World Hearing Voices Day: Awareness and Action from Lived Experience

Please tell us a bit about yourself and your role at Leeds Mind

Max: My name is Max and I’m a Peer Recovery Support Worker. I support those with complex psychosis through my own lived experience of mental health challenges. This involves giving people a space to talk about their voices in a non-clinical setting without fear of judgement whilst demonstrating that people can be successful despite their mental health experiences. As someone who has experiences of voice hearing and complex mental health, I feel it is important to have someone to talk to who is able to relate and share their own experiences.

Maria: I am Maria and I work for Leeds Mind as a Peer Support Recovery Worker. I work in partnership with Leeds and York Partnership NHS Foundation Trust (LYPFT) as part of the Complex Psychosis Pathway and have done the role for nearly 3 years. I provide peer support to service users whilst they are inpatients, and also whilst they are in the community to support that transition. Part of my role is sharing my own lived experience of mental-health conditions in order to help others foster a sense of hope, self-determination and confidence that they can recover from dark times. This role is particularly significant to me, as my mother was diagnosed with paranoid schizophrenia when I was aged 7.

I have also had a close sibling who experienced psychosis whilst I started the role. I am so grateful to be part of such an understanding, warm and compassionate team that truly know how difficult it can be to witness a loved one going through a major crisis in their mental health. Due to these personal experiences, it is really special to be able to help those struggling with psychosis and support them to recover. I know from my family’s experience what a profound impact psychosis/voice hearing can have on shaping the trajectory of someone’s life. These experiences have shaped me into the professional I am, as I know first-hand what good quality care means to those in recovery from psychosis. It’s incredibly important for those struggling with hearing voices and unusual experiences to be treated with care, compassion and understanding whilst they go through some of the hardest parts of their lives, as this is where hope and transformation can begin. 

Can you tell us about World Hearing Voices Day and why it’s important?

Max: Hearing voices is still widely misunderstood and often associated with negative stereotypes.  It’s something that people can be fearful about but by listening to real stories of individuals who have unusual sensory experiences it can help break down the stigma and show there’s more to hearing voices than the caricature we see in films and TV.  
 
World Hearing Voices Day is important as it helps promote a deeper understanding of the topic whilst allowing those who do hear voices to feel supported and safe to talk about their experiences openly. 

What would you like employers to know about hearing voices and unusual experiences?

Max: Hearing voices is not always an indication that someone is unwell. People who have these experiences aren’t inherently dangerous or incapable, nor does it mean they lack insight or judgement. Many have a wide range of skills, talents and abilities and with the right support can thrive in the workplace. 

You’ve recently started facilitating a Hearing Voices Support Group. Who are these groups for? Is there any criteria to be able attend? 

Maria: Yes, we have!  It has been great to have it back up and running after a long pause. These groups are for anyone who hears voices and/or has unusual sensory experiences. There is no need for a formal diagnosis, as anyone who wants support with their experiences is more than welcome to attend. It is a self-referral process to attend the group. Unfortunately, we're not taking more referrals for this group as it's already begun and runs until December, but people will be able to join the next cohort if they are still interested.

Check out the Leeds Mind Peer Support page for more information

What might attendees expect from support groups such as these?

Maria: People can expect a really safe and supportive space where everyone’s experiences are valued and respected. It is a space of connection and community, where those who feel very isolated in their experiences can feel less alone in it. We use a model called ‘taking time’ for the support group, which allows everyone to have an opportunity to share. Myself and Sue (Leeds Mind Colleague), facilitate and actively listen, and create a question based off the theme of their experiences.  We use rounds at Leeds Mind, which means that we sit in a circle and go round the group so that everyone gets an opportunity to share. We also have guidelines for groups to ensure that it remains a safe space for all.

This model allows everyone an opportunity to reflect on each other’s experiences and learn from each other without traditional ‘advice giving.’ It is a peer-led space where facilitators actively engage in discussion too, sharing their lived experiences where appropriate, and what has helped them. This group has so many benefits, and many of the people who have attended previously have shared positive feedback about the sense of community they felt after attending the group regularly. It is a place where people can share some of the heaviness they are experiencing, and leave feeling lighter and more grounded. Hearing voices and having unusual sensory experiences can be such an isolating and difficult experience. This space is incredibly important at fostering connection and community, which can have an incredibly beneficial impact on group members’ mental-health and self-esteem.

Why should managers and employers in our network consider signposting employees to support groups like this? 

Maria: It expresses care and concern for the individual, and if they find it beneficial it may help with feelings of isolation that come from the experience. Depending on where the individual is at in their journey, it may be a really positive step forward to attend groups with others who share similar lived experience. 

Is there anything you feel employers could do to accommodate or support employees who may experience this?

Max: With the stigma associated with hearing voices it can often feel embarrassing or shameful to talk about. This can make it difficult to reach out for support and know you will be listened to without judgement. Employers can help by creating a safe, compassionate and confidential environment to talk, regularly checking in to make sure tasks are manageable and asking the employee what support would be most beneficial to them, such as flexible working patterns, a more predictable routine or a space where they can talk about any difficulties they face. 

Just being willing to listen and learn can go a long way to show your support. 

Is there any other signposting, resources or information you’d like to share with our network? 

Maria: Aspire is the Leeds Early Intervention Psychosis service, which provides holistic care coordination to people between the ages of 14-65 who are, or may be, experiencing their first episode of psychosis. They operate an open-referral system meaning that anyone can refer to their service.

There is also Dial House, which is a crisis sanctuary in Leeds for people experiencing severe mental distress, as well as Leeds Survivor Led Crisis.

In terms of resources, I would recommend the Voices Collective (run by Mind Camden) as they have lots of useful information on their website. 

Thanks so much to Maria and Max for contributing this guest blog.  

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