Awareness in paediatric and adolescent endocrine disorders is increasing in Ghana and as a result more patients are being diagnosed and referred to the Paediatric Endocrine Clinic, Komfo Anokye Teaching Hospital (KATH). This is the only paediatric endocrine clinic in Ghana with two paediatric endocrinologists trained through PETCA/PETCWA program based in Nairobi, Kenya and Lagos, Nigeria. Patients with endocrine disorders from throughout the country are referred to the clinic. The clinic started in 2012 with one patient but now has a total of 450 patients with various endocrine disorders including one hundred and two children and adolescents with diabetes. Children and adolescents with diabetes receive support from Life For A Child (LFAC), IDF, Australia. They are supplied with insulin, lancets , insulin syringes, glucometers and strips. We also have HbA1C machine donated by LFAC. We therefore do their HbA1C every three months. All these supplies and services are given to the patients pro bono. As a result the frequency of DKA admissions have dramatically reduced over the past one year.
However, there is no support for patients with other endocrine disorders. Support from the national health insurance scheme is almost negligible for endocrine patients. They have to pay upfront for all investigations and medications and this is difficult and almost impossible for most of the patients. Almost all the investigations and the medications for endocrine disorders are provided mainly by private laboratories and pharmacies. Non availability of requisite investigations and mediations couple with patients’ inability to afford even the few basic ones available makes fluent management of endocrine patients extremely difficult and frustrating. Hydrocortisone and fludrocortisone needed for managing patients with congenital adrenal hyperplasia are not on Ghanaian pharmaceutical market. Patients are however, given prednisolone, which is readily available. We have diagnosed four patients with growth hormone/pituitary deficiency. Two have pituitary agenesis while the other two have intracranial tumours pressing on the pituitary. There is no growth hormone in Ghana and interactions with the pharmaceutical companies have not been helpful. Parents of patients are unable to afford the importation of growth hormone from outside Ghana. Those with intracranial tumours can not afford the cost of neurosurgery even in Ghana.
Ghanaians do not embrace chronicity of diseases. They usually think endocrine disorders are either spiritual diseases or are simply not diseases that can be managed in the hospitals. They, therefore, seek spiritual assistance by going to prayer camps or seek second opinion from herbalists. To counter the effect of these belief and practices from the patients we do a lot of education to the patients and their families. We have had cases where patients doing very well on supervised management from the clinic stopped and went for spiritual and herbal treatment and worsened, those with diabetes got into DKA and the spiritual and herbal practitioners quickly advised them to come back to us. After managing them we used the situation as an opportunity for further counseling. The situation is improving as we make our counseling more practical with regard to patient behavior and practices. However, it will take a long time for patients to accept that endocrine disorders are just like any other medical disorders and they can be managed, given the right facility and resources, to improve quality of life of the patients.
Misdiagnosis and mismanagement of endocrine disorders among children and adolescents with endocrine disorders are still common in Ghana. Almost all patients with type 1 diabetes, seen in our clinic, have been treated solely with oral hypoglycaemic agents by their primary doctors.
Considering the enormous work in paediatric endocrinology in Ghana and lack of knowledge among health practitioners, poor health infrastructure coupled with patient attitude and belief towards endocrine disorders we decided to form Ghana Society of Paediatric Endocrinology and Diabetes (GSPED). Membership consists of two paediatric endocrinologists, two regular nurses in the clinic and some educated parents. We have invited anybody, especially health workers with passion for children with endocrine diseases, to become members. The core aims are education, advocacy and research.
We decided to do update courses for health workers in Ghana in paediatric diabetes and other endocrine disorders in 2015. We appealed to banks and many pharmaceutical companies to help us with this noble idea and course. Eventually, no bank or company supported us. We finally went ahead, without money and we were able to organize one of the most successful conference in Ghana in paediatric diabetes (photographs attached). One hundred and twenty participants from across the country attended the conference. The participants were doctors, physician assistants, nurses, nutritionists/dieticians etc. It was a two-day workshop and we charged participants some little fee to defray the conference cost. We finally made a profit of about one thousand US dollars (equivalent in Cedis).
Some of our patients are not able to afford lorry fare to the clinic. We use part of this money to support them. We also do some basic investigations to support patients and also to enable us arrive at diagnosis.
In 2016 we will do more education to health workers, to patients and to communities.
By Dr Emmanuel Ameyaw, FWACP, FESPE Paediatric Endocrinologist.