For the final part of the world conference I attended the symposium on marginalised populations. You may remember my comments from the ZAMSTAR blog about the ‘real’ TB community. So I was very interested to attend this symposium .Marginalised populations often represent the ‘real’ TB community within the general population. Often these communities are largely uneducated and discriminated against. Consequently they find it difficult to seek and receive treatment and negative health prospects are associated with this.
Every community has marginalised populations. These can be produced through certain behaviours such as injecting drugs or beliefs such as the religion they follow. These groups are on the edges of society so as a result can be difficult to reach through traditional routes such as: nation programmes and broad community interventions. Marginalised groups are important to reach because certain groups can possess a high prevalence of active TB. Due to these high prevalence rates they pose a significant danger for undermining TB control. For these reasons alternative interventions are required to help reduce TB prevalence within these groups.
The symposium brought up the issue of knowledge. Current knowledge of the prevalence or severity of TB within certain marginalised groups is insufficient. This is because data is rarely disaggregated from the national data collection. Also a lot of these groups are ‘off the grid’ therefore no data is able for collected and analysis. This makes tackling the problem all the more difficult because we don’t know how bad the problem is or where to target certain interventions. More effort needs to be made to obtain data for these groups.
One project aimed to empower and involve community groups in hard to reach slums. This involved a two pronged programme. The first prong consisted of community referral network. This involved training individuals within the community. Training allowed individuals within the community to detect TB symptoms and refer the at risk individuals to a clinic for diagnosis. A target group for carrying out this intervention were shoeshine boys; once trained they would be able to refer customers who displayed symptoms for TB. When this intervention was analysed it showed an increase in number of people referred within the community to health care centres. The second prong aimed to provide training for pharmacists to detect symptoms and refer patients. This showed a positive influence on treatment behaviours when compared to non-trained pharmacists. The importance of training was further emphasised by an interesting talk by the Unions Subrat Mohanty who said training was a major focus in community activities involving sputum collection and development of a patient charter.
The final talk of the day was by Andrew Hayward from NICE UK. Andrew and his team identified that the clinical guidelines for TB care were limited. This was because the guidance panel was dominated by physicians. Therefore a balance was required in order to improve the clinical guidelines for TB care. This balance was achieved through the involvement of multiple stakeholders. Some interesting observations were produced as a result, such as: services did not always support treatment and as a result treatment for TB was difficult for patients to access. Secondly more find and treat methods were required to find vulnerable individuals within the community. These improvements were achieved by involving expert patients who provided a patient voice for the development of the new guidelines. This shows a great way to get people from different disciplines to work together to produce better guidelines for TB treatment. These guidelines would be tailored to the TB population and hopefully treatment success would improve as a result.
The importance of participation can’t be understated. In order to develop the most effective services everyone needs to be involved. Participation of patients is the only way to ensure that services will fit the needs of the people who use them. I have the feeling that too often decisions are made solely by clinicians and policy makers. These groups can’t always relate to the needs of marginalised populations within society. If these groups are not listened to then there needs will forever be ignored. How is a clinician supposed to relate to an injecting drug user who lives on the street? I don’t know what they want/need in terms of services and I don’t think many other people would know. This means marginalised populations will remain ignored and stuck in a dangerous cycle of discrimination and under-provision.
That’s it from me