Daniel Sentamu, Dave Baillie and Jim Taylor
“The voice hearing voice group has not only been a place for voice hearers to talk about their voice hearing experiences but a place also to talk about other mental health concerns: in a session we find ourselves talking about medication, life in a mental hospital and stigmatisation”.
I would also not forget to mention the feeling of belonging created by the group among those who attend. For example, Elizabeth was at first a bit uncomfortable with and detached from the group. However, after three sessions, one can evidently see the impact of the group in the ease she has with the group members: in her own words, “I feel at home with you guys”
With that I have no doubt in believing in the potential of this group to be helpful to voice hearers in Uganda and to act as an anchor, as a real alternative to hospital relief, giving assistance to many voice hearers…..”
Daniel Sentamu, voice hearer and co-facilitator of the Kampala HVG.
In January 2012, Jim Taylor, an Occupational Therapist/Psychosocial Intervention Worker with a personal experience of voice hearing, and Dave Baillie, a psychiatrist, arranged a Hearing Voices Group Launch in Kampala, Uganda. Jim and Dave both had experiences of working and training in mental health in Kampala over the past 10 years as part of a link between an East London mental health trust and Butabika Hospital, the main psychiatric referral and teaching hospital in Uganda. It was their experience that voice hearers are often quite isolated in Uganda, where their experiences are seen as occurring as a result of witchcraft or being due to demonic possession, and voice hearers are often seen to have done something wrong and somehow had deserved their experiences. Jim and Dave had also co-facilitated a HVG based in Stratford, East London for some years and could see the usefulness of bringing this approach to voice hearers in Uganda.
The launch was arranged at the National Theatre in Kampala. It was important that the event was not housed at either of the psychiatric hospitals to emphasise the separateness from a psychiatric approach to voice hearing. The event was advertised through the mailing list of a patient run service user group, Heartsounds Uganda, posters in outpatients at the two main psychiatric hospitals, talked about during our monthly Kampala mental health film club, adverts in the local media, and word of mouth.
About 60 people attended the launch. We started with introductions and then a personal testimony from Jim. We then played extracts from the Tanya Byron documentary, “Am I normal? –Spitituality”, focusing on the parts that dealt with HVGs with Peter Bullimonre and Richard Bentall. We then gave a presentation about voice hearing: emphasizing that voice hearing is common in the general population, can have different causes and can be a positive experience. We then spoke of Romme and Eshers work in Holland that led to the first HVGs and discussed the HV movement and principles, emphasizing an acceptance of experience and beliefs of fellow voice hearers; self determination of whether they accessed psychiatric care; groups would be self-help groups not treatment or therapeutic groups; that the movement would be separate from psychiatry, and would not understand their experiences their experiences within a remit of mental illness.
We discussed our own experiences of co-facilitating a HVG in East London. At the time, of the launch, our Link was hosting Richard Mpango, an Occupational Therapist from Butabika in East London on a Commonwealth Fellowship to learn about service user involvement. As part of his experience, he helped to co-facilitate our HVG in East London and covered for Jim, while Jim was in Uganda for 3 weeks. Jim had arranged for our Stratford HVG to make a video message for the Launch in Kampala, and it was particularly lovely for Dave to see 2 voice hearers from the group that he had not seen for several years and a Ugandan colleague extolling the benefits of HVGs in Kampala!
We followed this with an open discussion in which several voice hearers gave testimony about their voice hearing and talked of their understanding of their experiences. One described experiencing voices as spiritual communication, another as having a sixth sense, citing several examples where her voice had correctly warned her of future danger while a third understood it as ghosts that would never leave him. An occupational therapist talked of his experience of sitting with voice hearers, who were initially frightened and distressed, but once the voices persist beyond being commenced on medication, needing to accept the voices as part of their body like a scar, to develop coping strategies and work out which voices were positive and which were negative. It was suggested that it would be helpful for professionals, who claim to know it all, to learn and open their thinking by attending a HVG. The mood was optimistic and hopeful and one voice hearer summarised the thoughts of the group saying, “I can’t wait to join a HVG!” One voice hearer asked about Lugandan speaking groups and we discussed how we could develop Lugandan groups.
