In recent years, there has been increasing awareness and progress for Paediatric Palliative Care in Malaysia. In September 2012, HRH The Duchess of Cambridge, Kate Middleton visited Hospis Malaysia in Kuala Lumpur and gave her first speech overseas to lend support to the development of paediatric palliative care here in Malaysia. It was also during this highly publicised and auspicious visit, the then Health Minister of Malaysia, YB Dato’ Sri Liow Tiong Lai, launched the National Paediatric Palliative Care Initiative with HRH Raja Zarith Sofiah Binti Almarhum Sultan Idris Shah as the royal patron of this initiative.
Since then, there has been an impetus for paediatricians around the country to develop and improve palliative care for our children. Our Royal patron has been a great advocate in her state of Johor. Palliative care services for children are now more accessible there. Policy makers have been approached to prioritise palliative care in government policies, training and services. There is now a fellowship training programme and our first trainee started in July this year.
Hospis Malaysia has been organising the annual Paediatric Palliative Care Workshop since 2012 to provide education and training for providers in Malaysia and the Asia Pacific region. This year we had 2 experienced advocates and practitioners as our speakers and facilitators. Joan Marston, the executive director of ICPCN is no stranger to Hospis Malaysia. Joan was instrumental in helping us organise our inaugural workshop in 2012. Dr Anthony Herbert is an experienced paediatric palliative care consultant from Royal Children’s Hospital, Brisbane, Australia.
At this year’s paediatric palliative care workshop which ran from 12-14 September 2014 we had 82 participants from all over Malaysia and from around the region (Singapore, Indonesia, Brunei and Hong Kong). There were doctors, nurses, allied health workers, volunteers and a medical student. It was a diverse group in terms of experience in paediatrics and in palliative care. This enriched discussions and enhanced learning especially during the small group-work sessions. Other than formal lectures, there were videos of the stories of our patients and families as well as a personal sharing by a father of a current patient. It was a humbling experience for the participants to hear first hand from the father, his trials and tribulations.
We hope the workshop will encourage and strengthen the participants’ resolve to enhance awareness and change practices at their workplace. Children and families do not need to suffer needlessly because of healthcare professionals’ ignorance.