This is all good news for those living with dementia, Parkinson’s disease, amyotrophic lateral sclerosis and other complex neurological conditions.

 

 

Chia Shyh Shen, 71, was diagnosed with amyotrophic lateral sclerosis, known as ALS, in 2022. It is a nervous system disease that affects nerve cells in the brain and spinal cord and gets worse over time, causing loss of muscle control. The father of three is unable to move below the neck but is fully aware of his surroundings and is able to speak. Things that we all take for granted like opening text messages or selecting YouTube videos to watch is an impossible task for Shyh Shen.

Working with a Tan Tock Seng Hospital (TTSH) speech therapist, he has been introduced to eye-tracking technology for independent phone use. An occupational therapist has also recommended a high-back wheelchair to improve support and comfort. The staff have even suggested other things to help Shyh Shen stay as independent as possible including Velcro instead of buttons on his clothes and a long comb.

Dr Ang Kexin, senior consultant, neurology at National Neuroscience Institute (NNI), shared about Shyh Shen, “We are really journeying with them [our patients].” She said that they are anticipating his future needs even though he still can communicate and added: “A lot can be done for our patients even though there is no cure. We can improve their quality of life.”

 

Understanding the patient better

 

All this is made possible through a comprehensive five-year programme by NNI and Lien Foundation called Neuropalliative Ecosystem of Care (NeuroPal). Launched in April 2024, the programme integrates palliative care into standard neurological care, helping healthcare teams better understand patients’ medical needs as well as their personal goals and priorities.

The S$6.8 million initiative is helping to transform care particularly for those with dementia, Parkinson’s disease, multiple sclerosis (MS), ALS and other complex brain, spine, nerve and muscle conditions. It has already reached nearly 2,000 patients to date and is hoping to support over 3,600 patients annually by 2030.

The programme addresses a gap in the healthcare delivery. Local data shows non-cancer patients typically receive palliative care only nine days before death, compared to 33 days for cancer patients. NeuroPal helps to provide support from diagnosis onwards, which is particularly crucial as patients can live with neurological disorders for many years and face symptoms that fluctuate and get worse over time.

Shared Assoc Prof David Low, deputy CEO (clinical) and senior consultant, neurosurgery, NNI, “By integrating palliative care principles early in our patients’ care journey, we can provide appropriate support and medical care to relieve symptoms and enable patients to focus on what matters most to them.”

NNI specialists treat neuroscience patients at seven hospitals across Singapore, including Tan Tock Seng Hospital (TTSH) and Singapore General Hospital (SGH). Previously, patients were not routinely screened for psychosocial issues during follow-up visits at NNI specialist outpatient clinics. Now, as part of this service, patients visiting some of NNI’s specialist outpatient clinics at NNI@TTSH are routinely screened to assess their needs, after which tailored support is offered accordingly. These include clinics that manage brain tumours and neurodegenerative disorders, for example, dementia, Parkinson’s disease, ALS and MS. Steps are currently underway to increase the number of clinics to include more conditions such as stroke, and NeuroPal is also rolling out at NNI@SGH, with the aim of more hospitals running the programme.

Sharing the programme’s early impact, as of May 19, 2025, 1,851 patients have been screened prior to, or at each follow-up clinic visit, and the results show that approximately one in five require specialised neuropalliative or supportive intervention. While fatigue and sleep issues are common across all patient groups, the programme has identified condition-specific challenges, such as job-related concerns in patients with MS, and mobility issues among those with Parkinson’s disease and ALS.

 

A long journey of progressive decline

 

Lee Poh Wah, CEO of Lien Foundation, added: “Neurological conditions often unfold as a long journey of progressive decline, marked by unpredictable symptoms, emotional distress and increasing dependence. NeuroPal is our commitment to transform neuro care delivery upstream, and to dismantle the misconception that palliative care is only for the end of life. Through a holistic and comprehensive approach, we alleviate suffering, uphold dignity, and support families to navigate complex decisions and transitions at every stage of the illness.”

To break it down further, NeuroPal encompasses four pillars:

1. A multidisciplinary neuropalliative team of NNI and TTSH staff provides tiered support. The team includes neuropalliative doctors, specialty nurses, clinical psychologists, medical social workers, physiotherapists, occupational therapists, speech therapists and dietitians, and meets regularly to discuss and address patients’ needs. This helps improve the coordination of care, facilitate multidisciplinary case discussions, and enable staff to be upskilled to better understand and manage the complex needs of the patients.
2. Regular routine screening for physical, cognitive, and psychosocial needs using the Distress Thermometer (DT) prior to or at each clinic visit so that needs can be identified and addressed as new symptoms develop and impact patients’ lives. This self-reported short questionnaire is a validated screening tool for checking distress in cancer patients and is also used for patients with life-limiting medical conditions. Patients are then categorised based on their DT score and categorised based on the level of intervention required. For instance, for patients who are found to have minimal neuropalliative needs, they will be managed by their current NNI specialist and care team, while patients with more complex needs would be referred to the neuropalliative specialist as well as a full multidisciplinary team for care.
3. Neuropalliative training in palliative care principles and techniques, delivered by the Lien Centre for Palliative Care, for all NNI clinical staff, multidisciplinary team members and community care partners. This certificated neuropalliative care course will be rolled out progressively from this year and includes community care partners, members of the neuropalliative multidisciplinary team, and all NNI doctors and nurses.
4. Partnerships with palliative care providers for seamless care transition, to improve patient access to care facilities in a timely manner to alleviate caregiver and patient distress. This includes direct-access admission to the new palliative ward at TTSH, SingHealth Community Hospitals’ inpatient palliative wards, Assisi Hospice Home Care and Dover Park Hospice Home Care.

 

For Shyh Shen, all this bodes well for him as he gets to “travel” through watching the YouTube videos. He is fully aware that there is no cure and he has good and bad days, but one thing is clear from this advice he shared: “Don’t think so much and be happy.”

 

(** PHOTO CREDITS: National Neuroscience Institute)