As the number of people living with long term conditions continues to soar, a new approach is needed to equip patients with the knowledge they need to help manage themselves.
In the NHS Five Year Forward View, NHS England chief executive Simon Stevens stresses that the health service has to change.
Rather than providing “single, unconnected episodes of care”, long term conditions are now a central task of the NHS, he writes. “Caring for these requires a partnership with patients over the long term.”
The way ahead, he adds, includes integrating services around the patient, managing systems or networks of care, not just organisations, and, importantly, learning faster from the best examples of good practice.
It is well recognised that the forward view was published against a background of stretched healthcare systems trying to meet growing demand from a patient population that is only likely to get sicker.
NHS England’s own figures show that some 15.4 million people, a quarter of the population, have a long term condition, and the number with three or more is expected to rise from 1.9 million in 2008 to 2.9 million in 2018.
This matters, on both a human and health economics level. People with long term conditions absorb a massive amount of healthcare time and resource: 50 per cent of all GP appointments, 70 per cent of hospital bed days and £7 in every £10 spent in hospital and primary care budgets
Don Redding, director of policy for National Voices, the coalition of health and social care charities in England, agrees that health services must change to meet the needs of patients.
“Long term conditions are changing the NHS model of waiting for people to present for diagnosis and treatment; episodic, reactive care is not right for today’s core customers,” he says.
“In the 1950s, the model might have been around the working age person expecting to be treated and get back to work. Now we have people who have a condition that isn’t going to go away and might last years or even decades. Waiting for things to go wrong that send the patient to the GP or to urgent care services is sub-optimal care for the patient and costly for the NHS and the taxpayer.”
Diabetes is a case in point. According to Diabetes UK, the number of people with the disease (types 1 and 2) is set to rocket from around 3.2 million today to 5 million by 2025.
This is bad news for health and social care budgets. A report from the charity published last year (see box, below) warns that the NHS spends £10bn annually on diabetes, about 10 per cent of its entire budget.
Alarmingly, a high proportion of this (£7bn) goes on complications of diabetes, many of which could have been prevented if people had received better education in the first place.
Cost of complications
The Diabetes UK report warns that the largest cost for complications are excess inpatient days, cardiovascular disease and damaged kidneys and nerves. Others include ketoacidosis, hypo and hyperglycaemia, stroke, and foot ulcers and amputations.
The full cost of diabetes
The Cost of Diabetes was published by Diabetes UK in May 2014. The key findings include:
- One in seven hospital beds is occupied by someone with diabetes.
- Each year in the UK, 24,000 people with diabetes die early.
- Diabetes is the leading cause of blindness in people of working age in the UK.
- Just one in 10 of those diagnosed with diabetes is offered a structured education programme.
- More than 100 amputations are carried out on people with diabetes every week because of complications with their conditions; yet 80 per cent of these are avoidable.
- The NHS is estimated to spend more than £600m per year on foot care – trusts that have introduced multidisciplinary foot care teams have reduced the number of amputations by half.
- A survey by Diabetes UK showed that some people with diabetes who are taking insulin are being denied the chance to monitor their blood glucose levels because test strips are reportedly being rationed. Poor control can lead to hypoglycaemia and potentially fatal diabetic ketoacidosis. In the long term, high levels of blood glucose can result in serious and expensive complications.
Treatment itself can cause problems, with insulin being one of the drugs most commonly associated with adverse events leading to serious harm.
Robin Hewings, head of policy with Diabetes UK, says that helping people to manage their diabetes better is vital.
“The key thing is that this isn’t about the doctor doing things to the person with diabetes; the vast amount of work is being done by the person who is managing their diabetes day in, day out.
“We should be using the experience of healthcare professionals to help people understand what’s going on with their body and to help them learn, and to be motivated to do the hard things that they have to do – for example, learning to use insulin. Diabetes care is a difficult paradigm: it’s not about the doctor as mechanic, it’s about the doctor as coach.”
‘Diabetes care is a difficult paradigm: it’s not about the doctor as mechanic, it’s about the doctor as coach’
Getting it right will mean big financial gains for the NHS but the problem is that they will take time to come through. “If you get things right in one place at one time, the people who benefit might be in different parts of the NHS years later.”
Persuading commissioners and providers to focus on diabetes can be difficult, he says, because the actual spend looks relatively small. Where the real costs come in is when dealing with complications.
“The diabetes line in the accounts doesn’t jump out. But it’s actually showing up in heart disease, kidney failure, [accident and emergency] and in social care packages. The spend is huge but the diabetes bit never looks that big, so it doesn’t look like a priority.”
But there are some potential quick wins, he says. For example, one in six people who are in a hospital bed have diabetes but they are not there for their diabetes.
“Things often go wrong, which means longer length of stay,” Mr Hewings says. “Helping them to manage their diabetes in hospital with specialist teams saves money quickly.”
