#MHForAll Webinar: Stigma and discrimination
Chair: Sue Baker, Time to Change Global
Speakers:
Esenam Drah, Mental Health Advocate and Champion working to address stigma and discrimination with the MH Society of Ghana
Charlene Sunkel – Founder and CEO of the Global MH Peer Network and Co-Editor of the current Lancet Commission on Stigma and Discrimination (2020-2022)
Petra Gronholm, Research Fellow at Institute of Psychiatry, Psychology, and Neuroscience, King’s College, London and the Co-ordinator of a large anti stigma programme focused in low and middle incomes settings (called the INDIGO partnership)
Louise Brookes, Previous Young Champion and Regional Co-ordinator and now CYP consultant for Time to Change programme in England
Key points made:
Esenam Drah: Training can be a vital tool for helping individuals overcome the stigma they have faced, and give back to society by educating others on mental health and discrimination.
Charlene Sunkel: The inclusion of people with lived experience is a human right, we must continue to push for lived experience voices to be heard at every level of policy and service provision.
Petra Gronholm: Stigma is an issue across all settings – but specific concerns, fears, and behaviours are likely to vary across sites, and this is why the interventions need to be specific to each context and culture.
Louise Brookes: Peer support and education helps create a sustainable way to tackle stigma and discrimination.
Sue Baker
Welcome to this webinar, focused on mental health stigma and discrimination which is part of an ongoing series of webinars organised by United for Global Mental Health, Lancet Psychiatry, the Mental Health Innovation Network,MHPSS.net and the Global Mental Health Action Network. This session has been organised in partnership with Time To Change Global (a global anti stigma partnership programme challenging mental heath stigma and discrimination).
Please use the hashtag #MHForAll when tweeting about this webinar – we want to encourage you to tweet throughout. This session will last 45 minutes and is being recorded. Please send any questions to webinars@unitedgmh.org or write them in the chat box as we will have time for a short Q&A session in the last ten minutes.
My name is Sue Baker from the Time to Change Global programme (working with NGO partners and people with lived experience to tackle stigma and discrimination in Ghana, Kenya , Nigeria, India and Uganda and with international NGO CBM, and UK MH NGOs Mind and Rethink in the UK) and I have the honour of chairing today’s session and interviewing the panel of experts, who are:
Esenam Drah, Mental Health Advocate and Champion working to address stigma and discrimination with the MH Society of Ghana
Charlene Sunkel – Founder and CEO of the Global MH Peer Network and Co-Editor of the current Lancet Commission on Stigma and Discrimination (2020-2022)
Petra Gronholm, Research Fellow at Institute of Psychiatry, Psychology, and Neuroscience, King’s College, London and the coordinator of a large anti stigma programme focused in low and middle incomes settings (called the INDIGO partnership)
Louise Brookes, Previous Young Champion and Regional Co-ordinator and now CYP consultant for Time to Change programme in England
Globally, too many people face discrimination, exclusion and other restrictions on their human rights because of their mental health problems.
As well as restrictions in accessing quality and affordable mental health care, many people are excluded by families, friends, communities, employers and schools. Such exclusion restricts their right to education, work and employment, amongst other things.
Many people experience exploitation and abuse, violence, inhumane treatment and even torture, because they have a mental health problem. Stigma is a major cause of this wide-scale discrimination and it keeps people with mental health problems shut out from their communities.
A previous survey amongst people supporting the Time to Change anti stigma programme in England, found that two thirds of people said that the stigma and discrimination they experienced was as bad, if not worse, than the symptoms of their mental health problems.
This session will highlight some of the realities of stigma and discrimination faced by people with lived experience of mental health problems across the world, and share some of the peer-led approaches being taken to tackle stigma and discrimination.
We’ll also explore some of the early findings from the latest stigma research undertaken to inform approaches to address the stigma attached to COVID-19.
Esenam, as a Mental Health Advocate and Champion in Ghana, How has your participation as a champion in the MEHSOG (Mental Health Society of Ghana) project helped you tackle stigma and discrimination in your own community? And how have your experiences of stigma and discrimination helped you with this work?
Esenam Drah
Whilst working as a teacher at a school last October, I was finding the job very stressful and needed extra support at work. I revealed to a senior member of staff that I had bi-polar disorder, and 24 hours later was fired because of my mental health condition. This was the first time I’d experienced stigma and discrimination. The reason this didn’t affect me too badly was because I had received training earlier in the year to be a Mental Health Champion, this training made me realise I didn't need to feel worthless or lonely because I had a mental health condition.
