The following essay offers an analytical reflection and critique, supported by research-based literature, of the diabetes pathway in my practice for people of South Asian (SA) origin who have type-2 diabetes. Relevant healthcare policy will be discussed and consideration given to the differing health needs of SA people in comparison to those of the general population. The relevance of Models of Behaviour Change will be briefly explored in relation to guideline development and implementation with special consideration given to the Year of Care (YOC) Pilot (Diabetes UK, 2011), using the House of Care approach (HOC) (Coulter et al, 2013) which sprang from the Chronic Care Model (Wagner, 1998). Finally, the care planning, goal setting and action planning process will be examined in relation to how this approach, when used correctly may improve the uptake of structured diabetes education.
The aim is to investigate how health professionals can better engage patients and by encouraging self care behaviour, increase attendance at structured diabetes programmes. Action points for achieving this will be discussed throughout.
Background
I have observed that a diabetic review can often involve up to four visits for the patient; during one visit a Health Care Assistant (HCA) will perform a foot check, measure blood pressure, pulse and weight and give dietary advice consisting of, eat less sugar, fat and carbohydrate and five portions of fruit and vegetables a day. The patient may be referred to structured diabetes education but there is no follow up regarding attendance. Given that in 2015, less than 7% of people referred to a programme actually attended (NHS Digital, 2017) this is a significant omission. Bloods are taken to measure HbAc1 and lipid levels, but not necessarily at this visit. A registered nurse is allocated 45 minutes to complete a care plan however the majority of time is spent asking the same questions, carrying out the same tests and giving the same advice already given by the HCA. The patient may or may not see the GP for a medication review.
The appointments do not take place in chronological order meaning that crucial blood results may not be available when the yearly care plan review is done. If available, they are given to the patient on the day of the care planning appointment, giving them no time to digest the information. If the HbAc1 is high the patient is informed and advised to cut down on sugar and carbohydrate. The last five minutes is spent asking the patient what their health goals are. The majority of patients state that they need to lose weight and exercise more. This is recorded with ‘action planning’ limited to giving the patient the same generic advice to cut down on carbohydrates, fat and sugar. Exercise advice generally consists of either telling the patient to walk more or go to the gym. As these goals are frequently the same as the previous year with weight remaining static or even increasing, lends substance to Bardia, Holton, Slezsak, & Thompson (2007), suggestion that the healthcare professional’s seeming assumption is that it is enough to simply inform the patient of the health risk in order for them to make lifestyle changes. Each of these points will be explored in more detail however some context is first required.
Policy
Diabetes UK (2017) report the cost to the NHS of treating diabetes and related complications is more than £14 billion per year, approximately 10% of the NHS annual budget. Currently 80% of the diabetes spend is on treatment of largely avoidable complications and is predicted to rise to £16.9 billion by 2035/36 (NHS England, 2015). In London, 7.5% of the adult population is diagnosed with diabetes although the actual figure is thought to be much higher (NHS England, 2015).
Derek Wanless (2004) published a review warning that without investment in public health and disease prevention the national burden of illness would continue to rise. There have since been a number of major documents highlighting the health challenges faced both nationally and in London. From the London focussed, diabetes specific report, Blood Sugar Rush (2014), to the Five Year Forward View (FYFV) (NHS England, 2014). These raise the same key points as Wanless (2004), namely that health promotion and prevention is crucial to addressing the growing crisis in health care and spiralling cost of chronic disease. With the average person spending approximately three hours per year with a healthcare professional, the ability to manage their own health is pivotal to addressing these issues (Roberts, 2007).
With this in mind, the FYFV (2014) implemented a large-scale type-2 diabetes prevention programme. Given that diabetes is the commonest cause of lower limb amputation and a major contributor to heart attack, stroke, incident blindness, end-stage renal failure and premature mortality in England (Sood et al, 2015), supporting people to adopt healthier lifestyles such as stopping smoking, increasing exercise and reducing sugar are equally important in people who already have the diagnosis. To help achieve this objective requires proactive primary care that utilises a more structured approach to the use of evidence based intervention strategies (NHS England, 2014). This will be discussed in more depth later on.
Quality Outcomes Framework (QOF)
The General Medical Services (GMS) contract was introduced in 2004 and is a contract between general practices and NHS England (Gregory, 2009). One of the main initiatives introduced was the quality and outcomes framework (QOF). The rationale was to improve the quality of general practice by rewarding GPs for implementing "good practice" in their surgeries (Gregory, 2009). QOF criteria have been developed by the National Institute for Health and Care Excellence (NICE, 2017) and are designed around best practice. They are grouped into 4 domains: clinical, organisational, patient experience and additional services with “QOF’ points allocated to each indicator, within each domain. At the end of each financial year, providing the target has been reached, these points are converted into payment. In other words, it is performance related pay.
