Shifting perspectives on severe mental illness

Sometimes it’s the small things that can make a difference for someone living with a mental health condition.

A bus journey. Sounds simple enough. But if, like for one of the service users we support through our community mental health service for people living with psychosis, a noisy bus journey can trigger voices in your head, it takes a long time to recover from that. What started as a simple bus trip from West Sussex to Brighton can morph into a draining and exhausting experience.

Enter Liz, our mental health rehabilitation worker, who is part of a multi-disciplinary team working with people with psychosis in partnership with Sussex Partnership NHS Foundation Trust (SPFT). Liz supports this person by accompanying him on bus journeys to build confidence and his connection with the community.

“If he’s alone on a noisy bus, it can trigger him to hear voices, the effects of which can be so profound that he will then need to take a whole day to recover,” Liz explains. “But if I go with him and we chat during the journey, it helps distract him, which reduces the likelihood of this happening.”

Community-based support

Liz is 11 months into her new role, which is a partnership with the local NHS, with West Sussex Mind employees working in SPFT’s Community Rehabilitation Service team supporting people with psychosis. Liz is based at Swandean Hospital in Worthing, and her remit is to support people with psychosis in the community and co-facilitate groups for them. The idea is that through West Sussex Mind, the service users can be linked into other community-based mental health services, such as our social activities groups, in the longer term.

Liz is currently supporting seven people of different ages, going out to visit them in their own homes, care homes or supported housing. She is also running groups for them with her SPFT colleagues at different venues in the community.

One of the groups is a creative-themed group with drawing, painting and other crafts, which is weekly at West Sussex Mind’s site in Worthing, and attended regularly by four to five people living with psychosis. Liz and a co-worker from SPFT co-facilitate the group and have had excellent feedback so far.

“Several of the service users have said what a lovely atmosphere it is at Gateway,” reports Liz. “They’ve said that they feel relaxed, safe and comfortable there. It's also a great opportunity for social interaction and chatting for people who are sometimes quite isolated in their daily lives. People have fed back that the creative group quietens down their minds and is a break from their anxiety. One woman even reported that the group helps to keep her flashbacks at bay.”

Touch points with the community

There are also active groups, such as a walking group, and badminton at Worthing Leisure Centre – “which is great fun, but can get competitive between staff and service users!” observes Liz. The team also accompanies service users to Slicks, a venue in Worthing town centre, for pool, snooker and darts, giving people vital touch points with their community just by being out and about and seeing others around them.

This latter point is very important, because people living with psychosis may be quite isolated for several reasons. Liz explains: “Sometimes people isolate themselves, because they feel more comfortable in quiet environments due to their condition – as with the noisy bus example. Or it may be that they isolate themselves, as they feel ‘othered’ in the community, because they present as different and don’t feel accepted. Sometimes people living with psychosis simply feel too overwhelmed with life on top of everything else they have to cope with and self-isolate as a result.”

People living with psychosis face public stigma

The public stigma faced by people living with severe mental illnesses (SMIs), such as psychosis, schizophrenia or bipolar disorder, is particularly marked. For example, Mind’s Attitudes to Mental Illness report 2023 showed that public attitudes towards psychosis, and particularly schizophrenia, are lower than for other conditions, such as depression, on key stigma indicators like knowledge, behaviour and attitudes.

This evidence chimes with Liz’s experience working with people with psychosis in the SPFT team, as well as her prior background in Australia and the UK working as a mental health nurse on acute wards. “People living with severe mental illness are subject to stigma in society, because awareness about SMIs is often low and ill-informed. People fear the unknown, they fear difference and often the media doesn’t help with that perception.”

Liz and the team are helping to break down some of these barriers and build community connection for people with psychosis, while also building their life skills. One example of the latter is the weekly eat well group, where service users and staff come together to prepare, cook and eat a meal together in a relaxed atmosphere. Any leftover food is then packaged for service users to take home with them.

“We encourage service users to prepare and cook as much as they can, while we talk to them about what is and isn’t healthy, the costs of the meal etc. They get a real sense of satisfaction from eating what they’ve cooked and get some great social interaction when we sit down to eat together. They feel pride in what they’ve made, chat over the meal and discuss whether they would make it at home.”

Well-rounded care

Those getting support from the Community Rehabilitation Service have access to care from a multi-disciplinary team, including social workers, occupational therapists, psychiatrists, psychologists, peer supporters, mental health nurses and experts by experience. Liz says that she has found the team at SPFT to be “very friendly and open” and she “can always ask questions”.

“All the team members are great advocates for our service users,” says Liz. “They really care about them and understand severe mental illness.”

The long-term goal is for those living with psychosis to build up the skills and confidence to do activities in the community themselves once they have done them in a supported way. One service user with psychosis has started doing social activities with West Sussex Mind (with another having been referred), which will be a big step forward for those individuals, their community connection and quality of life, and demonstrates the success of the partnership.

While severe mental illness, such as psychosis, can be unpredictable and recovery rarely follows a linear path, the community rehabilitation team is determined to help people learn to manage their mental health over the long term and lead independent and fulfilling lives. “We always celebrate service user wins, however small, and it’s a great team doing highly rewarding work,” says Liz.

It's important to recognise that, just like anyone else, people living with psychosis deserve our respect and our support to be able to thrive in the community.

“Feeling connected to your community is beneficial for everyone,” concludes Liz. “And just because someone’s reality looks different to mine doesn’t mean it’s not valid and should be discounted. We are all social animals and we need each other to survive and thrive. The same is true for people living with psychosis – they need to belong and they need to feel supported.”