Scottish Diabetes Framework

Scottish Diabetes Framework

Scottish Diabetes Framework: Building Blocks of Diabetes Care

Prevention and Early Detection

32. Around nine out of 10 people with diabetes have type 2 diabetes, traditionally a condition affecting mainly older people. However, an increasingly sedentary lifestyle and rising levels of obesity are associated with a dramatic increase in the incidence of type 2 diabetes in the younger population. The implications are serious, not least because diabetes is a major underlying cause of heart disease - one of Scotland's major killer diseases and a priority for the public health improvement strategy set out in the White Paper, Towards a Healthier Scotland.

33. The onset of type 2 diabetes can, in many cases, be prevented or delayed through avoidance of obesity and with regular physical activity. The high price of diabetes in terms of both morbidity and financial burden upon society make a preventative strategy highly desirable. Type 1 diabetes, on the other hand, is caused by a loss of the body's ability to produce insulin, can only be managed by replacement insulin therapy and is currently not preventable.

Health Promotion

34. Obesity is an increasing problem in Scotland and is strongly linked with the increase in type 2 diabetes. If prevalence continues to rise at the current rate more than one in four adults will be obese by 2010. Promoting healthy eating and physical activity and reducing the burden of obesity in the general population requires the concerted effort of a range of local and national agencies.

35. A key component of the Scottish Executive's strategy to improve public health in Scotland is action to encourage Scots to eat more healthily. A wide range of initiatives are underway within the framework of the Scottish Diet Action Plan, Eating for Health. These include the Scottish Community Diet Project (which works with low income communities); the introduction of nutritional standards for school meals in Scotland; and the appointment of a National Diet Action Co-ordinator to promote the implementation of the Plan's recommendations. National agencies supporting this work, through the provision of information on diet and health relevant to prevention, include HEBS and the Food Standards Agency. National agencies supporting this work, through the provision of information on diet and health relevant to prevention, include HEBS, the Food Standards Agency. As well as diet, the Scottish Executive also recognises that daily physical activity is important. The Physical Activity Task Force will set out in June 2002 ideas about where policies and resources need to be directed to encourage greater active living and levels of physical activity for Scotland. Improving diet and physical activity levels are also key objectives of the 100m Health Improvement Fund which, under the auspices of NHS boards and their local partner organisations, is supporting a range of initiatives across Scotland. Generic public health improvement work, such as the establishment of a Health Promoting Schools Unit, will also address diet and physical activity as part of an holistic approach to health.

36. Similar commitment is necessary to combat the incidence of smoking which, in people with diabetes, significantly increases deaths from heart disease. There is a range of prevention and cessation measures in place to reduce smoking levels, including campaigns to raise public awareness, making Nicotine Replacement Therapy (NRT) available on the NHS and the introduction of a charter on smoking in public places. Again, the Health Improvement Fund is enabling important work to proceed in this area.

Public Education

37. Recent work by Diabetes UK has shown that public awareness of diabetes and associated problems is very poor. The consequences of this include a lack of understanding of the potential impact of diabetes, a lack of awareness of how to prevent diabetes and a lack of knowledge about the symptoms of diabetes. The myth of 'mild diabetes' persists. The reality is that a diagnosis of diabetes is a serious matter which should not be ignored. It has been suggested that there are perhaps 90,000 people with diabetes who remain undiagnosed in Scotland and local and national initiatives to raise public awareness and promote early detection should be encouraged. Increasing public understanding of diabetes will require a long-term effort and NHS Boards should take steps to ensure that ongoing health improvement programmes adequately address diabetes issues. A number of areas have found public events to be a valuable means of raising awareness and all areas are encouraged to explore this approach.

ACTION POINT

Each NHS board should organise in collaboration with other agencies, at least one event to raise public awareness of diabetes during 2002/03.

High Risk Groups

38. The UK National Screening Committee (NSC) has reviewed population screening for type 2 diabetes and found that it offers limited benefits. However, the case is stronger for screening sub-groups of the population with specific combinations of population-based risk factors for developing diabetes (e.g. women with a history of gestational diabetes, and people who have coronary heart disease). Other groups with an increased risk of developing type 2 diabetes include those who are overweight; over 40; Asian or African-Caribbean; and/or have a family history of diabetes. Further work is required on the value of screening in particular population sub-groups and a number of pilot projects are being undertaken in England.

