Two sisters Sandy Ayivor and Gibeleen Amponsah Ninpong are hoping to change the face of sickle cell care in the country within five years.
This they hope to do through their GNS (Gibeleen & Sandy) Foundation.
Ghana’s foremost sickle cell clinic is a one block facility comparable to the ones used as clinics in villages.
The most worrying aspect is that the same facility is supposed to be the Ghana Institute of Clinical Genetics.
The Institute is supposed to be the leading center for diagnosis and care for persons suffering from genetic conditions or ones inherited.
Even though the Institute has some of the best brains in clinical genetics running and working in the facility, they have been reduced to providing only sickle cell care.
A former Director of the Institute Dr. Edeghonghon Olayemi says the GNS Foundation first contacted the clinic and demanded to know the challenges of the company.
He revealed that a list of the challenges confronting the clinic was submitted to GNS Foundation and revealed that they were surprised when the two sisters returned to make their first donation of laboratory consumables.
Top on the list of things the Ghana Institute of Clinical Genetics expects the GNS to help them improve is the deplorable infrastructure available to them.
Dr. Edeghonghon Olayemi said space is major challenge at the facility.
“Apart from the accountant there is no other person who has a personal office; every other person who had an office has been converted to an outpatient clinic.
Our clinical psychologist sees patients in her office, we see patients in the specialist dermatologists office, the office of deputy Chief Medical Officer’s office has also been converted to a clinic,” he disclosed.
So serious is the issue of a structure befitting even the status of Sickle cell clinic that Dr. Olayemi says their patients are suffering for it.
“One of our patients this morning was complaining to me that when she has crisis at night she has to wait until morning because we do not have 24 hour services here; so if we could expand the place so that we could have in patients even expand our labs.
“One of the complications of sickle cell disease is sickle cell leg ulcer and we don’t have anywhere to dress the ulcers so our patients have to dress their ulcers and the results are not as you expect; so people have these leg ulcers for three to five years and is not healing and we suspect that probably they are not doing the right thing on their own. So if they could come here and we have a dressing room where that could be done for them then that would go a long way to help our patients,” he stated.
To put things into proper contest, there are over 10,000 sickle cell patients across the country and they are all ideally supposed to be catered for by the Adult Sickle Cell Clinic.
Director of the Ghana Institute of Clinical Genetics Dr. Yvonne Dei-Adomako says the situation is worsened by the fact that majority of sickle cell patients are unable to afford the services of private medical facilities.
She said the facility is struggling to provide the quality of service the patients need.
“Right now we run the Institute with the very little subsidized monies that we collect from the patients which is really very little and not enough to do a lot of things.
We need to expand the Consulting area to accommodate our patients; if you look the benches where patients who come in crisis lie, in the cold they are sitting outside. We need to provide an environment where will be comfortable for these patients. They need special care and that is what we want to provide for them in the Institute,” the Director of the Clinic said.
Dr. Yvonne Dei-Adomako was particularly unhappy with the seeming lack of support from government.
“This is a government institution so we expect there will be a lot of support from the government to help us run the Institute,” she said.
Until government comes in, the two sisters Sandy and Gibeleen are hoping the five year plan they have put together unravels as planned.
To demonstrate their commitment to the plan, they have already made two donations to the clinic which of items that the clinic has identified as challenges and asked the GNS Foundation to support them with.
The first were laboratory consumables with the second being what Sandy described as “high spec” computers.
“These are some of the things that we need to do for them so this is like part of the five year plan; by the end of the five year we should be able to tackle as many of the issues as we can,” Gibeleen Amposah Ninpong disclosed.
Sandy Ayivor said the challenges listed ranged from “petty” to “scary.”
Some of the them are things that one individual can come in and just take care of it; some of them are that huge that I think that you need massive sponsorship or let’s say the government but you realize that every time people say they are waiting for the government, things will never get done,” She explained.
She further indicated that some of the issues “are too big for GNS but we know that we have God on our side and we started handling the issues one by one; we’ll see how far we can go and we know by the grace of God other sponsors will also come on board and support because if we have more hands, nothing is impossible.”
The scariest challenge the Gimbeleen & Sandy have identified is the plan to construct a befitting edifice for the clinic and institute.
“If you see their database thousands of patients but if you see the structure and the number of people who have sickle cell then you wonder what happens to the patient,” Sandy said.
Gibeleen added “one that we also realized is that they don’t have a male and female ward if the patient comes in here they all share the same ward and we don’t think that is right.”
The two sisters however admit that such a project is too capital intensive for them to handle on their own and are seeking support from corporate bodies to execute that task.
“I know the monies some of these companies especially in the Telecom industry put into their Corporate Social Responsibilities can be used to put up a very nice edifice and when they start like that people will also come and support,” Sandy believes.
“Anybody can just join; you don’t have to bring in a million pound or cedis, all we are asking for is the little that anybody can do to help in terms of support, time we will really appreciate that. We are just asking everybody to come and help us help this people because they are helpless” Gibeleen pleads.
Until then the two sisters remain committed to improving sickle cell care in the country by revamping the institution that has been established to provide world class care to the patients.
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