The Real Story Behind the National Disability Card Scheme: Interview with our Director

On the National Disability and Carers Card Scheme podcast, we speak to people with lived experience of disability and caregiving to explore the realities behind the need for better support and recognition. In our latest interview, we sat down with Edward Herbert, director of the scheme, to talk about his own experience as a carer, the inspiration behind the scheme, and ambitions for its future.

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Please note the content of the podcast has been abridged and paraphrased for readability. You can watch or listen to the full podcast using the links in this post.

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To begin, could you tell us a little about yourself?

I’m Edward, Director of the National Disability and Carers Card Scheme. But before that, I was a carer for my sister, Millie, who has cystic fibrosis. Caring for her was really the foundation for everything I do now.

From an early age, I helped support her, but it became especially significant once I started working and we were living together. Balancing a job with caring responsibilities meant I was effectively living two parallel lives. That experience, and the experiences of my family, were what ultimately led us to create the scheme.

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What was the link between your caring experience and setting up the scheme? Why were the National Disability Card and National Carers Card needed?

For years, I found myself in situations where I wished I had something simple and official to show that I was there as a carer. Not just as a friend or family member, but in a genuine support role.

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At the same time, my sister often faced situations where having a recognised disability card would have made a real difference. There were so many moments where people misunderstood what was happening.

For example, she once passed out in a pub and was assumed to be drunk. Instead of receiving understanding or support, she was asked to leave. A card would have helped explain the situation immediately.

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That kind of experience is not unusual. Across the country, disabled people and carers regularly face situations where they need to quickly and confidently communicate their needs or role. That’s what the scheme is for.

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How does the scheme help people in practical terms?

First and foremost, it gives people something recognised that shows that they are a carer or that they are disabled. That alone can be incredibly powerful.

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Second, it can help in venues or public spaces where concessions or support may be available. For example, a carer may need to accompany someone into a venue or explain why they are providing support.

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And third, the scheme offers discounts and benefits. There are so many hidden costs involved in both disability and caring - travel, food, hospital visits, everyday essentials. We wanted to create something that could make life a little easier in practical terms as well.

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Can you share an example of a situation where having a card made a real difference?

One example that stands out happened at hospital. My sister was staying on a ward and really wanted a particular soup from a nearby restaurant - something I thought might be one of the only things she’d manage to eat that day.

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I went to get it, but when I returned, I was a few minutes past visiting hours. A temporary security guard stopped me and wouldn’t let me back in, even though I explained I was only dropping off the food and leaving again.

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I happened to have my National Carers Card with me. Once I showed it and explained that I was there in a caring capacity, his whole approach changed. He understood immediately that I wasn’t just visiting casually - I was there to support someone who needed my help.

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That’s what the card does. It helps explain your role clearly in everyday situations.

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Very often, it’s the everyday interactions that matter most to people.

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It could be using an accessible toilet when someone’s disability is not immediately visible. It could be asking for support in an airport where there’s a language barrier. It could be standing outside a disabled toilet while the person you support is inside, or returning to a car parked in a disabled bay to collect medication.

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These moments can feel awkward or stressful when you have nothing to show. A card or lanyard can remove that tension and give people confidence.

Did you feel carers were often overlooked?

Absolutely. There is growing understanding of disability and hidden disabilities among staff and members of the public - although not always enough - but there is often far less understanding of the role of a carer.

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People may not realise why a carer needs to be present, why they’re accompanying someone, or why they need access or flexibility in a particular situation. A clearly visible carers card or lanyard helps communicate that instantly.

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It avoids awkward explanations and helps others understand: “I’m here for a reason. I’m supporting this person.”

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The scheme places a lot of emphasis on professional card design and security. Why was that so important?

The first reason is practical. If major venues are offering meaningful concessions or discounts, the card needs strong security features so it cannot simply be copied or made at home.

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The second is about seriousness. These are serious issues. When someone is asking for support, understanding, or a concession, the card needs to reflect that. It should look professional, secure, and credible - not simplistic or cartoonish.

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We’ve invested heavily in getting that right, from the design itself to the way cards are printed and handled in-house. We take data protection seriously, we assess eligibility properly, and we want the finished card to reflect the seriousness of the support it represents.

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How does the scheme assess eligibility?

For the National Disability Card, applicants need to meet the standard set out in the Equality Act 2010. That’s very important to us. This isn’t an informal or open-ended scheme. There is a proper standard, and we have a team that reviews evidence carefully. That protects the integrity of the scheme and helps ensure support is directed to the people who genuinely need it.

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What milestones are you most proud of?

I’m proud of how far we’ve come in terms of professionalism, security, and operations. From the beginning, we made the decision to handle printing in-house, even though that is more difficult and expensive. We wanted proper control over security, quality, and data handling.

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I’m also proud of the culture we’ve built. It feels like a family - both within the team and with our card holders. Many of our early supporters helped shape what the scheme has become.

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What’s coming next for the scheme?

We’re very excited about the launch of our app, which will help card holders find nearby discounts and benefits more easily. We’re also continuing to improve our printing technology and introducing new card security features in the future. There’s a lot in development, and we want to keep building something that genuinely works for disabled people and carers.

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What has surprised you most over the last few years?

The number of stories we hear from card holders. So many people have told us how useful the scheme has been in real-life situations, and many of those stories reflect challenges that felt very familiar to me from my own experience. It’s been powerful to see just how widely these experiences are shared.

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What is your long-term ambition for the scheme?

I want the National Disability Card and National Carers Card to become the national standard for disability and carer verification.

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If someone feels a card would help them communicate their needs or role more clearly, I want them to know that this is the scheme to turn to. We’ve been growing quickly, and that’s very encouraging, but the real goal is recognition, trust, and meaningful support on a national scale.

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Is there one more thing you’d want people to know about the scheme?

Don’t be scared to apply! A lot of people worry that they won’t have the right documents, or enough evidence, or that their diagnosis was too long ago. But we are here to help. We have a phone number that people can call us on to talk through their situation, and get guidance on what they need. We want the process to feel supportive, not intimidating.

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How can people support the scheme or help spread awareness?

If you’re part of a disability or carers group, get in touch. We can provide leaflets, digital flyers, QR codes, and support materials to your group.

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And we’re always keen to hear from organisations that want to become partners and offer support or discounts to verified disabled people and carers.

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