Andrew Kliman’s fears were confirmed when his GP told him to come in immediately. “He said the blood tests had shown that I had Type 2 diabetes,” Kliman, 38, recalls of his diagnosis two years ago.
At first he was impressed with his care. He was prescribed the drug Metformin, sent on a helpful course about how to manage diabetes and saw the diabetic specialist nurse (DSN) at his GP practice in north London.
But before long, Kliman became disillusioned with how he was being treated. “Initially the appointments with the nurse were good. But then each time I came in she didn’t know who I was or what my test results were. So gradually I lost my confidence in her. And I was given a blood testing kit but no one at the surgery showed me how to use it. I had to get a local pharmacist to show me,” says Kliman. The more he found out about his condition, the more he realised how little his family doctor seemed to know about it. “I wasn’t happy with the service I was getting from my GP practice, or that they understood my situation and diabetes well enough.”
Receiving advice from staff there that conflicted with guidance from charity Diabetes UK, for example on food portion sizes, and what he calls recent “wrong and harmful” guidance from a GP about some medication, were the final straws. He switched his care to nurses at the nearby Whittington hospital, in north London, who he says are “excellent, because they are well-informed and answer my questions and know what they are talking about because they deal with diabetes every day”.
Pressed to score his experience of NHS diabetic care, Kliman – who blogs about his condition and NHS diabetic care – replied: “For the advice I’ve had from general practice, their overall attitude and my confidence in their understanding, I would give them four out of 10. But I’d give the specialist nurses at the hospital nine out of 10.”
Overall, how is the NHS doing on this serious and fast-growing condition? Concerns are rising that diabetes care is being affected by the financial pressures on the NHS and not keeping pace with the growing numbers of patients with the condition, which in 2009-10 grew by 150,648 to hit a new UK record high of 2,784,911 – 4.26% of the population. There are two Types of diabetes and Type 2, which is heavily linked to obesity and unhealthy lifestyles, is the one causing the figures to spiral.
The number of unfilled DSN posts in England has doubled to 218, which is about one in eight of what the service’s full complement should be. Worryingly, 43% of those are vacant as a direct result of NHS cost-saving measures, Diabetes UK discovered in a recent survey.
Dr Peter Carter, chief executive of the Royal College of Nursing, argues that trusts must continue to invest in specialist services, such as diabetes specialist nurse positions, so that patients are not put at risk of needless complication. “With expert help and advice, people with long-term conditions such as diabetes are kept as well as possible and out of hospital,” he says.
Some primary care trusts are refusing to prescribe drugs called gliptins, which are used to treat Type 2 diabetes, because they deem them too expensive. Diabetes UK chief executive Barbara Young warns that this “extremely worrying” trend could affect patients’ health and cost the NHS more money in the end. “This would be very short-sighted as complications of diabetes, like kidney failure, are hugely expensive”, she says.
One in three diabetics, some 958,000 people in all, could be endangering their health and mental wellbeing by keeping their condition a secret, a survey released by the charity for Diabetes Week shows. The poll contained one finding that should cause serious unease in the NHS. Of the 3,764 people with the condition across the UK who were quizzed, 39% believed they did not receive enough support to manage their condition, and 72% of them wanted more support from their healthcare team.
These alleged failings are hard to understand given the huge cost of diabetes to the NHS, its sharp upward trajectory and status as one of the long-term conditions that could overwhelm the service in the not too distant future. The condition accounts for an estimated £9bn-£10bn of health service spending, and 15%-20% of inpatient beds are occupied by diabetics. And it is going to get much worse. As Young points out, an estimated 850,000 people have the condition without knowing it according to the Department of Health, on top of the 2.8 million who have been diagnosed. “And there are another seven million who are at very high risk, who will develop diabetes if they don’t change their lifestyle”, she says.
The disease’s low profile means many people still do not know what Type 2 is or its potential consequences, such as blindness, stroke and amputation of a limb.
Roger Baker, a Type 2 diabetic, last week won £40,000 in damages after misjudgments and substandard care by both his GP’s surgery and the Mayday Healthcare NHS trust in south London over his foot ulcer meant he had to undergo extensive surgery to remove part of his right foot. It is by no means the first failing of NHS diabetes care seen by his lawyer, Philippa Luscombe of Penningtons solicitors. She has also settled a case where a GP failed to spot classic signs of acute onset diabetes in a woman in her 30s, who later collapsed and died, leaving a husband and five children.
While the lack of public awareness is a problem, Luscombe says, her experience of such cases suggests recurring failures by health professionals. “Some patients have been diagnosed with a virus or stomach upset or kidney infection for some time when in fact they had developed diabetes and diagnosis only followed significant deterioration,” she says.
“We also see a trend of doctors, perhaps more in AE than GPs, failing to properly consider the implications of a patient with diabetes when managing what might otherwise be a significant problem, such as infection or a fracture, which can lead to complications and problems that might otherwise be avoided.”
Since Conor McGurran was diagnosed with Type 1 diabetes – a condition that can be triggered by a virus or infection in childhood – at the age of 13, he has received good support from specialists at Basildon University hospital, in Essex. This includes nurses, a dietitian, psychologist and diabetician. Four years on, he thinks the NHS policy of diabetics no longer receiving hospital-based care once they reach adulthood, and instead only visiting their GP as and when necessary, is “shortsighted”. Given that a proportion of Type 1 diabetics continue to have problems managing their condition even in adulthood, they should be able to access the full range of specialist care that only hospitals can provide, and thus minimise their chance of losing a limb in later life, he believes.
Young is also worried that diagnosis of diabetes is too often late, which can further affect a patient’s health. A Royal College of GPs’ study in March found that 2.2% of people were wrongly diagnosed and another 2.1% were told they had one Type when in fact they had the other. Young says firmly that the NHS must do better across the whole pathway of diabetes care.
The Department of Health acknowledges that there are areas of diabetes care where more should be done. For example, the NHS national operating framework for 2011-12 states that: “NHS commissioners and providers must do more to ensure insulin pumps are available for those people with diabetes that meet the criteria. [And] Primary care trusts should be commissioning the relevant structured patient education to support people newly diagnosed with diabetes and at appropriate points in their life as their condition progresses.”
But Young wants ministers to undertake an advertising blitz to raise the condition’s profile, and to devise a diabetes national plan which has the same urgency as the plans for cancer. “We need a plan with clear outcomes and real, concerted action by a whole load of players, including government, and led by government,” she says.
“What’s worrying is that nothing that’s been done so far [to reduce diabetes] seems to have influenced this. It’s just going up in a very steady progression.”