Monday 22 October 2012

Home help for sick kids, families

Programme offers care-giving and emotional help to kids who need palliative care and their families
By Melissa Pang, The Straits Times, 21 Oct 2012

A home palliative care programme tailored specifically to the needs of young patients' families and terminally ill children was officially launched yesterday.

The Star Pals (Paediatric Advanced Life Support) programme is a home-care service with a specially trained team that looks after children and young adults who are dying of cancer, as well as those who suffer from serious disabilities.

Besides its focus on children, what makes this different from other home-care services is the support given to families of the young patients.

Dr Chong Poh Heng, programme director of Star Pals, said the service arose from the recognition that children require dedicated palliative care.

"This group can run from infants to toddlers to teenagers to young adults," he said. "Therefore they have very diverse needs. Because of the fact that they are kids, the impact can be particularly significant for family members."

That is why attention is extended beyond the patient, with bereavement care support given to his parents, siblings, grandparents, and even friends and classmates.

Another key feature is a service which allows the caregiver to take a break from looking after the child who is ill.

A volunteer, known as a medi-minder, takes over the role of caregiver for up to eight hours a month.

Besides helping patients to bathe, eat and move around, the medi-minder acts as a companion, by reading or playing games with them.

Patient Wong Choon How, 17, looks forward to visits from his medi-minder, who comes twice a month for four hours each time.

"She tells me stories and teaches me drawing," said the teenager, who suffers from a type of muscular dystrophy. The service allows his mother, Madam Tan Siok Bee, 48, time off to rest or to sell ice cream, which she does on an ad hoc basis.

In a speech at the launch of the programme at the Land Transport Authority auditorium yesterday, Minister of State for Health Amy Khor cited an example of a patient called Louis (not his real name), who benefited from Star Pals.

Just three years old when he was diagnosed with a brain tumour, Louis was given less than a year to live. Distraught over the devastating news, his parents embarked on a desperate search for a cure, which included surgery that almost claimed his life.

Star Pals was introduced to the family 11/2 years after Louis' diagnosis. Over the next six months, the team, which includes a doctor, a nurse and two counsellors, helped him recuperate at home with his parents by his side.

Louis' parents also had to think about how they wanted him to be treated if he turned critically ill.

"Nothing can diminish the pain and the grief that comes from such heartbreaking situations," said Dr Khor.

"But, at the very least, instead of seeking intensive, possibly intrusive, uncomfortable and costly treatments, Star Pals enabled the family to spend quality days together till the last moments of Louis' journey."

Star Pals was developed by HCA Hospice Care and began taking patients in April this year.

The Tote Board Community Healthcare Fund is injecting a total of $3million to cover 80per cent of the cost of the three-year pilot programme.

So far, 40 patients have used the service. The youngest is just 20 days old, and the oldest is 21 years old.

There are 25 patients on the programme, which will be expanded to look after at least 60 patients a year.

All Singaporeans, permanent residents and foreigners can apply for the service, which costs either $30, $60 or $90 a month, after means-testing.

The nominal fee covers visits that take place from once to twice weekly to once a month, depending on a patient's needs.

Home visits from allied health professionals such as physiotherapists, occupational therapists and speech therapists are available for patients who need them. There is a 24-hour helpline as well.

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