As a champion we engage in social contact events, this involves having conversations about mental health with members of the public and breaking down the stigma of talking about mental health. More recently, due to COVID-19 we have been having the conversations online – while we cannot meet face-to-face. Because of the empowerment I felt from the training and sharing my story, I am now sharing my story via my YouTube channel.
I recently got appointed as a member of the Global Mental Health Peer Network, I am the executive committee member for Ghana and it has given me a new sense of belonging; I really enjoy working with the Africa team that I belong to.
Sue Baker
What kind of activities are members of the Global MH Peer Network involved in, and how are they involved in advocating for the rights of people with lived experience?
Charlene Sunkel
Firstly, the inclusion of people with lived experience is a human right as laid out in international HR frameworks, such as the UN Convention for the Rights of Persons with Disabilities. The Peer Network is an international lived experience organisation and it operates with two key structures; a regional executive committee based on the WHO regions and the country executive committee with representation of specific countries, which Esenam is part of. We currently have 53 lived experience representatives across 31 countries - which makes up our global leaders.
The Peer Network focuses on two main areas; lived experience leadership development and we have developed a shared learning platform to share lived experience perspectives and recovery narratives to empower each other and give peer- support. The members of the peer network collaborate in various advocacy initiatives as well as campaigns.
What makes the peer network a valuable and powerful source of lived experience expertise is it’s diversity in terms of lived experience representation from different countries, different backgrounds, age, race, and skills. They participate in both local and international engagement platforms such as conferences to provide lived experience perspectives and are often involved in reviewing in both local and global policies and strategic documents but most importantly they provide recommendations to guide policy and practice.
For the network to provide the perspectives through lived experience perspectives and their recovery journey gives that valuable insight into what is actually experienced in practice at grassroots level.
Sue Baker
Petra, as a lead author of the COVID-19 Stigma Rapid Review, that looked at cross-sectoral learning and evidence, can you share the emerging recommendations on reducing stigma and discrimination in relation to COVID-19?
Petra Gronholm
Stigma a in relation COVID-19 has the potential to become a global phenomenon that could compound the impact of the virus specifically due to the stigma of people affected by COVID-19. We set out to conduct a rapid review to produce practical recommendations for stigma reduction in relation to the COVID-19 pandemic based on current best available evidence. This work resulted in some recommendations that were grouped within 5 domains. The review will be published shortly.
Sue Baker
Louise, can you tell us more about your journey to support other young people to tackle stigma and discrimination, and why it matters to have young people working together as peers?
Louise Brookes
I started as a young champion then became a regional coordinator, and am now a consultant for Time to Change. With my work at Time To Change I have found that sharing my own personal experience of stigma and discrimination helps me to support young people. My previous experience of having been in a similar situation was paramount for helping other young champions tell their stories. For me working together with other young people's all about collaboration and sharing ideas, I have found that young people often feel more comfortable talking to people of a similar age and often find it easier to open up to peers. It is all about having someone in your corner - which is why Time To Change set up the #InYourCorner campaign.
Sue Baker
Thank you Louise, it’s certainly true that working with peers always makes it easier, especially when speaking publicly about your mental health struggles. Esenam, Appreciating that it can be challenging to speak so publicly - about your own mental health and about stigma and discrimination - how have you prepared yourself for this and what kind of support has been most helpful?
Esenam Drah
First of all, I was trained as a mental health champion, and I took part in spokesperson training where I am taught how to handle difficult questions when you get interviewed, or how to deal with triggering content. I was taught all the skills I need to be able to go public about my mental health advocacy. Also my project coordinator mentored me, as she had been doing mental health advocacy many years longer than me.
In Africa there is still severe stigma when talking about mental health, even recently when I started my youtube channel I had relatives saying that I shouldn't be talking about my mental health condition. I’m glad I had training before this happened because I don't let it get me down.
Sue Baker
As the founder of the Global MH Peer Network, what do you think are the benefits of peer-led approaches both locally, nationally and globally?
Charlene Sunkel
Lived experience voices have been silenced for decades and this even continues today. Stigma and discrimination are some of the main barriers denying people the opportunity to speak out and be involved. But I have seen there really is a growing recognition of the value of lived experience inclusion. Human Rights instruments specifically refer to a society free of stigma and discrimination, and evidence the benefits of peer to peer support and inclusion and involvement.
People with lived experience have unique expertise about their experiences in society’s systems - not just the mental health and health system but all societal systems including education. Lived experience is also vital where human rights violations are occurring in some of these systems, as well as having in-depth knowledge of the services that are leading to recovery and also the knowledge of what is not working or doesn't lead to recovery.
Furthermore reducing stigma via sharing recovery stories creates a human element to mental health instead of looking at a mental health as a label.
