It’s a common complaint from autistic people and others with disabilities that healthcare professionals don’t always communicate well with them or take their needs into account.

University of Sunderland is trying to change that embedding the voice of “patients and carers” to help train the next generation of doctors, nurses, paramedics, pharmacists, physiotherapists and occupational therapists in the classroom.

Under their Patient, Carer and Public Involvement (PCPI) programme, around 250 members of the public are involved. PCPI participants support lived experience seminars, communication skills development sessions, simulated exercises and clinical examinations, and provide feedback to the trainee healthcare professionals. PCPI participants are paid for their involvement.

One of them is Frances Byers, 29, who is autistic and has epilepsy.

Frances, an IT graduate from Sunderland, says: “Sometimes I play a role in different scenarios with students and give them feedback. They don’t always know I’m autistic though sometimes it comes up.

Other times I use my own details and my lived experience. I explain my medical history, how my conditions affect me and what they could do to help.

“I observe how the students speak to me and whether they are friendly. Sometimes they talk too fast, sometimes they use technical jargon, sometimes they don’t introduce themselves.

“You can see improvements as they go on in the way they talk to you, using your name and explaining things before they do them.”

Lesley Scott is the senior lecturer who facilitates the PCPI programme, which is embedded in the Faculty of Health Sciences and Wellbeing. The PCPI programme supports students learning and development across the University’s health-related undergraduate and postgraduate programmes as well as short courses.

Those who take part are trained and paid as casual workers. Lesley says: “They are integral to our programmes and the value they add to student’s learning is amazing.”

“It’s not just about ticking boxes. When they talk about their lived experience, it gets our students to think differently about a patient’s lived experience and they take that learning into their practice.”

Sometimes the PCPIs go to hospital and get treated by people who graduated from here or who are on placement. The PCPI participants then email me to tell me how fabulous they are. It goes full circle.

The PCPIs are involved at all stages of a student’s course. They sit in on applicant interviews, chat to them at induction, role-play in scenarios in the university’s simulated ward, home or ambulance, give them feedback and take part in assessments. They also help shape the curriculum and help develop new courses.

They get a lot of out of it. Frances says she has her own difficulties when accessing healthcare, such as GPs brushing off her symptoms or being resistant to her having a parent in appointments with her, and she is pleased that she is contributing to changing NHS culture.

“It makes me feel good to do things to help people learn about autism,” she says. “A lot of people don’t understand it or discriminate. I would like to help change that for people in the future.”

Frances also loves the social side of being involved at the university. “It’s not always easy for me to make friends so it’s lovely to see people and go for tea with them. I get excited and happy when I know I’m coming in.”

See more about the PCPI programme at

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