NNI, Lien Foundation roll out early palliative care for patients with neurological conditions
SINGAPORE – The first time Mr Chia Shyh Shen experienced weakness in his right arm, he thought little of it.
It was 2021, and the now-71-year-old was trying to change a ceiling light bulb at home.
He could not hold his arm raised. At the time , he and his wife, Madam Tam Fee Chin, 70, attributed what they thought was temporary weakness to old age.
But soon, M r Chia, who along with his wife was employed at a relative's gold jewellery shop in Johor Bahru, could not even lift a tray at work.
Mr Chia was diagnosed in October 2021 with amyotrophic lateral sclerosis (ALS), t he most common type of motor neurone disease, which affects how nerve cells communicate with the muscles .
In 2022, the Malaysian couple sought help in Singapore.
There is no cure for ALS, which was formerly known as Lou Gehrig's disease. There are around 300 to 400 people living with ALS in Singapore.
The condition is more common to individuals older than 50, and afflicts more men than women.
Mr Chia is becoming weaker as his motor neurons – the nerve cells sending signals from the brain and spinal cord to the muscles, enabling movement – degenerate and die. He now has minimal mobility below the neck.
And as his disease progresses, he will lose the ability to speak, eat and , finally, breathe.
Mr Chia, however, remains cheerful, and is looking forward to future trips.
His doctor at the National Neuroscience Institute@Tan Tock Seng Hospital, where Mr Chia is a patient, is helping to make sure this stays the case for as long as possible.
While this may not sound like much , it reflects the transformation of care that is taking place there, particularly after NNI and the Lien Foundation rolled out in April 2024 a $6.8m five-year initiative to provide palliative care from diagnosis onwards.
They call it NeuroPal, which stands for Neuropalliative Ecosystem of care.
Prior to 2024, patients were referred to palliative care after experiencing advanced symptoms, said Dr Ang Kexin, a senior consultant at NNI, who has undergone training in palliative care.
'They came to me when they were bed bound or could not talk. Now they come earlier and can express their needs,' she said. 'We ask them about their hobbies... We anticipate their needs. We journey with them.'
NNI and the Lien Foundation held a press conference on May 29 to announce NeuroPal and its aim of integrating palliative care into standard neurological care.
It will go some way to help alleviate the suffering of patients living with ALS , dementia, Parkinson's disease and other complex brain, spine, nerve and muscle conditions.
Palliative care patient Chia Shyh Shen (bottom) was diagnosed in October 2021 with amyotrophic lateral sclerosis, the most common type of motor neurone disease, which affects how nerve cells communicate with the muscles.
ST PHOTO: KUA CHEE SIONG
NeuroPal has screened nearly 2000 NNI patients with neurological conditions, of which 370 patients are given palliative care.
NNI@SGH started the programme at one clinic in 2024. By the time NeuroPal ends in five years' time , it should have supported more than 3,600 NNI patients annually at TTSH and SGH, said NNI and the Lien Foundation.
The hope is to expand it to other hospitals, and more community care partners. NNI specialists treat patients at seven hospitals across Singapore.
With NeuroPal, patients are routinely screened for psychosocial issues and support can then be tailored for them, based on their distress levels.
Associate Professor Adeline Ng, Senior Consultant, Neurology, NNI and NeuroPal co-lead, said they use a self-reported short questionnaire called the Distress Thermometer to understand what matters most to the patients.
The initiative pumps funding into training and hiring more palliative care staff, including two psychologists, three medical social workers, four nurses and others.
Palliative care patient Chia Shyh Shen (bottom) with Tan Tock Seng hospital staff (from centre-left) National Neuroscience Institute Senior Consultant Dr Ang Kexin, Principal Occupational Therapist Huang Huixin and Senior Speech Therapist Yong Xing Tong at the Centre for Geriatric Medicine, in Tan Tock Seng Hospital, on May 29.
ST PHOTO: KUA CHEE SIONG
Lien Foundation's CEO Lee Poh Wah said during the press conference that with the initiative, they want to dismantle the misconception that palliative care is only for the end of life.
'It's naive to frame neurological diseases as a battle to be fought at all costs... I think we need a more humane and humble approach to healthcare, one that acknowledges the complexities of living with serious illness.'
Palliative care aims to help relieve the symptoms and stress of serious illness and support caregivers, and it can help to reduce unnecessary suffering when it is given early in the disease trajectory, he said.
Neurological conditions often unfold as a long journey of progressive decline, where a patient suffers emotional distress and is gradually robbed of his or her independence.
Among those who receive palliative care, 60 per cent are cancer patients, but cancer only accounts for 26 per cent of all deaths, he said.
The hope is to train more healthcare professionals to deliver general palliative care, he added.
Associate Professor David Low, Deputy CEO (Clinical), NNI, told the media that people often think of palliative care as something that is given at the terminal stages of life.
But for neurological conditions, the care can start early, for instance, when a person is diagnosed with motor neuron disease.
ALS patients typically live for around 3 to 5 years, but there are a lot of outliers, and Mr Chia is one of them, said Dr Ang.
To help improve his quality of life, the NeuroPal team at NNI@TTSH regularly monitor him and recommend solutions to help him cope with the inevitable changes that the disease brings.
They recently let him try out an eye-tracking device called Tobii, which will enable him to communicate with others or pick out videos to watch, and a tilted wheelchair that can support his neck.
'We are future-proofing him. With Tobii, he can learn it faster now because he can still communicate verbally,' Dr Ang said.
With that wheelchair, should he opt to buy it, he can travel in greater comfort, she added.
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