Features
Patient-centred care and CKDu
Some observations on the occasion of World Kidney Day
By Prof. M.W. Amarasiri de Silva
(Inaugural Fellow, International Society of Nephrology 2018, Adjunct Professor at the University of Pittsburgh, USA, and Professor Emeritus, University of Peradeniya)
Today is World Kidney Day, and this year the principal focus is on patient-centred care for people living with kidney disease. This theme highlights the increasing recognition of the need to identify and address patients’ priorities, values, and goals in order to advance the research, practice, and policy designed to improve the quality of life of people suffering from chronic kidney disease. Regardless of the type of kidney disease or the approach to treatment adopted, patients want to live well, retain their social place, maintain some semblance of normality, and have a sense of control over their health and wellbeing.
A patient-centred approach is one where the patients are treated as social individuals and enabled to take control of and improve their health. Thus, they become active participants in their care. Their biology becomes secondary in this process. Members of patients’ families and communities can continue to focus on them as people, rather than on their illness or disability. Support should concentrate on achieving the patients’ aspirations and be tailored to their needs and unique circumstances.
A patient-centred approach to health requires building public policy, creating supportive environments, facilitating community action, and developing and improving patients’ skills and knowledge of disease management. Overall, any such programme requires a complete reorientation of the treatment system. Those who work directly with patients at the District Secretariat (DS) Division level – the public health inspectors, public health nurses, nurses, hospital attendants, community workers, health educators, rural development officers, childcare officers, and others – should be directed towards a patient-centred approach, and trained in good communication skills and to address patient needs effectively. A patient-centred approach should address those with chronic disease of unknown aetiology (CKDu) within their family and community, and become an integral part of everyday life in the family and community. If CKDu sufferers are uprooted from their social setting and placed in a clinic-based environment, the treatment system becomes an artificial one with no link to the patient’s cultural milieu. Such treatment systems do not work satisfactorily.
In western societies, community health workers, working in communities, facilitate this process by assisting the medical specialists in hospitals. They visit the homes of patients and help their families to overcome problems through counselling. In Sri Lanka, such a link between the community/family and the hospital, focusing on the patient, is missing. Especially with regards to CKDu patients, establishing a connection between the community and the hospital is crucial. Such a link would help to alleviate the stigma attached to CKDu patients in the community and the neglect and isolation that many have to endure. Visits by hospital staff and paramedics to patients in their homes can improve the understanding of hospital staff about how patients live at home, what problems do they face at home and in the community. It would improve the commitment of patients towards their treatment. This would also improve their compliance with their medical regimen. A change in the treatment procedures from a hospital-based system to a patient-centred one is necessary, as the existing approach has had little impact in assisting CKDu patients in addressing their grievances and improving their quality of life, or in reducing the incidence of and death rates from the disease.
In a patient-centred approach to the treatment and care of CKDu patients, essential elements are community engagement and empowerment. Educating the patients and their families on disease risk factors and treatments is a prerequisite. In Sri Lanka, government programmes have invested in developing people’s understanding of the risk factors for CKDu but have not paid much attention to improving people’s knowledge of treatments and testing procedures. Therefore, most people in CKDu-affected areas have knowledge of the causes of CKDu, but have limited understanding of treatments. As a result, patients are not able to make an informed decision on the type of treatment that they should undergo or to discuss the subject with their medical professionals. They blindly accept (or reject) the type of treatment recommended by the doctors.
In Sri Lanka, people’s knowledge of treatments for kidney disease is fragmentary. Their knowledge of things like blood transfusion is limited and is very hospital centred. Experience in other countries shows that patients on a home therapy or haemodialysis at home were more satisfied than those with in-centre haemodialysis. In Sri Lanka, haemodialysis at home has not been promoted.
Most CKDu patients undergo harrowing experiences in their communities and at home. They report a substantial drop in their quality of life. Their illness means that they cannot draw water from the dug well to wash or use the toilets with squatting pans. They are advised to install commodes in their toilets, but most CKDu patients cannot afford to do this. Many say that they cannot cultivate their rice paddy land, so they don’t get any income from agriculture. Although they are paid Rs. 5,000 by the government each month, that is not adequate for a family of five people to live an ordinary life. As CKDu patients find it difficult to use public transport, they have to hire a vehicle at a significant cost each time they visit the clinic. In many families, children have dropped out of school because their parents cannot afford to provide for their education. About 15% of CKDu patients in the villages live alone, with, in many cases, their wives having left them and gone to the Middle East for employment. Family members say that the CKDu patients have become demanding. Many CKDu patients and their family members display signs of depression and uneasiness.
