When George Rodgers received the Diabetes UK Supporting Others award, it was clear how far he had come. He had given whole groups of people a source of support and comfort. He was inspiring medical professionals to explore new avenues of research. And yet, he just felt nervous: “When I went up and got it…speaking out to people…that was nerve-wracking.” It is perhaps this vulnerability, this human face he placed on a complex medical debate, that made his story resonate in the first place.
George won the award because he was one of the first people in this country to speak about a very particular condition: that of living with both type 2 diabetes and HIV. He was diagnosed with HIV in 1994, and began taking anti-viral HIV medication in 1999. They had a devastating effect.
“One of the tablets they gave me ended up giving me pancreatitis, and that’s what tripped off the diabetes. Any problems that pushed my sugar levels into double figures, they kept putting down to my lifestyle, despite the fact that at the time I was going to the gym regularly and eating sensibly.”
For years, George searched for a consultant who would understand his specific condition, but he was left frustrated. None of the GPs he spoke to understood that the two conditions were interacting with and exacerbating each other.
“When I got first diagnosed with diabetes,” George told Diabetes.co.uk, “my HIV care team didn’t want to know about the diabetes at all. You know, giving me medication which makes the situation worse, and I ended up having to stop taking my anti-virals, which you’re not supposed to do, because the doctor didn’t take on board the fact that it was the medication that was causing more problems.”
His HIV doctors ignored his diabetes, and his diabetes doctors ignored his HIV. Unsurprisingly, he didn’t get better.
So George took it upon himself to find out more. He scoured the internet and found a few springs of hope from American websites. Over there, people were beginning to recognise the condition.
George had spent the last decade of his life feeling alone and frustrated at the lack of support for his condition. The very people who were supposed to be helping him were uninterested, often prescribing things that would actively make the condition worse. He was alienated, living with an often-stigmatised disease. There was nobody he could talk to or rely on.
Faced with the loneliness of his situation, George took a chance: hoping there were other people out there who would understand, he reached out, establishing the HIV and Diabetes Support group (H.A.D.). Before long, he had built a whole network of people in the same predicament.
George believes that its success was largely down to the emotional impact of his story; people like him are moved by his willingness to stand up and speak from a place of isolatio, regardless of who might judge him.
“I think it’s probably because I’ve been brave enough to stand up and admit that I’m HIV. That’s the main part. Nobody’s ever really come forward about being HIV and diabetic before.”
The group has gone from strength to strength – its meetings now often include doctors and guest speakers. It has provided support, information, and – most importantly of all – it has got people talking about the experience of living with HIV and type 2 diabetes.
But it hasn’t been easy. At first, George struggled to drum up support from HIV groups:
“One organisation I approached, they said they didn’t want to know because they didn’t want people to be scared off going on medication. Yet the people I spoke to who attended the group said they needed to know these things, because it’s part and parcel of taking the anti-virals.”
And then, to his complete surprise, he was nominated for the Diabetes UK Supporting Others 2015 award. The judges were unanimous in their decision to give the award to George, citing “the huge impact George’s work is having supporting others living with these two complex conditions. The award recognises HAD Support’s innovative and crucial work the group does in strengthening the voice for the community and the value of peer support.”
“I wasn’t expecting it at all,” George says. “It was a shock.” But in many ways, it’s not surprising that George’s story resonated with a wider audience. Aside from his admirable bravery, his compelling story highlights one of the biggest problems facing the NHS: how to deal with patients with complex conditions, or multiple related conditions.
In 2013, The King’s Fund produced a report – “Co-ordinated care for people with complex chronic conditions” – but little seems to have changed. In the run-up to the recent general election, it became a key part of the healthcare debate. The NHS produced a “Five Year Forward View,” in which they described the need to break down:
“Artificial boundaries between hospitals and primary care, between health and social care, between generalists and specialists…services fragmented, patients having to visit multiple professionals for multiple appointments, endlessly repeating their details because they use separate paper records.”
George believes that the medical profession needs to “integrate more people who have got more than one health condition. I’ve been hearing stories about people living with cancer and diabetes, and they get similar problems.”
Perhaps part of George’s success is that he has given a human face to the frustrations felt by millions. He speaks not only for those with HIV and diabetes, but for everyone who has been passed back and forth between departments, having each aspect of their condition treated separately, with no attention paid to the whole. That group will include almost everyone with a diabetic complication.
George’s journey has been long and arduous, but he is beginning to see the fruits of his labour. Slowly but surely, people are taking note.
“My ex-partner, he’s just now been given the right information, he’s just been diagnosed with borderline diabetes, he’s got prediabetes, and he’s just been sent on a DESMOND course. Now that same hospital didn’t give me any advice at all, they just didn’t want to know. So I’ve got a feeling from my experience that they are taking it more seriously, but I had to go through all the crap first.”
Next up, George will be speaking at a conference at Chelsea and Westminster Hospital. In the company of dietitians and doctors from the hospital, he plans to use the opportunity to call for greater support for people with complex conditions, particularly HIV and diabetes.
“Basically I’m bringing up the fact that we do need better support, and there does need to be a better understanding, especially between our healthcare teams. There needs to be better communication. That’s what seems to be lacking as well.”
George’s rapid success is changing hearts and minds. His work draws attention to some of the most important issues facing the medical professio, from the need to treat complex conditions to the importance of tailoring medications treatment to the needs of individuals.
But, most importantly of all, George’s work offers comfort and support to people in difficult situations. By speaking out from a place of isolation and borderline despair, he ensured that others needn’t suffer in silence.
