More than 35 years ago, persons with leprosy were sent to what was known as the Mahaica Leprosarium where they remained until they were either declared cured or died.
Today the hospital is a far cry from what it was when the Sisters of Mercy took over its operation 35 years ago. While in those days the patients lived in relative comfort and even had their own theatre, the few who remain there today appear to be the abandoned of this land. However, Permanent Secretary in the Human Services Ministry Trevor Thomas disputed this, saying it was far from the truth, as the ministry still provides for the patients and plans are in train to repair some of the hospital’s infrastructure this year.
Many of the buildings which were once in the compound are no more. According to one of the patients, they were stripped by persons in the area. In fact 84-year-old Herman Fullington, who has been at the hospital since 1963, is of the firm belief that most of the homes in the nearby community were built with materials from the stripped buildings.
What is left today are five cottages, two administrative buildings and a chapel. At least three of the cottages are so dilapidated they are not fit for human habitation. From over 100 patients 35 years ago there are only seven remaining today. Two other persons, who were never patients, also live at the institution. They were associated with it since childhood when they had relatives living there. There are three women and six men at the institution today; the two women who are patients are bed-ridden.
Patient numbers dwindled over the years as those who were institutionalized went to meet their maker and because leprosy is no longer a disease that is incurable. Once persons are treated, it is also not contagious. Guyana has for years stopped the practice of quarantining persons infected with the disease. As a result, there have been no new admissions to the facility for a number of years.
The persons who remain there have nowhere else to call home and their families are unable to take care of them; the Mahaica hospice will remain their only home until they close their eyes.
Sister Mary Noel Menezes, one of the Sisters of Mercy who has been visiting the institution since she was 15 years old, said that as successive governments became more and more strapped for cash, the Mahaica Hospital was not high on their list of priorities. As a result, she said in a history of the hospital published in this newspaper, the Sisters have had to supply the patients, not only with food but with other necessities. She said the patients look forward to the Sisters’ visits each week when they receive a variety of food supplies.
Trevor Thomas, Permanent Secretary of the Ministry of Labour, Human Services and Social Security, which has responsibility for the hospice, said the patients are well taken care of, but admitted that some of the buildings are dilapidated, As a result, he said, some $3.5 million has been earmarked to do repairs to some of the buildings this year.
Thomas in an interview with Stabroek News said the ministry provides “far more” than the persons living at the hospice need.
“I am aware of the fact that there are residents at the Mahaica Hospital who in fact give away stuff to their relatives when we give to them,” Thomas said.
He said the money spent per person there is much more than what is spent on persons at the Palms or the Mahaica Children’s home, which is a stone’s throw away from the hospital.
Thomas explained that while Hansen’s disease is no longer contagious, there is still a stigma attached to it, which is why there are residents still living at the hospice.
“People are still going to be treated that way and we as individuals… don’t only treat the person differently but we treat the relatives [differently] as well… There is something about our culture where we don’t want to be near somebody who has been near somebody with it,” Thomas said.
He said eventually the institution will close its doors, but it cannot be done now, because the persons there have nowhere else to go.
Thomas, who related that the last time he visited the institution was last December, said he would visit very soon. He said there are plans to condemn some of the buildings and repair two of the cottages, one for the nurses’ quarters and the other for the residents. He said for “some strange reason” they have done electrical repairs but there continues to be damage to appliances there.
He pointed out that at times there is competition for resources and sometimes the money the ministry has may have to go to the 40 children at the Mahaica home instead of the hospice, and as a result “over the years there has been some amount of neglect on the physical plant.”
The physical neglect Thomas mentioned, referred to some buildings which are literally falling apart. According to Sister Noel a member of the nursing staff fell through the flooring of one of the cottages and injured herself. Asked about this Thomas said he had not received a report about the incident.
He said the dietary needs of the patients, which he described in some cases as “lavish,” will continue to be met and there has never been any cut back on this in the past.
There have been reports that some of the employees at the institution steal items from the patients. According to Mr Fullington there is one particular staff member who steals from some residents and makes their lives miserable. He said while he is blind and as such has no need for a television set, the woman sometimes prevents patients from watching television informing them that they “burn too much electricity.”
“She don’t make sport; since you slip you slide,” Fullington said in reference to the alleged stealing by the staff member.
A letter was written to Head of the Social Services Wentworth Tanner by the inmates about the issue, and according to Fullington, he even had a meeting with Tanner about this and many other issues.
Sister Noel said Tanner has since informed her that he has held a meeting with the woman, but she had understood they “could not fire public servants.”
Thomas said he was unaware of the reports, and while he does not doubt what is being said, he is willing to arrange a visit to the hospice so that all of the residents could be spoken to.