'My grandfather and my father and my brother all have diabetes, so at one level I always knew I would be more likely to get it. But it still came as a terrible shock. I suppose you always hope you'll be the one who doesn't get it. I felt so depressed. I just kept thinking about all the things I wouldn't be able to do from now on.'

Care, Monitoring and Treatment

39. People with diabetes live with their diabetes every day of the year, 24 hours a day and so need the knowledge, confidence and support to manage their own condition. People with diabetes should be able to access high quality information, treatment and care, particularly during the period following diagnosis. After diagnosis, people with diabetes should be supported to stay healthy and so minimise the incidence of complications. Information and education about the purpose and importance of medication should be stressed. All people with diabetes should be offered advice about reducing their risk of long-term complications and receive regular surveillance of risk factors. When risk factors are detected, people with diabetes should be supported in controlling these risks and, at an early stage, offered effective treatment to retard the progression of complications. For those people who do develop long-term complications, they should receive effective care including referral to specialist services where appropriate.

40. All of the aspects of care highlighted in this section are essential. However, the ways in which these components of care are organised and co-ordinated to ensure a consistent message are also important and this is considered in more detail in the section below on 'Strategy, Leadership and Teamworking'. From the perspective of a person who has diabetes, a series of specialist clinics may mean frequent, tiring journeys and a significant disruption for the individual and perhaps a friend or relative. There is also the risk of communications between the different service components being poor, resulting in missed referrals or follow-up and inconsistent advice to the patient. Options that were identified by people with diabetes, their relatives and staff through the Partners in Change discussions (see table 11) were: holding specialist clinics used mostly by people with diabetes at a hospital on the same day; or to deliver more care through the patient's primary care team, with good support from specialist services.

41. The annual review is a central part of diabetes care and in highlighting two aspects of diabetes - heart disease and eye care - the Working Group does not wish to imply that the other aspects can be ignored. And indeed, as a result of the consultation process, it was agreed that the Framework needed to include a milestone in relation to HbA1c and this has been included under 'Initial and Continuing Care' below. However, where time and resources need to be prioritised it is recommended that efforts at an organisational level should be concentrated on improving the effectiveness of services to assess and manage the risks of heart disease and to monitor and treat diabetic retinopathy.

Patient Information, Education and Empowerment

CSBS Standard 3 - Patient Focus

All people with diabetes have equitable access to information and multidisciplinary programmes of education, which are tailored to individual needs and specific client groups.

42. Putting patients at the centre of care is one of the central themes of the Framework. This instinct should be an integral part of NHS culture, but as we know, this is not yet always the case. Although patient-centred care is an aspect of all of the Framework's building blocks, it was felt appropriate that it should also be highlighted in its own right. This section incorporates a wide range of issues including the generation and delivery of patient information and education, empowerment and the promotion of self-management and independence and the involvement of people with diabetes in planning, delivery and monitoring services. These themes match the objectives set out in the Scottish Executive's recently published framework responsible for implementing Patient Focus and Public Involvement; (see Table 10). Working closely with and learning from the team responsible for implementing Patient Focus will be crucial to the delivery of this component of the Diabetes Framework.

Table 10 Patient Focus and Public Involvement In December 2001 the Scottish Executive published Patient Focus and Public Involvement setting out details of NHSScotland's commitment to become a service that does things with patients rather than merely to them. A service that respects each individual patient's personal wishes and preferences as far as possible and involves them in every stage of decision-making. The paper has four broad complementary and overlapping themes, each with a series of projects and initiatives designed to help staff and patients make patient-focused service a reality. The four themes are: Building capacity and communications. This aims to build the capacity of the NHS to communicate effectively with patients, the public and local communities and will provide training and support to NHS staff and the public to facilitate this work. Patient Information. This will initiate work which will improve the quality, availability and accessibility of information to support patients, the public and local communities. Involvement. This will support and encourage the NHS to be able to involve people in decisions about the design and delivery of local health services. This includes support to individuals, local groups, communities and voluntary organisations to make their voices heard. Responsiveness. This aims to ensure that NHSScotland becomes a responsive service which listens to the wishes, concerns and complaints of service users, for example by supporting the development of independent advocacy and improving the complaints procedure. An additional 14 million has been made available over the next three years to take forward this initiative. Scottish Executive Health Department, Patient Focus and Public Involvement, December 2001

Seeking the views of people with diabetes

43. In order to find out more about the experiences and needs of people with diabetes, Partners in Change were commissioned to undertake a series of meetings with a wide range of patients and carers. Table 11 sets out the scope of this work.

