CIS in the time of COVID: The Malaysian Experience
On the 18th of March 2020, the Malaysian government declared a nationwide restriction on public movement, termed a Movement Control Order (MCO). Members of the public, except for those who were working in essential services such as healthcare, were prohibited from travelling and needed to stay within their homes.
The same night, our CIS phones started ringing. The MCO had created a lot of confusion for cancer patients across the country. The reasons for this was soon apparent.
First, most of Malaysia’s cancer patients are treated in the public sector, and public sector delivery of oncology services is only available in a few tertiary centres in Malaysia. Patients on active treatment from all over who were due for surgeries, chemotherapy and radiotherapy appointments were concerned on what would now happen to their appointments since they could not travel.
Second, there was a huge amount of confusion amongst patients on queries related to Covid-19 and their risk of being exposed or infected with the disease. With the huge amount of misinformation that was prevalent on social media and even certain mainstream media channels, there was a lack of a trusted source that patients could go to for information.
Third, our cancer information specialists as well as other peer support team members with the National Cancer Society of Malaysia began reporting that many patients were reporting distress and other mental health issues. With the inability to access mental health services this was yet another boiling pot left to simmer amidst the Covid-19 pandemic.
To paraphrase an oft-quoted phrase, since life threw us a pandemic, we needed to start coming up with solutions. These are the ones we came up with:
i) On one front, the CIS team quickly began contacting all the oncology centres and building a rapid set of contact points for liasing about patients. When patients with scheduling concerns called the CIS, the team helped ‘bridge’ them to their respective treatment centres, rescheduling appointments or even, in some cases, redirecting them to needed treatment in other centres where and when necessary.
One memorable example for us was how the CIS helped move a patient in need of urgent surgery from a public tertiary hospital (which was closed for managing Covid-19 patients) to another private hospital, while also arranging through another party to fund the entire surgery.
ii) During the pandemic, cancer patients on treatment or those on chemoprophylaxis were discouraged to come to hospitals to fill in their medical prescriptions since this may have put them at higher risk of being infected. CIS specialists also worked quickly in this instance to come up with a list of hospitals that switched to sending drugs for their patients by mail. This was made available through various media channels to ensure that news could be spread. Our team also worked with these hospitals to reach out to patients who were supposed to come in to fill their prescriptions so that they could be sent the medicines by mail instead.
iii) Our team also have been actively working to provide information pertaining to Covid-19 to patients who have called in. Working together with NCSM’s Health Education, Literacy, Promotion and Policy (HELPP) Department who created continuous content in various formats for cancer patients amidst the pandemic; the team worked to disseminate the produced material via the CIS dedicated WhatsApp channels directly to patients. In addition, up to 40 calls/emails/WhatsApps requesting for information or clarification of misinformation were addressed daily during the initial one month of the MCO.
iv) The CIS team also worked to build a quick ‘virtual’ network of volunteer counsellors, mental health professionals and peer-supporters to provide online ‘tele-consultation’ to patients who had mental health concerns during the MCO period. The team worked as a command hub, triaging patients who called as well as patients who were referred for assistance and set them up with the professionals who could provide them with acute mental health relief. The team monitored the progress of the sessions to ensure that patients resolved their mental health issues.
Most of the roles the CIS had to suddenly ‘take on’ during this time of crisis was not planned for. Certainly, not one organization globally planned on such a calamity to befall us. But what enabled us to be able to be of help during this time was the social capital and the social networks that we have built over the years, working both with patients and organizations across the care continuum. This enabled us to retool and deal with the crises and problems as they arose.
In the ‘new’ normal that we will all come into in the aftermath of the Covid-19 pandemic, it is going to be challenging for the CIS fraternity globally to cope with the new realities. What will enable us to thrive and survive will require us to delve deep within and not forget that while even Covid-19 may go away, cancer is still very much here to stay. And with it, our constant mission to provide relevant, accurate information for our patients.
Written by: Dr Murallitharan M, National Cancer Society of Malaysia