More than one in four refugees and asylum-seekers in the UK are thought to have experienced torture in their countries of origin. Increasing numbers are presenting to NHS services with persistent pain, often of muscle, bone or joints (musculoskeletal).
New research finds that UK healthcare services are not meeting their needs, and suggests that better integration between physical, social and mental health services would help.
There has been little research into how best to treat people who have survived torture and are in pain. In this study, researchers explored the experiences of 13 people treated at a specialist pain clinic in London. Participants reported lacking involvement in decisions about their own care; receiving multiple diagnoses and unsuccessful treatments; and finding that physical and mental health services were disconnected. These experiences led to confusion, frustration and a sense of hopelessness.
The researchers say that healthcare providers should ask, when speaking to refugees and people seeking asylum from certain countries, if they have experienced torture or ill-treatment. This is a first step to understanding what may underlie their chronic pain, in order to treat it more successfully.
What’s the issue?
The United Nations defines torture as the act of a public official to intentionally inflict physical pain or mental suffering on someone (or to condone the action). It is outlawed internationally but continues in more than 140 countries, both war-torn and in those without conflict.
There are approximately 195,000 refugees and people seeking asylum in the UK. It is not known how many of them have experienced torture, but estimates range from one in four to almost half (27% to 44%) of refugees and asylum-seekers in countries like the UK.
Around four in five (80%) of those who survive torture are left with long-term pain. The pain is often musculoskeletal – of head, spine and limbs – but abdominal pain is also common. People who have survived torture are also likely to experience psychological difficulties, including symptoms of post-traumatic stress disorder (PTSD), anxiety and depression. The consequences can be long-lived and disabling.
There is currently no evidence to support any specific intervention for managing pain in people who have survived torture. While some refugee healthcare charities exist, they often focus on psychological rehabilitation. People with persistent pain are likely to be treated by mainstream pain management services in the NHS, which may not be equipped to manage their needs. Little is known about the success or otherwise of the treatment they receive.
This study was intended to begin to understand the healthcare experiences of people who have survived torture, when they seek treatment for persistent pain.
The research was carried out in 2018 at a specialist pain management clinic for torture survivors in London. Most patients at the clinic were from Middle Eastern and South Asian countries including Iraq, Iran, Syria and Afghanistan. Others came from North and East Africa and Eastern Europe. The study included 13 adults (two women and 11 men) who had musculoskeletal pain. They all spoke English or Arabic.
Researchers used a mixture of methods intended to avoid causing undue psychological distress. These methods included review of their medical notes, sitting in on consultations, and interviewing participants about their experiences.
Three themes emerged from the data:
- A lack of active involvement from patients in decisions about their treatment. This seemed to come from patients’ respect for medical authority and trust in their expertise. However, repeated unsuccessful treatments led to disappointment and eroded this trust over time.
- Multiple diagnoses and unsuccessful treatments. Patients tended to see one specialist at a time, each considering one aspect of their pain. The specialists often gave biological explanations, such as disc bulges or degenerative joint changes, without taking patients’ experiences of torture into account. Participants in the study had been offered a range of treatments including exercise, painkillers, steroid injections and surgery. The treatments were frequently unsuccessful, and some had side effects. Numerous diagnoses and unsuccessful treatments left many disheartened and sceptical of improvements in future.
- Poor integration of services. All participants had psychological conditions (PTSD, depression or anxiety disorder) as well as physical pain. Physical and psychological conditions affected each other and could affect their access to treatment – for example severe depression was cited as a reason one patient was not eligible to take part in a pain management programme. Poor communication between services resulted in lost referrals; this led to a delay of five months before one woman received treatment.
The study also found that the circumstances in which participants were living in the UK, made treating pain more difficult. They described difficulties with their immigration status, housing, accessing medical services, poverty and ability to work. For example, one participant said that worries over her visa led to reliving her previous experiences, and that triggered her pain.
Why is this important?
This small study provides a first insight into the experiences and needs of a group of people with complex needs, whose pain is difficult to treat. This is a step towards understanding how healthcare services might better meet their needs.
A more active clinician-patient relationship will require better understanding of cultural differences. Participants expressed their views on treatments to researchers, but they were more passive when speaking with clinicians, showing respect and avoiding conflict. In addition, unconscious bias needs to be addressed. It might mean that clinicians are less likely to encourage participation from this group of patients compared to others.
More joined-up services would help, as would guidelines on the treatment of pain in people who have survived torture. There are no existing guidelines. A Cochrane Review of evidence from 2017 found ‘insufficient evidence to support or refute the use of any intervention for persistent pain in survivors of torture.’
Integrating healthcare services and delivering person-centred, co-ordinated care has been an NHS priority for many years. The study found that care provision for torture survivors with persistent pain is not yet meeting the required standard. This group of patients have particularly complicated and interwoven social, psychological and physical needs and would benefit from integrated services.
Trying to treat pain in isolation, without knowing about or exploring the patient’s experience of torture, is unlikely to succeed. For this reason, the researchers suggest that clinicians need to be aware of the possibility of torture experience for people from countries where it is known to happen. This can be followed by gentle enquiry. Questions such as ‘Can you tell me why you came to the UK?’, ‘Were you ever treated badly in your home country?’, or ‘Have you ever been arrested or put in prison?’ can help to open a dialogue on possible experience of torture.
Clinicians may also reflect on the potential for unconscious bias in their practice and employ strategies to help them understand torture survivors’ points of view.
You may be interested to read
The full paper: Board D, and others. Torture-survivors’ experiences of healthcare services for pain: a qualitative study. British Journal of Pain. 2020. doi: 10.1177/2049463720952495
The Freedom From Torture charity website includes information about therapy and support for survivors of torture
A paper on assessing and treating pain in this group of patients. Williams A C de C and Hughes J. Improving the assessment and treatment of pain in torture survivors. BJA Education. 2020;20:133-138
The Cochrane Review: Baird E, and others. Interventions for treating persistent pain in survivors of torture. Cochrane Database of Systematic Reviews. 2017;8:CD012051
This research was funded by a NIHR Master of Research in Clinical Practice award.