Experts by Experience are people who have lived experience of using or caring for someone who has used health and/or social care services.
Cygnet Group – which operates Cygnet Health Care and Cygnet Social Care services – has long championed and valued co-production across its services, using the voices of its former service users to provide the very highest standards of care.
In 2018, Cygnet became the first independent provider of healthcare services to invest in a full-time Expert by Experience Lead. The company now works with more than 300 Experts by Experience to help ensure the voices and opinions of service users are heard and considered across the organisation and that feedback is actioned upon to improve its 150 services.
Former mental health patient, Tasha Lowe, has received support from the age of 13 is now working with Cygnet in order to help other women struggling with their mental health. She was an inpatient at Cygnet Alders Clinic after she was officially diagnosed with a personality disorder.
She uses her experience to talk with current service users and share their feedback with senior staff so that necessary changes can be made to ensure the service provides the best care to those who need it.
“One of the most powerful things I’m able to do as an Expert by Experience is help someone that is in the same place that I once was by saying ‘I understand, because I felt that way too’”, she explained.
“Being admitted to Cygnet Alders was the first time I felt truly safe. In my eyes, it is the place that built me up to be the best version of myself that I am today. It was life changing for me.
“Now I feel it’s right to give something back.”
Natasha spends one a day a week at the hospital as part of her role.
She said: “I want to spread this hope and help other people recognise that no matter how bad your situation may be, there’s a light at the end of your tunnel. Things can, and will, get better if you accept the help at hand.
When you’re in a mental health service, sometimes you just don’t have the strength in yourself to speak up about what you need. I’ve been there and I know what helps and what hinders. I want to share that expertise to help get others into a good place.
“I can’t change anything bad that happened to me or that has happened in the past for anyone else. But what I can change is the future and improve other people’s experiences. I want to create an environment where people feel safe to talk to me and have the confidence to know I will listen non-judgementally and with a sense of empathy having walked in their shoes.”
She continued: “I can relate to service user experiences on a deeper level and that makes sure the trust is there, and I can get better responses out of them.
“No one struggles in the same way but I’m definitely able to empathise a lot more. I’m able to guide them through their difficulties and create a clearer path for the future.”
“Things have turned around for me, and it can for everyone else. I want to show that to them and prove that life doesn’t have to be a cycle of mental health getting better and then worse again. There’s so much more to live for,” added Natasha.
It is a similar story for former Cygnet Hospital Taunton patient, Lee Millington-Millar, who received support after years of suffering with severe depression and suicidal thoughts.
“I vividly remember how powerless and resentful I felt at the time of my admission,” he said. “It is that memory that spurs me on now to want to help others. I can be a beacon of hope for people who are currently in the pit of despair. That’s something I take incredibly seriously.
“I want to speak up for people who don’t have a voice. I’ve been there and I know what helps and what hinders. I want to share that expertise to help get others into a good place.
“As former service users who have experienced receiving care first hand, we are in the unique position of being able to drive real change and make a huge difference to so many people.”
Raf Hamaizia is the Expert by Experience Lead at Cygnet Group and he works alongside Directors to shape and enhance service user service user experience on both a local and strategic level.
He relies on local Experts by Experience like Natasha and Lee to listen to the opinions of service users to ensure he is best representing their voice at Board Meetings, Steering Groups and when it comes to reviewing and developing policies.
He said: “I am so proud to see our Expert by Experience programme growing and going from strength to strength. The programme is about bringing in a new lens around how we can work with service users and learn from them effectively.
“Former service users can help us drive real change and make a huge difference to so many people.
“In my experience, these roles are incredibly powerful. Being able to sit down with a service user and tell them you’ve been through and that you understand the place they are coming from is a real privilege. You see the moment their shoulders relax when they realise you have shared experiences.”
