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The dawn of the next stage in developing services for Bangladeshi children dying from cancer
I have just returned from one of the most powerful experiences of my nursing life, which restored my faith in my vocation as a nurse and helped me put into perspective what happens here in the UK when it comes to the delivery of children’s health care, and more importantly children’s palliative care services. It also highlighted for me the importance of an umbrella association like ACT.
No short piece like this can do any kind of justice to the poverty and suffering that I came across. This short trip was a lived experience and one which will stay with me for the rest of my life and cannot be fully put into words. Alongside this poverty and suffering there was an amazing humanity and generosity of spirit in all the people that I came across. I cannot remember seeing any acts of anger by parents, children or professionals. There was, however, a lot of frustration by the professionals at not being able to delver a service for their dying children.
I was invited to go to Bangladesh with Dr Nicky Harris (Medical Director of Children’s Hospice South West), and the trip was funded by the International Union Against Cancer, based in Geneva (They fund projects throughout the World). While we were in Bangladesh we were hosted by the ASHIC Foundation. This was set up some years ago by the parents of a young man called Ashic, who had died 14 years ago here in the UK, while under the care of GOS.
We were asked to go and deliver two weeks training for medical, nursing and social workers on the theory and practice of palliative care, with a focus on children with cancer. Our visit included opportunities to see the local facilities in hospitals, two ASHIC- funded units, and to see children dying at home. We were also asked to write a report on our findings and how children’s palliative care services may best be developed in Bangladesh.
ASHIC has setup a small palliative care unit (PCU) where families visiting Dhaka can stay if their child is dying or having treatment in one of the city hospitals. They also have a ‘shelter’ where families on active treatment can stay. Sometimes the children have to travel for days to get to the hospital. I had some of my most powerful encounters while visiting these two places. They were places run on love and humanity.
The PCU and the shelter are good models of care and could be developed with more beds and a team of community nurses to support children and families at home. The PCU model is very similar to the children’s hospice service in the UK, apart from the fact that its admissions are restricted to children with cancer. It provides symptom management, practical, emotional, psychological and spiritual support for families in a child-centred environment, and is like an oasis of calm in the chaos of failing oncology treatment and progressive disease, which is very helpful for the children and the parents. It also teaches the families how to care for their child at home.
The ASHIC Shelter provides free accommodation for families who need to stay in Dhaka whilst their children are receiving treatment, and in a child-friendly environment. Since opening it has contributed to a significant reduction in drop-out rates on treatment, with increased chances of long-term survival as a result.
The visits we made to the local hospital in Dhaka & Sylhet enabled us to have further discussions with professionals and the opportunity to see patients jointly and put the theories of palliative care provision into practice within hospital settings. This was often the most valuable and fulfilling time and was greatly appreciated by people who had attended the training sessions. One young doctor (see picture 1) had about five patients he wanted us to see and offer advice on their ongoing management. These visits were professionally more useful than the formal training, both for them and for us.
The five full days of structured training we offered cover the following:
Introduction to Children’s Palliative Care
Communication
Care Pathways for Dying Children
Symptom Control Overview
Symptom Control, specifics
Soul Pain
Discussion
We felt this curriculum offered a useful preliminary introduction to the principles of good children’s palliative care. What was of most interest was the talk on Soul Pain. Participants seemed to be captivated by this presentation. When I give this paper in the UK, where we are far more secular or embarrassed by or spirituality, I get the feeling that some people think I am a bit mad. But Bangladeshi health practitioners have a very strong spiritual reliance on God and are challenged to make some kind of sense of childhood cancer and what to say to families.
I have called this short article Sunrise over Bangladesh, after taking an early morning river trip just before leaving, watching the sun rise over the city. (see picture 2) I was struck that this is now the time for the people of Bangladesh to have a palliative care service for all their dying children and not only those with cancer.
This visit made us more fully appreciate the complexities of establishing palliative care services in a developing country. It enabled us to share our experience and expertise with locals who can hopefully implement and improve practice when it comes to children’s palliative care at a local and a national level. I greatly appreciate this opportunity, and hope that this is just the first step in a developing programme which will improve the outcome for all children and families who are suffering and dying, and not only from childhood cancer.
There is much we can do from here in supporting them develop such a service and I would be very keen to direct you in the right direction...I am also happy to send you our full report, which makes much better reading than this very short piece...
One of the main things they need is for professionals to go there and continue the training we started. They are clear about what they don’t need and that is for professionals to come to Britain to train. If they do, they very rarely return to practice in the public run hospitals.
Brother Francis, OSB, RGN, RSCN, B.Sc (Hons)
Clinical Nurse Specialist in Paediatric Oncology & Palliative Care, The Children’s Hospital, Brighton
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