Those patients on dialysis need to attend the clinic once every three days. Many patients do not attend the clinics as required due to financial difficulties. Each visit to the clinic requires Rs. 2,000 to 3,000 for transportation, which is beyond many patients’ means, and therefore, after a few visits, they drop out of the dialysis programme. A patient told me, ‘the doctor told me that I have to get a kidney transplant. I am on the waiting list like many thousands of patients. I have no great hopes anyway. I undergo blood transfusion. I was asked to come to the clinic every third day, but I don’t have money to pay for a vehicle every time. I mortgaged my two acres of rice paddy two years ago, and the money has been spent on my treatment and food for the family’.
A patient-centred approach should highlight how to improve the quality of life of CKDu patients and families. The quality of life for patients should become the dominant preoccupation in health promotion in CKDu communities. Essential health professionals, such as health educators, public health inspectors, and public health midwives, should take the lead in educating the CKDu-affected population about the management of patients at home and in their communities. They should discuss how behavioural changes could improve health, for example identifying the adverse effects of smoking and chewing tobacco. Referring to her husband, a CKDu patient, a woman said, ‘My husband smokes a lot. He smokes a bundle of beedi a day. One bundle of beedi is Rs. 100 and contains 25 beedis. He smokes them at night, early in the morning, and at work… However much I tell him to, he doesn’t stop’. Many patients do not regularly take the medication given by the clinic or attend their appointments as scheduled.
People surveyed during the course of my research were not very aware of the difference between CKD and CKDu. Most CKDu patients identified having diabetes and high blood pressure as risk factors for CKDu. They are risk factors for CKD, and CKDu develops due to other factors in the absence of diabetes and hypertension. Most end-stage patients did not know what treatment options were available for them, and preferred to stay and die at home. Compared to affluent families in the CKDu-affected communities, the paddy farmers who own less than two acres of rice paddy are less educated and lacking in CKDu-related health knowledge.
Any community empowerment programme, focusing on CKDu patients, should discuss the basics of kidney function, CKDu testing procedures, and the management of CKDu at home and in the community.
Recommendations:
A reorientation of the hospital-centred approach to a patient-centred one. This requires training local officers at the DS Division level. A programme for this has to be identified and discussed at ministerial level with the participation of Community Based Organisations in the area, patients, carers, medical and paramedical practitioners. A sociologist/anthropologist working in the area of community empowerment and participation would also be an asset.
The introduction of home dialysis should be considered as a measure to enhance the community/family role in CKDu disease management. Home dialysis needs a cleanroom, which is hard to find in farmer households in CKDu-endemic areas. Therefore, for each Grama Niladhari Division, the government should consider building a spacious room in a central location and constructing all the facilities for patients to come and undergo dialysis. A community member should be trained to handle the procedures.
To effectively address the increasing incidence of CKDu in the epidemic regions in Sri Lanka, a well-developed intervention and a community education programme, focusing on behavioural change, should be aimed at lower socioeconomic groups.
The government should strengthen the patient-centred approach to treatment and care. Although medical education programmes in the universities prioritize medical professionals’ role in treatment, patient-centred approaches are seldom discussed. The universities should focus on CKDu-affected districts when selecting villages for students’ intervention and training on a patient-centred approach. Departments of Community Medicine should take the lead in this direction.
A programme to address depression among CKDu patients, needs to be established. DS Division level officers appointed for community work should be trained to handle the psychological issues afflicting CKDu patients. The education and counselling of end-stage kidney patients are essential as many such people have refused to undergo dialysis or kidney transplants.
The basics of kidney function and the risk factors for CKDu should be taught to school pupils in areas where CKDu is endemic.
Features
Relief without recovery
The escalating conflict in the Middle East is of such magnitude, with loss of life, destruction of cities, and global energy shortages, that it is diverting attention worldwide and in Sri Lanka, from other serious problems. Barely four months ago Sri Lanka experienced a cyclone of epic proportions that caused torrential rains, accompanied by floods and landslides. The immediate displacement exceeded one million people, though the number of deaths was about 640, with around 200 others reported missing. The visual images of entire towns and villages being inundated, with some swept away by floodwaters, evoked an overwhelming humanitarian response from the general population.
When the crisis of displacement was at its height there was a concerted public response. People set up emergency kitchens and volunteer clean up teams fanned out to make flooded homes inhabitable again. Religious institutions, civil society organisations and local communities worked together to assist the displaced. For a brief period the country witnessed a powerful demonstration of social solidarity. The scale of the devastation prompted the government to offer generous aid packages. These included assistance for the rebuilding of damaged houses, support for building new houses, grants for clean up operations and rent payments to displaced families. Welfare centres were also set up for those unable to find temporary housing.
