The life of a person living with an illness is not just about taking medicines and making trips to see a doctor-it is also about getting an early and accurate diagnosis, having access to treatment, making decisions based on treatment options provided, and much more.
Dear Friends,
My journey in healthcare is deeply personal. Diagnosed with Crohn’s disease in 2011, followed by fibromyalgia, small fibre neuropathy, eczema, and sleep apnea, I was on a daily regimen of around 10 tablets. Through dedicated self-management—balancing both mental and physical health—and years of prescribed treatment, I am grateful to be off all medicines since 2019. I continue to use a CPAP machine for sleep apnea and remain committed to regular follow-ups with my healthcare specialists.
I have spent a decade working in Singapore’s social services sector and have been deeply involved in strengthening families facing challenges related to marital issues, relationships, employment, physical and mental health, housing, and finances. Using my education in Finance and Operations Research gave me immense satisfaction to lead a dedicated team of counsellors and social workers as the Executive Director, Foundation of Rotary Clubs (Singapore) Ltd.
My life became a roller-coaster from 2009 to 2011, as I struggled to cope with various symptoms and consulted 10 different specialists. After two years, I was diagnosed with Crohn’s disease, an autoimmune condition of the digestive tract. Within six months, I received a second diagnosis. Holding a full-time position became impossible for me so I decided to stop working and reassessed my goals.
Within the next six months, with strong support from Rotary Clubs, I founded the Crohn’s & Colitis Society of Singapore. Through this work, I have gained invaluable insights into the challenges faced by individuals with chronic conditions and the importance of strong peer support communities. Quite a few patients also get diagnosed with additional illnesses making life complicated. Managing symptoms, keeping track of medications, medical appointments, numerous tests and scans, making changes in diet, exercise and social life, and family dynamics add to the stress of being diagnosed with incurable diseases.
Seeing a few gaps in our healthcare ecosystem, I decided to create an organization that will bring together everyone in the healthcare space. In late 2021, aligned with WHO’s call for patient engagement I thought of championing the cause in Singapore. With amazing support from various healthcare stakeholders, in 2023 we registered the Alliance of Patients’ Organizations Singapore (APOS).
As the Founding Chair of APOS, I am committed to fostering collaboration between the hospital clusters, policymakers, researchers, industry partners, patients’ organizations, and philanthropic organizations. Early Patient Engagement by these healthcare stakeholders is vital. Moreover, continued engagement of patients and their family members as experts with ‘lived experience’ and in different phases of their work will create ‘value for patients’.
By collaborating with private and public institutions, APOS aims to undertake evidence-based advocacy and facilitate capacity-building of patients’ organizations. APOS aims to INSPIRE* action. Like a few other patient advocates, I am grateful for the opportunity to serve on multiple healthcare advisory committees, working alongside key stakeholders to drive policy change and improve healthcare delivery.
I invite all stakeholders—healthcare professionals, policymakers, researchers, patient groups, pharmaceutical, med tech companies, and philanthropic organizations—to join us in shaping a healthcare system that adds value to a patients’ life. Together, we can transform challenges into opportunities and create meaningful, lasting change.
Sincerely,
Ms. Nidhi Swarup
Founding Chair, Alliance of Patients’ Organizations Singapore (APOS)