Helping patients to help each other

Diagnosed with type 1 diabetes at age seven, it was when he hit his mid teens that Nick Guerin really began to feel the impact. The transition from paediatric to adolescent services meant a radical change in the way he was treated – and the way he responded.

“I was being managed as an adult would be managed, and expected to meet targets that, to a child, seemed unrealistic. I was still at school, there were other changes in my life. I suppose I built a bit of a barrier.

Diagnosed with type 1 diabetes at age seven, it was when he hit his mid teens that Nick Guerin really began to feel the impact. The transition from paediatric to adolescent services meant a radical change in the way he was treated – and the way he responded.

“I would come out of an appointment – where I’d been told I’d missed my targets – and I didn’t feel empowered, I felt browbeaten.”

Not geared up

This, in a nutshell, is why it is vital to get the relationship right between the health professional and diabetes patient. Mr Guerin admits that he disengaged with services and became “self-regulated” because services were not geared up for him.

Today he points to the lack of psychological support, the many appointments he was expected to attend, and a general lack of empathy for what he was going through. “I don’t know what the long term impact on my health will be from that time, but I was lucky,” he says.

“I had a couple of episodes, severe hypos. I lost a lot of weight – my medication needed to change, but I didn’t know that. But it could have been much worse.”

Now 29, Mr Guerin is using an insulin pump which has, he says, changed his life. He has also done his first structured education and become a peer educator, as well as an advocate for better diabetes services.

“We need to get the basics right, and education is a firm foundation for that. There are structured programmes but they’re not freely available. There are people who have asked to go on courses but they are having to wait. These are people who are reaching out but they are being let down.

“It’s really important that the health service equips and empowers people so that they can help themselves.”

Big impact

A keen blogger, Mr Guerin says education and sharing information in various ways has a real impact. In some situations, people are more likely to be honest and share what is actually happening with someone who has been facing similar challenges.

“I get a lot of inbox messages through Twitter,” he says. “People who have read my blog or heard me speak will get in touch, and I’m able to signpost them to Diabetes UK.

“I’ve walked that journey and know the pitfalls. Everyone’s experience is different, but it’s about being honest about things like bad habits. I’m able to say ‘that happened to me; I’ve done that’.” People can feel embarrassed to give the full picture in consultations with health professionals, he says, because they fear being judged.

“Clinic appointments should be beneficial – you should feel you are able to speak to someone. But there’s a problem if people aren’t engaged and don’t feel able to be honest about what they are actually doing.”

The concept of patients helping each other received a boost last month. A report published by National Voices and Nesta found that peer support can help people feel more knowledgeable, confident and happy, and less isolated.

This was the case for one to one peer support, group support (run by trained volunteers, health professionals, or informal peers), or online, forum based support.

Long way to go

“It’s very hard to compare the different elements, which makes it difficult for commissioners,” says National Voices policy director Don Redding. “We need to build up more evidence. But what is clear is that group based peer support can be effective, and online and one to one support also work.”

There is, he says, growing recognition that interventions such as peer support and education can help build knowledge, skills and confidence in patients, but more needs to be done.

“The people with the greatest burden of health need are often those with the lowest health literacy,” he warns. “The process and time taken to build knowledge, and especially confidence, so that people can take more responsibility [for their condition or conditions] shouldn’t be underestimated.

“And like any of us taking on a task, there might be periods where things get on top of us, and our ability to maintain confidence can drop. This isn’t about a one-off intervention; it’s an ongoing process of support.”

“I would come out of an appointment – where I’d been told I’d missed my targets – and I didn’t feel empowered, I felt browbeaten.”

This, in a nutshell, is why it is vital to get the relationship right between the health professional and diabetes patient. Mr Guerin admits that he disengaged with services and became “self-regulated” because services were not geared up for him.

Today he points to the lack of psychological support, the many appointments he was expected to attend, and a general lack of empathy for what he was going through.

Life changing

“I don’t know what the long term impact on my health will be from that time, but I was lucky,” he says. “I had a couple of episodes, severe hypos. I lost a lot of weight – my medication needed to change, but I didn’t know that. But it could have been much worse.”

Now 29, Mr Guerin is using an insulin pump which has, he says, changed his life. He has also done his first structured education and become a peer educator, as well as an advocate for better diabetes services.

“We need to get the basics right, and education is a firm foundation for that. There are structured programmes but they’re not freely available. There are people who have asked to go on courses but they are having to wait. These are people who are reaching out but they are being let down.

“It’s really important that the health service equips and empowers people so that they can help themselves.”

A keen blogger, Mr Guerin says education and sharing information in various ways has a real impact. In some situations, people are more likely to be honest and share what is actually happening with someone who has been facing similar challenges.

“I get a lot of inbox messages through Twitter,” he says. “People who have read my blog or heard me speak will get in touch, and I’m able to signpost them to Diabetes UK.

“I’ve walked that journey and know the pitfalls. Everyone’s experience is different, but it’s about being honest about things like bad habits. I’m able to say ‘that happened to me; I’ve done that’.” People can feel embarrassed to give the full picture in consultations with health professionals, he says, because they fear being judged.

“Clinic appointments should be beneficial – you should feel you are able to speak to someone. But there’s a problem if people aren’t engaged and don’t feel able to be honest about what they are actually doing.”

The concept of patients helping each other received a boost last month. A report published by National Voices and Nesta found that peer support can help people feel more knowledgeable, confident and happy, and less isolated.

This was the case for one to one peer support, group support (run by trained volunteers, health professionals, or informal peers), or online, forum based support.

“It’s very hard to compare the different elements, which makes it difficult for commissioners,” says National Voices policy director Don Redding. “We need to build up more evidence. But what is clear is that group based peer support can be effective, and online and one to one support also work.”

There is, he says, growing recognition that interventions such as peer support and education can help build knowledge, skills and confidence in patients, but more needs to be done.

“The people with the greatest burden of health need are often those with the lowest health literacy,” he warns. “The process and time taken to build knowledge, and especially confidence, so that people can take more responsibility [for their condition or conditions] shouldn’t be underestimated.

“And like any of us taking on a task, there might be periods where things get on top of us, and our ability to maintain confidence can drop. This isn’t about a one-off intervention; it’s an ongoing process of support.”