In 2012, the National Audit Office estimated that over 3 million people in England had diabetes, a figure expected to rise by 23% by 2020. National prevalence of diabetes is currently in the region of 4.5%, and likely to be between 7 and 10% by 2020 (National Audit Office, 2012).
On this scale, the human and economic cost of this serious progressive disease is staggering, and deeply worrying for healthcare providers. It has been estimated that diabetes costs the NHS over £3.9 billion, of which in excess of £649 million is spent in primary care on diabetes medication alone (National Audit Office, 2012). Any increase in demand on healthcare services has the potential to impact dangerously on capacity, even to the extent of having a deleterious effect on patient care. Such statistics only serve to highlight the fundamental importance of the concept of self-management to quality diabetes care, and the need to identify and implement effectively the active mechanisms which can successfully initiate and sustain it.
But what might this mean in practice to healthcare professionals (HCPs) providing services and support directly to people with diabetes? There are many existing initiatives to choose from that could support self-management: psychological and emotional support, lay-led programmes, telephone support, communication skills training for healthcare professionals and people with diabetes, online forums and chat rooms – the list is seemingly endless. How might healthcare professionals identify the right approach for their patients, themselves and their organisations? After all, interventions supporting self-management can vary according to their philosophical framework, theoretical base and style of delivery, generalisability and cost.
What is self-management?
Put simply, self-management is the way in which people with a long-term condition take care of themselves on a day-to-day basis. By virtue of having a condition such as diabetes, individuals not only carry ultimate responsibility for their own well-being, but also directly experience its consequences, on a daily basis, and throughout their lives (Box 1). Only during the brief consultations with their doctor, nurse or other healthcare professional do they have the opportunity to share this responsibility with an informed clinician. Since it is daily actions and lifestyle choices that are the major determinants of diabetes progression, the success of self-management is one of the most significant predictors of long-term health (Wolpert and Anderson, 2001; Heller and Carey, 2011). Successful self-management, including diet, lifestyle and medication, is the chief means by which an individual can slow down or prevent the complications of diabetes – hypoglycaemic episodes, diabetic ketoacidosis, heart attacks, strokes, blindness, renal failure and lower limb amputation.
Self-management is not a new concept, although it may be currently enjoying a renaissance. As early as 1927, RD Lawrence, the founding father of the British Diabetic Association, referred to his patients learning the skills of “the diabetic life” with “thoroughness and self confidence” (Lawrence, 1927), a theme to which he repeatedly returned in subsequent writings. Key leading practitioners during the 1970s and beyond recognised the importance of the individual’s life as the context for diabetes care, emphasising the importance of holistic treatment, rather than treating in isolation and disconnected from the person’s life situation (Carey et al, 2012a).
Integrated models of care (Wagner et al, 1996), which include the provision of timely, up-to-date medical screening and interventions, are essential to maintaining good health, but the person with diabetes is the one making the minute-by-minute decisions about his or her own health and condition. Despite the previous paucity of good- quality research studies, there is now a growing body of evidence demonstrating self-management support is effective. A recent review from the Health Foundation concludes that: “whilst the findings of individual studies are mixed, the totality of the evidence suggests that supporting self-management can have benefits for people’s attitudes and behaviour, quality of life, clinical symptoms and use of health care resources” (de Silva, 2011).
Health policy, recommendations and quality standards for self-management
Self-management in long-term conditions has been recognised in government health policy of the last 15 years as integral to effective care, beginning with the Diabetes National Service Framework (NSF) in 2001 and 2002. Standard 3 of the NSF states that: “All children, young people and adults with diabetes will receive a service which encourages partnership in decision-making, supports them in managing their diabetes and helps them to adopt and maintain a healthy lifestyle. This will be reflected in an agreed and shared care plan in an appropriate format and language. Where appropriate, parents and carers should be fully engaged in this process” (Department of Health [DH], 2001).
The Standard recognises that users of health services have the right to be active partners in their care, that living with diabetes is not easy, and that “provision of information, education and psychological support that facilitates self-management is the cornerstone of diabetes care.” The Standard acknowledges that people with diabetes need to be empowered to have a choice in, and control over, their care, and that changing lifestyle ultimately means engaging in behaviour change.
The key interventions identified at the time of the report’s publication to support such an approach were: structured education, personal care plans, and patient held/accessed records.