We then broke into small groups to think about the practicalities of setting up a HVG in Kampala, particularly thinking about how the HVG concept could translate to the Ugandan setting, and what might be the benefits and challenges. The latter included finding a suitable venue, finding transport costs, finding facilitators and difficulties around language. We closed by agreeing that we needed a steering group and three voice hearers, including Daniel, volunteered, along with a carer and Dave.
A journalist from one of the national newspapers attended, and wrote a very sympathetic article about Daniel’s experiences, under a minimally changed pseudonym and misquoted Dave talking about some of the possible causes of voice hearing! We had further positive contact after this including from Paul Baker, who kindly donated some books and DVDs to the group, which have now arrived with our last Ugandan bound visitor.
The steering group met on several occasions to sort out the practical details. One striking difference to the UK experience of HVGs was that it was immediately a given in Uganda that carers would be welcome and encouraged to attend. The rationale for this was two fold: that they would gain a compassionate insight into the voice hearing experience, that they would see the value in the group and that they could then financially support their relative to attend.
Our first task was to try to find a venue. Many of the voice hearers in Uganda are unwaged, and there is no support for transport, so we wanted to have a central venue that would hopefully allow us to use its premises for free. We could have housed it at either of the two psychiatric hospitals but wanted the initiative quite separate from established psychiatric approaches. Most function rooms in hotels or restaurants charged too much for our very limited funds. A large charismatic church in central Kampala was known to offer rooms for free but feared by many of our group to view voice hearing as a sign of demonic possession or witchcraft, that the voice hearer had probably warranted. It was felt that the main Catholic church was likely to represent a more benign home but after prolonged talks, the church confirmed that “nothing in this world is for free”! As we feared that we were losing the momentum of the Launch, we finally, reluctantly but gratefully, accepted an offer to use a charismatic Pentecostal church in a slum area of Kampala for a minimal fee. However, there were difficulties with this choice from the start. One voice hearer was challenged by a nurse when she put up a poster for the group in a health centre as to why the group was being held in a charismatic church. Muslim voice hearers were unwilling to attend a group at such a staunchly Christian venue. Christians were wary of housing the group at a venue associated with exorcisms and other rituals, some quite traumatic, to rid voice hearers of their voices.
The first week, we only had Daniel, a carer, Linda, her colleague, Jennfier, and Dave there and we discussed the problems with the venue in some detail. Linda admitted to having previously believed that such approaches were appropriate for voice hearers and had encouraged her brother to get treatment there on several occasions: after coming to the launch, she had developed a much more compassionate understanding of her brothers voices, which she had communicated to her family. She found the sight of the large drums, used to accompany the rituals quite distressing, and predicted that voice hearers were likely to avoid the venue. Fortunately, she was proved somewhat wrong the following week, when eight people, including 6 voice hearers attended. We have now had several groups and have finally secured a venue in the emotionally neutral and central National Theatre for free! We look forward to establishing a good group in a good home….
We have worked very hard to keep our running costs to a minimum but we are aware that there are some service users who struggle to secure transport funds to help hearers get to the group. An average transport cost will be about £1.25, so limited money can go a long way. If you are interested in making a donation to support the group: donations and salary deductions can be made via the ‘Donate’ button on the www.bartsandthelondoncharity.org.uk. (The group was set up in collaboration with the Butabika-East London Link).
Please ensure you note that you wish the money to go to “Other, Please specify” and enter “Special Fund 4020”, and let Butabika Link Coordinator Cerdic Hall emailto:[email protected] know that you particularly want to support Kampala’s HVG. Many thanks from Kampala for your crucial support!