Mitigating the cultural, social and organisational barriers for meeting the needs of patients with major limb loss (MLL) in Northern Uganda

As the world goes through one of the most turbulent periods in its recent history, the health, social & economic consequences associated with 'post-conflict disability' arising through major limb loss (MLL) has gained importance as a significant public health issue. Our preliminary observations and community engagement activities in two post-conflict societies - the Sub-Acholi Region in Northern Uganda and Northern/Eastern provinces in Sri Lanka, have demonstrated this to be an under-appreciated complex and multi-faceted problem characterised by:
a: Lack of suitable services capable of addressing the complex needs of the affected populations
b:Inability of the affected population to access the existing services due to poor transport links, poverty and ignorance.
c: Ad-hoc service development using non-sustainable funding sources at the time (or the immediate aftermath) of the conflict with inadequate characterisation of the needs of the local population.
d: Social-cultural factors and belief systems that adversely affect the day-to-day experiences of the victims and prevent their reintegration into the society.

Influencing and engaging with future policy making in this field therefore requires an integrated approach involving multi-disciplinary teams.

This proposal aims to bring together the 'Humanitarian and Conflict Response Institute (HCRI)' - an institution specialising in global health and 'In Place of War (IPOW)'- an organisation with expertise in conducting cultural programmes in post conflict settings, to focus on the multi-faceted problem of disability associated with MLL in two post-conflict societies - Uganda and Sri Lanka. The project will link HCRI and IPOW with Gulu Medical Faculty (GMF)-established specifically to address the health needs of Northern Uganda, the 'Gulu Referral Orthopaedic Workshop (GROW)' - the only centre providing prosthetic limb services in Gulu district in Northern Uganda, and 'Meththa Foundation UK' (MF)-a charity that pioneered prosthetic services in post-war Sri Lanka using recycled components from the UK and an innovative outreach model for service delivery. The involvement of Geographical Information Scientists (GIS) from University of Manchester (UOM), surgeons/public health officials from Northern Uganda and the Uganda-UK Health Alliance (UUHA) - the official intergovernmental body with a mandate to create sustainable partnerships between the two countries, will strengthen the proposed network. Research output from this network will:
a. Evaluate the impact of arts and social theatre in challenging entrenched cultural views and bias associated with MLL
b: Highlight the harm caused by ad-hoc service development in conflict environments
c: Provide the forum, pilot data, policy options and critical appraisals of delivery systems in low-middle income countries to deal with the rising tide of MLL cost-effectively
d: Fabricate and deliver 50 prosthetic limbs using an outreach service delivery model (successfully implemented in post-war Sri Lanka) and assess its suitability, acceptability and cost effectiveness in Northern Uganda.

The partnership will also create a quality assured environment where UK based professionals and students will be able to undertake short/long term volunteering and student placements with mutual benefits to both countries. The involvement of UUHA and Health Education England (HEE) as project partners creates a window of opportunity to champion the cause of disabled people in the region (and the UK) by influencing training, research, policy making and funding priorities. We submit that the policy documents, particularly those in relation to the feasibility/desirability of outreach prosthetic services in LMICs, will have wider applications in service planning in many other post-conflict societies in Asia, the Middle east, and Africa

In the immediate aftermath of the Ugandan civil war in 2006, the first (and only) orthopaedic workshop in Northern Uganda was developed at the Gulu Referral Hospital with support from aid agencies. To date this centre, (Gulu Referral Orthopaedic Workshop: GROW)) remains the only facility capable of providing prosthetic limbs in this region. The work of GROW is largely supported by AVSI International and the 'Trust fund for Victims' and in its busiest years it saw 300 people/ year, with approximately 1,130 patients seen to date. However this support is now diminishing, leading to a reduction and sometimes cessation of services with a looming crisis. It was in this context that we have undertaken a series of scoping visits to the region to define the nature and extent of this problem and work towards sustainable solutions through innovation, training and capacity building. To date 6 such visits have taken place culminating in a very successful 4-day workshop and outreach visits in November 2016. It was clear through these interactions that:

1.Limb loss was a major cause for prolonged morbidity in Northern Uganda with social, cultural and economic consequences. The full extent of the problem is unknown with every amputee interviewed knowing 2-3 other patients who have not had access to services. As majority of victims are hidden away in remote villages, the size of the problem is hugely under-estimated. The proposed Health Needs Assessment (HNA) is essential in developing a sustainable service for these victims.

2.Cultural beliefs, taboos and negative social attitudes to disability have a considerable impact on the day-to-day experiences and life opportunities of disabled people in Northern Uganda. Theatre and arts have long provided a medium through which a group of people may reflect upon complex social issues and their resolution. The emotions evoked under carefully controlled environments have been harnessed successfully in post-conflict countries such as Sri Lanka and the Balkans, to achieve positive socio-cultural changes. We submit, that by empowering a wide range of local artists, frontline clinicians, patient groups and social scientists this proposal will trigger and sustain changes in societal attitudes to disability. This change will have immediate impact on life opportunities for disabled people in Northern Uganda and beyond.

3.There is an opportunity to establish a quality assured environment in one of the most deprived regions of the world. Such an environment would enable long/short term volunteering, student elective placements and field trials that would benefit the local population - a key vision of Uganda-UK Health alliance and Global Health Exchanges (HEE, UK). Linking the prosthetic facilities in Gulu and Sri Lanka into a single network with a rapid patient turnover will make these units an attractive venue for field trials, training (local and overseas) and other academic activities related to developing low-cost prosthetic technology. Such diversification of activities is essential for the long term sustainability/survival of these units in Uganda and Sri Lanka.

In addition to providing prosthetic limbs to a small cohort of patients (n=50), and thereby having a lasting and immediate impact on their lives, this partnership will seek to use the above project as a platform to also address the wider health & socio-political issues that stem from the current model of ad-hoc service development in post-conflict societies. We submit that the output from this project - particularly the systematic reviews and policy documents critically evaluating the use of mobile prosthetic services in LMICs, will have wider applications across Asia, Africa and the Middle East. The high-fidelity digital maps and data sets generated through the application of GIS technology will be invaluable in future service developments and field trials initiated by governmental and non-governmental agencies.