It is tradition for Chinese families to stay at home and have a meal together to mark the winter solstice, which fell last night.
However, for some muscular dystrophy patients who have had trachea surgery to help them breathe, there is no such celebration. The surgery extends their lives and enables them to live at home but the costs and difficulties of caring for such patients are beyond many families.
Clinical equipment needed to help the patients breathe through a hole cut in their trachea costs more than HK$50,000 to buy and ongoing expenses for care can be up to HK$15,000 a month. Some patients whose families cannot shoulder that burden are forced to remain in public hospitals. Others forgo the surgery.
Raymond Lau Wai-ming, chairman of the Hong Kong Neuro-Muscular Disease Association, said that welfare for muscular dystrophy patients had improved in recent years. The government introduced financial aid for patients' families on Comprehensive Social Security Assistance to hire personal caregivers. But non-CSSA families of patients who choose to stay away from public hospitals are not covered by medical subsidies.
'There are only three to four patients that need such assistance from the government each year. But, [as they are a small group], their situation is often ignored,' Lau said.
About 45 family representatives and patients gathered outside the Legislative Council yesterday to urge the Hospital Authority, the Social Welfare Department and other government agencies to remedy the situation. The patients had a winter solstice meal outside the legislature to symbolise those who could not spend the time at home.