The Piliyandala Plan
The uniqueness of the Piliyandala Plan is based on the fact that it arose out of a series of interventions in the community by a group of residents, where in, Action preceded the Plan. It is also significant that it arose from the grass roots to connect up with the national organisation rather than follow the usual top down approach. This community project was initiated by a group of like-minded, multidisciplinary, multi-sectoral residents, who identified the unmet need for palliative care in Piliyndala. We have realized the need for ownership of the Pliyandala Plan by all segments of the community in Piliyandala. Therefore our role will be one of facilitation. Our approach would be to follow the direction of other community groups in the area and to respond to their palliative care needs. From the work done so far we have identified four groups of stake holders in the community. These stakeholders have also been identified in other parts of the world. They are -
- a) Compassionate community
- b) Coping Carers
- c) Patient Partners
- d) The Authorities
Compassionate community
The concept of a compassionate community is not new and it has given rise to a world-wide movement. Like all
community movements it is, for the community, by the community and of the community. It asserts that the
community has resources which can be used to care for itself. Community is comprised of Neighbors, religious
organizations, schools, service providers such as Sarvodaya, Lions, Rotarians etc., business communities,
commercial establishments village committees, pensioner’s associations, sports clubs, prisons and hospitals. In our
work we have experienced the coming together of neighbors around patients and their families. Compassion is
key. Patients who are dying slowly need enormous psychological support. We have discovered a culture of denial
that creates a barrier between the patient and virtually the rest of the universe. Crucial emotional support is hard
to provide to the patient in this loneliest time when life is coming to an end.
Coping Carers
Family, volunteer and primary carers, who provide care in the community also suffer. They too deserve the
attention of the compassionate community. The main objective of The Compassionate Community Piliyandala.
Compassionate Community Piliyandala has been to facilitate End of life home care. Principally to make dying more dignified
and tolerable for the patient but also to relieve the strain and burden of care giving on the carers. What we are
realizing in very real terms is that death is certainly not the end of palliative care. Bereavement continues. Those
who are left behind are devastated and sometimes made destitute. Our work will have to go on.
Patient Partners
This is perhaps a relatively newer approach. Patients with a life threatening disease see themselves or are seen by
others as if they are on death row. That is not the full picture. There is life before death. As the saying goes they
too have “many promises to keep and many miles to go”. Patients can be uplifted and engaged by coaching to
become partners in their care. Sometimes patients themselves can become coaches for other patients and even
for carers. This component needs more work in Piliyandala.
The Authorities
Local government officials, state and private health professionals undoubtedly play a crucial role in the provision
of palliative care in the community. The Piliyandala Branch is gradually building partnerships with them.
In conclusion the activities of the Compassionate Community Piliyandala will be focused on mobilizing the compassionate
community, empowering coping carers, uplifting patients to become partners in their care and working with the
authorities.
