What is Peer Support?

We've been talking about Peer Support for GBS, CIDP, MMN, and the other conditions we support at the Inflammatory Neuropathies UK office. But what is Peer Support? Here’s our Chief Exec Rich to tell us all a bit more about it. 

Here at Inflammatory Neuropathies UK, we like to keep an eye on what we do, and how well we do it, so we are always looking at how often people use services and request different types of support. These tend to fluctuate and demand goes up and down, but we recently noticed that requests for Peer Support had decreased. This prompted us to have a discussion as a team about why this was. 

Peer Support tends to be one of the more popular things within our support offer, but it is one we tend not to talk about as much. We offer it, people take it up, they benefit from it, and we count the number of people who use it. But we don’t showcase it, or really explain the benefits of it. Talking about this as a team, we thought we better do something about that. 

What is Peer Support?

Our Peer Support offer is pretty simple, but incredibly impactful. Basically it involves someone impacted by an Inflammatory Neuropathy (normally either someone with a condition, or a family member) having a chat with someone with lived experience of a condition. This tends to be someone who has had a condition, but could also be someone who has supported someone else through their journey. This gives you the chance to talk to someone who has already been through what you are going through. You can ask questions, share experiences, and find out what to expect next.

Peer Support is provided by our amazing volunteers. This is a group of dedicated people who we know well, who have been vetted and trained, and who we trust to provide honest and appropriate support when you need it most. All of us in the office know about Inflammatory Neuropathies, but we don’t have lived experience of them. That’s why our volunteers are so important. They have all been there. 

How does Peer Support work?  

When someone requests Peer Support, or when they accept an offer of Peer Support, Claire in the office begins a process of matching you with one of our volunteers. We take a whole range of variables into consideration when we are looking for the right person to provide support. These may be personal preferences, condition, age, geographic location, gender, ethnicity, and so on. Basically, we look for the right person from within our volunteers. We can’t always get a perfect match because these conditions are rare, but we have a really diverse group of volunteers from all around the country, so we can always find someone who fits. 

We then arrange for the volunteer to contact you at a time that fits. We can arrange phone calls or video calls, or even messaging. Whatever works for you. It's not often face to face because our volunteers may be anywhere in the UK. 

Some people find that one call is enough, others arrange multiple calls, or maintain long term links to a volunteer. 

What are the benefits of Peer Support?  

The feedback we get about Peer Support is amazing. People find that speaking to someone who actually understands the condition (or has even heard of it) can be life changing. For many people, it can be the first time they have even met someone else with the same diagnosis as them.

Even though experiences may be different, people are able to find common themes and can ask some of the questions that they have never had a chance to ask anyone else. While they are not able to give medical advice, our volunteers can talk about how a condition impacted them, and what steps they have taken along their journey. 

How do you access Peer Support  

If you think you could benefit from Peer Support then it's easy to access. Just give the office a ring on 01529 469910 or email hello@inflammatoryneuropathies.uk. We can then start the process and find you a match. And remember, Peer Support isn’t just for the newly diagnosed, you can access it at any time if you think it could help you. 

Feel free to get in contact with us if you’d like Peer Support, or if you would like to find out more. We are always happy to help.