Tell us about your role at Spring North
My job is to help people with experience of cancer have a say in how we improve early diagnosis across Lancashire and South Cumbria.
That might mean talking to someone about what happened when they first noticed a symptom, how they found getting an appointment or whether they understood the information they were given during tests. I then help bring those experiences into conversations with the Cancer Alliance and healthcare professionals. People who have been through that process can tell us things we might otherwise miss. We want to understand what helped, what made things harder and what we could do differently for the next person.

What does your work look like day to day?
It’s quite varied, especially because the role is new. Some of my time has been spent getting the practical arrangements in place, but a lot of it is about getting out and meeting people. I’ll visit member organisations, speak to support groups and attend meetings. Often, one conversation leads to another. Someone might hear about the work and say they know a person who would be interested, and that connection grows from there. Once people get involved, I help them find opportunities that fit their experience and interests. I also check in with them. Are they comfortable? Do they understand what’s involved? Are we asking too much? Making sure people feel supported is a big part of the job.

Who can get involved?
More people than you might think. When we say ‘lived experience’, people often assume we only mean someone who has had cancer themselves.
We absolutely want to hear from those people, but we also want to hear from partners, relatives and carers who have supported someone. And if you’ve been through tests or investigations and were told it wasn’t cancer, your experience matters too. You can still tell us a lot about how easy it was to get help or understand what was happening.
I also speak to people working in the sector who mention that someone close to them has had cancer, but then assume we wouldn’t want their input because they’re a professional. Please don’t discount yourself. Your personal experience still counts.

Why is it important to include families and carers?
People have told me they were so shocked when they heard they had cancer that they struggled to take anything else in.
In those moments, it’s often a partner or family member listening to what the doctor is saying, remembering the details and helping work out what happens next. They might be the person who asks questions or explains the information again afterwards.
They’ve been through that experience too, but from a different position. They can tell us what helped them support someone and where they felt unsure or needed more information. If we don’t ask them, we risk missing something important.

Can you share an example of the work you are involved in?
One of the projects I’m working on looks at prostate cancer. It was already under way when I joined, and I’ve been helping bring more people with personal experience into those conversations. We recently held a workshop with people who had been through the process alongside professionals from across the region, including clinicians, cancer nurses and GPs. What was valuable was being able to talk through ideas together. A professional might suggest something that makes complete sense from a clinical perspective, but someone who has used the service can explain how that would actually feel or work for them.
Would they understand the information? Would they know what to do next? Is there something that might put them off? Having people in the room who can answer those questions helps us think things through properly.

What have you learned about making information accessible?
Sometimes we can make things harder for people without realising it, simply through the words we use. A healthcare professional might use a term every day, but if you’ve never heard it before, it can leave you confused or worried about what’s going to happen. I’ve come across unfamiliar language myself since starting this role, so I can understand how easily that happens. We need to ask people whether something makes sense and give them space to say when it doesn’t. People have different reading abilities, backgrounds and experiences, so one explanation won’t necessarily work for everyone. If someone is already worried about seeking help, we don’t want confusing information to become another thing standing in their way.

What are you particularly proud of so far?
It’s still early days for the project, but we’ve already started building some really positive relationships with people who have personal experience of cancer, community organisations and healthcare professionals. What’s been particularly encouraging is seeing how much people want to share their experiences, whether that’s talking about something that worked really well or highlighting something they feel could have been done differently. There’s also been a really positive response from healthcare professionals, who recognise how important it is to hear directly from the people using their services. For me, that’s what this role is all about. Making sure people’s experiences aren’t just listened to but have a genuine opportunity to influence how services are developed and improved. We’re still at the beginning, but I feel we’ve started to build something that could make a real difference.

How does your background influence your approach?
My background is in mental health, so I’m very aware that sharing your experience isn’t always easy. We might be asking someone to revisit one of the hardest times in their life, and we need to take care with that. Some people want to talk about what was difficult because they hope it could be better for someone else. Others want to recognise the care they received and help us understand what worked well. Often, they want to do both. For me, it starts with listening and making sure people feel comfortable, supported and able to share things at their own pace. It’s also about recognising what else they might need. If someone would benefit from a local support group or another organisation, I’ll try to help them make that connection.

What do you enjoy most about working at Spring North?
The team, definitely. We work on subjects like cancer and mental health, which can be difficult, but there is always someone to talk things through with. There is plenty of laughter too, and that makes a real difference. Everyone cares about the people we’re trying to help. If someone spots a connection that could be useful or knows an organisation that could offer support, they’ll share it. You feel part of a team where people look out for each other and want to help you do your job well.
It has also been encouraging to see how much work goes on behind the scenes to improve services. Seeing people’s commitment to listening to patients and learning from their experiences gives me a lot of confidence in what we can achieve together.

How can Spring North members get involved?
I’d really encourage members to think about the people they work with and the communities they support. You might know someone who would be willing to share their experience, or you might have a story of your own. My work focuses on early diagnosis, so I’m particularly interested in people’s experiences of seeking advice, attending screening or going through tests. But I also recognise that everyone’s journey is different, and experiences don’t always fit neatly into particular stages.

The important thing is not to assume your experience isn’t relevant. Every story has the potential to help us better understand what works, where improvements are needed and how we can make a difference. If you or someone in your community would like to share an experience, or your organisation is interested in getting involved, I’d love to hear from you. Get in touch with me at matthew.unsworth@springnorth.org.uk and we can have a chat about how you might like to contribute.