Since 2001, the Diabetes NSF has been influential in supporting a number of service improvements, with the DH publishing annual updates featuring examples of local initiatives inspired by the original report. In 2003, NICE conducted a review of structured education in diabetes (NICE, 2003), which stimulated fresh research into structured education in type 2 diabetes, including the development of the DESMOND (Diabetes Education and Self-management for Ongoing and Newly Diagnosed) Programme (Davies et al, 2008). This was followed by the 2005 joint DH/Diabetes UK Working Group into patient education, of which more in the following section (DH and Diabetes UK, 2005).
The final report of the NHS Next Stage Review (DH, 2008) espoused patients having more rights and control over their healthcare, postulating that greater control and choice facilitates patients taking more responsibility for their own health. Personal care plans and the responsibility on the NHS to facilitate informed patient choice were singled out as key interventions, especially for those with long-term conditions and multiple morbidities. The new 2010 White Paper, Equity and Excellence: liberating the NHS, which signalled the arrival of current NHS restructuring, reaffirmed a commitment to services which were centred on patients and carers – “no decision about me without me” – while driving forward an agenda of quality standards through NICE (DH, 2010). One of the earliest sets of such standards, the NICE Quality Standards in Diabetes (NICE, 2011), reiterated the crucial contribution of patient self-management to diabetes services, by placing the provision of structured self-management education in first place.
In the new NHS structures, with commissioning being located closer to communities being served, there are opportunities to raise awareness of the potential benefits of self-management, and integrate these into the diabetes care pathway in ways not previously possible. The emergence of the regional Strategic Clinical Networks, with their goal of creating a more coherent and equitable approach to services for long-term conditions across a geographical region, may provide the necessary infrastructure to support actual rather than theoretical change.
In summary, an acknowledgement of the value of patient self-management in long-term conditions such as diabetes has consistently driven the philosophy and recommendations of UK health policy since 2001. In major policy documents and standards, personalised care planning, care plans and structured education are explicitly singled out as evidence-based mechanisms which support self-management, in some cases accompanied by toolkits and exemplars to support their practical adoption by local NHS organisations. They are, therefore, a valuable resource for an organisation or service looking to evaluate its performance against best practice, or planning service improvements or redesign.
If people with diabetes are to be truly supported to initiate and sustain successful self-management, making lifestyle choices and living with diabetes in the way that maximises their quality of life as they perceive that to be, then structured education is integral to achieving this.
In the UK, structured education programmes are expected to meet national standards and criteria. Basic principles of good practice were first formulated by NICE in a 2003 Health Technology Appraisal (NICE, 2003) which recommended that programmes:
- Reflect established principles of adult learning.
- Be delivered in a group setting by a trained multidisciplinary team.
- Be accessible to the broadest range of people in a community setting.
- Promote active learning, personalised as far as possible to participants.
This report could not identify a programme for people with type 2 diabetes meeting its criteria, but did consider that the clinical and cost-effectiveness evidence for the DAFNE (Dose Adjustment for Normal Eating) Programme merited its recommendation for people with type 1 diabetes (DAFNE Study Group, 2002).
The report led to growing awareness of the state of structured education in the UK, stimulating research initiatives based on determined grass roots support amongst healthcare professionals and people with diabetes, to address the gaps in evidence and service provision. In 2004, the Department of Health and Diabetes UK jointly convened an expert working group on patient structured education which built on the foundations of the NICE report to develop a set of key criteria for education programmes, complemented by a web-based tool by which organisations could assess their existing education programmes (DH and Diabetes UK, 2005). The key criteria required that a programme should:
- Have a philosophy, be evidence-based and with a specific aim and learning objectives.
- Have a written, structured curriculum, be theory-driven, person-centred, and supported by appropriate resources.
- Be delivered by trained educators with an understanding of education theory appropriate to their programme.
- Be quality assured.
- Be audited.
A full description of the standards can be found in Table 1 (DH and Diabetes UK, 2005).
In a separate development to support the guidance in the Working Party report, a toolkit for organisations to self-assess local education programmes was set up, with the view that organisations wishing to strengthen existing local programmes could be supported to raise the quality of their programmes to meet the national criteria.
The evidence for structured education is currently growing year on year, confirming this type of intervention as an effective treatment option for diabetes. A number of programmes now established in the UK for both type 1 and type 2 diabetes, such as DAFNE (DAFNE Study Group, 2002), DESMOND (Skinner et al, 2006; Davies et al, 2008) and X-PERT (Deakin et al, 2006) meet national standards, and are supported by evidence. The DAFNE and DESMOND programmes have also published evidence of their cost-effectiveness (Shearer et al, 2004; Gillett et al, 2010). An organisation wishing to compare approaches with a view to selecting a programme most suitable to the local population can now consult several reviews of the literature to identify potential programmes (Deakin et al, 2005; Heller and Carey, 2011 Carey et al, 2012b).