Making sure existing resources are used wisely is also important, ensuring people get the checks they need – for example, feet and eyes – and that they are on the right medications and are using them properly.
Patient education is a big issue, he says. “There are courses for people with diabetes to learn about the condition and understand it in some depth. This is a level of detail you won’t get in a leaflet. The courses work well and are cost-effective.”
He says it is important to provide options so that people can learn the way that suits them - for example, in places and at times that are sensible for working people.
Whatever happens in diabetes management more generally, he says, things must change. “If we carry on as we are, it might get you through the next financial year but it won’t get you through the next five,” he says. “This is serious.”
Getting to the point where the patient understands the importance of adhering to treatment has important implications for their health as well as healthcare resources.
Studies over many years have shown that intensive blood glucose control reduces the risk of any cardiovascular disease event by 42 per cent, the risk of eye disease by 76 per cent, and kidney disease by 50 per cent. This obviously has an impact on health service resources, as well as patients.
So what is the NHS doing to tackle all these issues?
Last year, NHS England published Action for Diabetes, a plan that outlines how it would like to see better prevention of type 2 diabetes, earlier diagnosis of all diabetes and support for people to manage their diabetes better.
Since then, NHS England, Public Health England and Diabetes UK have launched a major initiative to try to reduce the number of people expected to get diabetes in the next decade. The National NHS Diabetes Prevention Programme aims to put evidence into action and will initially target people at high risk of developing the disease.
But while the focus on prevention is largely welcomed, what is happening to those who already have the disease?
Jonathan Valabhji, national clinical director for obesity and diabetes with NHS England, says it is important to distinguish between type 1 and 2 diabetes, pointing out that the vast majority of cases (90 per cent) are type 2, which tends to occur in adults. Type 1 diabetes is usually diagnosed in childhood, and is an immune condition, not connected with lifestyle.
“Complications are often associated with the length of time you have the disease, so although type 1 patients only make up around 10 per cent of those with diabetes, they are overrepresented [in terms of complications].
“But the real explosion is in type 2 diabetes – and while around 2.7 million people know they have it, there are many more who have it, but don’t yet know it.”
Type 2 explosion
While the outlook for each individual with diabetes has improved – life expectancy is better than previously, risk of heart failure or amputation is dropping – but it is a different picture at a population level.
“The problem is that as we see more and more people with diabetes, the total burden on the NHS grows,” Professor Valabhji says.
“That’s why it makes sense to focus on prevention, targeting people we know are at higher risk and encouraging them to make lifestyle improvements. That’s important for the individual, who reduces his or her risk of developing this disease, but it’s also good
for the sustainability of the NHS in the long term.”
‘It makes sense to focus on prevention, targeting people we know are at higher risk and encouraging them to make lifestyle improvements’
Secondary prevention is also key, he says, pointing out that optimal care for people with diabetes can help avoid serious complications.
He argues that the quality and outcomes framework (QOF) of the GP contract has made a major contribution to reducing complications, with around 13-15 per cent of indicators related to diabetes, ensuring that patients get annual reviews and other monitoring.
“We’ve seen dramatic improvements, although we’ve probably milked what we can out of QOF,” he says. “But we’ve achieved a lot, such as a big reduction in heart failure.”
One of the big issues highlighted in the Diabetes UK report is a lack of patient education. Although the National Institute of Health and Care Excellence recommends that all patients are offered structured education – generally meaning a course that lasts several days – this is far from the case in practice.
Few patients (18 per cent) are offered it, and of these, only a quarter take it up.
Professor Valabhji says it is important to explore different ways of imparting knowledge to patients. “Empowering people is vital,” he says. “Patients spend only 4-6 hours a year with a health professional; the rest of the time it’s up to them, and they must be empowered to deal with that.”
Structured education is not the only way, he says. “NICE has defined what structured education looks like but that’s quite a high bar for people. It’s what we’re calling the gold standard but it’s not translatable for all people’s working lives.
“Most people get a little education – it doesn’t tick the [NICE] box but it helps. We’re interested in looking more broadly at educational interventions – for example, young people in particular are IT savvy. While the gold standard may be what NICE says, a lot could be done online.”
Ensuring that management of diabetes improves is a big challenge, he acknowledges, but he is optimistic. “What I see is some exciting opportunities going forward,” he says. “It’s a good time for diabetes. We’ve got the forward view, the action plan, and now the prevention programme.
“We need to break down boundaries – diabetes is a complex disease and clearly there are times when specialist input is needed – for example, when someone needs help to manage their diabetes in pregnancy.
“What we’re aspiring to is integrated care. It’s difficult to define and to deliver, and it needs things like joined up IT and proper flows of money – what works well for hip replacements might not work for everything.
“The forward view, new models of care and vanguard sites are very exciting, and I think they will help us release these boundaries.”