEC (Education in Palliative and End-of-Life Care) Paediatrics End User and Leadership Workshop was held prior to the 7th International African Palliative Care Conference in Kampala, Uganda. The workshop was held at the Mestil Hotel Kampala and was attended by 55 participants from Benin, Botswana, Burkina Faso, Cameroon, Ghana, Kenya, Malawi, Nigeria, Senegal, South Africa, South Sudan, Tanzania, Uganda, Zambia, and Zimbabwe. The workshop was run by the African Palliative Care Association (APCA), International Children’s Palliative Care Network (ICPCN) and the St Jude Global Palliative Care Program, and was funded by St Jude Children’s Research Hospital. 34 participants undertook the end-user EPEC workshop including doctors, clinical officers, nurses, pharmacists and social workers. The majority (21) were from Uganda, from a range of organisations including: Kawempe Home Care, the Uganda Heart Institute, the Uganda Cancer Institute, Kirrudu National Referral Hospital, St Francis Hospital Nsambya, Mulago National Referral Hospital, Yumbe Regional Referral Hospital, Mildmay Uganda, Mbarara University, and the International Rescue Committee. A further 21 participants undertook the leadership workshop which was run concurrently with the EPEC workshop. The groups participated in several combined sessions as well. The workshop went well and we are in the process of writing up the report for publication.

Both Julia and Alex then attended another EPEC Programme and Paediatric Palliative Care Oncology Symposium at St Jude’s in Memphis, with Julia supporting the facilitation of the programme and Alex undertaking the course. It was exciting to be with 43 participants from around the world, to share experiences and to learn from each other. Training has continued on paediatric palliative care, including pain management for participants from Uganda, and also Iraq, along with participants from around the world attending our series of monthly webinars, and undertaking our elearning programmes.

There continue to be many new and exciting opportunities ahead of us and we look forward to collaborating with many of you as we seek to improve access to children’s palliative care and pain management around the world.

Participants in Uganda

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