Getting to the bottom of NHS diabetes care

Diabetes is the kind of condition that can keep primary care trust managers awake at night. The numbers of people being diagnosed with type 2 - once a disease of age and now increasingly one of obesity - continue to grow. Having it is often linked with a number of serious health problems. If it is not properly managed, the outcomes can be tragic: astonishingly, one in 10 deaths is thought to be attributed to it.

With the effects on public health being so potentially devastating, it is vital the condition is picked up early. But charity Diabetes UK claims that up to 500,000 people are undiagnosed in England (national clinical director for diabetes Rowan Hillson puts the figure at nearer 400,000), in addition to the 2.3 million people known to have the condition.

Diabetes UK head of policy Bridget Turner is concerned that not enough GPs are recognising the symptoms: "Only 57 per cent of primary care trusts have any sort of programme in place to raise awareness of diabetes or pick up risk factors associated with it. It can go undetected for years."

She continues: "The national service framework for diabetes [published in 2003] is a visionary document with lots of targets and aspirations, but the mechanisms for the delivery of care are not in place at PCT level."

She believes that although doctors are rewarded for detecting and treating the disease under the quality and outcomes framework, many do not use it: "It is all ad hoc at a local level, not systematic."

Vascular checks for conditions such as kidney disease and stroke as well as diabetes are now being rolled out for people over 40 by the Department of Health. Because of the high prevalence of diabetes among some ethnic groups that also have a young age profile, Diabetes UK would like to see the vascular care programme extended.

While Dr Hillson says the DH is looking at this, she also points out that resources must be targeted at those proportionately most at risk: that is, the over-40s, regardless of ethnic background. "I believe every person with diabetes deserves the highest standard of care, no matter where or by whom it is delivered, but not everyone always gets the appropriate care," she explains.

There are numerous issues concerning the care of people who have been diagnosed with diabetes. One constitutes standard eight of the diabetes national service framework, particularly as it is thought 10-20 per cent all people receiving inpatient care have the condition.

"We believe as many as one in two are not coded properly [under payment by results]," says Dr Hillson, who continues to work part time as a practising diabetologist. "Even if they are in for a gall bladder operation, it should still be recorded that they have diabetes."

While people with diabetes often need to take medication and monitor their diet, around 10 per cent told a Healthcare Commission survey published last year that while they were in hospital they could not take their medication in the way they wanted and that the food on offer was often unsuitable. And almost a quarter also reported that they were not visited by anyone from a specialist diabetes team.

"There are some stories of poor care in hospital, such as bandages being left on feet for a week," says Ms Turner. "There is poor data collection on diabetes: it will be recorded that someone is in hospital after having a heart attack but not that they have diabetes. It is the same with death certificates: it will record that someone had a heart attack but not that they had diabetes, even though it might have caused the heart attack."

Dr Hillson agrees that the number of deaths in which diabetes has been a contributory factor is being underestimated.

Blighted at birth

To get some sense of scale, recent work by Yorkshire and the Humber public health observatory looked at diabetes prevalence figures and population and mortality data before estimating that the disease is responsible for 11.6 per cent of all deaths in England for those aged 20-79. In some areas the number was thought to be greater, with Newham in London highest with more than 150 deaths, or 17.1 per cent, thought to be attributable to diabetes. The lowest attributable percentages were in the Richmond and Twickenham and North Yorkshire and York areas, at around 10 per cent each.

At the other end of life, the care of pregnant women with diabetes and of women who are planning to become pregnant is of particular concern to Dr Hillson.

"Compared with women without diabetes, children born to women with diabetes have five times the average still birth rate and three times the neonatal death rate. I think that's terrible, especially when 11,000-12,000 women with diabetes become pregnant each year.

"It is important to help women plan their pregnancy and be able to intervene and offer specialist care," she says.

It is also of concern to services in Newham, which, coupled with one of the highest rates of diabetes in the country, also has one of the highest birth rates and one of the highest rates of pregnancy-related diabetes.

"There are a lot of women in their 30s with type 2 diabetes having babies in the borough and they tend to present late," says Newham PCT diabetes lead GP Clare Davison.

"There is an emphasis on ensuring all women of child-bearing age with diabetes are offered contraception advice and that if they are pregnant they are seen by a specialist nurse or midwife. Through links with the local obstetrics service, we can monitor their health while pregnant."

Dr Hillson says that although diabetes is not at the top of the list of priorities for PCTs, both commissioners and acute trusts need to think through the advantages of tackling unequal access to care: "Diabetes is a slow condition and it can be difficult for PCTs to invest in something that you may not see the results of for 10-15 years. But it can reduce length of stay in hospital, and reducing complications reduces both risk for the patient and considerable costs."

She continues: "PCTs need someone who is passionate about diabetes and really wants to commission it properly."

Changing behaviour

Complications can be severe and life-changing, so education in how to self-manage diabetes is top of the list of priorities for many in diabetes care.

"We need to ensure everyone with diabetes has access to structured diabetes education," says Dr Hillson. "But it is very important that PCTs deliver local models to suit their populations."

Some 70 PCTs are now using DESMOND (diabetes education and self management for ongoing and newly diagnosed), an education tool for people who have been recently diagnosed with diabetes or have been diagnosed for some time but have not had up-to-date information on the condition.

