Rights and Responsibilities: Health-seeking Amongst Southern African Migrants in London, Dr Felicity Thomas

Editor's Notes

• #3: Many states have expressed their recognition of health as a basic human right by signing up to conventions – most notably the Intl Covenant on Ecc, Social and Cultural Rights which recognises the right of everyone to the enjoyment of the highest attainable standards of physical and mental health. Two issues want to examine here – first, while talking about rights to highest standard of physical and mental health – is usually an assumption that there is a universally recognised definition of what health is – and also an assumption that we are talking about biomedicine. If we look at what rights to health include, can see that they involve a range of factors concerning reprodve health and child health, the importance of environl hygiene, prevention of diseases. Also, last point talks about ‘ creating conditions which would assure access to all medical service and medical attention in the event of sickness’ . Again, is usually an assumption that we are talking about biomedical treatments access. Using research with HIV + migrants from Southern Africa in London, want to look today at other forms of undgs of health and medical services that people call upon and then look at the ways in which peoples undgs of their rights to health and their undgs of their responsibilities to themselves and others can have wider health implications.
• #4: The past ten years has seen a disproportionate and rising share of HIV amongst the black African population in the UK. Of all new diagnoses in 2007, 40% were amongst black Afn migrants. A lot of research has focused on experiences of migrants as they seek to access treatment in UK – work almost always set within biomedical framework of undg. Found that main barriers to treatment been seen as stigma assocd with HIV, constraints relating to immigration status and lack of knowledge re accessing health services. For many people, this is case.
• #5: However, for many migrants living with HIV, are several factors which jar with this assumption of a biomedical framework – primarily that such frameworks overlook the fact that people may be coming to the UK with different ideas about health and illness and different experiences regarding treatment access. In case of southern Africa, delays in getting affordable and consistent sources of biomedicine, including ART, have meant that historically, relatively few people from HIV affected countries in region have been able to rely upon such forms of biomedicine - in such situations it is arguably entirely rational to seek out alternative forms of treatments. Also important to recognise that the use of non-biomedical treatments is often integral to African cosmologies - Whilst recognising the wide range of cosmologies which exist across and within different countries and regions of Africa - which regard many types of ill health as having environmental or spiritual, rather than purely biomedical aetiologies. Witchcraft and the upsetting of the anscestors for example, are considered common causes of ill health,– particly amongst Zims - and many of these non biomedical treatments have been found to be effective in provision of physical and/or psychological relief. And linked to this, is the need to recognise that many kinds of treatments do not exist in a vacuum but they carry with them certain associations, meanings and values
• #6: Focused study on three of the communities most adversly impacted by HIV in the UK – zims, sa and zams. 11 focus groups with 70 migrants to get insight into people’s understandings and experiences of health care services in the UK, and their access to, and use of, ‘alternative’, non-biomedical sources of treatment Followed by repeat interviews with 20 migrants from these countries accessing HIV services at London hospl – aimed to gain insight into ways in which social, cultural and economic factors had influenced people’s understandings of their health prior to, and since their HIV diagnosis, and how such factors had oriented them towards seeking particular types of treatment
• #7: Sources of treatment: All had used NHS and over the counter pharmaceuticals at some point. However many people also relied upon other sources of treatment and therapy including church – treatment came through prayer and fasting; tradl healers – mostly based in southern africa – and accessed either via phone or using family and friends as intermediaries; through tradl treatments sent by family and friends - DHL is very busy these days. Also common for people living with HIV to be using various forms of immunity boosters
• #8: So why, when in UK ART is widely available, do people continue to use other treatments? People had genuine belief in efficacy of treatments – fact that they were from trustworthy source (often family in africa) and were familiar to them counted for a lot Quote………
• #9: Idea that really, treatment from home could be just as important as biomedical treatment on offer in UK
• #10: Use of treatments from ‘home’ was felt by many people to be an important means of establishing and reasserting their cultural identity, reaffirming a sense of duty and respect towards the beliefs of their family. Using treatments from home also provided important continuity of links with people and homeland – seemed to be espec important for people who intended to return home (eg South African migrant workers and for people who came from areas where it was deemed important to uphold various family and clan based rituals Was also a suspicion of NHS staff and some felt was a broader agenda at work in UK to supress other forms of knowledge in order to help prop up pharmaceutical indy. Some also had difficulties accessing NHS because of NHS charges and their immigration status.
