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Patient-centred care and CKDu

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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.



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To recognise and reward Women Entrepreneur

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by Zanita Careem

WCIC “Prathibhabis-heka” national awards will be given to outstanding women entrepreneurs of Sri Lanka and the SAARC said Anoji de Silva, the chairperson of Women’s Chamber of Industry and Commerce WCIC at a press conference held at the Jetwing hotel Ward PlaceThis year the Women Entrepreneur Awards 2022 is powered by DFCS Aloka.This National Award which is recognised globally will help women to market their products to international buyers

“As a country we have faced many difficulties over the last few years. Now this is the time to reflect and ensure that local women can contribute and progress to be on par with international entrepreneurs She also noted that this award ceremony is a great opportunity for all since it’s an absolutely empowering platform. “You hear success stories of women from different walks of life and it’s very empowering and inspiring. I’m sure that the younger generation of women who will watch the ceremony wii be inspired to be sucessful entrepreneurs in the future S

“Our women entrepreneurs have the potential to help our economy to grow. They have made vast strides to build companies on a set of values and they have created diverse working environments.

The WCIC Prathibhabisheka Women Entrepreneur Awards will be held in January 22. To the question how financial records of small businesses headed by women could deter their ability to apply the chairperson said.

“We have a startup category which is under five years where they can submit documents for consideration. She responded “These women can apply but must submit proper records to back their applications or else they will be rejected wholeheartedly.The Women Entrepreneur Awards 2022

“Prathibha” depicts excellence in Sanskrit and WCIC will showcase the excellence of outstanding women entrepreneurs through WCIC Prathibhabisheka –

“The relaunched property is structured to assess the businesses in a holistic manner. We invite outstanding women entrepreneurs, especially the ones who have braved the challenges in the past years to share their story of resilience and achievements to compete for the coveted – WCIC Prathibhabisheka The Awards will honour women entrepreneurs for their tenacity to scale and grow, and for their contribution and impact on the economy. Whilst the competition is primarily for Sri Lankan Entrepreneurs, we have also included an opportunity for women in the SAARC region to compete in a special category” stated Anoji De Silva, the Chairperson of the WCIC.

The members of WCIC Ramani Ponnambalam and Tusitha Kumarakul-asingam, said”. We will be accepting applications under the categories – Start-up, Micro, Small, Medium and Large. Each category will have a specified revenue for the year under review – 2021/22. Gold, Silver and Bronze Awards will be presented for each category. With the view to identify and promote regional women entrepreneurs, we will encourage applications from all the provinces in the country and select the “Best of the Region” from each province.

The women will also be considered for the coveted special awards – Young Woman Entrepreneur, Outstanding Start- up, Most Positively Abled Woman Entrepreneur, The Most Outstanding Export Oriented Entrepreneur, The Best of the SAARC Region. The ceremony will culminate with the selection of the “Women Entrepreneur of the year -2022”.

“The entry kit can be downloaded from www.wcicsl.lk and completed and submitted to the WCIC along with all the material required to substantiate the applicant’s story. Entries close on the 31st of October.” stated Tusitha Kumarak-ulasingam.

WCIC Prathibabisheka – Woman Entrepreneur Awards 2022 is powered by– DFCC Aloka, as the Platinum Sponsor, with Gold Sponsors – Mclarens Group, LOLL Holdings Plc, Hayleys Leisure Pic, and AIA Insurance Lanka Ltd (Exclusive Insurance Partner), Silver – Finez Capital Ventures Print and Social Media Partners will be the Wijeya Group and Electronic Media Partner–ABC Network with Triad as our Creative Partner and Ernst & Young as Knowledge Partner.

Women’s Chamber of Industry and Commerce (WCIC) is the premier organization supporting entrepreneurs and professional business-women. The membership is open to women who believe they can contribute to society as well as benefit from the many facilities the organization creates. WCIC Prathibhasheka is relaunched this year as a flagship property, to recognize and reward outstanding women enterpreneurs who make a contribution to the SL economy.

