Former President of the Saint Lucia Sickle Cell Association (SSCA), Paula Calderon, has expressed the opinion that the organisation is being ignored.
“We have been trying to meet with the Ministry of Health to discus points which have not been dealt with for over ten years now. We were hoping that this government would take a greater interest in our needs and we have not yet heard from them,” Calderon disclosed.
She said the association would like a meeting with the ministry to discuss matters that have not come to fruition and are keeping back the work of the SSCA.
The former president observed that there is a memorandum of understanding that has been outstanding for more than a decade.
“We have not had any discussion with regard to the new Medical Doctor that is taking over the outreach programme that we implemented and which the ministry followed suit on,” she stated.
“We were the first ones to do an outreach programme before the ministry started – because our Doctors did it for free and the Doctors thereafter were paid,” the former President said.
She disclosed that one of the outstanding issues that the association would like to discus is the fact that many persons who suffer from sickle cell disease have to pay when they visit the hospital.
“We had a card which each sickler had which meant that they were unable to pay fees – that has not been discussed, it was just removed and taken away,” Caleron said.
She noted that some things were done without consultation with the association.
“I am kind of frustrated to have reached the level that we have and we cannot move forward without certain support, so we have requested a consultant to do some work for the association in order for it to move forward. We have written letters requesting assistance to look at that,” Calderon said.
She observed that finance has been a major problem.
Calderon said it has been suggested that younger Doctors be sourced to assist the association, but observed that is is difficult to get Doctors to do work for free.
“At the end of the day it might be that we may not have an association that can do the work for its members, and what we have done over the years is the education and the treatment, having the contacts outside of Saint Lucia where we can send our patients and that is done mostly through Doctor Bird and it is still being done through Doctor Bird and the contacts we have overseas,” she explained.
However Calderon said that the association does not have the finances that it had before to pay for medication, school fees, meals, uniforms and health care.
The former President said that from the time the association was launched, it requested but has been unsuccessful in obtaining the statistics that it wants.
“We provided the hospital with a programme that identifies our sicklers – it identifies what they have whether it is SS or SC or AS. We are supposed to be getting yearly reports from the lab – that is not being done.That has been stopped,” she disclosed.
According to Calderon, nothing can be done without data.
“I cannot go internationally and beg for money without data,” she declared.