ACTION POINT

Partners in Change will publish a report of its work with people with diabetes by June 2002.

Table 11 Partners in Change: Listening to People with Diabetes Between October 2001 and March 2002, the Scottish Executive sought out the experiences of people who have diabetes, their families and some of the staff who work in diabetes and related services. This was done through the Partners in Change project, which is funded by the Scottish Executive to ensure that the needs of people with chronic conditions are put at the heart of service planning, delivery and monitoring. Over 250 people from eight NHS board areas participated in interviews and group discussions. The discussions concentrated on people from sections of the population who tend to have particular needs in relation to their diabetes, or who tend to be included less often in routine feedback about services. They included: young people and children men and women from the ethnic minority communities people with learning difficulties and their key workers and families people with sensory disabilities people with disabilities women who are/recently have been, or plan to become, pregnant, and their partners people who have low incomes people who have recently been diagnosed as having diabetes many of the discussion included older people families of people with diabetes. In each area, people who have experience of diabetes, people from Diabetes UK or staff helped facilitate the discussions, to build on their understanding of the issues raised by people with diabetes and increase their experience of ways to involve people.

44. Information and education enable people with diabetes and, where appropriate, those who care for them, to make informed decisions about their diabetes and therefore become key partners of the health care team. People with diabetes must live with their diabetes every day. Set against this, for most people with diabetes, the best possible diabetes service will offer only perhaps a few hours of tests, treatments and advice per year. The involvement of people with diabetes in their own care is therefore essential. People with diabetes need help to acquire the information, skills and confidence to mange their own care, with diabetes services there to provide help and support when needed. The role of health services is important, but the commitment of individuals to their own care is the key determinant of health outcomes. What is needed is mutual understanding of what is possible and a partnership to achieve what is best for the individual. As well as the actions required of health care services, this partnership places demands and responsibilities on people with diabetes. These have been well summarised by Diabetes UK in their 'What care to expect' leaflet.

Table 12 Your responsibilities as a person with diabetes 'Effective diabetes care is normally achieved by team work, between you and your diabetes care team. Looking after your diabetes and changing your lifestyle to fit in with the demands of diabetes is hard work, but you're worth it! You will not always get your care right; none of us does, but your diabetes care team is there to support you. Ask questions and request more information especially if you are uncertain or worried about your diabetes and/or your treatment. Remember the most important person in the team is you. The following list of responsibilities is given to help you play your part in your own diabetes care. It is your responsibility: To take as much control of your diabetes on a day-to-day basis as you can. The more you know about your own diabetes, the easier this will become. To learn about and practice self-care which should include dietary education, exercise and monitoring of blood glucose levels. To examine your feet regularly or have someone check them. To know how to manage your diabetes and when to ask for help if you are ill, e.g. chest infection, flu, diarrhoea and vomiting. To know when, where and how to contact your diabetes care team. To build the diabetes advice discussed with you into your daily life. To talk regularly with your diabetes care team and ask questions. To make a list of points to raise at appointments, if you find it helpful. To attend your scheduled appointments and inform the diabetes care team if you are unable to do so. What diabetes care to expect, Diabetes UK, 2001 (p.14)

'It's important to get help but it's also important the way they hand back the responsibility.' (Person with diabetes)

45. Building and maintaining motivation is important to ensure that people with diabetes continue to manage their own diabetes. Points of motivation can change over time and healthcare professionals need to be aware of this and support individuals to make informed choices. Clinical staff also need to be aware of the potential negative effect their words and actions can produce. Feelings of failure or blame are no part of good care. Diabetes self management is difficult and to lapse from optimum care is only human.

