Mr Ellil and Senior Nurse Clinician Ong Choo Eng, who is the Nurse Lead of the SGH Colorectal Cancer Support Group (CCSG)
When Mr Ellil Mathiyan was first diagnosed with both rectal and testicular cancer in March 2011, his family did not notice a change in his cheerful demeanour at family gatherings.
“Despite being stricken with cancer, he was still his usual upbeat, positive self,” recalled Mr Darren Ching, his nephew. “Everyone was quietly rooting for him, and we were all so impressed by his resilience in the face of his illness.”
It was not an easy journey for Mr Ellil, now 60. He had surgery at Changi General Hospital (CGH) to remove his rectum and underwent 28 radiation treatment sessions and eight chemotherapy cycles, before he was declared cancer-free nine months later. Just as he completed the arduous treatment, he was greeted with another challenging piece of news. He would have to wear a stoma bag for the rest of his life to collect stool through an artificially created hole in his abdomen.
“It was a big blow to me. I had to learn how to live with such a permanent change to my body,” he recalled.
The importance of support
Determined to deal with the change, he looked online for information on stoma care and found a UK-based online support group with fellow cancer survivors who shared useful tips and information with one another. He started looking for local groups that could offer the same support, and a chance encounter with a fellow colorectal cancer survivor at the National Cancer Centre (NCCS) led him to the SGH Colorectal Cancer Support Group (CCSG).
“The CCSG was one of the best things that happened to me after surgery,” he said. “It means a lot to meet others who are going through the same challenges as you who can share their own experience and give advice.”
It was also through the support group that he met Senior Nurse Clinician Ong Choo Eng, who is the Nurse Lead of the group. As a stoma nurse, Sister Ong gave him valuable post-surgery care tips, including how to prevent parastomal hernias -- a common complication in people who have undergone colostomies (surgery to remove the rectum).
From Patient to Patient Advocate
It came as no surprise to Sister Ong that Mr Ellil signed up to become a Patient Ambassador of the CCSG. After all, he was already a regular face at the group’s monthly gatherings. As a Patient Ambassador, he visits wards to talk to patients undergoing treatment and shares his experiences dealing with the side effects of chemotherapy and adapting to the resulting lifestyle changes. He also lends a listening ear to those who need a friend, such as Mr Tan Beng Hua, who had six lymph nodes removed due to cancer.
“Ellil has shown me that there are people with cancer who have survived and even thrived. Seeing him bustling around so healthy and lively gives me hope that my life will improve for the better too,” said Mr Tan.
In early 2017, Mr Ellil was nominated by Sister Ong to join the SingHealth Patient Advocacy Network (SPAN), a platform for patients and caregivers to work with hospital staff to improve patient care. SPAN members participate in focus group discussions and engage healthcare providers to improve different aspects of patient care. Mr Ellil currently co-chairs SPAN with a fellow patient advocate.
“SPAN members, like Mr Ellil, lend their voices to the design of care delivery processes and help to ensure that what matters to patients is taken into account,” said Adj Assoc Prof Tracy Carol Ayre, Group Chief Nurse, SingHealth, who is a SPAN advisor. “We have greatly benefitted from their input in developing the Nursing Software Suite, which will be used to educate patients and caregivers about their condition through a bedside tablet and mobile app, empowering them to be a part of their recovery process.”
Mr Ellil and his fellow SPAN members have given input on wayfinding around SGH and have tested an appointment making chatbot prototype that the National Dental Centre (NDCS) is planning to launch. They will also be involved in future projects to improve patient experience.
“We can empower patients and caregivers to engage constructively with healthcare professionals and be more involved in their own care. For healthcare professionals, it’s a reminder to always have the patients’ needs in mind,” said Mr Ellil.
Mrs Tan-Huang Shuo Mei, Group Chief Communications Officer of SingHealth and advisor to SPAN, agreed, “The partnership between SPAN and healthcare professionals creates a ‘space’ for new conversations, which pulls back the veil on areas in healthcare that must change in the evolving healthcare landscape. This allows good ideas to benefit more patients and caregivers.”
Letting others know they are not alone
Since his struggle with cancer, Mr Ellil knows not to take life for granted. “The possibility of a relapse is always there,” he said. “Because of this uncertainty, I want to do something meaningful in the remaining years of my life.” Mr Ellil now spends up to four days a week volunteering at support groups, SPAN and other events.
Darren said proudly, “He has always been our fun-loving uncle, and now he shares his infectious enthusiasm with even more people.” Mr Ellil hopes that through his actions, people who have been newly diagnosed with cancer will know that while it is natural to feel despondent, there is support and they are not alone.
“Whatever problem you have, there will always be someone to hold your hand and walk the journey with you,” he said.
Today’s healthcare is focused on delivering care in ways that matter to our patients and caregivers. At SingHealth, we value the voices of our patients. Patients and caregivers have become key partners in the care journey and play active roles in improving the quality of care.
Patient Support Groups
In addition to the care teams, patient support groups are excellent sources of information and support for patients. Members share their first-hand experiences of the disease condition, treatment and coping strategies. The support of patient-to-patient networks relieves the emotional burden on patients and caregivers. Support groups have proven to be an integral part of patient empowerment.
ESTHER Network Singapore
Launched in 2016, the ESTHER Network Singapore aims to promote the philosophy of person-centred care by always asking “What is best for Esther?”, drawing inspiration from the ESTHER Network which started in Sweden. Esther symbolises a patient whose health and social care needs require close coordination across different care settings. The Network seeks to improve care delivery processes and coordination among hospitals, intermediate and long term care (ILTC) agencies, voluntary welfare organisations (VWOs) and general practitioners (GPs) to better serve our Esthers.
The Network has trained more than 190 ESTHER coaches comprising healthcare and community care professionals. These coaches have initiated various projects, which include ESTHER Cafés, where patients are invited to share their care journey experiences. With their feedback, ESTHER coaches identify areas for improvement and start projects to increase the competence of the whole care continuum.
SingHealth Patient Advocacy Network (SPAN)
Established in 2017, the SingHealth Patient Advocacy Network (SPAN) is a self-driven network of patients and caregivers that represents the voice of patients. Working in partnership with the healthcare team, SPAN provides important patient perspectives and plays an active role by giving inputs on how SingHealth can improve the patient experience.
“Involving the voices of patients calls for a fundamental rethink of our current care model, and SPAN is the bridge between patients and the healthcare team,” explained Prof Tan Kok Hian, Group Director, Institute for Patient Safety & Quality (IPSQ), SingHealth.
To help members be effective patient advocates, SPAN has also initiated the Patient Advocacy Communication Training (PACT), which is slated to commence in the second half of 2019.
“Through the PACT programme, we want to empower Patient Advocates to give their perspectives on proposed initiatives and equip them with the skills to communicate their input,” Prof Tan added.