The management of pain in victims of torture: resources that support understanding

In a recent edition of the journal Board et al. ¹ write about the experiences of torture survivors who attended a specialist pain clinic. Recently I was listening to a recent series of Slow Burn ² which focuses on the build up to the United States invasion of Iraq in 2003. The first episode described the torture by foot whipping used by the Secret Services under Sadam Hussain’s direction. Listening to the episode transported me back to my early days as a nurse working in a chronic pain team in the UK, in the late 1990s when I first came across the after-effects of this form of torture. The gentleman did not speak English, did not understand the culture of the National Health Service, but arrived with a hope that we would be able to help. I am not sure how my colleagues, who were all far more experienced than I felt, but I was completely lost. It was not just the pain he continued to experience without cease, but the trauma associated with it that had never abated. I simplify the experience, but we could not help, and he was angry, frustrated, isolated and distressed. The serendipitous event of reading Board et al. and listening to Slow Burn made me want to explore the history of our attention to complex pain associated with torture. When did ‘we’ begin to recognise this as a specialist area, begin to study it, and begin to disseminate understanding of it in the pain community?

A personal communication from Professor Amanda C de C Williams informed me of the interest and promotion of this area of pain management by Patrick Wall, Fernando Cervero and Troels Jensen with attempts to form a special interest group for the International Association for the Study of Pain (IASP) prior to 2002. The IASP SIG on Pain from Torture, Organised Violence and War (SIG TOVW) was founded by Professor Williams in 2004 and has hosted business meetings at every World Congress since that time. IASP and the British Pain Society (BPS) have both included issues relating to torture in their conference programmes over the years. In 2007 IASP dedicated the October Pain Clinical Update to pain in the victims of torture, pointing out that very few victims had access to the specialist services they needed. In 2008 Inge Genefke delivered the John D Loeser Distinguished Lecture titled ‘Pain and Suffering Following Torture’ at the World Congress and there was a workshop hosted by Professor Williams, Phil Lacroux and Marie-Claude Gregoire. The IASP SIG ran satellites sessions at the World Congress in Milan (2012) and Boston (2018). Professor Williams has delivered plenary sessions for the BPS at the ASM in 2006 and 2015. Parallel sessions have been hosted by in 2003 (by Bill Mcrae, Juliet Cohen, and Phil Lacoux), 2006 (by Shoma Khan and Eileen Walsh) and as part of a parallel session about cultural diversity in pain management services in 2015 (by Susan Childs and Bianca Kuehler).

Inge Genefke is probably the best known and earliest pioneer of work with victims of torture. Her formally recognised work began in late 1960s. She, and a large multidisciplinary team of medics, physiotherapists, psychologists, dentists, and social workers set up a working group with Amnesty International in 1974. From this grew the International Rehabilitation and Research Centre for Torture Victims at the Rigshospitalet (Central Hospital) in Copenhagen, which opened in 1981. ³ The intention was to provide treatment for up to 200 victims of torture annually. From this initial start there have grown 160 member centres of the International Rehabilitation Council for Torture Victims in 76 countries that treat more than 60,000 victims of torture every year. ⁴ The website is a fantastic resource with an annual report focusing on a specific issue as well as access to research, personal stories and clinical guidance linking to other key materials such as the Istanbul Protocol which provides guidance for medical assessment of alleged torture victims. Now, more than ever, we have support to understand pain in victims of torture.

The complexity of the pain experience for victims of torture is probably self-evident and we know that the symptom burden is extreme in comparison to other groups of people experiencing chronic pain. ⁵ What Board identifies as a key barrier for the participants in his study is the cultural barriers that prevent effective communication and engagement. Other studies have identified and worked on combined approaches to target Post Traumatic Stress Disorder combined with chronic pain, for example Narrative Exposure Therapy alongside physiotherapy. ⁶ The difficulty we have is that there are thousands of studies but very few that are sizeable and robust. A 2017 Cochrane review was able to include only three small studies in a review of interventions for treating persistent pain in survivors of torture, and was not able to confirm benefit. ⁷

The Board et al. paper is important because it systematically explores the experience of the victim of torture attending a pain clinic. The principal investigator in this study is Daniel Board, a physiotherapist, who used an ethnographic approach and included 14 participants. He sets the scene for clinic attendance by these survivors, with an introduction that explains how they may be difficult to engage for a host of reasons including fear of deportation. The background literature selected shows that despite high prevalence, pain may fail to be recognised outside of the complex psychological problems that the person will present with. The clinic observations, interviews and medical records examined in this study were thematically analysed to generate three main themes; the patient-clinician relationship, multiplicity of diagnoses and treatments, and lack of service integration. Overall, the patient’s experience of the clinic was challenging as a deferential attitude and difficulty in finding a helpful therapeutic strategy and poor integration of different parts of the health service often led to dissatisfaction.

In summary, the literature provides us with an opportunity to understand the experience of the victim of torture, but we will have to work hard to help that person engage with a service that is less than satisfactory before we add in layers of psychological distress and poorly understood cultural barriers. This is a specialist area that we need to understand, and fortunately, through groups such as the IASP SIG TOVW and the IRCT organisation we can do so.