The mother of a severely disabled young man says her son can lead a better life thanks to the specialist care of disability nurses.
For a teenager with chronic intellectual and physical disabilities, quality of life hinges on the presence of familiar friendly faces attuned to your unique needs.
When you are also stricken by severe illnesses, your chances of happiness multiply if some of those familiar faces belong to qualified nurses experienced in caring for disabled people.
Ken Adderley, 19, cannot walk or talk. He battles osteoporosis, heart disease, frequent urinary tract infections due to kidney problems and cortical vision impairment.
The severity and complexity of Ken’s condition is not untypical of the 20 residents of Ageing, Disability and Home Care’s Complex Health Unit at Summer Hill, where Ken has lived for almost two years.
“I think the level of nursing care Ken is getting at Summer Hill is exceptional, and his rehab doctors agree,” said his mother Melinda, a teacher.
“Being under the care of the Summer Hill nurses has improved Ken’s quality of life tenfold. They have done an absolutely amazing job.”
Born with severe disabilities, Ken has a developmental age of only four months, as well as serious medical issues. He will not get better.
Melinda and her husband managed to care for Ken at home until just before his 18th birthday when a bed at Summer Hill became available.
Ken had to visit a general hospital 15 to 20 times a year when living at home. Since he moved to Summer Hill he hasn’t once had to leave there for medical treatment. Doctors and other health workers visit Summer Hill where they can treat Ken with the assistance of its specialist nursing staff.
Melinda said it was vital for the welfare of disabled people with multiple health issues that the government did its utmost to hold onto disability nurses and attract other nurses to the service.
“They should be getting paid the same as other public nurses, not having their working conditions reduced. The quality of life of so many people depends on the skill and understanding of these nurses.
“Ken has rods in his legs to stop his brittle femurs from breaking. Before moving to Summer Hill he suffered multiple breaks, and went into Summer Hill with a broken shoulder, but hasn’t had a single break since. That’s because the nurses there know his body so well and know how to handle him.
“Before Ken went to Summer Hill he was looked after by general nurses who usually did not know him and couldn’t tell the difference between his types of grizzling, whether he was comfortable or in pain.
“He can only communicate through laughing and crying; what you’d expect a four months old baby to do. You can’t learn to read someone like Ken in a couple of hours, it takes a long time. That’s why it is so important for Ken to have the consistency of nursing care he gets at Summer Hill.
“Ken is always in pain. He wears patches and takes Panadol all the time, with prophylactic pain management, usually morphine, on top of that.
“Because the nurses at Summer Hill care for him in the right way, he is in pain less often and we can reduce the amount of morphine he receives. They can quickly work out where the pain might be and decide on the appropriate response.”
Melinda praises the Summer Hill nurses for their proactive approach to Ken’s treatment. “The rods in Ken’s legs are starting to come out and he is not in a position to have any more operations, so the nurses are consulting with the rehab team and bone specialists to establish a plan to manage him without the rods.”
She believes it is vital for Ken’s peace of mind to receive consistent care from the same group of specialist nurses.
“Sometimes I might walk in to the centre and not recognise a new nurse but it will never be an entire staff of strangers. If Ken is cared for by a new nurse they will be shown how to deal with Ken by someone who knows him well.
“I’m confident that at Summer Hill there will always be a familiar face for Ken.”
Join 62,000 nurses and midwives in NSW by becoming a valued member today.