Although improvements have been observed in the targeted areas, Ashworth & Kordowicz (2010) make an interesting point, specifically that in those areas not given prominence these same improvements are not observed. In addition, the QOF model allows for the disengaged patient by setting the targets below 100% however Ashworth & Kordowicz (2010) warn that this may result in attention moving away from those harder to reach patients, in exchange for more efficient achievement of results. Perhaps, more effort would be made by practices and uptake of structured diabetes education programmes improve if points were allocated not merely for making a referral but on the basis of attendance?
Diabetes and Ethnicity
There appears to be some disagreement regarding the prevalence of diabetes in people of SA origin compared to the general population. Some studies indicate that it is five to six times more common (Hood et al, 2015), others claim a four-fold increase (Macaden & Clarke, 2015) and yet others propose it should be revised to a 50% higher rate (Hanif et al 2014, Sohal et al 2015). Nonetheless, in this group, diabetes develops 5 to 10 years earlier (Hanif et al, 2014, Macaden & Clarke, 2015, Sohal et al, 2015) and is accompanied by the attendant risk of complications increasing with the duration of the disease (Hanif et al, 2015). This may also in part explain why the incidence of negative microvascular and macrovascular outcomes, especially cardiovascular disease, is so widespread in this population (Macaden & Clarke, 2015, Hanif et al, 2014, Sohal et al, 2015).
Nevertheless, the ethnic diversity of London’s population poses unique challenges to diabetes care (NHS England, 2015). Out of 32 London Boroughs, the one in which my practice is situated ranks 5th highest for prevalence of diabetes and is in the top four for number of Asian or Asian/British residents (NHS England, 2015). Indeed compared to a national average of 18.3%, over 60% of the Borough’s population with type 2 diabetes are of minority ethnic origin, rising to over 80% in the practice where I work (NHS Digital, 2017). What makes this of even greater concern is the fact that statistics produced by the National Diabetes Audit on how well diabetes care is delivered, placed my Borough in the bottom 25% of all Clinical Commissioning Groups (CCG’s) in England (could ref the audit here, Diabetes Public Meeting 2015). This is in spite of fact that the health professionals must have a much higher exposure to patients with diabetes compared to health professionals in other CCG’s.
With this in mind, any implication that the above-mentioned decrease in prevalence could be due to improvements in health delivery may be a rather optimistic view. Hanif et al (2015) suggest is that any apparent decrease is more likely to be due to the larger data sets used in more recent studies reducing potential biases and thus improving accuracy. Regardless, these statistics do appear to corroborate findings from other studies, namely that management of diabetes in minority ethnic groups is poor when compared to the general population, (Hawthorne et al, 2010, Sohal et al, 2015). So why is this?
Interventions and Theories of Behaviour Change
There have been many different health promotion models developed over the years, including but not limited to, the Health Belief Model (Becker, 1974), Social Cognitive Theory (Bandura, 1986), and the Trans-theoretical Model (Prochaska and DiClemente, 1983). It is theories such as these that are the frequently used constructs from which heath promotion interventions are developed and implemented (Glanz and Bishop, 2010) and they are associated with much of what we understand about people’s motivation to either change or not change behaviour (Hood et al, 2015). Indeed the literature abounds with evidence linking the increased efficacy of behavior change interventions when based on evidence-based principles that have been informed by theory (Noar & Zimmerman, 2005, Abraham et al, 2009, Hood et al, 2015). The Scottish Intercollegiate Guidelines Network (2010) assert that:
‘People with diabetes should be offered lifestyle interventions based on a valid theoretical framework’
Yet healthcare providers appear uncertain on how best to deliver care (Cane et al, 2012). Perhaps when one considers that, despite having many theoretical constructs to explain human behaviour, many of these theories whilst using different terminology, are often overlapping or even identical (Noar & Zimmerman, 2005). Of note, a systematic review by Davies et al (2010) found that, out of 235 studies into guideline development and implementation, only 22.5% were thought to have used behavior change theories thus adding further weight to Cane et al (2012) suggestion that evidence-based principles are rarely used when designing and implementing interventions.
