'I now have hope': Young advisers shape the NHS

Anna VarleSouth West social affairs correspondent
News imageBBC A group of young people standing in a circle in a park talking to each oherBBC
Young advisors play an active role in improving NHS services

"I lost all my teenage years, it felt very hopeless. My voice got lost by the end."

Gracie from Dartmoor, now 19, spent four years as an inpatient in hospital with anorexia.

She also had complex post traumatic stress disorder and is autistic.

Gracie is one of a growing number of young people who are using their lived experience to directly influence NHS children's services in Devon and Torbay.

News imageA young woman with auburn hair who is wearing a white scarf
Gracie is one of a growing number of young people who are using their lived experience to directly influence NHS children's services in Devon and Torbay.

Young advisers play an active role in improving services, from shaping communications and resources to interviewing staff and advising on what support works best for young people, according to Children and Family Health Devon (CFHD).

Gracie said she had seen changes since becoming a young adviser and has hope people of her age are being listened to.

Talking about her lived experience, she added: "You start with a voice and you end up without one.

"My family fought very hard but when you have a mentally ill child, and professionals with strong opinions on care, you get forced into however they see fit and a lot of time that wasn't right."

As part of her young adviser role she has created a neurodivergent friendly booklet which gives staff destress tolerance skills.

These are techniques such as distraction and self-soothing to help patients manage emotional pain, preventing impulsive or harmful reactions.

She said: "I think there needs to be more of a push towards destress tolerance and de-escalation skills within inpatient settings.

"Because of the nature of eating disorders, your care is mainly based on your physical health and they end up removing the psychological input.

"It's just about feeding and getting your health to a point they are happy with. I would always push to look at why this is happening to you, rather than what's physically wrong with you."

Gracie has also developed a box of tools to help inpatients cope, such as self-soothing exercises, puzzles, colouring and sensory toys.

News imageA young woman with dark brown hair and a brown knitted scarf
Sage struggled with anxiety and panic attacks

By December 2025, 48 experts by experience, including young people, parents and carers, had signed up and the number was continuing to increase, according to CFHD.

Between March and December last year they were involved in 78 recruitment interviews.

Sage, 19, from Exeter struggled with anxiety, panic attacks and an eating disorder and is now contributing her experience to the scheme.

She said: "It was a rough time in my life, it's a long journey and it's not an easy fix.

"When I was under the service, I didn't feel like I was listened to properly. I felt that I didn't have that much of a say."

As a young adviser, she takes part in job interviews for posts which range from clinical team managers to psychiatrists.

"If I get the impression from someone applying that they are not someone a young person would click with, then my thoughts and opinions actually get listened to," she said.

News imageA young woman with long blonde hair who is wearing a brown sweatshirt
Emily sits in on interviews and helps professionals understand the patients' viewpoint.

Emily, 18, from Crediton in Devon also sits in on interviews and helps professionals understand the viewpoint of patients.

She was diagnosed with anxiety in her early teens and developed an eating disorder.

She said: "I was admitted under therapy and I worked through my eating disorder which I have fully recovered from. I am very proud of that but I am still working though my anxiety."

Emily said she had a lot of support and understanding when she was using the services and feels her feedback is always taken on board.

News imageA 16-year-old boy who has brown curly short hair and is wearing a white rugby shirt and a blue and white checked scarf
Zero from Exeter said being involved means he gets to have his voice heard

Zero, 16, from Exeter said being involved means he gets to have his voice heard.

He said: "I feel like professionals are so eager to hear what we think. That feels really positive."

Zero had depression when he started secondary school.

"I just felt hopeless. My default was depressed and that's a really dangerous place to be as the only way is down. I had to fight for a way."

Currently young advisers are working with clinicians to improve both physical and mental health services in Devon and Torbay.

This includes producing easy-to-read letters explaining the autism assessment process for young people.

They are also working with clinicians to make self-referral forms accessible and understandable and are helping design Dialectical Behavior Therapy (DBT), a psychotherapy designed to help people manage intense emotions and reduce self-destructive behaviours.

Participation and engagement worker for CFHD, Robin Tay said: "There will always be things that need to be improved and the best person to tell us what needs to be improved are the people who have experienced the services.

"It's lovely to meet a young person who has had a struggle, who's had support for mental health.

"To watch them grow and gain confidence and bring this incredible valuable wisdom to the work we do."

If you have been affected by any of the issues raised or discussed in this article, there is more information available at BBC Action Line

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