Simon O’Neill does not shrink from using the ‘e’ word. “This is an epidemic,” the director of care, advocacy and information for Diabetes UK tells me, “hence the recent UN resolution on ensuring that every country has a plan of action.”
The International Diabetes Federation estimates that there are 246 million diabetes sufferers worldwide. This figure is expected to rise to nearer 380 million by 2025. Ageing populations, changing diets and, crucially, an unprecedented increase in global obesity all help to account for such an escalation.
O’Neill has watched this growth with a keener interest than most. On top of his work with the UK charity, the former paediatric nurse has been a sufferer of type-1 diabetes for 15 years. “I wasn’t diagnosed until the age of 28,” he tells me. “That’s rather late in life, although we are seeing an increasing number of such cases here at Diabetes UK.”
That’s not all he’s seen. When O’Neill started out with the organisation 12 years ago, there were an estimated 1.4 million diabetics in the UK. That figure now stands at 2.2 million, with another 750,000 going undiagnosed.
SCREENING IS VITAL
Founded in 1934 by HG Wells, Diabetes UK is a patient, healthcare and research charity that campaigns for improvements in the care and treatment of diabetics. What with the UK boasting among the highest obesity rates in Europe, it would appear to have quite a challenge on its hands and O’Neill does highlight one area that could improve the situation.
“We have no national screening programme,” he begins. “People will probably have type-2 diabetes for seven to 12 years prior to being diagnosed. Most studies show that where there is no active screening, for every person diagnosed with type-2, there is another case that goes undiscovered.”
And it is type-2 that we need to worry about. Although O’Neill acknowledges a marked rise in the number of type-1 sufferers, particularly in the under-five age range, the main concern is the growth in type-2 sufferers, with 80% of cases stemming from obesity.
APATHY AND CONFUSION
This brings with it another problem: non-compliance in regards to medication. A survey undertaken by Diabetes UK and the Association of the British Pharmaceutical Industry found that 65% of sufferers were not taking their medicine as prescribed. One-third of all surveyed did not even properly understand what their medication was actually for.
“There remains an ethos that type-1 is serious while type-2 is far milder,” laments O’Neill. ‘For most people with type-2, their condition will be fairly asymptomatic. What they fail to understand is that they’re on medication to prevent long-term complication.
“It’s probably one of the leading causes of death in the UK, although that is normally seen as being one-stage removed from the diabetes itself.”
The statistics prove O’Neill’s point: diabetes complications are estimated to cost the NHS £3.5bn a year. A rather laissez-faire attitude from many type-2 diabetics is further encouraged by the sheer number of medications that a sufferer may have to be prescribed, and the confusion and inconvenience that such a scenario can cause.
“If you’ve had it for a few years,” O’Neill expands, “you’re likely to be on three tablets to control blood glucose, at least two for blood pressure, a statin for cholesterol levels, plus, if you’re slightly older, tablets for an array of other things as well. If forced to take ten pills a day, a patient is more than likely to stop at five, with no rationale as to what they leave out.”
In order to rectify this situation, O’Neill cites education as crucial. “There’s a strong need for patients to understand what these tablets are, why they are taking them and the seriousness of their condition,” he declares. “We’d like to see everyone having access to an initial course and then ongoing instruction. We have been campaigning for that and continue to lobby for it at primary care trust (PCT) level.”
EMPHASIS ON EDUCATION
Despite the best efforts of Diabetes UK, figures show that just 10% of diabetics in the UK are getting access to structured educational courses. For O’Neill, as director of care, advocacy and information, this serves to illustrate that education has to be a two-way street.
“Healthcare professionals need to be appropriately trained and understand the needs associated with diabetics,” he begins. “They must learn how not to be the only people setting the agenda, and provide forums where information and answers can be distributed. Education will also breed consistency of message.”
This argument reflects the emphasis Diabetes UK places on a more patient-centred approach. “If you don’t understand your condition, how on earth can you self-manage?” O’Neill asks.
“We get people phoning our helpline only to say that their doctor has told them they have a touch of diabetes and they were advised to ring us for a diet sheet. We need an approach where a proper care process takes place, where the patient is placed at the very heart of the consultation.” He also cites the importance of family and friends being involved every step of the way.
Diabetes UK is producing guidance on what this process will look like. Another issue surrounds the mere seven-minute consultation time any patient is likely to receive with a healthcare professional, although O’Neill sees a way around this.
“We’re beginning to see scenarios where, rather than short one-to-one appointments, there’s been a growth in hour-long sessions with ten patients present,” he says. “People can be quite intimidated by group appointments, but most find it extremely beneficial. Anything that enables patients to ask questions and learn is vital.”
A DIFFICULT PATH AHEAD
The healthcare system will have to find successful initiatives for encouraging compliance because, as things stand, there are no quick fixes on the horizon. If anything, prescriptions may even become more complicated. “The more we learn about diabetes,” O’Neill tells me, “and you must remember that we’ve only been treating type-2 since the mid-1960s, the more we realise that people needed to be treated aggressively. That will invariably mean more drugs and intervention.”
One can look overseas for encouragement. In countries where insurance companies play a more active role in the healthcare system, education has been proven to be beneficial and seen as a potentially massive money-saver by the corporations that stand to foot any healthcare bills.
O’Neill, however, likes to highlight an example rather closer to home. “I attended a course called DAFNE [Dose Adjustment for Normal Eating],” he chuckles. ‘There I was, a former healthcare professional with type-1 diabetes and employed at Diabetes UK. I didn’t think there was anything some course would teach me. It lasted a week and, by the end, I had improved my HbA1c by 1%.
“This wasn’t because I was taking any more insulin, it was because I’d been taught to make better decisions about managing it. And I wasn’t the only one: there were people there who’d been struggling along as best they could but without any info to back them up. It was great seeing education galvanise people into really making a change for the better.”
This is cause for optimism, but also an indication of the changes that all in the healthcare profession need to embrace.