The government also appointed a Presidential Task Force to lead post-cyclone rebuilding efforts. The mandate of the Task Force is to coordinate post-disaster response mechanisms, streamline institutional efforts and ensure the effective implementation of rebuilding programmes in the aftermath of the cyclone. The body comprises a high-level team, led by the Prime Minister, and including cabinet ministers, deputy ministers, provincial-level officials, senior public servants, representing key state institutions, and civil society representatives. It was envisaged that the Task Force would function as the central coordinating authority, working with government agencies and other stakeholders to accelerate recovery initiatives and restore essential services in affected regions.
Demotivated Service
However, four months later a visit to one of the worst of the cyclone affected areas to meet with affected families from five villages revealed that they remained stranded and in a state of limbo. Most of these people had suffered terribly from the cyclone. Some had lost their homes. A few had lost family members. Many had been informed that the land on which they lived had become unsafe and that they would need to relocate. Most of them had received the promised money for clean up and some had received rent payments for two months. However, little had happened beyond this. The longer term process of rebuilding houses, securing land and restoring livelihoods has barely begun. As a result, families who had already endured the trauma of disaster, now face prolonged uncertainty about their future. It seems that once again the promises made by the political leadership has not reached the ground.
A government officer explained that the public service was highly demotivated. According to him, many officials felt that they had too much work piled upon them with too little resources to do much about it. They also believed that they were underpaid for the work they were expected to carry out. In fact, there had even been a call by public officials specially assigned to cyclone relief work to go on strike due to complaints about their conditions of work. This government official appreciated the government leadership’s commitment to non corruption. But he noted the irony that this had also contributed to a demotivation of the public service. This was on the unjustifiable basis that approving and implementing projects more quickly requires an incentive system.
Whether or not this explanation fully captures the situation, it points to an issue that the government needs to address. Disaster recovery requires a proactive public administration. Officials need to reach out to affected communities, provide clear information and help them navigate the complex procedures required to access assistance. At the consultation with cyclone victims this was precisely the concern that people raised. They said that government officers were not proactive in reaching out to them. Many felt they had little engagement with the state and that the government officers did not come to them. This suggests that the government system at the community level could be supported by non-governmental organisations that have the capacity and experience of working with communities at the grassroots.
In situations such as this the government needs to think about ways of motivating public officials to do more rather than less. It needs to identify legitimate incentives that reward initiative and performance. These could include special allowances for those working in disaster affected areas, recognition and promotion for officers who successfully complete relief and reconstruction work, and the provision of additional staff and logistical support so that the workload is manageable. Clear targets and deadlines, with support from the non-governmental sector, can also encourage officials to act more proactively. When government officers feel supported and recognised for the extra effort required, they are more likely to engage actively with affected communities and ensure that assistance reaches those who need it most.
Political Solutions
Under the prevailing circumstances, however, the cyclone victims do not know what to do. The government needs to act on this without further delay. Government policy states that families can receive financial assistance of up to Rs 5 million to build new houses if they have identified the land on which they wish to build. But there is little freehold land available in many of the affected areas. As a result, people cannot show government officials the land they plan to buy and, therefore, cannot access the government’s promised funds. The government needs to address this issue by providing a list of available places for resettlement, both within and outside the area they live in. However, another finding at the meeting was that many cyclone victims whose lands have been declared unsafe do not wish to leave them. Even those who have been told that their land is unstable feel more comfortable remaining where they have lived for many years. Relocating to an unfamiliar area is not an easy decision.
Another problem the victims face is the difficulty of obtaining the documents necessary to receive compensation. Families with missing members cannot prove that their loved ones are no longer alive. Without official confirmation they cannot access property rights or benefits that would normally pass to surviving family members. These are problems that Sri Lanka has faced before in the context of the three decade long internal war. It has set up new legal mechanisms such as the provision of certificates of absence validated by the Office on Missing Persons (OMP) in place of death certificates when individuals remain missing for long periods. The government also needs to be sensitive to the fact that people who are farmers cannot be settled anywhere. Farming is not possible in every location. Access to suitable land and water is essential if farmers are to rebuild their livelihoods. Relocation programmes that fail to take these realities into account risk creating new psychological and economic hardships.
