What began as an ordinary day in 2020 turned into a life-altering ordeal when Jamil Hussain suffered a seizure behind the wheel whilst driving on the M69, resulting in a serious accident that left him in a coma for three months.
He was later diagnosed with Limbic Encephalitis, a rare neurological condition that causes inflammation in the brain and can wipe out memory, language and basic life skills.
After six months in Leicester General Hospital and later Bristol Southmead Hospital, Jamil was transferred to Cygnet Brunel, a 32-bed neuropsychiatric hospital in Henbury, where he slowly learned to walk, talk, cook, and live independently again.
Now, he uses that same journey to inspire and support others in his role as an Expert by Experience at the Cygnet Health Care service.
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 employs more than 50 EbyEs, like Jamil, to help ensure the feedback of patients is heard and any actions are taken to improve services.
“I’m like the bridge between the staff and the service users,” Jamil said. “I’m empathetic and non-judgmental. I only speak from my own experience, and that helps me show others that they are safe, supported and not alone.”
Once vulnerable and dependent on others, Jamil is now a trusted mentor to patients and a valuable guide for staff, helping both understand each other better, building trust, and showing that recovery is not only possible, but life-changing.
“When I woke up, I didn’t know who I was or how to do anything,” he said. “I couldn’t walk, talk or even recognise most people – only my mum. I remember seeing her and knowing who she was but not being able to speak. It was terrifying.
“I look back now and realise how far I’ve come in my journey. I want to be that beacon of light for others who are in still in the thick of their difficult times, helping them see a way through.”
At Cygnet Brunel, Jamil slowly began to rebuild his life, relearning everyday tasks and regaining his independence. That experience now drives his commitment to help others.
“I like to view myself as a mentor. You have to be in tune with staff so you’re all on the same page, but also build trust with the patients. I want them to feel as safe as I did when I was there.”
Jamil plays an active role in People’s Council meetings, where patients are encouraged to share feedback, suggestions and concerns.
“It’s so important that we listen and act on what they tell us, no matter how big or small their ideas and feedback might be, so they know they’re being heard and that their voices matter,” he explained.
His work also involves coaching staff on effective communication and helping patients feel reassured by someone who’s walked in their shoes.
“I carry more weight because they know I was once in their position. That’s crucial. I can explain to staff what words and tone to use. Experience is better than any qualification.
“For me, when I was in hospital, it was so frustrating because your brain is telling you one thing but your body’s doing another. You feel really vulnerable and you have to trust these people who you’ve never met before.
“It showed me the importance of how you speak to people and interact with them. The importance of that first impression for building trust. In my job now as an EbyE, I can explain that to staff and also reassure patients that everyone really is here to help.”
Jamil said it’s the smallest things that can make the biggest difference.
“Sometimes patients just need someone to listen. You’re not making decisions for them, just guiding them, reassuring them, letting them know someone cares.”
He is now back behind the wheel, having retaken his driving test, and continues to manage his condition with medication.
“My mum was the driving force behind my recovery. She’s my inspiration, and I owe it all to her. She gave me the strength to come back stronger, and now I can be that strength for others.”
For Jamil, each visit to a Cygnet service is a chance to learn, connect and give back.
“It gives me purpose,” he said. “I want to show people there is light at the end of the tunnel. Life can be even better than it was before.”