Zoe's story: Finding purpose through lived experience

A senior manager at NHS England, a scientist by background, and someone who enjoys running and cycling, Zoe's life is full. But alongside her career, she is also helping shape a future where disabled people's voices influence decisions from the very beginning.

It is a role she never expected to take on.

More than a diagnosis

Zoe lives with multiple sclerosis (MS), but she doesn't want that to be the headline of her story.

Diagnosed in her twenties after years of unexplained symptoms and a near progressive disability, she has experienced challenges many people never see. Modern treatment has transformed what once felt like an uncertain future, allowing her to build a successful career, pursue the activities she loves and continue pushing herself in new ways.

Rather than defining her, those experiences have given her a perspective that benefits others.

"I lead quite a blessed life," she says. "I enjoy lots of really active hobbies. People often find that surprising."

That outlook, focusing on what is possible rather than what has been lost, runs through everything she does.

Finding Include to Improve by chance

Zoe first became involved after spotting an opportunity shared through an MS organisation. What began as contributing to a single project soon led to many more.

Today, she contributes across a wide range of work, from workplace adjustments and community guidelines to sharing barriers and enablers of Park Yoga, recommendations for future work and helping shape the organisation's longer-term strategy as the research and lived experience networks come together.

"I think once you're part of something, other opportunities open up."

Bringing different perspectives together

What makes Zoe's contribution particularly valuable is the breadth of experience she brings.

Alongside her lived experience as a disabled person, she is also an experienced NHS leader responsible for managing people and delivering large-scale change.

She believes both perspectives matter.

"When people ask me about the best reasonable adjustments, I can't answer that just as a disabled person. I also know what it's like to be a manager. Both of those things can be true at the same time."

This ability to see issues from multiple angles reflects the strength of Include to Improve. Members do not contribute because of a diagnosis alone. They bring careers, skills, expertise and life experiences that help create more practical, inclusive solutions.

Learning from others

One of the biggest surprises for Zoe has been how much she has learnt from other members of the network.

Meeting people with different disabilities has broadened her understanding of accessibility in ways she hadn't anticipated.

She has taken that learning back into her professional life, becoming more mindful of how information is shared and how services can be made more accessible.

The changes are often small, but meaningful, from thinking differently about accessible communications to considering needs she may never previously have encountered.

"There's always something more that we can do."

For Zoe, this learning flows both ways. The skills she develops through involvement in Include to Improve influence her work in the NHS, while her professional experience strengthens the contributions she makes to the network.

Rediscovering part of herself

Perhaps the biggest change has been personal.

For years, Zoe had tried to separate herself from her disability.

"I'd shoved my disability into a box. I'd dealt with it, so I wanted to put it away."

Joining the Lived Experience Network helped her see things differently.

Rather than revisiting difficult experiences for their own sake, she realised those experiences could help improve opportunities for other disabled people.

"It's been really helpful because I can put it towards something really positive."

The network has also given her greater confidence to ask for the adjustments she needs herself, recognising that advocating for others starts with understanding your own needs too.

Every voice strengthens the whole network

The Include to Improve programme succeeded over the last two years because people like Zoe choose to share not only their experiences, but also their professional expertise, ideas and commitment to creating change.

Whether contributing to strategic discussions, reviewing resources, shaping research or influencing future programmes, every conversation helps Activity Alliance and Sport for Confidence better understand what inclusion should look like in practice.

For Zoe, giving something back has become an important part of who she is.

"No matter what job I did, I think it's important to feed back into society."

That is exactly what the Include to Improve programme made possible, creating space where lived experience becomes lasting change.