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The NSF: delivering better care for people with diabetes

Mike Pringle CBE
Head of School
Professor of General Practice
Division of Primary Care
School of Community Health Sciences
University of Nottingham
Diabetes NSF External Reference Group

Why an NSF for diabetes? It is a common condition certainly, with a prevalence of over 3% of the population and rising. It is expected that the prevalence will double within our lifetimes. But most importantly it is a serious disease. People with diabetes face a major loss of quality of life - through blindness, amputation, kidney failure, heart disease, erectile dysfunction and many more complications - and a serious risk of earlier death.
In addition to being common and important, two other tests must be applied. First, can anything be done to manage it better? We know from the UKPDS study that good glycaemic control can help to prevent micro-vascular complications and that good blood pressure and glycaemic control reduce macrovascular complications. So that test is passed.
So for the final test - can we organise care better than at present? I started out work on the NSF thinking that the organisation of care for diabetes was "pretty good". It could, of course, be improved, but it was, by and large, satisfactory. My optimism was based on the realisation that almost all health professionals start every day wanting to do a great job, they work very hard and give their soul to their patients, and they finish each day feeling drained. Such dedication cannot be unproductive, can it?

How people with diabetes see us
The greatest, and most salutary, learning experience for me was listening to people with diabetes and their carers. They all start by praising something good. However, there was always a "but" and the next bit was often deeply disturbing. "My diabetes nurse is wonderful, cannot fault her. But she never knows what's going on …"
How are we seen by our patients? We offer inconsistent advice. When they have a problem, we sometimes say things that are wrong and often things that appear to clash with what others say. We need to get our act together before we start giving advice to people with diabetes.
We don't communicate. When a person attends a diabetes clinic the practice may receive a semilegible, handwritten sheet of paper, but when they attend the hospital the diabetes specialist nurse or hospital doctor receives nothing from the practice. Most health professionals when they see people with diabetes are "flying blind". That cannot be reasonable.
Several people with diabetes remarked on our extraordinary ability to read through cardboard covers. We ask them to record their blood sugars (but never tell them what to do with the readings); and then when they put down the book of readings the doctor or nurse doesn't even open it - he or she appears to assimilate the contents by mental osmosis.
Most damning, almost every person with diabetes describes having care delivered to them, not with them - they describe a health professional-patient interaction in which the health professional tells the patient what to do and they just do as they are told. Very few patients feel in control of their care, acting in a partnership with their advisers in healthcare.
When I based my belief on the assumption that all health professionals were trying to do their best, I was right. However, it was increasingly clear to me that the system was letting us down. We couldn't fulfil our ambitions if we didn't have the support and teamwork to allow us to do so.

What should we achieve?
Clearly people with diabetes could have a better experience. There are many programmes to promote healthier living and, if successful, many will help to prevent type 2 diabetes. If more people take more exercise, keep their weight down and eat well, then fewer people will develop diabetes. This is a wide societal issue, but the health service can play its part.
We can detect diabetes earlier. We are told that there are about 800,000 people in the UK with undiagnosed diabetes, and the average person has had diabetes for seven years when diagnosed. And a third of people with diabetes already have complications when diagnosed. In all sectors of the health service we can be more alert to early diagnosis, and there is a strong case for screening high-risk groups.
Once diagnosed, we can encourage people with diabetes to aspire to good glycaemic and blood pressure control. At present one-third of all people with diabetes are "on diet only". These people are often not followed up properly; we often treat them as if they have "mild diabetes" of little importance. Yet they are just as liable to develop complications.
Complications should be detected as early as possible. This requires regular effective surveillance. All too often people with diabetes describe a desultory examination with no real structure and with concerning signs, such as rising creatinine, ignored. When complications occur we must act to reduce their effect.
We know that care for women with diabetes who become pregnant and women who develop gestational diabetes is improving, but we still have a long way to go to reach best standards. And we know that the care of people with diabetes on nondiabetes hospital wards leaves a lot to be desired.
All of these are areas where we as individuals can make a difference, but, most importantly, the systems of care can be changed to improve patient experience and outcomes.

The empowered person with diabetes
However, the most ambitious aspect of the NSF is the aspiration that health professionals and people with diabetes will be empowered to improve care. By this I mean that every person with diabetes should be offered the information, education and support needed to make them the expert in their diabetes.
I often use a simple image. In my practice the average person with diabetes has 10.5 consultations per year with GPs or practice nurses. They may have other contacts with community nurses or at hospital clinics, but the latter averages at only one consultation per patient per year. I estimate that we, the health professionals, spend about three hours per year face to face with the average person with diabetes.
However, the quality and length of each person with diabetes' life will be determined by what they do in the other 8,757 hours in the year - the decisions they make over diet, exercise, lifestyle, medication and help-seeking. If these decisions are to be good ones, then our three hours must be targeted at helping them to understand their condition, to being educated in how to respond best to situations, offering support when its most needed.
Such a challenge can be replicated in every chronic disease. Diabetes is just a perfect example on which to build a new, more productive relationship with our patients - a partnership in which we build them to become the true experts with us as their advisers and supporters.

New organisations
The key recommendation concerning the organisation of healthcare for diabetes is that every primary care trust should create a "Managed Diabetes Network". This network should bring together the budget holders, health professionals and people with diabetes, under the leadership of a local diabetes champion.
The network should understand the standards of care being delivered, the skills available and the experience of people with diabetes. It should then campaign for the changes needed and the resources to improve care locally. It might involve a movement of diabetes specialist nurses and diabetologists out of the hospital into the community. It might involve education and support for health professionals. It might require the setting up of a retinal photography service.
But the most crucial task of a Managed Diabetes Network is to develop a culture in which the drive and commitment of nurses and doctors is harnessed in a system that supports good care; in a culture that recognises the central role of the person with diabetes in achieving good outcomes; and in a team that communicates and develops.

The NSF for Diabetes
Diabetes UK
10 Parkway
London NW1 7AA
T:020 7424 1000
F:020 7424 1001
Diabetes UK Careline If you need further information and support on any aspect of managing diabetes (eg, medication, diet, exercise, employment, driving),  you can contact one of the careline counsellors
T:020 7424 1030 (operates a translation service) Monday to Friday between 9am and 5pm
Warwick Diabetes Care
An internationally recognised centre of excellence, delivering the highest standards of diabetes education, research, information and materials to improve the quality of diabetes care