Ria’s Journey: Advocating for Children with Disabilities at Leicester’s Hospitals

Ria is one of the twenty members of the Leicester Youth Forum. A group of 13–24-year-olds that drive meaningful change for young patients at Leicester’s Hospitals.

When Ria was seven years old, she received a diagnosis of Ehlers-Danlos Syndrome. This invisible disability affects soft tissue and weakens joints. It can even lead to heart complications. Because of her condition, Ria requires frequent hospital admissions as she is prone to dislocating her limbs, including her jaw, shoulders, hips, and knees.

The Impact of the Leicester Youth Forum: Amplifying the Voices of Young Patients

Over the years, Ria, now aged 17, has faced many challenges in the hospital. And as a minor, Ria has often felt overlooked by clinical staff – until donations like yours funded the Leicester Youth Forum. The first meeting took place in September 2021 and Ria has attended every meeting since.

We asked Ria why she joined the Youth Forum. Ria replied: “I wanted to advocate for other children with disabilities, so that our voices are heard.”

Founded by Pain Specialist Nurse, Zoe Syrett, the Youth Forum provides a safe space for young patients to come together and speak openly about their experiences.

Zoe told us: “Often young patients feel that they don’t have a say when in hospital. Decisions may be out of their control. The Youth Forum gives young people a voice, a voice to shape decisions made about the health services we provide. Many like Ria are passionate about healthcare, and the Forum gives them the chance to help others.”

Empowering Change: The Role of the Leicester Youth Forum

Now funded for its second year, the Youth Forum meets monthly away from the hospital at different venues across the city. Ria said: “I was nervous ahead of the first meeting, but I found meeting new people really comforting, and now it’s the one thing I look forward to each month.”

During the meeting, conversations are facilitated by a youth worker and four members of clinical staff, including Zoe.

Zoe assures: “As facilitators, we don’t make any promises we can’t keep. We try to keep the expectations of our members realistic. But following the Youth Forum meetings, we escalate any issues to the appropriate team within the Hospitals. Any feedback or action taken is then shared with the young people.”

Youth-Driven Change: Making a Difference at Leicester’s Hospitals

One of the first changes influenced by the Youth Forum involved the provision of food for young patients and their families. The Head of Catering attended the meeting and learned that food was not provided in the Children’s Emergency Department when patients faced long waits to be seen. They were motivated to act after speaking with Forum Members and saw to this problem immediately. And, a few weeks later, when admitted to A&E with a dislocation, Ria saw staff providing food to young patients and their families.

Ria wants to say thank you for funding the Youth Forum: “Not only does the Youth Forum make changes for the better at Leicester’s Hospitals, but it really improves mental health for members like me.”

Getting out, away from the hospital, and being around others that she can relate to makes Ria happy. She can connect with others like her, and focus on positive change she can inspire, rather than how her condition makes her feel. Seeing the impact of the Youth Forum has encouraged her to throw herself into new projects. Now, she is looking at; improving car parking for patients and visitors with disabilities, inclusive badges, and recruiting more members to the Forum.