The message from the consultation with cyclone victims is that the government needs to talk more and engage more directly with affected communities. At the same time the political leadership at the highest levels need to resolve the problems that government officers on the ground cannot solve. Issues relating to land availability, legal documentation and livelihood restoration require policy decisions at higher levels. The challenge to the government to address these issues in the context of the Iran war and possible global catastrophe will require a special commitment. Demonstrating that Sri Lanka is a society that considers the wellbeing of all its citizens to be a priority will require not only financial assistance but also a motivated public service and proactive political leadership that reaches out to those still waiting to rebuild their lives.
by Jehan Perera
Features
Supporting Victims: The missing link in combating ragging
A recent panel discussion at the University of Peradeniya examined the implications of the Supreme Court’s judgement on ragging, in which the Court recognised that preventing ragging requires not only criminal penalties imposed after an incident occurs but also systems and processes within universities that enable victims to speak up and receive support. Bringing together perspectives from law, university administration, psychology and students, the discussion sought to understand why ragging continues to persist in Sri Lankan universities despite the existence of legal prohibitions. While the discussion covered legal and institutional dimensions, one theme emerged clearly: addressing ragging requires more than laws and disciplinary rules. It requires institutions that are capable of supporting victims.
Sri Lanka enacted the Prohibition of Ragging and Other Forms of Violence in Educational Institutions Act No. 20 of 1998 following several tragic incidents in universities, during the 1990s. Among the most widely remembered is the death of engineering student S. Varapragash at the University of Peradeniya in 1997. Incidents such as this shocked the country and revealed the consequences of allowing violent forms of student hierarchy to persist. The 1998 Act marked an important legal intervention by recognising ragging as a criminal offence. The law introduced severe penalties for individuals found guilty of engaging in ragging or other forms of violence in educational institutions, including fines and imprisonment.
Despite the existence of this law for nearly three decades, prosecutions under the Act have been extremely rare. Incidents continue to surface across universities although most are not reported. The incidents that do reach university administrations are dealt with internally through disciplinary procedures rather than through the criminal justice system. This suggests that the problem does not lie solely in the absence of legal provisions but also in the ability of victims to come forward and pursue complaints.
The tragic reminders; the cases of Varapragash and Pasindu Hirushan
Varapragash, a first-year engineering student at the University of Peradeniya, was forced by senior students to perform extreme physical exercises as part of ragging, resulting in severe internal injuries and acute renal failure that ultimately led to his death. In 2022, the courts upheld the conviction of one of the perpetrators for abduction and murder. The case illustrates not only the brutality of ragging but also how long and difficult the path to justice can be for victims and their families. Even when victims speak about their experiences, they may not always disclose the full extent of what they have endured. In the case of Varapragash, the judgement records that the victim told his father that he was asked to do dips and sit-ups. Varapragash’s father had testified that it appeared his son was not revealing the exact details of what he had to endure due to shame.
More than two decades after the death of Varapragash, the tragedy of ragging continues. The 2025 Supreme Court judgement arose from the case of Pasindu Hirushan, a 21-year-old student of the University of Sri Jayewardenepura, who sustained devastating head injuries at a fresher’s party, in March 2020, after a tyre sent down the stairs by senior students struck him. He became immobile, was placed on life support, and returned home only months later. If the Varapragash case exposed the deadly consequences of ragging in the 1990s, the Pasindu Hirushan case demonstrates that universities are still failing to prevent serious violence, decades after the enactment of the 1998 Act. It was against this background of continuing institutional failure that the Supreme Court issued its Orders of Court in 2025. Among the key mechanisms emphasised by the judgement is the establishment of Victim Support Committees within universities.
Why do victims need support?
Ragging in universities can take many forms, including verbal humiliation, physical abuse, emotional intimidation and, in some instances, sexual harassment. While all forms of ragging can have serious consequences, incidents involving sexual harassment often present additional barriers for victims who wish to come forward. Victims may hesitate to complain due to weak institutional mechanisms, fear of retaliation, or uncertainty about whether their experiences will be taken seriously. In many cases, those who speak out are confronted with questions that shift attention away from the alleged misconduct and onto their own behaviour: why did s/he continue the conversation?; why did s/he not simply disengage, if the harassment occurred as claimed?; why did s/he remain in the environment?; or did his/her actions somehow encourage the accused’s behaviour? Such responses illustrate how easily victims can be subjected to a second layer of scrutiny when they attempt to report incidents. When individuals anticipate disbelief, minimisation or blame, silence may appear safer than disclosure. In such circumstances, the presence of a trusted institutional body, capable of providing guidance, protection and support, become critically important, highlighting the need for effective Victim Support Committees within universities.
