Paediatric palliative care patients live with fear, stress and uncertainty. Our psychotherapists assess and support the emotional needs of the children in our care. ANGSANAcare provides play, art and music therapy to these children with the aim of facilitating enjoyment and peace in their last days. Studies prove that these therapies not only allow children to express themselves more freely, but also successfully aids in the reduction of physical pain. Play, art and music therapies help them to focus their minds elsewhere whilst simultaneously creating an outlet for their fragile emotions.
With limited resources and the burden of care, the patient’s family dynamics can suffer. Due to physical and emotional fatigue, the marriages of parents often breakdown, or siblings can be left to fend for themselves. The patient feels responsible and bears a lot of guilt and grief. ANGSANAcare’s services extend to the entire family. Through counselling and psychotherapy, we aim to help ease their collective suffering.
We endeavour to fulfill a dream or wish for a patient ocassionally. This programme may require us to take action quickly as the wish is often voiced in the patient’s last days. ‘The Magic Bubble’ programme has received a variety of requests: a family meal out; throwing a birthday party; a haircut; a wig; a plane trip or being taken on a family day out. This programme is designed to give the patient and their family a little fun, laughter and joy in their final days together.
ANGSANAcare is a fully registered not-for-profit Malaysian Society created as a support service to palliative care for underprivileged paediatric patients and their families in Government hospitals in Malaysia. Our services are free of charge. We depend completely on public and corporate funding and are not affiliated to any political or religious groups
In 2011, Dr Loh Ee Chin of UMMC identified a need for a type of special care for her palliative care patients who were suffering enormous pain and extreme stress. In Singapore and in many developed countries, doctors were tapping into the expertise of art, play and music therapies that were not often used in Malaysia. Dr. Loh was determined to introduce such complementary support for the children in her care. She approached a music therapist in Kuala Lumpur who was eager to volunteer her services. The benefits of this type of therapy were immediately evident. She discovered that the children were becoming less fearful and, in turn, experiencing less pain. A sense of calm and internal wellbeing was restored to them. Singing or playing with musical instruments with the therapist allowed children to experience joy; songs and poetry helped them to express their innermost fears for the future.
The next step was to secure funding for this pilot programme. Ms. Chung, herself a cancer survivor, generously offered her financial support; for three years she paid for a music therapist at University Malaya medical Centre.
In 2014, Dr. Loh trained a younger paediatrician, Dr. Lee Chee Chan, in Palliative Care. He too was drawn to music therapy, recognising its benefits as a complementary component to his medical care. The doctors together decided to expand these services to more families. This would now be beyond the capacity of a few individuals so Ms Chung approached Datin Catherine Lai who already ran another charity and had her hands full. Catherine, having mulled over the idea for a couple of months, invited her friend, Ria Thomas; someone she knew would make a serious commitment to the initiative, to the next meeting with the doctors. To her complete surprise, Ria, who thought she was just attending a meeting, was asked to become the Chairperson of this new and yet unnamed entity.
Ria Thomas founded the new Society, ANGSANAcare. She picked a committee of dedicated members whose comprehensive vision was to offer much more than expressive arts therapy alone. The ‘Magic Bubble’ programme was introduced and the support network was expanded to include group sessions for children in art and music. The enthusiasm and hard work of this team, led to the inauguration and registration of ANGSANAcare, a new Malaysian Society, on the 3rd March 2015.
Testimony from Dr Eni Juraidah (Consultant Paediatric Haematologist/oncologist IPHKL)
When Dr Lee Chee Chan first approached me about Angsana, my first thoughts were -
‘Oh no! not another one.’
‘Ok, is it going to be another one of those?’
Children with any illness will attract a lot of sympathy, especially so if the illness is cancer. So it is not surprising that KK3 gets a lot of visitors, some on a one-off basis, others make it their annual event. And they are always welcomed.
Treatment of cancer is not all about medication. There are other aspects that need attention. A lot of our patients are from the lower socio-economic group, hence we need to find some way of relieving their financial burden although the cost of treatment is heavily subsidised by MOH.
Due to complications, some patients need to stay for long periods. Being away from family and friends, they become depressed. Parents too are stressed although for different reasons. As we increase the age of admission (currently up to 15 years ), we see quite a number of adolescents, who even without an illness, are already grappling with the emotional changes that adolescents go through. These are challenging problems, which we, as medical practitioners are not equipped to deal with and for which we in turn need help.