'It can be really hard attending clinics ... the last thing you need is the people who are supposed to be helping and supporting you, putting you down, telling you you're not doing this right...this sometimes makes you more frightened to reach out for help.' (Person with diabetes)

Patient education

46. Education and information allow a person with diabetes to deal with blood glucose awareness, cope with stress and adjust their daily insulin dosage as necessary. Encouraging and supporting patients to develop these skills requires training and awareness by healthcare professionals delivering care. Although there are examples of good quality individual and group diabetes education programmes, it is apparent that these are not widespread and information about what is effective is not readily available.

ACTION POINT

A report on patient education programmes in diabetes will be produced by December 2002.

'I get conflicting information. One nurse tells me I can eat a certain thing, another tells me another.' (Person with diabetes)

Patient information

47. To maintain good health and quality of life, people with diabetes need information about their diabetes as well as about local services and how they are provided. Information is available from a very wide range of sources, with an equally broad range of quality and reliability. Diabetes UK has a long track record of producing good quality information for people with diabetes through its literature, a telephone 'Careline' service that includes multilingual response options and its website. One source of information which is likely to be used increasingly by the public is NHS24 - a Scottish service which aims to provide in a single telephone call, information on health and other healthcare services, advice, an assessment of symptoms by a trained nurse and, where appropriate, direct access to care.

ACTION POINT

The Scottish Diabetes Group will work with NHS24 to ensure that relevant and up-to-date information on diabetes care and services is available through NHS24.

48. The lack of information and practical advice on managing diabetes and living with the condition was frequently raised by the people who met with the Partners in Change team. People with diabetes should have access to educational literature which is relevant, appropriate to their needs, age, language and culture, and non-promotional. The importance of providing material which is culturally appropriate is considered in more detail in the section on ethnic minority groups below (see Table 17). One of the points made most frequently by people with diabetes is the lack of consistency of the information provided, with different professionals often giving conflicting advice. What they want is consistent and reliable information, developed with the involvement of people with diabetes. People with diabetes also value getting information from other patients as well as from staff, and especially from people who have been in the same situation.

'It's good to meet up with other young people.' (Teenager with diabetes)

49. The Scottish Diabetes Group will need to consider how best to build upon current sources of patient information and how to make best use of the opportunities presented by the Patient Focus initiative.

ACTION POINT

By September 2002 the Scottish Diabetes Group will agree on and put in place a programme of work to help to ensure that relevant high quality patient information on diabetes is available to patients and carers.

'The dietitian had no information for someone who has a vegetarian diet.' (Man with diabetes from an ethnic minority group)

Patient involvement

50. As well as supporting the development of partnerships at an individual level, the Framework also seeks to promote the involvement of people with diabetes at a strategic level, both in the planning of local services and in shaping policy at national level. The Framework itself has greatly benefited from the contribution of Diabetes UK, the leading charity for people with diabetes, and indeed the Working Group was chaired by the National Manager of Diabetes UK Scotland. The input of people with diabetes responding to the consultation paper and attending the open meetings has also been most helpful.

51. The Framework includes a number of initiatives to increase the influence of the views of people with diabetes on strategic developments. For example, through membership on the new Scottish Diabetes Group (see Table 28) and involvement in Local Diabetes Service Advisory Groups (LDSAGS - see Table 18). Although much of this is concerned with capacity building, the increasing influence of people with diabetes on shaping services is a key theme of the Framework and its implementation.

52. The involvement of people with diabetes on LDSAGs is considered to be particularly important. Although most LDSAGs already include one or more patient representatives, the Working Group believe that lay membership should be strengthened and supported. Patients and carers also have an important role to play in shaping the development of managed clinical networks.

ACTION POINT

A project to encourage and support patient and carer involvement in the work of Managed Clinical Networks and Local Diabetes Service Advisory Groups (LDSAGs) will be funded in 2002.

53. Current members of all LDSAGs or their equivalents were contacted by the Partners in Change team to identify what issues were important to them and to find out what would help them to contribute in these roles. A first network meeting of lay members of LDSAGs in Scotland took place in November 2001 and the intention is to repeat that exercise.

ACTION POINT

A guide to encourage the active participation of patients, parents and carers in Local Diabetes Service Advisory Groups (LDSAGs) and other service planning fora will be produced by June 2002.

ACTION POINT

A national meeting for lay members and potential lay members of LDSAGs will be held during 2002.