And now for a word… Empowerment
No exploration of self-management support or structured education can be complete without a discussion of the concept of empowerment. It is a term consistently used in many of the health policy documents referred to above. As an approach, it is frequently cited to be at the heart of several structured education programmes and self-management interventions.
The philosophy that underpins the approach was presented in 1991 (Funnell et al, 1991). The authors argued for a shift away from the traditional medical model of care where the HCP was seen to be the “expert” and the problem solver, and their goal was for the person with diabetes to “comply” with the recommendations provided. The empowerment approach suggested that a fundamental and conceptual shift in the relationship between the HCP and the person with diabetes was required. The key elements were: an emphasis on the whole person and their personal strengths rather than deficits, the person selecting their own learning needs, setting shared or negotiated goals, and decision making transferred to the person with diabetes who would also identify their barriers to self-care and their solutions. In this context, “failures” were seen to be problems to be solved rather than personal deficits and the practitioner’s role was to help the person to discover their own intrinsic motivators for change.
However, despite the term being extensively used and empowerment seemingly widely applied there does seem to be considerable confusion about the application of the approach. In the Darzi report (DH, 2008) patient empowerment equates to choice over care, such as the setting for a health appointment, or the provision of up-to-date and appropriate information. For the Patient Education Working Party (DH and Diabetes UK, 2005), empowering patients resides in a literal shift in the dynamic of power in the patient–HCP relationship, moving from a traditional medical model, where the agenda and outcomes are dictated by the healthcare professional agenda, to a patient-centred model where the person with diabetes leads the discussion and is an active and equal contributor.
In many interventions empowerment is presented as something that is “delivered” to the person by the HCP, or a technique that can be applied as and when required. Although there is evidence to suggest that improvements in HbA1c and self-efficacy can be achieved using empowerment (Greenfield et al, 1988; Anderson et al 1995; Williams 1998; Tang et al, 2012), misconceptions surrounding what it actually is have inevitably resulted in difficulties that concern investigating the impact of empowerment as an intervention.
In an attempt to clarify these issues Anderson and Funnell (2010) set out to dispel some of these misconceptions and re-establish an understanding of the approach. They conclude that empowerment “does NOT involve convincing, persuading, ‘empowering’ or changing patients (or getting them to change).” This way of working recognises the person’s fundamental role in the management of his or her own condition. The practitioner’s role is to facilitate the person to become more confident, knowledgeable and autonomous in self-management, by helping the individual to access his or her own innate ability to manage diabetes (Box 1). It does not mean that practitioners cannot raise concerns and explore the consequences of some of the decisions individuals may make, but they do need to recognise that the ultimate choice lies with the person with diabetes (Table 2). Empowerment, therefore, is not a technique or a strategy but a way of being with a person. When practitioners truly acknowledge that it is the people with diabetes who ultimately manage the daily minute-by-minute decisions that affect their health, they can provide the right environment for individuals to explore their barriers to self-management, beliefs about the condition, their feelings about having diabetes and the goals that are important to them. Many would argue that this approach should be at the heart of any intervention that sets out to support self-management.
People with diabetes attending dynamic, effective structured education based on a philosophy such as that outlined above can be initiated into, and given a good start in, self-management, but this cannot be sustained over time unless it is complemented by an equally dynamic and effective relationship between the individual and the key HCPs involved in the diabetes journey. Such is the purpose of care planning.
The Diabetes NSF Standard 3 set out to transform clinical consultations and education from a “meeting with an expert” to “a meeting of experts”. Emphasis was placed upon a personalised, shared approach to the individual’s care. This was supported by a report from the Department of Health and Diabetes UK Care Planning Working Group (2006) which defined care planning as“a process which offers people active involvement in deciding, agreeing and owning how their diabetes will be managed. It aims to help people with diabetes achieve optimum health through a partnership approach with health professionals in order to learn about diabetes, manage it and related conditions better and to cope with it in their daily lives.”