Asked how he could be confident that what is purchased for the institution actually gets to the residents, Thomas said the ministry makes checks.
“We check it and I know for sure because we check records and not only that, they themselves know because I have been getting reports that they give away. They give away from things such as bath towels, bed sheets…” Thomas said.
He said the patients may ask the Sisters of Mercy for items because they are human beings and sometimes they would observe the Sisters taking items and decide they want more for themselves and to give their relatives.
Fullington did admit to Stabroek News that he recently gave a towel and bed sheets to a young man who stays in the compound which were given to him by the ministry.
“I had no need for it so I gave it to him because he had none,” he said. Fullington receives his pension and money from the Legion in Canada; he is a member of the Guyana Legion.
According to the permanent secretary in addition to providing regular meals for the residents they also provide snacks for them so they can eat whenever they feel the urge.
Sister Noel reported that over the years, with the help of a number of benefactors and organizations both at home and overseas, viz, Guyana Christian Charities (Canada, Inc), Aid to Guyanese Group (UK), the Rotary Club, Canada and Philadelphia, as well as the Sisters of Mercy in the USA, supplies such as blankets, sheets, towels, soap, toothpaste, powder, flashlights, batteries, thermos flasks, even wheelchairs have been provided for the patients. In the 1990s, Ferdinand Mahfood of Food for the Poor donated 3 refrigerators as well as chairs, pillows, blankets and sheets to the patients. Project Dawn donated a number of beds, among other items. A refrigerator and television set were also given to the women.
Veterans’ home
Thomas said it is not the case that the residents are forgotten, but when those who remain are no more the buildings would be pulled down as stigma is still attached to the hospital, even with all the education that has been done on the disease.
For Fullington he is hoping that when the veterans’ home is completed in the Joint Services’ scheme he will be allocated a room there. He said he has a fridge, fan, bed and most of the basic stuff that is needed for his survival and he uses his pension to purchase what he needs. In 1949, Fullington, who was a carpenter by profession, was declared free of the disease and he later went into the interior to do pork-knocking. He feels that the constant diving into the water caused him to suffer a relapse and in 1963 he returned to the hospital.
He recalled that he once worked in the cinema that used to be in the compound and he even worked on some of the buildings.
But he was not at the institution all the days of his life. Fullington revealed that he had purchased a place in Lancaster but later sold it for $16,000 when he lost his sight and could no longer live on his own. He has also lost all of his fingers.
“Things are bad at the hospice and for me the administrator has outlived his usefulness. You know he has been there since he was a young man and now he is his eighties. Is like they just want to find a job for him,” Fullington said with a shake of his head.
He said the flooring of the cottage he stays in is very bad but he has since put vinyl on the floor in his room.
“I put several layers of vinyl on the floor so I am not allowing the flooring to bother me,” he said.
He complained about the nursing staff not turning up to work on time and leaving before their shifts are over which sometimes forces him to empty his bed pan over the railing as he is unable to reach the toilet.
He said all of those who remain at the hospice have nowhere else to go and they are aware that as soon as they leave this earth the hospice would be no more.
“I know when we die the hospice would be pulled down. They are waiting for us to die…” he said.
Leprosy today
According to the World Health Organisation (WHO):
* Leprosy is a chronic disease caused by a bacillus, Mycobacterium leprae. Official figures show that more than 213,000 people mainly in Asia and Africa are infected, with approximately 249,000 new cases reported in 2008.
* M. leprae multiplies very slowly and the incubation period of the disease is about five years. Symptoms can take as long as 20 years to appear.
* Leprosy is not highly infectious. It is transmitted via droplets from the nose and mouth, during close and frequent contact with untreated cases.
* Untreated, leprosy can cause progressive and permanent damage to the skin, nerves, limbs and eyes. Early diagnosis and treatment with multidrug therapy (MDT) remain the key elements in eliminating the disease as a public health concern.
* The diagnosis and treatment of leprosy today is easy and most countries where it is endemic are striving to fully integrate leprosy services into existing general health services. This is especially important for those under-served and marginalised communities most at risk from leprosy, often the poorest of the poor.
* Over the past 20 years, more than 14 million leprosy patients have been cured; about 4 million since 2000.
* The prevalence rate of the disease has dropped by 90% – from 21.1 per 10,000 inhabitants to less than 1 per 10,000 inhabitants in 2000.
* Dramatic decrease in the global disease burden: from 5.2 million in 1985 to 213,036 cases at the end of 2008.
* Leprosy has been eliminated from 119 out of 122 countries where the disease was considered a public health problem in 1985.
* So far, there has been no resistance to antileprosy treatment when used as MDT.
* Efforts currently focus on eliminating leprosy at a national level in the remaining endemic countries and at a sub-national level from the others.