Now, when I go down for ward rounds on certain days, I meet Sharon. I see Carly sitting with a patient doing art. They come quietly, go about their work and leave just as quietly. But the effect of what they do leaves an impression on those that they were in contact with. Puan Tang is a gem. I met her in the corridor one day and started talking about a patient who is going through a very difficult period. He is an adolescent whose disease was not responding and we have come to the end where treatment is concerned. We are aware that there are issues on the home front but just how bad we don’t know. I am amazed at what she managed to draw from this boy, things that he probably never said to anyone else. His refusal to see her again is not because she failed, but because she succeeded. He is afraid of what else she may get him to admit to.
So now, whenever we identify a patient who may have problems coping, it’s “ Ok, please refer to Puan Tang ”.Or “When is Puan Tang coming, she needs to see this one.” She ‘s one of the best things we’ve had in a long time.
Please excuse my initial scepticism. A lot of people have their hearts in the right place where NGO work is concerned but not all are able to see things through. Some are very enthusiastic, starting off with a bang but ending after a short time with a fizzle. Some are not as altruistic as we perceived them to be. But I am more than happy to be proved wrong in this case.
“They are doing a great job” –Dr. Teh KH, oncologist KK3
“They are OK, tak ada masalah. Parents suka” . –Sister Rozitah, ward sister
So, to Ria and team, thank you for all that you have done. Keep up the good work! We want you to be around for as long as possible. Together, let us make a difference.
Dr. Eni Juraida Abdul Rahman
Consultant Paediatric Haematologist/oncologist
Ward KK3, Institut Pediatrik, HKL
Hospital Kuala Lumpur
17 February 2016
Testimony from Dr Khoo Teik Beng (Consultant Paediatrician, Paediatric Neurologist, IPHKL)
“I’m Dr Khoo, I’m a paediatrician working with the Paediatric Institute, Hospital Kuala Lumpur. I’m glad that ANGSANAcare has been supporting us in providing Palliative care for ill children; especially those who require emotional or psychological support through their series of activities including play, music and art therapy.
I really appreciate this effort because many of our parents in the hospital are often very distressed when the child is at the later stage of their disease, be it cancer – many of them have childhood cancer and some of them have incurable genetic or neurological disorders. Their presence has certainly lightened the emotional distress and psychological turmoil for many of these families and parents that have to take care of the child, in the hospital especially.
We are looking forward to collaborate further, in future, so that this group of children and their families are supported even if we are unable to cure them. We should still aim to always improving their quality of life through various means.”
Words taken from the speech given by Dr Khoo in ANGSANAcare’s short film
Testimony from Dr Teh Kok Hoi (Paediatric-Haemato Oncologist, IPHKL)
28th January 2016
I should be thanking yourself and your team for a job well done!
I must say that our patients and families are so much more supported mentally, spiritually & socially with the presence of the ANGSANAcare volunteer & team members. The donated books, comics & magazines were much appreciated by our parents and children.
I must thank Ms Thang, the Clinical Psychologist for providing excellent support to our parents and patients.
Reena Clare is outstanding!!! Her art work with the children constantly line the walls of our cubicles. Previously, the walls were only lined with Ultraman dolls or toy soldiers, that our children diligently arranged and re-arranged due to pure boredom. Screaming children were able to better express themselves through pictures and artwork that they so enjoy in hospital now! It also distracts them from the physical & psychological pain that many of them silently suffer. She has become an “Art Teacher” icon in our ward, that many parents and family look forward to!
Carly and Sharon spend quality time entertaining the younger kids! With our Astro channels out of action for a month now, their lovely voices have been a good change from the occasional cries of babies.
And of course, many others in ANGSANAcare like yourself, work behind the scene and make the continuation of care a possibility!
My greatest appreciation & heartfelt gratitude to your team!
And I’m sure the families of my patients feel the same way too!
Although I would love to attend the dinner, I’m afraid I will not be able to make it due to prior personal and family commitments.
Sorry and thank you once again!
Dr Teh Kok Hoi
Hospital Kuala Lumpur
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We need a bank of volunteers to support all of our services.
Right now we especially need people to join our "A Little Wish" programme.
We need people who can be called upon at short notice to support activities like a trip to a Museum, Aquarium or a similar attraction. Quick action is required because often the patient does not have long to live or the doctors have given approval for them to be taken out within the next couple of days. These outings are very rewarding for the children, families and the volunteers as they give immense joy and create important memories for all.
If you would like to be included in our volunteer bank, please download/complete the volunteer application form and email it to firstname.lastname@example.org