In the absence of mental health support from statutory organisations, human resilience shines as people with lived experience form communities on the periphery – where the view is often better anyway. From this vantage point, service users and patients can see where solutions lie and can evidence what is effective as they self-resource within their community.
There are 2m people currently waiting for mental health care in England. The NHS Constitution for England states that patients have the right to access mental health services within 18 weeks of being referred by a doctor, yet statistics published in 2024 show that 10 per cent of those still waiting for a second contact in adult community health services had been waiting at least 116 weeks.
There is silent suffering behind the statistics that we’re becoming desensitised to, as over-stretched, under-performing services become a decades-long norm. Ian, a resident in one of our services recently shared his ideas for reform of community mental health services with his local MP.
INSTITUTIONAL INEQUITY
Ian’s experiences of managing his mental health – sometimes in crisis – over 20 years have given him considerable knowledge of the pathways offered to people by statutory services, and the institutional inequity that allows legislation to be levered against patient choice, even when that strips people of dignity and the hope of recovery.
But Ian has applied what he learned through his experiences of mental health to start bridging the gap in statutory support, through peer-to-peer networks. Ian first experienced a mental health crisis in 2003, and survived several suicide attempts in the following years.
Looking to recover and heal, Ian found that meaningful employment was helpful but the pressures of working long hours for a large firm in the banking industry took its toll on his mental health. From crisis to homelessness, Ian experienced little support from GPs, community mental health teams or psychologists. After two decades, he reached a point where he knew he had to get real help. Though offered only tokenistic support, his perseverance resulted in advice from a professional to voluntarily admit himself to the mental health hospital in his locality.
This was a life changing experience – from entering through the doors and handing over his possessions, to not being allowed out into the community. From beginning to end, the most succinct description of Ian’s time trying to get help in an inpatient mental health unit was ‘just like being in prison’.
BASIC PROVISION
Ian found that the basic provision patients experienced once admitted consisted of once-weekly appointments with a doctor and little else, besides medication checks and a TV in a communal area. Patients could speak with each other but many chose to remain in their own rooms, as there was no separate space for those presenting as vulnerable or physically challenging.
Once initially assessed patients were prescribed medication, but there was no explanation let alone discussion about why. Patients learned quickly that trying to initiate a discussion about their treatment plan, share their experiences of medication, or ask for changes, resulted in punishment.
This took the form of being forcibly restrained and given a depot injection of an anti-psychotic medication. Ian found that all the rights prescribed around patient choice – access to his own notes and support plans, discussion around timelines and dosages – were swiftly shut down with the threat of this swift disarming of dignity and autonomy.
RACIAL BIAS
Ian’s observations of how differently black men were treated in the secure hospital are particularly sinister – they were much more likely to be punished with restraint for attempting to communicate their needs. Ian also found a pattern of sectioning black men as an eviction strategy from community settings.
One mental health advocate shared with Ian how a non-verbal patient they knew had been sectioned as their housing provider, the local authority, claimed he was extremely loud and vocal to the point of being classed as anti-social. He was imprisoned and made homeless in one swift application of the Mental Health Act 1983.
This is structural racism 101. As Ian learned to adapt and survive in an oppressive environment, he had to be resourceful and overcome information barriers through a resource he alone had – a short phone charger lead! Accessing the hospital Wi-Fi, Ian started to research the medication he and his fellow patients were on, finding that they were being prescribed doses far higher than what is advised.
Ian began supporting others to discuss this safely in their weekly appointments with the in-house doctor. His phone became a source of hope and resistance and, as more patients conversed and developed relationships, normal joys like humour were revived.
THE LOONY BIN WHATSAPP GROUP
When it was time for him leave, Ian continued to use his phone as a tool of support; exchanging numbers with patients and setting up a WhatsApp group. After discussion, participants decided to name this group after their nickname for the mental health hospital, the ‘loony bin’. The power of humour to overcome, cope, and gain a sense of objectivity and empowerment allowed the men in the group to create meaningful relationships based on their shared experiences.
Those being discharged from the mental health unit to go out into the community and start again found solace in sharing experiences on the loony bin group. They were able to share advice and even arrange meetups, and the group grew organically as people invited others whom Ian would sometimes meet weeks later at social events around London. Smaller meetups included cinema outings and walks that helped to counter the isolation and loneliness many members faced.
The empathy, practical understanding and knowledge that those sharing similar lived experience can offer each other is incomparable but it does not substitute the appropriate support of trained professionals and resourced organisations. Rather, those with lived experience must be supported to train and work in statutory organisations in a variety of roles so that they can influence organisations for the better. It is not just the Mental Health Act that needs reform, but every level of service.
CONTRASTING EXPERIENCE
Ian’s experiences in a mental health hospital prove this, and can be contrasted with Jo’s experience of receiving support through one of our services and moving forward to shape and deliver peer mentoring services with Social Interest Group (SIG) in her own community.
Jo’s ability to support people in an effective manner comes from the fact that she is in a permanent post, trained and resourced to advise, support and signpost people into pathways to independence in their local community. SIG’s peer-to-peer community service in Medway is delivered in partnership with the public health service.
This partnership between local statutory and VCSE models a holistic approach that supports people to recover, manage their health and wellbeing, and integrate into their own community.
Integrated services facilitate integrated communities because people can access the different support services they require at any time, in their own locality and on their own terms. Like the ‘loony bin’ WhatsApp group, this offers people a greater sense of ownership and empowerment, providing hope when it is needed most.
Raje Ballagan-Evans is policy and impact manager at the Social Interest Group (SIG)