Key drivers for care planning came from multiple health policy documents including “Our Health, Our Care, Our Say” (DH, 2006), which stated that by 2010 everyone with a long-term condition should be offered a care plan. It is now Standard 3 in the NICE Quality Standards in Diabetes (NICE, 2011) and the Royal College of General Practitioners (RCGP) have accepted it into professional quality standards (RCGP Clinical Innovation and Research Centre, 2011).
The case for change was driven not only by policy, as described earlier, but also by a body of evidence that questioned the traditional approach, as well as user feedback, which described over 50% of people who had seen an HCP as not being encouraged to self-care. Even fewer, only 23–58% (DH, 2005), reported having a discussion about their personal goals.
Fundamentally, care planning has two components: the process of the consultation (specifically the interaction and relationship that develops between the HCP and the person with diabetes), and the “output” of the consultation (i.e. the agreed goals and action plan). Being prepared for the consultation by either having their biomedical results or an agenda setting prompt or being aware that the consultation will have a different style has been found to encourage patient activation, engagement and biomedical outcomes (Greenfield et al, 1988) and is core to the care-planning experience.
Both patients and professionals will come with their own “stories” or agendas, which are openly acknowledged and shared. The exploration of each other’s stories allows priorities and concerns to emerge and be discussed. It is from this conversation that the person and practitioner in partnership decide upon the goals that are important to the person with diabetes. Personally relevant goals that are congruent with the person’s values and aspirations are more likely to have the desired outcomes for that individual. Behaviour change interventions that support self-efficacy and goal setting and facilitate a detailed action plan have been shown to be more beneficial with improved outcomes (Gollwitzer, 1999; Darker et al, 2010; Olivarius et al, 2001).
This is the “doing of” care planning (the verb) rather than the piece of paper representing the completed care plan at the end of the meeting (the noun). It is believed that it is the “doing” that is important. A consultation that supports autonomy, explores barriers and challenges and is an experience of working together to achieve a plan will be more beneficial than a consultation focussed on the final piece of paper and driven by the HCP’s agenda.
Year of Care
Year of Care, an innovative project funded by the DH, engaged with three pilot sites and 12 health communities during 2008–2011 to explore the components that were needed to support a truly collaborative care-planning consultation. There is evidence to suggest that this consultation cannot take place in isolation. Systems and organisational processes are required to ensure that the HCP can remain committed to partnership working and for the person with diabetes to be engaged and informed about his or her condition. Three pilot sites (NHS Tower Hamlets, NHS Kirklees and Calderdale, and NHS North of Tyne) were identified to test out and explore this model to ensure all the necessary processes required were identified. Year of Care developed a model based on a “house” which acts as both a metaphor and a visual commissioning toolkit. It highlights that all four elements of the house are required to ensure that care-planning consultations that are truly collaborative can take place (Figure 1).
A key element of Year of Care is that it has championed a two-visit approach which separates the tasks of the consultation, such as collecting Quality and Outcomes Framework data, from the conversation about supporting self-management. It makes sense that in order to be engaged and informed individuals will arrive already knowing their most up-to-date test results. They will have attended a “data collection” appointment, usually with a healthcare assistant, prior to the care-planning consultation and these results will have been fed back in a meaningful way, usually written/printed, and by post. The feedback on this approach has been very positive both by practitioners and by patients (Doherty et al, 2012). The fundamental shift required to engage in this approach from the practitioner’s perspective is supported by a national training programme that has been well evaluated. All elements of the consultation and the training have a theoretical underpinning and evidence base that can be accessed by the interested reader (Doherty et al, 2012).
The training also supports the organisational changes that are required to support care planning, such as receiving results beforehand and linking people to self-management education. In some areas taking on a Year of Care approach has required an entire service redesign, but the improvements in team work, surveillance and systems for delivering care have achieved improved outcomes for services. In Tower Hamlets, London, patient-reported involvement in care increased from 52% to 82% and in diabetes care, the organisation went from being one of the lowest achieving areas to the highest reported in England with 72.4% of people with type 2 diabetes receiving all nine key care processes (NHS Diabetes, 2011). Finally, none of this can be achieved without a robust mechanism for the continuing commissioning of services, the foundations of the “house”.
Whilst acknowledging the place of many opportunities and strategies for supporting self-management, such as those mentioned in the introduction section, it is important to identify the importance of structured education and care planning as approaches with the potentially greatest impact on successful self-management.These two complementary interventions are supported by the strongest evidence base, and offer the best opportunities for developing the informed patient – confident, knowledgeable and equipped to develop self-management skills for life with their diabetes.