A Patient Advocate’s perspective: Society for Neuro-Oncology Sub-Saharan Africa inaugural meeting

By 12th September 2018 September 25th, 2018 IBTA News, SNOSSA

In the second in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, nurse and brain tumour patient advocate Derick Agbor gives his reflections on the event:

Jacob's Hope Foundation logoThe first SNOSSA meeting was an event that brought great minds together to ponder on the achievements made so far and the way forward for brain tumour care. Improving the quality of care while equally advocating for people suffering from brain tumours/cancer was a key note of this meeting.

The first day of the SNOSSA conference was marked by presentations of different diagnostic and therapeutic procedures of gliomas. A high rate of success in diagnosing and treating these conditions was demonstrated by all the speakers, thanks to advanced techniques they employ. Notwithstanding, numerous situations still exist that make it difficult for patients to be diagnosed early and to access care.

Deliberating the challenges faced by brain tumour patients in Sub-Saharan Africa

Time and energy were focused on deliberating the challenges faced by brain tumour and cancer patients in various countries of Sub-Saharan Africa, whose cases often go unnoticed or are misdiagnosed. So many reasons were put forward by delegates, amongst which is the lack of knowledge about brain tumours and different types of cancer in sub-Saharan Africa communities

Poor health policies in some countries are making it difficult for people to access care, due to monopolies and bottlenecks. Moreover, in some countries there are very few publications that address brain tumours/cancers, which are a means by which individuals can enrich their knowledge on brain tumours. To some extent, advanced technology for the handling of cases is absent in many countries and even when it is available, paying for equipment maintenance is an ongoing issue. Financial difficulties are a key reason for these problems and very few citizens can afford this advanced care. This is a major reason why referred patients always can end up not going to treatment centers to receive care.

It was felt that individuals’ belief systems are equally a barrier to care, since many people will prefer traditional therapy or visit ‘men of God’ because they believe that brain tumours have a spiritual origin. Most importantly, there is always the tendency in the majority of cases for health care providers at the peripheral level to misinterpret the diagnosis of a brain tumour. This is seen in the numerous patients who visit many health facilities with their brain tumour going undiagnosed.

Attendees to the first SNOSSA meeting

Deliberations continued into the second day, which explored bridging the gap that keeps people away from care. Some major conclusions were made. These included making efforts to intensify communication in the community through social media and all avenues necessary. Getting stakeholders in brain tumour care to be part of this sensitisation movement may go a long way to bring an end to the bottlenecks that exist. It was felt that learning from brain tumour advocacy strategies practiced in other countries would make it easier to develop a model that will work across the region. Furthermore, it was highlighted that a multidisciplinary strategy is very important in the future fight against brain tumours and other cancers.

With the current challenges faced today in brain tumour care in Africa, this meeting was ideal ground for fruitful deliberation on the way forward.


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