x Abu Dhabi, UAETuesday 25 July 2017

For the chronically ill, some freedom

A new, specialised intensive care unit makes patients feel more at home than they did in hospitals.

At 4 Latifah is already older than most thought she would be. She is suffering from a rare type of metabolic congenital disease. Doctors believe it is her will to survive that keeps her going.
At 4 Latifah is already older than most thought she would be. She is suffering from a rare type of metabolic congenital disease. Doctors believe it is her will to survive that keeps her going.

A new facility offers its patients a level of intensive care previously available only in hospitals - while allowing them the luxuries of a more normal life, writes Zaineb Al Hassani

Yusra Al Hattali spends her time texting her friends and family, planning her future, and keeping her nurses on their toes.

Her room in a large villa is decorated with a mixture of varying shades of pink, complete with a couch, bookshelf and wall decorations. It is an intensive-care unit unlike any she has experienced before.

Since April, the 24-year-old Emirati, who wants to study art, has been living at ProVita International Medical Centre in Khalifa City. The facility is the first in the region to offer intensive care to chronically ill patients outside of a hospital.

Intensive care beds in the capital's hospitals operate at almost 100 per cent capacity throughout the year, according to the Health Authority-Abu Dhabi (Haad). According to ProVita, its centre will "alleviate financial and logistical pressure on over-subscribed hospital ICU units in Abu Dhabi and the GCC".

For most of her life Ms Al Hattali has had to cope with a neuromuscular degenerative disease that has left her unable to move anything aside from her hands, mouth and eyelids. She is not able to live without constant medical attention, but she has a lot more freedom now than she did in a standard ICU.

"When she first came here, she was staying up late at night and sleeping in for her physiotherapy the next day," said Dr Fatma Ridene, from Tunisia. "She also wanted a parrot in her room, but had to settle for goldfish."

The facility is the first of many planned for the UAE. The next project, still in the planning stages, will be in Al Ain.

More than half the beds at the centre, which will officially launch in October, were already full, said Dr Ridene. "There are more patients than we have beds."

The facility is manned by three physicians and about 50 nurses and has room for 42 patients. At full capacity there will be six physicians and 110 nurses.

The first ProVita centre was opened in Germany, in 1995, by Christina Shawky-Boehme, who also founded a nursing academy in the country.

The ProVita facility in Germany received a large number of Emirati patients over the years, all of whom were forced to travel abroad for highly specialised care that was unavailable in the UAE.

Haad asked Ms Shawky-Boehme to recreate ProVita here, Dr Ridene said.

From children as young as 2 who suffer from the after-effects of meningoencephalitis - an inflammation of the brain that shares similarities with meningitis - to young adults left incapacitated after road traffic accidents, each patient is looked after by two nurses, working on 12-hour shift rotations.

For Jameela Al Hammadi, whose 24-year-old son, Ali, was brought to the facility, the level of care has been incredible. "I am so happy to have Ali here," said Mrs Al Hammadi. "I think he is improving."

The victim of a motorcycle accident in 2009, Ali spent time in Germany and at Mafraq Hospital before coming to ProVita. Although the care provided at Mafraq was good, Mrs Al Hammadi said, it wasn't enough. "In Mafraq, there are too many patients in ICU, and Ali had a small room."

She said there were other benefits to the centre. "Before, it was difficult to visit. Now I come here on a daily basis."

Ali is one of many people in the UAE in need of constant medical attention. Young patients most commonly suffer from congenital diseases, while older male patients are more likely to have suffered head injuries in road traffic accidents, Dr Ridene said. Older females needing constant care often suffered from myopathy, a muscular disease, she added.

Patients with serious enough conditions can be admitted from the age of 1. There is no age limit.

Staff are heavily vetted. "Nurses must have a minimum of two years' ICU experience. The staff need to be highly skilled, in ICU especially."

The facility has greatly improved the quality of life of many Emirati patients. One such patient is Ms Al Hattali.

"I was in Khalifa Hospital for 10 years, and almost I had a normal life, but with restrictions," she said. "I must make appointments to go out of the hospital ... but my family were always beside me, supporting me." When Khalifa Hospital recommended that Ms Al Hattali move to the new facility, she did not hesitate. "I can go out of my room and out of the villa any time I want," she said. "The staff is very good and nice with me, and my family visit me any day and any time."

In possession of some of the best ICU equipment in the country, ProVita takes a holistic approach to care, according to Dr Ridene. The facility aims to rehabilitate, re-socialise and re-educated the patients.

"We are helping the patients, but we are also helping the families," she says.

"It's really, really important socialising these patients."

For the patients, having their family at the centre is an important part of the rehabilitation process. "It's the only facility that lets the family stay with them. In ICU you have to make a request to visit. Time is very reduced."

At ProVita, however, patients are able to keep pets, entertain family members, and cook. This approach has changed Ms Al Hattali's outlook on life.

"Now I feel that I have a normal life and I want to do more and more," she said.

zalhassani@thenational.ae

Anyone wishing to volunteer can contact the staff via ProVita's website at www.provita-me.com.

 

Hope for Latifa, 4, as she battles against the odds

Latifa Al Hurmoodi watches a cartoon from her makeshift bed of cushions and blankets. Nearly 4 years old, she has surpassed by almost two years the life expectancy of those with the congenital metabolic disease molybdenum cofactor type A deficiency, which she has had since birth.

Latifa was the first patient in the UAE to be received by the long-term-care provider ProVita. She spent the first part of her short life in the intensive care unit in Sheikh Khalifa Medical City’s paediatric ward.

Her condition affects about 1,000 people worldwide. Symptoms include respiratory problems, continuous seizures and impaired cognition.

Since moving to the facility in February, Latifa’s life has continued to improve, said her father, Khalid Ahmed Al Hurmoodi.

ProVita has given the Abu Dhabi Education Council employee, his wife and his son renewed hope.

“Latifa has been showing signs of improvement. We know that her case is difficult, and that she’s going to need a long time to improve, but we can see that the symptoms are decreasing,” said Mr Al Hurmoodi.

The family was also able to spend more time with her, he said. “She is more comfy, she has a beautiful room, and we are more able to provide her with anything she needs.”

Although the family is financially stable, Mr Al Hurmoodi said they would have preferred that the facility be a public service, provided by the Government.

“In the previous four years, we have come to know families who need specialised care and who need a centre like this one, but they cannot afford private care,” he said.

However, he said, the facility was an example of progress in the Emirates.

“I am aware that the UAE is making a great improvement in the area,” he said.

* Zeinab Al Hassani