Patient & Public Involvement: 'In his memory' - Tracy's story

In this blog, we hear from Tracy, a Patient & Public Involvement (PPI) contributor in the D-Stress Study, a project funded by the National Institute for Health and Care Research (NIHR) and Diabetes UK. Tracy shares what motivated her to get involved, how the experience has impacted her, and offers valuable advice for both members of the public considering research involvement and the researchers who want to engage with them.

Understanding the D-Stress Study

Living with type 1 diabetes isn’t just about insulin, blood sugar levels, or clinic appointments. It’s about managing a relentless emotional burden, what many experience as diabetes distress. This mental and emotional toll is far more widespread than most people realise.

In fact, nearly 50% of adults with type 1 diabetes experience significant levels of distress, which can seriously affect their ability to care for themselves and, ultimately, their health. Despite this, the NHS currently lacks a clear understanding and structured approach to address it.

The D-Stress Study aims to change this.

By drawing on the most effective strategies from three international programmes, D-Stress is creating a UK-specific care pathway that treats emotional distress not as an exception, but as a natural part of living with type 1 diabetes. The study is built on collaboration between healthcare professionals and people with lived experience (the latter making up a Patient Forum), with the goal of:

• Identifying diabetes distress early
• Preventing it from escalating
• Managing it with compassion and support when it arises

Introducing Tracy and her motivation to get involved in this research

When Tracy joined the D-Stress Study as a PPI contributor, she didn’t just bring her voice, she brought her son’s memory.

Dayle passed away from complications related to type 1 diabetes.

Type 1 diabetes is often framed in clinical terms: HbA1c readings, insulin ratios, finger pricks. However, the reality is far more complex.

“Dayle’s diabetes distress—to me—was extreme, and it was classic. I just didn’t know what to call it at the time.”

Tracy spent years trying to find help for Dayle and for herself, but at every turn, the emotional strain was misunderstood or dismissed.

“It was always: ‘Is anything going on at home? Do you have relationship issues?’ Nobody ever recognised that it was the diabetes itself causing his distress.”

The grief remains raw, but Tracy has channelled it into something deeply meaningful: a determination to stop others from suffering in silence.

“When I talk about this study, Dayle’s story gets told and heard. My son is my motivation to highlight how vital holistic care is. I think my biggest driver is that if Dayle had known his distress was being recognised, things might have been very different and felt more positive for him.”

Finding a Safe Space

Before joining the D-Stress Study, Tracy had never been involved in diabetes research. She’d attended a few workshops focused on language in healthcare, but this felt more personal; and initially, it brought uncertainty.

“I’m not type 1 diabetic, which all my peers are, and I worried that it might feel heavy for people with type 1 to hear. Like, ‘look what could happen.’”

Instead of resistance, Tracy was met with warmth and care.

“The reception to Dayle’s, and my, story, has been amazing. Others empathy and acceptance empowers me to speak.”

Tracy describes the Patient Forum not as a research group, but as a space of mutual understanding and support.

“Everyone just gets it. I used to think Dayle’s experiences, and mine, were unique. But they’re not. That’s where the mutual compassion, and passion to make changes comes in.”

Feeling heard and validated has given Tracy the strength to continue contributing.

“I feel accepted. I feel privileged to be part of a group who are so passionate about making real changes.”

Being part of the D-Stress group has brought powerful emotional moments, and a sense of connection Tracy didn’t expect.

“Sometimes I’ve got so much I need to ask and to express, things I need to get out. And everyone is really accepting of that. They recognise it and understand.”

What advice would you give to patients and public thinking about getting involved in research?

For anyone unsure about taking part in research, especially those carrying grief, Tracy’s advice is simple and sincere:

“Do it. Try it. It’s been massively therapeutic for me. At first, I wondered, should I be doing this? Is it too soon after Dayle’s death? Will it be too much for me? But there’s no doubt now, this is what I need to do.”

“I can’t help Dayle anymore, but I can speak, and be heard, on his behalf.”

Tracy’s words, her courage, and her presence in this research are already making a difference. They remind us that compassionate care isn’t a luxury, it’s essential, and that behind every condition, there’s a human story that deserves to be heard.

By sharing Dayle’s story, Tracy is helping to shape a better, more emotionally aware future for diabetes care. One where no one feels alone in their struggle. One where distress is recognised, and compassion is routine.

What advice would you give to researchers who want to involve patients and public?

“Give people a voice, there cannot be any hierarchy in lived experiences, these are people’s lives.”