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With a champion, anything is possible

- Odette Spruyt

I hope you will let me tell you a story about Lakshadweep, a group of islands in the Arabian sea, off the coast of Kerala, India.

A teacher of art at a government girls’ college in Kavaratti, one of the 10 inhabited islands of Lakshadweep, leads a grassroots palliative care project, Thanal. Starting alone, he responded to what he saw and felt was lacking in his island, home care relief for the people. On his bike, with a bag containing a meagre assortment of medical items and a heart full of compassion, he rode from home to home, caring for the ill and their families in whatever way he could. His first patient was an elderly man, abandoned by his family, soaked in excrement and dirt, lying alone in his home. From this beginning, one man dedicated to making a difference, one man without government or medical support, has been able to create a thriving palliative care program, extending across 5 of the 10 islands, primarily volunteer-based, which is now supported by health officials, government officials and other community leaders. His reputation is large, as is his heart and the hearts of the many volunteers he has inspired and offered a means of engagement in building a proud and self-sustaining community of action. There is next to no security, financial, staffing, nor external supports. It is a labour of love, a family more than a society where each member is able to contribute from their skills and learn new skills. It is a social movement, also promoting organic farming, cleaning up the island, exercise and diet, positive leadership and being responsible for your neighbours, literally. Sounds too good to be true, and yet, it is happening, 3 years in the making, big dreams, daily action.

When such roots take hold, let’s provide all the support and guidance and encouragement we can to help this tree to grow.

There is so much for us to learn from Lakshadweep.

We are reminded, strongly reminded, that providing palliative care is within the province of all of us. Anyone who has eyes to see and courage to act, can make a difference. Moulana started his work without a label. He then found out about Pallium India, an NGO working in Kerala, the state closest to Lakshadweep. He then found a name, palliative care, for what he was already doing. A doctor, Dr Ali Azher, and a nurse, Mr Ahammed Khafi , saw what he was doing and joined him. They attended the PI 6 week training and are now fully involved in palliative care service delivery and training of volunteers, working as volunteers after their normal workday is over. They provide 24 hour on call cover and frequently respond to requests for help. There are many others, such as Rafiq who provides accounting and administrative expertise as well as direct care, Sayed Koya assists with programs and functions with his organisational skills and energy and Mansoor, another nurse, is always ready to lend a hand.

We are reminded that it is in the home where most of the care takes place. Those of us who are privileged to work in higher income countries know only too well the loss of capacity of our communities to care. Not so in Lakshadweep, where patients are cared for at home, definitely as a duty within the framework of this island with a population who are entirely Muslim, but also as a loving service.

We are reminded that palliative care is a philosophy of care that extends beyond walls, beyond diagnoses, beyond professional labels and hierarchies, beyond medicines, equipment, services, beyond ourselves. Yes, many of the home care patients visited are bedridden living with chronic illness, subarachnoid or CVA- induced hemiplegia, bronchiectasis, encephalopathy with spasticity. But in a setting without home care services of any type, this is the need. The team dress pressure ulcers, check blood pressures, urinary catheters, Ryles’s tubes, tracheostomy tubes, contractures , hygiene and diet. They encourage and support the carers, mostly women, who are providing most of the hands-on care. Their visits reduce the loneliness of patients and carers alike.

Through Hamrahi, Australian palliative care professionals will continue to visit and support the development of services across the 10 islands of Lakshadweep, remote island communities which are being linked by the service of more than 75 volunteers, coordinated and motivated by the vision of one man who began this gigantic work on a simple bike.

Moulana APLI

Moulana and a volunteer

Project Focus

As some of you may be aware, in early 2016 the Asia Pacific Hospice Palliative Care Network (APHN) held four ‘APHN Dialogs’, in which clinicians across the Asia Pacific region could link in through Skype to attend a webinar. The following webinars took place:

- A discussion of palliative care service development in the Asia Pacific region, presented by Odette Spruyt
- Pain control in palliative care by Yoshiyuki Kizawa from Kobe, Japan
- Management of the cancer wound by Edward Poon from Singapore
- Bereavement care by Jun-Hua Lee from Taiwan

These sessions were well received and provided a valuable opportunity for clinicians in different countries to learn from an expert in that field and also to share their own professional experiences. Unfortunately, not all countries in the region have reliable internet coverage or sufficient bandwidth so some attendees were unable to join the meetings. In response to this, in recent months APLI has been looking at a new educational initiative in partnership with APHN.

Project Focus aims to set up online discussion groups between palliative care clinicians in specific countries in the Asia Pacific region and APLI mentors. Some nascent palliative care centres struggle with isolation, limited practitioner experience and variable institutional support. In effect, Project Focus would work towards similar objectives to Project Hamrahi: to improve the capacity for best practice patient care in the local setting and to reduce the isolation of palliative care providers in emergent services.

APLI is therefore calling for expressions of interest for mentors to volunteer their services to help support our regional partners. Project Focus would particularly suit clinicians who might otherwise find it difficult to travel overseas for mentoring work, as the contact will be online using a small group discussion format on the ‘Slack’ communication platform. APHN has already identified local clinicians in two separate services in remote and regional Indonesia who would like to be partnered with APLI mentors. In addition to this, there has also been some interest from doctors in Vietnam, Brunei and Nepal whose learning needs were unable to be supported by the APHN Dialogs.

Although the exact process will be flexible, it is proposed that education would begin with case presentations from the local APHN clinicians. These would then serve as a springboard for the APLI mentors to explain current evidence based practice recommendations. The subsequent discussion would then take into account local factors such as medication availability, local resources, staffing and other factors such that a viable and culturally appropriate management plan can be formulated.

I hope that you will share our excitement for this initiative. Project Hamrahi has demonstrated the value of teams of mentors made up of both doctors and nurses working together with local Indian clinicians over a sustained period of time. Project Focus has the potential to broaden the scope of such partnerships to other countries and so I invite you to contact me via chairman@apli.net.au with a short biography and reflection on why you would wish to work as a mentor.

- Anil Tandon

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Your donations to APLI help in the following ways:

assist with training of doctors and nurses in palliative care practice in developing nations

support nurses to travel and teach as part of Project Hamrahi

help with purchase of critical site resources such as essential equipment and supplies,  medicines and educational materials