She was diagnosed with Stage Three breast cancer but getting treatment was not a priority for Nalini.
A single mother with three young children, the 49-year-old was declared bankrupt after defaulting on a housing loan.
Nalini lost her home and was blacklisted by the bank.
She and her children were dependent on her brother-in-law, who was a low wage earner, for room and board.
Ironically, Nalini had a stack of her late husband’s pension cheques. But because she could not open a bank account, she could not bank in the cheques.
Even though she was afraid of dying, her immediate worry was that there’d be no one to care for her children when she had to undergo treatment or get warded.
That’s when the patient navigators from Hospital Tengku Ampuan Rahimah’s (HTAR) Pink Ribbon Centre, Klang, stepped in.
“We had to do something because she had no way out of her situation. We contacted the bank and worked with Insolvency Malaysia and lawyers to appeal to the High Court for special consideration, given her medical situation. And we won the appeal. She was granted a waive of goodwill for the RM80,000 that she owed the bank. She was also able to re-open a bank account and deposit all her cheques.
“We found donors for school bags and stationary for her children and also enrolled them in a food programme so they could have breakfast and lunch in school.
“With all this sorted, Nalini completed her treatment in 18 months and continues to come for follow-up check-ups at the hospital,” shares Cancer Research Malaysia’s Maheswari Jaganathan, who co-ordinates the patient navigation programme for HTAR.
This, in essence, sums up what patient navigation is all about: helping patients overcome barriers of cost, fear, misinformation about the disease, so they would begin treatment as soon as possible.
This is crucial because the quicker treatment begins, the better the patient’s chances of survival.
There are six navigators in the Pink Ribbon Centre who act as the patient’s point-of-contact each time they come for treatment or check ups.
“This goes a long way as patients feel comfortable seeing the same nurses who know their history throughout their cancer journey,” explains Maheswari.
A landmark programme in Malaysia, the HTAR patient navigation programme is a pilot project by Cancer Research Malaysia (CRM), in collaboration with the hospital.
Its singular aim is to improve the survival rate of breast cancer in Malaysia, which is currently among the lowest in the Asia Pacific region with a five-year survival rate of 49% compared to 92% in South Korea, 83% in Singapore, over 60% in China, 53% in Thailand and 52% in India.
Malaysia’s low survival rate, explains CRM lead investigator Prof Dr Teo Soo Hwang, is largely due to late presentation of the disease and poor adherence to recommended treatment.
About 50% of breast cancer patients present themselves when they are at Stage Three or Four. And up to 50% who have a suspicious diagnosis never show up for treatment.
“Survival is very dependent on what stage the disease is caught. At Stage Zero or One, breast cancer is very curable but at such a late stage, treatment is more complex and chances of survival are lower.
“We really need to seriously look at how we can encourage early screening and also make sure that once screened, women come forward for treatment as soon as possible,” says Dr Teo.
Blame, she cautions, should not be placed solely on women who present themselves late. It’s also partly due to the failure of health services to respond effectively to women.
“We shouldn’t really be putting the blame on women for late presentation. It is actually a fault in the system. Are patients empowered to make the best decisions about their treatment?
“Improving the outcome for breast cancer is a community responsibility and we all have a duty to do what we can to change this,” says Dr Teo.
Treatment beyond medicine
The patient navigation programme is a holistic approach in helping patients access treatment.
“We can’t just treat the disease. We cannot treat the cancer when the patient has so many other things going on in her life that is preventing her from adhering to treatment.
“Only when all these other factors are addressed can we make a real impact with treatment.
“And this is why the Patient Navigation programme is so important,” says CRM’s head of community programmes Dr Jana Kanapathy.
The concept of patient navigation is not new. It was introduced by American oncologist, Dr Harold Freeman, in 1990 at the Harlem Hospital Centre in New York City to reduce disparities in accessing cancer treatment, particularly among the poor.
In Malaysia, although aspects of patient navigation have been adopted by a few hospitals, the comprehensive programme at HTAR is the first of its kind.
It was conceptualised by Dr Teo and her team and they found a partner in HTAR. Head of surgical services with the Health Ministry, Datuk Seri Dr Mohamad Yusof Abdul Wahab and HTAR’s head of surgery, Dr Azuddin Mohd Khairy were already working to improve patient outcomes and they felt the navigation programme would help.
“We now have a cohesive relationship and have built a roadmap of where we want to go with this programme. We don’t encroach on the hospital’s services but what they don’t have – the ability to hire nurse and community navigators or funding to run the programme and train the navigators – we provide. There is no one-upmanship in this relationship which is crucial. We have a joint problem that we are both trying to fix,” shares Dr Teo, who spearheaded the navigation programme.
The programme costs RM200,000 to set up and run annually, and is currently being funded by CRM’s main funder, Yayasan Sime Darby, through funds raised by their Ladies Professional Golf Association.
A one-stop centre
Currently, HTAR is the only government hospital to have a one-stop centre for breast cancer, called the Pink Ribbon Centre.
All breast cancer patients at the hospital come to the Pink Ribbon Centre — this negates the need for them to go from clinic to clinic for various appointments, which can be a draining experience.
The centre, which was converted from a meeting room, is tiny. It’s just a 27sq m space with a small consultation room for medical officer Dr Hidayati Zainab, who plays a significant role in seeing to all patients, and workspaces for navigators Norlia Rahim, Nurul Ain Tajudeen, Hani Zainal, Kavita Muniandy, Inderavathy Wallayan and Maheswari Jaganathan, who co-ordinates the patient navigation programme.
“When we started, we were just glad to be given this space. Our job was to produce results and not to ask for the stars. The space may be small but we are focused on our goal,” says Maheswari.
On their first visit upon diagnosis, patients have a consultation with a nurse navigator. The purpose of this is for the navigators to find out more about the patients and the challenges they face that may prevent them from seeking treatment fast. They find out if the patients have family support, are they able to come for treatment and if not, what the barriers are.
As a cancer diagnosis is life-changing, navigators also offer emotional support to patients and their family. Patients also get an idea of what their cancer journey could be like.
From here, the navigators draw up a plan of action together with the patient, such as finding necessary solutions to enable her to go on treatment.
The Patient Navigation team works on a strict timeline: patients go through all their diagnostic tests (mammogram, ultrasound, biopsy) within seven days of screening, are informed of their results within two weeks, go for surgery within 44 days and treatment within 65 days.
Most of the breast cancer patients at HTAR come from low-income households and face challenges when treatment begins.
More than 50% of their breast cancer patients are mothers with children younger than 17 years old; 47% have non-communicable diseases such as hypertension or diabetes; 34% believe in alternative medicine; 34% had life crises, such as a death in the family, divorce and so on; 27% live more than 15km away from the hospital and about 8% have had less than favourable experiences at healthcare institutions.
This data, which is collated by the navigators, informs the kind of interventions that need to be in place for the women to seek and keep to their treatment.
“Their challenges range from not having the transport or money for transport to come to the hospital regularly for treatment; unable to pay for child care during treatment or admissions, other existing financial constraints, lack of emotional support from family, prioritising family responsibilities over their healthcare,
“We work with community partners to try and work through their barriers.
“Our navigators are trained in palliative care and we do home visits for patients who live outside the coverage of Hospice Klang. It is very challenging but our common goal is to get these women to treatment fast and make sure they complete treatment,” says Maheswari.
The success of the patient navigation programme at HTAR has drawn the attention of hospital administrators from other states, and CRM is in the process of setting up similar programmes in hospitals in Kota Kinabalu, Seremban, Melaka and Kuching.