After retiring from a long career in teaching, Veronica* found herself stepping into an unexpected role with a renewed sense of purpose – an expert by experience helping to shape the future of mental health services.
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“I’m passionate about improving things,” she says, reflecting on what motivates her. “The more services improve, the better chance our loved ones have of recovering.”
Having spent the past 13 years navigating her daughter’s mental illness and the complexities of the mental health care system, Veronica became a carer by necessity but a contributor by choice. She first heard about the opportunity to get involved through a fellow carer she met via a WhatsApp support group, who encouraged her to join a local programme where people with lived experience help train NHS mental health staff.
“I felt like I had so much to offer, but I didn’t have a voice,” Veronica recalls. That changed when she discovered a role that not only welcomed her perspective but relied on it. “I gave it a try and realised that I really liked being included. I felt like I could help make a difference.”
Sharing an example of how her real-life experiences have helped staff see things differently, Veronica describes how her daughter had been scheduled to speak with a mental health professional about future employment. The meeting was changed at short notice to a phone call which then didn’t go ahead. “My daughter was waiting for the call all afternoon,” she says. “For someone who’s well, that might be ok. But for someone struggling with their mental health, it can have a huge impact.” Insights like this can help staff understand the emotional weight that seemingly small decisions can carry. But Veronica is just as keen to highlight when things go right. “It’s important to share the good examples too,” she adds. “It’s useful for staff to hear what works well.”
Since then, she’s taken part in a range of projects, using her personal experiences not only to inform staff training but also to shape digital innovation and even support efforts to recruit more experts by experience.
While much of her work focuses on helping others, Veronica says the expert by experience role has also helped her. “I find it very therapeutic,” she explains. It’s also strengthened her ability to speak up on behalf of her daughter.
In one instance, she was meeting with a new doctor who questioned how she could be certain her daughter was experiencing a manic episode. Drawing on her involvement with Oxehealth – a health technology company that uses objective data to support inpatient mental health care – she thought to check her smartwatch. “Her step count had gone from almost nothing to 50,000 a day,” she says. “That gave me something concrete I could point to. If I hadn’t been part of those conversations with Oxehealth, I wouldn’t have thought to use data like that. It gave me peace of mind and helped the doctor take what I was saying more seriously.”
Looking ahead, she believes data has a crucial part to play in mental health care. “If you can catch something early – like disturbed sleep – you can treat it before it escalates and becomes unmanageable”.
But just as vital, she says, is continuing to work together – carers, service users, and clinicians making a collaborative effort to improve care. Through her role as an expert by experience, Veronica has come to see the health system not as something she’s on the outside of, but as something she can engage with in a meaningful way. “It’s made me feel like we’re all part of a team together instead of ‘them and us’, and it’s made me more sympathetic to when things go wrong. I feel it’s my responsibility to help rather than saying ‘I don’t like this, I don’t like that’”.
Looking around the room in expert by experience meetings, she’s always struck by the courage in the stories people bring. “There’s such a bond between us. I’m always really impressed with what people have to say – I feel that their points are so valid. I’m proud to be part of that.”
And her message to others considering the role: you don’t need to have all the answers. Just a willingness to speak up. “Everyone has something valuable to contribute,” she says. “Even if your experience is different – that might be exactly why it needs to be heard.”
*Name changed to protect anonymity.
