Posted on: 18 July 2023
CNWL held its Patient and Service User Conference at Cavendish Conference Centre in Central London on Monday.
The event explored how the patient voice matters and why it is important to include those with lived experience.
Sandra Jayacodi, who is a CNWL service user and Expert by Experience, opened the day by reminding attendees that patients are the only people who experience healthcare from start to finish.
“I was brought up to believe that you trust the doctors,” she said. “They are next to God.
“I thought that I should never question my doctor because I was afraid I might not get the same treatment.
“I had never heard of patient voice and would have no idea why it is important.
She described how she first came into contact with CNWL 10 years ago and was soon introduced to the Recovery and Wellbeing College.
Here, she learned to appreciate how much her voice mattered. Sandra soon felt empowered to take a greater control of her own healthcare by proactively raising issues with her clinicians rather than waiting to be asked.
Dr Con Kelly, Chief Medical Officer, then built on this idea, touching on the fact that “we are still educating doctors about patient involvement”.
He said: “Everyone has a story. Everyone has a life story. And if you don’t include that lived experience then you are missing out.
“There is no excuse not to involve people in their care. That’s the way we want to work and that’s the way we must work.”
Con summarises the day in this short video.
We then heard from Cristina Serrão, Lived Experience Ambassador, and Katy Hawkins, Trustwide Lived Experience Practice and Peer Support Lead, who shared their stories and described how they returned to the system because they wanted to help improve the system.
Alex and Raj from the McPin Foundation joined us to talk about how embracing lived experience can help to transform mental health research.
They reiterated the importance of research being carried out ‘with’ or ‘by’ the public rather than simply ‘to’, ‘about’ or ‘for’ them.
Click here to find out more about the McPin Foundation.
After some teas and coffees, we reconvened for a panel discussion on the value of community connection.
The panel members included Fatima Elguenuni, Community Collaboration Consultant, Anjie Chhapia, Expert by Experience and Jenny Lanyero, Team Manager at Brent Health Inequalities Team.
They talked about a wide range of topics but one of the stand-out themes was that fostering a positive community and bringing different local services together is the best way to deliver effective care and reduce health inequalities.
After lunch, we were joined by the Voice Exchange who gave attendees the opportunity to share their own ideas on how we can improve mental and physical health services at CNWL.
In-keeping with the collaborative theme, suggestions focussed heavily on how we can involve patients and service users in future developments, as well as improving the interconnectivity of services.
Our final keynote speaker was Adam Castillejo, aka ‘The London Patient’ and Ambassador of Hope.
He spoke passionately about how he had to overcome HIV and cancer at the same time – all after being given six months to live.
Reflecting on how he pulled himself back from the physical and mental brink, he said: “I had to tell myself ‘I would rather die fighting.’”
Adam went on to be the second person on the planet to be cured of HIV.
“It’s very humbling. I’m so lucky. It is a privilege but also very humbling – I was in the right place at the right time.”
“Now I need to help others. I want to help trusts understand the hurdles people need to go through to be cured.
“We need to act now, not wait for bad things to happen.”
Chief Nurse, Maria O’Brien, closed the day by thanking the fantastic speakers on the day and handing out raffle prizes.