• #11: Some illnesses were also deemed inappropriate for NHS treatment – thought to require treatment beyond that available via biomedicine. Particly case with issues affecting mental and sexual health – people talked about illness getting worse if left to NHS as the whole ethos of health care was based on very different principles than that on which tradl healing was based. Commonly said that in UK, was an idea that body can be separated into different parts and can therefore treat problem by chopping out infected area. Tradl healing however, offered much more holistic approach and seen as way of healing and cleansing the entire body system. Also seen as safer, with few side effects
• #12: While treatments from Africa were deemed to have many positive elements, is important to acknowledge that some people also used them out of desperation to find a cure for HIV either instead of, but more commonly, in combination with, ART. Case of Susan illustrates how people may draw upon dift treatments over course of time Actually diagnosed before became ill – routine testing when pregnant - Upon diagnosis attended church – intense prayer and lomg periods of fasting – over course of a year – ended up feeling very ill and had weakened immune system - every three months would attend hospital for blood tests – expected that she would be negative – when realised that she wasn’t being cured, she turned to African herbal meds which she was sent from rels at home – although hadnt told them she was HIV+, just said she needed something to help her with her general health and to help her find a job. But her mother suspected she had been witched by a relative so sent treatments she thought would help with this. Then started phoning healer in Zim who she had known whilst she lived there – told her about the HIV. She sent her herbs but Susan didn’t know what they were. Then went to an African healer in UK – took her to Southend and washed her in sea – again though, didn’t mention the HIV. By this time, her immune system was very much weakened and she started on ART. However, when interviewed was also in process of trying to acquire other herbals meds from social networks in UK and Africa to take alongside the ART.
• #13: At same time as tradl meds being used, they also carried with them certain connotations that meant that people found it difficult to discuss their use with their HIV clinicians. Throughout study, was repeatedly commented by participants that conforming to ART as instructed and doing all that was poss to maintain health was considered responsible – by clinicians and NHS staff –and by others in their community. Also a general perception that using modern technology carried lowest risks. Not conforming to instructions of clinicians and experimenting with other forms of treatment widely considered to constitute irresponsible behaviour – made to feel like you were ‘wasting the tablets’ - was widely considered that if you used these treatments when modern pharmaceuticals were available, people would think you were not only backward and archaic, but also irrational and irresponsible – became a risk to yourself and potentially to others. Also seemed to matter what form the treatments came in. Also a commonly held perception that if you took treatment in form of tablets, it would be considered by other people (health workers) as more acceptable and more responsible than taking treatments in more unprocessed herbal form. Idea that because it had been through some form of processing it would be safe and somehow had been regulated – when in fact often not the case. Yet at same time, participants frequently said that they felt that herbal meds were safer precisely because they were unprocessed and therefore more natural! A number of people said they had used other types of meds but were quick to add that they were in tablet form rather than herbal meds – even though they didn’t know what the tablets were.
• #14: Susan – had tried range of different treatments both ART and non-biomedical treatments from Africa and from healers in Africa and in UK. She didn’t speak to her doctor about this because of her worries about what they would think of her……..quote……………
• #15: So, situation exists whereby many people want to use tradl treatments either instead of, or more often, alongside ART but because of these issues regarding perceptions of responsible behaviour, their use has become clandestine activity, and they don’t discuss their use with their HIV clinicians and pharmacists. Why does this matter? First, is some evidence to suggest that some herbals have adverse interactions with ART – can increase viral load (which ART reduces) – in turn leads to people becoming more susceptible to illness and also increases the possibility of them passing HIV on. Partic issues with African potato and sutherlandia, both of which were reported to be used in UK. One African herbal treatment supplier in SA reported that sutherlandia was one of their highest selling items to customers in UK and that they sent around 250 cartons a month. A big issue that was reported was that most people didn’t know what they were taking – just trusted family, friends and healers to send the right thing but they didn’t know what it was – also had no idea on safe dosages of treatment. Also an emphasis amongst those attending certain churches, on fasting – clearly not good idea when taking strong treatments which work best when healthy diet is followed. Also with some health issues like stomach pains – on purging – again, likely to have adverse implications for ART. Use of tradl meds was also found in some cases to lead to people delaying HIV tests – by time they tested, were already very sick and had reduced possibilities for effective ART. Definite feeling that African meds were frowned upon by more formal health providers and this lack of legitimacy meant that treatments were pushed udnerground and not discussed with doctors.
• #16: Want to conclude by raising some questions for discussion that have come out of this research: