Community is about more than where you live. It’s about who you are, and who you link with

Community is one of those words we all use, but what does it actually mean? For some of us, it is the street we live on, our  town, our village or our city. It is the people we see every day, the local groups we belong to and the services around us. That kind of community is incredibly important.

Anyone who knows me will know I have long championed the power of neighbourhoods and local communities. My time at Sortifed was all about connecting people and place, and understanding local networks. Strong places create opportunities, improve health and wellbeing, and help people feel connected. We should absolutely keep investing in and developing them. In fact, I think we need to do more of it, not less.

But community is not just about place. Sometimes, community is about shared experience, and for people living with Inflammatory Neuropathies, that shared experience often matters even more than geography. Sometimes, it’s all about finding your people, finding your tribe.

Inflammatory Neuropathies are rare conditions. Most people will never meet someone else with Guillain Barré Syndrome, CIDP, MMN or another Inflammatory Neuropathy in their local area. Some people go years without speaking to another person who truly understands what life is like. That is where a community of interest becomes so important.

Someone living in Newcastle may have more in common with someone in Plymouth than with the people living next door. They are connected by something much bigger than distance. They understand the fear of diagnosis, the uncertainty of recovery, the frustration of living with ongoing symptoms or residuals, and the relief of finally finding someone who simply gets it. Those relationships are every bit as real and every bit as valuable as those built around where we live.

That is why I have been reflecting on the recent changes to National Lottery funding guidance, which places an even stronger emphasis on communities of place. I understand why. Place matters, and it always will. But I also think we need to be careful not to create a false choice between communities of place and communities of interest.

The reality is that both matter. The danger is that, without intending to, funding starts to favour one while overlooking the other. That would be a mistake.

A person living with a rare condition does not stop needing support because there are only a handful of people nearby with the same diagnosis. Their need is no less real, their isolation is no less real, and their community is no less real. In fact, you could argue that communities of interest are often the hardest to build and therefore the ones that need investment and development the most. You cannot rely on geography to bring people together. You have to work much harder to create those vital connections across towns, regions and nations, and that takes time, expertise and, yes, funding.

With Andy Burnham preparing to become Prime Minister, it is clear that place will continue to shape how we think about communities. Andy has been one of the country's strongest advocates for empowering local areas and devolving decision making closer to people. There is much to admire in that vision, and I agree with a great deal of it. We should continue building stronger neighbourhoods and giving local communities more power over the things that matter to them. We also need to bring services, like health services, closer to people, not further away.

But I also hope this is not where the conversation ends, because not every issue is defined by a postcode. Rare diseases do not stop at county boundaries. Needs do not stop at regional borders. Caring responsibilities do not change because someone lives in a different part of the country. The need to belong and to find people who understand your experience exists everywhere.

That is why communities of interest deserve to be recognised as part of our social fabric too. We should never have to argue that one type of community is more valuable than another. They are different, but they are equally important, and good public policy should recognise both.

At Inflammatory Neuropathies UK, we will never stop championing our community wherever it exists. We will champion people in their neighbourhoods, help create local connections where they matter, and work with partners to strengthen support in communities across the country.

At the same time, we will continue bringing together people from every corner of the UK who share the experience of living with Inflammatory Neuropathies, because nobody should ever feel alone simply because the person who understands them happens to live hundreds of miles away. We will do this online, in forums, via phone calls, and yes, in real life where we can.

Community is not measured in miles. It is measured in belonging, understanding and knowing that someone is there when you need them.

Whatever direction public policy takes in the months and years ahead, that belief will not change. We will keep speaking up, keep bringing people together and keep championing our community at neighbourhood level, at place level, at regional level, and right across the whole country. Because everyone impacted by Inflammatory Neuropathies deserves to belong somewhere, and we will always be here to help make sure that happens.