For further information Contact- Janitha Stephens – 0766848080

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Marmalade sandwich in Queen’s handbag!

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In this period of national mourning, it may seem frivolous to comment on the late Queen’s handbag. After seven decades of selfless service to the nation, fashion is but a footnote to Her Majesty’s glorious reign.And yet her style is something that helped to create the powerful majestic image of Queen Elizabeth II, and which made her instantly recognisable worldwide. A key part of that image, and a constant presence in her working life, was her black Launer handbag.

Launer London was Her Majesty’s handbag maker for more than 50 years and has held the Royal Warrant since 1968. Launer bags are formal and structured, and proved to be the ideal regal accessory for public engagements. Its first royal patronage came from HM Queen Elizabeth the Queen Mother in the 1950s. Where others might have bought the latest ‘It’ bag, Queen Elizabeth exercised characteristic restraint with her handbags throughout her life, focusing on quality over quantity in her loyalty to Launer.

Her Majesty was known for her love of colour in her working wardrobe, wearing rainbow brights in order to be better seen by the public, but her accessories were always muted. Black mostly, sometimes beige or white in summer, gold or silver in the evening: neutrals that matched with every colour, allowing her to dress with ease. The timeless style of her trusty Traviata top-handle bag suited the Queen’s no-nonsense nature and symbolised her steadfast reign. The late Baroness Thatcher shared the Queen’s love of a strong top handle from classic British labels such as Launer and Asprey. These bags helped promote a look of someone in control. Like Queen Elizabeth, Thatcher’s handbags were such a part of her identity that they have earned their own special place in history and have been described as the former PM’s ‘secret weapon’. One such bag has been exhibited at the V&A alongside Sir Winston Churchill’s red despatch box. Both are artefacts of cultural and historic importance.

It has been said that there was another purpose to the Queen’s handbag on public engagements, namely that she used it as a secret signalling device. According to royal historian Hugo Vickers, Her Majesty would switch the bag from her left arm to her right to signal for an aide to come to her rescue if she tired of the conversation in which she was engaged. If she placed the bag on the table, this was a sign that she wanted to leave. Ever-practical, HM needed a bag that focused on functionality over fashion, choosing styles with slightly longer top handles that comfortably looped over the monarch’s arm, freeing her hands to accept bouquets and greet the public. Even in her final photograph, meeting her 15th prime minister in her sitting room at Balmoral Castle, just two days before her death last week, the Queen’s handbag can be seen on her left arm. Perhaps at this stage it was part armour, part comfort blanket.Even at the age of 96, Queen Elizabeth II did not lose her ability to surprise. She delighted the public by taking tea with Paddington Bear at her Platinum Jubilee celebrations and finally revealed what she keeps in her handbag: a marmalade sandwich, ‘for later’.

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Cinnamon Grand, Colombo welcomes You to the SEQUEL

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The next best thing in Colombo!

What would you get if you took the decadence of yesterday and paired it with the flavours of right now? Something bold and jazzy or rich and snazzy. Something we’d like to call the next best thing. All this and more at Cinnamon City Hotels to the SEQUEL at Cinnamon Grand, Colombo said a press release.

The release said the SEQUEL is where the old meets new, where charm meets sophistication and having a good time gets a new meaning. Colombo’s latest speakeasy cocktail bar is ready to welcome the discerning guest that is looking for that perfectly curated night.

“The SEQUEL will be a novel addition to Colombo’s nightlife catered to enthralling guests with our performances and showmanship,” said Kamal Munasinghe, Area Vice-President, Cinnamon City Hotels.

What do we mean when we say performance? It means that every little detail is tailored to those who appreciate elegance, and a bespoke experience like no other. Think walking into a vintage space accompanied by the sounds of Sinatra and Fitzgerald inviting you to do it your way or for once in your life. Think of the soul-searching and eclectic mix of Winehouse classics that you can drown your sorrows in.

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