Sadly, HIV/AIDS remains a pandemic that afflicts millions of people around the world, with Africa the continent most affected by the disease. 82% of adolescents living with HIV are from sub-Saharan Africa and it remains a leading cause of death in 10 to 19-year olds across the region. In Southern Africa the disease marks huge swathes of the population, particularly in the Kingdom of eSwatini (formerly Swaziland), Lesotho and Botswana – which have the world’s highest HIV prevalence rates. Sentebale is a charity that supports the mental health and wellbeing of children and young people affected by HIV in the latter two nations, as well as in Malawi.
Jacob Ambrose Willson: First of all, talk me through Sentebale’s history since it was established by Prince Harry of the British Royal Family and Prince Seeiso of the Basotho Royal Family.
Richard Miller: During his first visit to Lesotho during his gap year in 2004, The Duke of Sussex fell in love with the country’s beauty but was also shocked to discover so many children’s lives had been affected by HIV/AIDS, and shattered by the loss of a parent and in some cases both.
Together with Prince Seeiso, the younger brother of King Letsie III of Lesotho, Prince Harry set up Sentebale two years later. The Princes chose the word ‘Sentebale’ as the name of the charity, as it means ‘forget-me-not’ in Sesotho, the official language of Lesotho.
The word not only embodies the continuation of both Princes’ late mothers’ work to help children robbed of their childhoods by extreme poverty and the ravages of HIV and AIDS, but also that Lesotho and the plight of its children are not forgotten.
Since its inception, Sentebale has been working to change the tide of the HIV/AIDS epidemic in Southern Africa by placing youth at the forefront of the issues that affect them most and expanded its operations into Botswana in 2016 and most recently, Malawi.
JAW: How does Sentebale work with local grassroots organisations and communities to make a difference for children and adolescents living with HIV/AIDS and in extreme poverty?
RM: Sentebale aims to engage with communities over a long period of time – especially by working with children, together with their caregivers, and young people. Listening carefully to the needs of young people is at the centre of our approach and we also work with local organisations who share our values and ways of working. It is important that our programmes our led by local communities and that they have clear ownership and set the agenda. They will have the best understanding of what is needed.
The charity runs a network of Saturday clubs and five-day camps which provide essential life skills and psychosocial support to youngsters living with HIV, and their caregivers, and run adolescent-friendly HIV testing and counselling services and HIV prevention services.
At camp, children gather for a few days of fun and learning about living with HIV. Children who have never had the chance to talk about their illness, and who had no idea that they were one of so many in their age group, are given the tools and support they need come to terms with their diagnosis and lead healthy and happy lives. 1,230 children are now receiving psychosocial support through 45 clubs in Botswana.
In 2015, Sentebale opened the Mamohato Children’s Centre, a flagship facility that supports the charity’s work with vulnerable children in Lesotho delivering these services.
JAW: To what extent have the network club and camps programmes had a positive impact on HIV sufferers in Lesotho?
RM: The clubs and camps help children build their self-esteem and confidence. This supports children to take their medicines on a regular basis, which is essential to their good health. Children can forget to take their medicines and, once they feel better, stop taking them so it is essential they are supported in this. If they adhere to their drug regime then the chances are, they can live a long and healthy life. The psychosocial support also enables them to remain strong since living with HIV can often lead to depression and, in addition, they may have lost one or both parents.
JAW: Sentebale works on increasing educational opportunities for vulnerable children and those with HIV. How important is this aspect of the charity’s work, in terms of improving life prospects?
RM: Education is the foundation for all development work and so it is very important that we encourage and support young children to remain engaged in mainstream education. The clubs and camps that Sentebale runs can help children living with HIV to deal with issues of stigma and to educate the wider population to support all those who have been affected by HIV.
A whole generation has been lost to HIV and skills and education can help communities recover as well as help prevent new infections – the longer a child stays in school the more likely they are to stay free from HIIV – especially young girls.
JAW: How successful has the Let Youth Lead advocacy programme been in terms of providing adolescents with a platform to voice their experiences and a bridge to policymakers?
RM: Sentebale is passionate about raising awareness of issues surrounding HIV/AIDS in the UK and around the world, and in 2017, it launched Let Youth Lead. This advocacy programme aims to empower youth and give them a platform to articulate these challenges and to engage policymakers to drive positive change in the provision of HIV interventions that better support adolescents and young people.
Since then, dozens of youth activists engaged leaders and decision-makers at district, national, regional and global forums on behalf of youth, worked tirelessly to bring an end to stigma and discrimination, and have made recommendations to combat these issues, including youth-tailored health services and opening hours, better attitudes towards young people seeking healthcare, and adherence to treatment. Since 2017 the programme has trained a total of 68 young people as youth advocates.
Interface meetings between health care workers and youth advocates is one major activity for programme learning and provide a feedback loop in Lesotho. It is through these meetings that health care workers collaborate with young people to document the changes they want to implement – including improving access to Sexual and Reproductive Health and Rights services at health facilities. This growing involvement of young people in the health centre committee meetings has resulted in an improved adolescent and young people participation in decision making within 36 health centres in Lesotho.
In Botswana, Sentebale has partnered with the country’s leading radio station, Duma FM, to deliver a technical skills training programme to a pool of the charity’s Let Youth Lead advocates, as a follow up to the sterling performance of advocates during World Aids Day 2018 when they successfully hosted a six-hour live radio broadcast.
Together, we have conceptualised a hands-on approach to skills development, with Duma FM providing Sentebale’s advocates with a platform to acquire, learn and develop skills that better position them as young professionals. The interactive show, in which both young and adult listeners actively participate, allows advocates to educate and inform the public in efforts to re-brand and destigmatise HIV/AIDS.
This 12-week training programme, advocates say, is contributing to rising their confidence, leadership skills, subject knowledge, and professional skills.
Let Youth Lead advocates from Lesotho and Botswana have also attended several international gatherings on HIV and AIDS, where they worked to raise the voice of their generation through dialogues with other young people, partner organisations, policymakers and key influential leaders in the HIV response.
Most recently, two advocates from Botswana and Lesotho travelled to London to share their experiences with the audience and called for an end to HIV-related stigma during the Sentebale Audi Concert which was attended by The Duke of Sussex and Prince Seeiso.
JAW: In what ways do the founding patrons Prince Harry and Prince Seeiso contribute to the ongoing work of the charity?
RM: Their Royal Highnesses the Duke of Sussex and Prince Seeiso Bereng Seeiso have been very engaged and supportive of the work of Sentebale from the very beginning. They have visited many of the programmes, supported fundraising efforts and have used their profile and position to communicate about the work of Sentebale and the impact of the HIV/AIDS epidemic. They have helped to promote a positive message that change is possible and that AIDS is no longer a death sentence with the right treatment and if stigma and discrimination is reduced.
The most recent engagement that the two Princes attended was a fundraising Concert at Hampton Court Palace with performances by Rita Ora and others. This helped celebrate Southern African culture and Sentebale youth advocates from Lesotho and Botswana spoke passionately about the work of Sentebale. The presence of our founding Patrons gave a high profile to the occasion and ensured we raised over £300,000 for the work of Sentebale.
JAW: Finally, how will Sentebale continue its good work helping vulnerable children in Southern Africa in the coming years?
RM: Sentebale wants to focus on building the quality of its work, documenting and learning from our practice and then sharing our learning with other similar organisations in Southern Africa. We would like to be a Centre of Excellence that helps like-minded organisations and, at the same time, learns from their experience. We want to keep focused with a high impact rather than spreading ourselves too thinly.