"It aims to cover all the basics people need," says director Marian Carey. "We train people to deliver the sessions in groups."

At present the programme is delivered by health professionals, but training for lay people is also being considered. The idea is to develop a module for ongoing care and to adapt the programme's first step model to be culturally appropriate and available in a number of languages.

"Having materials that are appropriate for the South Asian community - for example, about the role that the concept of destiny plays in some communities, which plays a big part in health beliefs - is important, as it also affects lifestyle issues such as the type of foods typically eaten," says Ms Carey.

Adapting care needs to individual choice is at the heart of the year of care project, developed by Diabetes UK and the National Diabetes Support Team, which is currently being piloted in three PCTs chosen for their widely variant populations.

"It can be difficult to change behaviour without a good reason. The year of care is not a care plan but a negotiated action plan around the goals and objectives of the patient and how they can be achieved," says Nick Lewis-Barned, head of the diabetes service in Northumberland at North Tyneside PCT, one of those piloting the project.

"Most people don't have an emotional perception of a high blood glucose level, but they might want to be able to go out for a meal. So you can show how managing your glucose level can lead to you being able to safely do that."

The scheme includes patients being given all their biometric measurements in advance of an appointment, so they can point to which aspects of their care they want to work on and why.

"Goal-setting and devising the structure of the action plan is an annual experience, both for people receiving routine care and those with complex needs. It can then be worked on throughout the year - as it takes longer than usual, it cannot be done at every consultation."

Dr Lewis-Barned adds that learning from the scheme can be used to improve local commissioning decisions.

"So much commissioning is based on historical decisions or population data at best and certainly no one has cracked it for long term conditions. If we know what people want locally, we can move from micro to macro commissioning and make decisions based on their choices and the year of care is a step towards that."

Direct care: the Bolton diabetes centre

Bolton in Lancashire has a diabetes prevalence of 7.2 per cent, which the primary care trust partly attributes to a sizeable local ethnic minority population. Its diabetes centre provides direct care for patients, usually for about six months, with the aim of referring them back to their GPs, although it could work with them indefinitely.

"The centre is about reducing inequalities and providing seamless care, where the patients want it," says Bolton PCT cardiovascular service manager Lorraine Burnett. "We set it up in 1995 after work that showed not enough diabetes care was being delivered in Bolton," adds the PCT's medical director and clinical lead for diabetes John Dean.

The centre's team also works on improving general practices' skills in detection and management and goes into the local acute hospital.

"The biggest challenge is in care co-ordination between the different areas. The second is in engaging people to change their lifestyle," says Dr Dean.

Clinics run by senior nurse and service manager Louise Hilton aim to see patients before admission and after discharge if they have had elective treatment in an acute setting. She also goes to admission wards to pick up patients with diabetes and does ward rounds with consultants.

"We go into high risk areas such as intensive care to see if they have any patients with diabetes," says Ms Hilton.

Work in the PCT is now shifting towards outcomes and the effectiveness of care delivery.

"We need to get to the stage where it is not just about what medical care is being delivered but the difference that makes to mortality rates and the complications patients have," says Dr Dean.

Help people to help themselves: diabetes challenges in Newham

Newham primary care trust in east London has one of the highest rates of diabetes prevalence in England and is thought to have the highest number of deaths caused by the condition. Of the 330,000 people registered with a local GP, 16,000 have been diagnosed with the condition - a number that is growing by about 8 per cent a year. Forty per cent of the local population is under 24 and 60 per cent of people are from ethnic minorities.

"There is also a lot of diabetes in the white population aged over 50, which is linked to obesity," says PCT GP lead for diabetes Clare Davison. "The position is unsustainable. So we are working across organisations - in schools and the local community, as well as acute services, pharmacy and primary care. Primary care cannot do this alone."

The PCT is running a pilot scheme in which pharmacies are offering south Asian patients in their 40s a weight measurement, blood pressure reading and body mass index calculation. If they are at risk of diabetes, they are offered glucose and cholesterol testing.

"As a GP I find patients are very receptive to the idea of diabetes and are aware of what it is, as it is likely they will have at least one friend or relative who has it. But they probably don't realise how dangerous it is and you don't want to scare people. It is important they have all the information they need," Dr Davison says.

"It sounds basic, but lifestyle and diet are the major issues. I think a lot of our patients have no idea how to live a healthy lifestyle. They are working flat out to be financially viable or are unable to work because they are sick and do not know how to eat healthily. They have to be helped to understand how to eat well cheaply."

In addition to working with local employers to help make it easier for people to get some exercise, such as through work-based exercise programmes, other schemes need to be tailored to local need.

"Middle-aged Asian women are at high risk of diabetes and cardiovascular disease and are probably not getting enough exercise, as they often spend a lot of time at home, so we have women-only walking groups and days at local leisure centres."

Work is also under way to enable patients who have complications to have treatment locally. "The most unwell patients seem to have the most fragmented care," adds Dr Davison.

"We do have a diabetes centre in Newham, but we need to move the agenda on and work on all fronts: prevention, effective care delivery and negotiated care plans, with more emphasis on structured education and offering patients action plans for their care in an annual review. We are looking at how to design services that reduce end-of-life complications and fit in with the national strategic agenda."