What Victim Support Committees must do
As expected by the Supreme Court, an effective Victim Support Committee should function as a trusted institutional mechanism that places the safety and dignity of victims at the centre of its work. The committee must provide a safe and confidential point of contact through which victims can report incidents of ragging without fear of intimidation or retaliation. It should assist victims in understanding and pursuing available complaint procedures, while also ensuring their immediate protection where there is a risk of continued harassment. Recognising the psychological harm ragging may cause, the committee should facilitate access to counselling and emotional support services. At a practical level, it should also help victims document incidents, record statements, and preserve evidence that may be necessary for disciplinary or legal proceedings. The committee must coordinate with university authorities to ensure that complaints are addressed promptly and responsibly, while maintaining strict confidentiality to protect the identity and well-being of those who come forward. Beyond responding to individual cases, Victim Support Committees should also contribute to broader awareness and prevention efforts, within universities, helping to create an environment where ragging is actively discouraged and students feel safe to report incidents. Without such support, the process of pursuing justice can become overwhelming for individuals who are already dealing with the emotional impact of abuse.
Making Victim Support Committees work
According to the Orders of Court, these committees should include representatives from the academic and non-academic staff, a qualified counsellor and/or clinical psychologist, an independent person, from outside the institution, with experience in law enforcement, health, or social services, and not more than three final-year students, with unblemished academic and disciplinary records, appointed for fixed terms. Further, universities must ensure that committees consist of individuals who possess both expertise and genuine commitment in areas such as student welfare, psychology, gender studies, human rights and law enforcement, in line with the spirit of the Supreme Court’s directions, rather than consisting largely of ex officio positions. If treated as routine administrative positions, rather than responsibilities requiring specialised knowledge, sensitivity and empathy, these committees risk becoming symbolic rather than functional.
Greater transparency in the appointment process could strengthen the credibility of these committees. Universities could invite expressions of interest from individuals with relevant expertise and demonstrated commitment to supporting victims. Such an approach would help ensure that the committees benefit from the knowledge and dedication of those best equipped to fulfil this role.
The Supreme Court judgement also introduces an important safeguard by giving the University Grants Commission (UGC) the authority to appoint members to university-level Victim Support Committees. If exercised with integrity, this provision could help ensure that these committees operate with greater independence. It may also help address a challenge that sometimes arises within institutions, where individuals, with relevant expertise, or strong commitment to addressing issues, such as violence, harassment or student welfare, may not always be included in institutional mechanisms due to internal administrative preferences. External oversight by the UGC could, therefore, create opportunities for such individuals to contribute meaningfully to Victim Support Committees and strengthen their effectiveness.
Ultimately, the success of the recent judgement will depend not only on the directives it issued, the number of committees universities establish, or the number of meetings they convene, or other box-checking exercises, but on how sincerely those directives are implemented and the trust these committees inspire among students and staff. Laws can prohibit ragging, but they cannot by themselves create environments in which victims feel safe to speak. That responsibility lies with institutions. When universities create systems that listen to victims, support them and treat their experiences with seriousness, universities will become places where dignity and learning can coexist.
(Udari Abeyasinghe is attached to the Department of Oral Pathology at the University of Peradeniya)
Kuppi is a politics and pedagogy happening on the margins of the lecture hall that parodies, subverts, and simultaneously reaffirms social hierarchies.
by Udari Abeyasinghe
Features
Big scene … in the Seychelles
Several of our artistes do venture out on foreign assignments but, I’m told, most of their performances are mainly for the Sri Lankans based abroad.
However, the group Mirage is doing it differently and they are now in great demand in the Seychelles.
Guests patronising the Lo Brizan pub/restaurant, Niva Labriz Resort, in the Seychelles, is made up of a wide variety of nationalities, including Russians, Chinese, French and Germans, and they all enjoy the music dished out by Mirage, and that is precisely why they are off to the Seychelles … for the fifth time!
The band is scheduled to leave this month and will be back after three weeks, but their journey to the Seychelles will continue, with two more assignments lined up for 2026.
In August it’s a four-week contract, and in December another four-week contract that will take in the festive celebrations … Christmas and the New Year.

Donald’s birthday
celebrations
According to reports coming my way, it is a happening scene at the Lo Brizan pub/restaurant, Niva Labriz Resort, whenever Mirage is featured, and the band has even adjusted its repertoire to include local and African songs.
They work three hours per day and six days per week at the Lo Brizan pub/restaurant.

Donald Pieries:
Leader, vocalist,
drummer
Led by vocalist and drummer Donald Pieries, many say it is his
musical talents and leadership that have contributed to the band’s success.
Donald, who celebrated his birthday on 07 March, at the Irish Pub, has been with the group through various lineup changes and is known for his strong vocals.
He leads a very talented and versatile line up, with Sudham (bass/vocals), Gayan (lead guitar/vocals), Danu (female vocalist) and Toosha (keyboards/vocals).
Mirage performs regularly at venues like the Irish Pub in Colombo and also at Food Harbour, Port City.
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