Patients with lifelong illnesses don’t necessarily have to compromise when it comes to achieving the best quality of life possible. For patients with long-term or degenerative conditions, it can be difficult to meet their medical and non-medical needs. This is certainly the case for those who require round-the-clock care.
“It’s almost impossible for these people to be looked after at home without some level of specialized care,” says Deborah Pierce, Head of Rehabilitation Department and Senior Physiotherapist at Amana Healthcare in Al Ain. The majority of patients at Amana Healthcare are attached to ventilators and suffer from complex neurological disorders. Essentially, “for conditions where the patient has the potential to get better and go home in up to three months of intensive rehabilitation, they’ll go to a specialized rehab facility” says Pierce.
Amana Healthcare has a clear philosophy when it comes to its complex, long-term patients. “We’re here to improve the quality of life of the patient as well as the family. The sort of output we’re looking for is to reduce pain and any muscular or skeletal deformities,” says Pierce. Many residents in the facility are unable to walk, which means their bones become extremely brittle. Staff therefore ensure patients’ diets contain supplements such as vitamin D and calcium to reduce the risk of injury or complications. In fact, each patient is assessed every month by a full team of physios, occupational therapists and speech therapists.
If there are any areas where the team notice a deterioration or an improvement, they tailor treatment plans to ensure individuals benefit from the best possible quality of life. Providing the right level of care isn’t the only way that the staff at Amana ensure their patients benefit from the best quality of life possible. The facility has open and green spaces where patients are able to spend time outside. There is also a specially designed sensory room, where therapeutic lighting effects are used to improve the mental health of residents. Perhaps most significantly though is the importance that Amana places on involving families in patient’s lives. At Amana Healthcare, about half of all patients are children.
“At Amana, they are not only concerned about the physiotherapy sessions but they also have lots of external activities where they are treated like normal children who enjoy their lives,” says Emirati mother Bushra Ali Al Bahri. “They go outside and there are exchange visits between the families and the residents.” Al Bahri is in the unenviable position of having three of her young children as residents at the facility. All three suffer from type 1 spinal muscular atrophy, which is a degenerative genetic disease that leads to the loss of motor neurons and muscle wasting. Subsequently, Al Bahri’s children require 24-hour care, which Amana Hospital can provide. Yet, for their mother, it’s the environment itself that differentiates the Al Ain facility from other long-term care hospitals. The subjects of family and home are recurring themes for Al Bahri. “When I decided to move my kids here, I made several spot visits to the facility without informing the staff. I saw that the nurses and the physiotherapists were looking after my children.” For Al Bahri, her children’s quality of life is paramount. She wants to make their lives as rewarding as possible. “I always try to be involved with all of the main events in their lives. Since they were born, I’ve celebrated their birthdays either at the hospital or in my home. Also, when another family member has a birthday or during Eid, I usually ask Amana to send the kids to my house.
The children usually leave the hospital every week and the team can arrange visits to cinemas and malls,” she says. One of the main achievements for the staff at Amana is their success in improving how patients communicate. Al Bahri’s oldest daughter is eight year-old Sara. “With Sara, we have a computer that she can control with her eyes, like she’s using a mouse. She can also control her environment with the machine, so if she wants to turn her light off or turn her TV on, she can do that too. It’s called Eyegaze. She can also use it like a communication device,” explains Deborah Pierce.
“Based on the sensory assessment of Sara, the hospital started to work with her. Before, she was not able to talk and understand people. Since she came to Amana, she can now understand both English and Arabic. She mainly communicates with her eyes,” says Sara’s mother. Sara and her younger sister Noor share a bedroom. The room is decorated with Disney princesses and other items, which give their
Hospital a sense of personality. Their young brother Ali is also just down the corridor. This clearly means a lot to Bushra Al Bahri. “Generally, I believe that their illness is out of my hands,” she says. “My family support me a lot and I can call my children’s home Amana House, not Amana Hospital. That’s the atmosphere I feel when I come here.”