Sue Baker
In terms of the INDIGO programme, could you tell us about the importance of local/cultural/contextual adaptation of (Western) evidence-based principles, and why local leadership matters when it comes to anti-stigma intervention planning and implementation.
Petra Gronholm
INDIGO is an International Study of Discrimination and Stigma Outcomes, conducted by an International research network coordinated from King’s College London, which has been active for over a decade. Our current focus is on stigma-reduction research in the LMICs that INDIGO partners with; across seven sites in five LMIC countries: India, China, Nepal, Ethiopia and Tunisia. Collaborating with local leaders in this country has been incredibly important for this work.
The core idea is to take evidence-based stigma reduction principles (based on evidence from HICs), and synthesise these into stigma-reduction interventions that are culturally and contextually adapted for each research site. We ensure interventions are appropriate and meaningful in the varied local contextual, cultural, and healthcare settings.
Stigma is an issue across all settings – but specific concerns, fears, and behaviours are likely to vary across sites, and this is what the interventions need to be tailored to. Understanding these contextual influences requires working with local key stakeholders and experts with insights into the local cultural dynamics, languages, etc. These insights will be used to adapt the interventions for the various sites. We are also developing culturally adapted research instruments, based on established psychometrically sound stigma measures.
Sue Baker
Louise, having worked with schools across England to address stigma and discrimination through a whole-school approach – how have you helped embed this focus within a school instead of this being a one-off activity?
Louise Brookes
When we deliver our workshops to schools, we ask that it is a group of schools working together in the local community rather than just a single school. This means we can deliver the message to a larger group of people, and then they can support each other with the training and after.
The training we do includes an action planning section which uses other campaign examples and asks what the school can do and how they would implement this, giving them planning time during the session. Following our training some organisations and schools then send examples back to us of what they’ve done, eg holding information stalls, speaking to each other more, one group of sixth formers went to speak to pupils in their local primary school about the transition from primary school to high school as they know that can be a difficult time for pupils.
As well as not just being single schools, it is also not just for single head teachers, we use a whole school approach, where the training is given to all staff, anyone from senior management team to teaching support staff and admin and lunch staff. Talking about MH is everybody's responsibility. One school we went to, to offer support for the coming year, had actually already used their previous training to plan out the mental health workshops for the whole year ahead.
Finally, one of the teachers came up to me at the end of a conference and said that hearing my story has helped me realise and think about how I might talk to my own child about it, because they had been struggling with their mental health, and now I understand a bit more about it. Hearing about people working to tackle stigma and discrimination outside of the programme really shows that this is a sustainable approach.
Questions from the audience
There is a myth that persons with a MH condition are dangerous, how can we omit this myth? (From Nepal)
Esenam Drah
Education is key. If people are educated then they will stop believing these kinds of myths. Learning about role models who have a mental health condition will help for others to see how common mental health conditions are. It's not going to happen in a day; it will take some time, we just need to keep pushing the message over and over again.
Sue Baker
It will be the work of a generation to change people's beliefs.
As someone just starting out in MH community advocacy, what advice do you have? (From India)
Louise Brookes
Pick one or two points that you are really passionate about and focus on those.
Esenam Drah
Time to Change have just released a toolkit that will really help. It will be hard at times but do not give up! The WHO says that 1 in 4 people will experience mental health issues in their life, and so helping improve people’s understanding will help prepare a lot of people if it happens to them, or their loved ones. If some of my friends and family members had the knowledge I have today they would have been able to support me better, and I would not have struggled so much in my road to recovery. Everyone should know about mental health because everyone has mental health.
Final remarks
Esenam Drah: Stigmatisation is real, and you never know how real it is until it affects you. Everyone should aim to increase their knowledge on mental health.
Louise Brookes: It is everybody's responsibility to talk about mental health, to try and tackle the stigma and discrimination. The more we talk about it the more the stigma reduces.
Petra Gronholm: It is really important to evaluate stigma reduction strategies so that we can learn as much as possible and keep on developing effective strategies.
Charlene Sunkel: You can create safe spaces for people to talk about mental health, and to develop diverse lived experience leadership, because that will ultimately eliminate stigma at the end of the day.
Poll responses
This session has helped me consider new ways of including people with lived experience in addressing stigma and discrimination.
33% strongly agree
60% agree
6% disagree
1% Strongly Disagree
There needs to be more focus on addressing MH stigma and discrimination in my country that is context-specific.
68% strongly agree
30% agree
1% disagree
Sue Baker
Thank you for listening, and sending in such great questions. Please do check out the Time To Change Toolkit which can be found here. The next #MHForAll webinar will be on the 29th September on World Mental Health Day Campaigns and Activities, with speakers from WHO and World Federation For Mental Health as well as campaigners, sign up here.