The waters are further muddied by the increasing recognition that in order to understand the behaviours to be modified, they must first be contextualized within a specific population, only then can effective interventions can be developed (Glanz and Bishop, 2010, Akbar 2015). To illustrate this point I will use medication as an example. I have observed patients being asked at reviews if they know what their medication is for. Providing they know which tablet is for diabetes, no further enquiry is made. They are never asked how often they take the tablets, if they experience any side effects or if they understand what would happen if they don’t take their medication.
The literature reports that up to 50% of people with long term conditions (LTCs) do not adhere to their medication regime (Mathers et al, 2011) however in order to understand why, the health practitioner must ‘know’ their patient population. For example, SA people may be less concerned about adhering to their treatments than other groups Hanif et al (2014), may perceive oral medication to be for symptomatic benefit only (Lawton et al, 2005, Hanif et al, 2014) or believe that herbal remedies such as karela juice can cure diabetes (Hawthorne et al, 1993). In other words, for interventions to be effective, one needs to know which areas to aim them at.
Another example of the importance of first contextualizing behavior before attempting to change it, are my observations around giving inappropriate dietary advice which is more suited to a western palate than a SA one, resulting in uncertainty in patients around which traditional food they can eat or should avoid (Carr, 2012). As patients are unlikely to follow any interventions or advice if these issues are not first addressed (Carr, 2012, Hood et al, 2015), as first step I have ordered publications from the British Heart Foundation and Diabetes UK (see Appendix 1) that contain recipes for SA food. I have already shared these out amongst the practice staff with the recommendation that patients should not be given too many leaflets at one consultation bearing in mind that whilst it can be beneficial to provide written information, it should be relevant to the patient, appropriate to their literacy level and not overly complicated (Hood et al, 2015).
One final point to consider is the way in which therapeutic strategies and targets are developed. It is these strategies and targets that are used to inform most practice management decisions yet they are often constructed using the evidence base from clinical trials, however it should be noted that few clinical trials are representative of the South Asian population (Hanif et al, 2015).
Chronic Care Model
Whilst high quality evidence about the impact of chronic care models is sparse (Singh and Ham, 2006), there is some indication that programmes implementing the Chronic Care Model (Wagner, 1998) can have a sustainable impact on quality of care with improved clinical and clinical outcomes (Singh and Ham, 2006). One such programme is the HOC approach (Coulter et al, 2013) which sprang from the Chronic Care Model (Wagner, 1998), and demonstrates how to deliver personalized care for people with any LTCs in routine practice (Coulter et al, 2013).
Through working in partnership with a healthcare professional, patients are encouraged to be actively involved in deciding, agreeing and owning how their LTC will be managed, achieved through the use of the care planning process (Coulter et al 2013). Using diabetes as an exemplar, the HOC approach was used in the YOC programme (Diabetes UK, 2011). This was a three-year project, from 2008 to 2011 and piloted across three sites (Diabetes UK, 2011). One of the pilot sites, Tower Hamlets, is especially relevant as the demographics of this area are similar to those in the London Borough where I work, namely a younger age group and higher percentage of people who are of a minority ethnic origin compared to the general population (NHS Digital, 2017)
Whilst it is not possible to implement all of the findings from this pilot into my own practice, there are certainly some aspects of it that could be included at no extra cost. Of first consideration is the care planning process. It should be noted that although there is sound reasoning behind the use of personalised care plans for people with LTCs in Primary Care, with clear benefits to patients (Mather et al, 2011) data from the GP Patient Survey 2015-2016 (NHS England, 2016) suggests that only 3.2% of patients say they have a written care plan, 3.7% do not know if they a plan and 93.1% say they do not have a written care plan. This would suggest that care plans are something done for patients rather than with them.
In order to move away from a ‘tick box’ exercise towards an authentic, participative process requires healthcare professional to work with the patient, define the problem, decide priorities and goals and use these to create treatment plans (Burt et al, 2014). Burt et al (2014) suggest that one of the reasons this may not be taking place is due to lack of clarity on the part of the healthcare provider regarding both the formulation and implementation of care plans. At this stage, it is not within the scope of my practice to assess the potential training needs of staff however one simple intervention that could be implemented immediately would be to simply ask the patient if they are aware that they have a care plan and what a care plan is. This then offers the health professional an opportunity to start informing and educating the patient.
A second key aspect of the YOC was sending test results to patients in advance of their care planning review. Included with these results was a short explanation and agenda setting prompts using easily understood language. The rationale behind this was to give people time to think about their condition, have discussions with family and friends and then set themselves specific short-term goals (Diabetes UK, 2011). This approach also allows more time to be spent during the consultation to focus on the action planning required to achieve these goals. At he very least, with the agreement of the GP and Practice Manager, test results could be sent to patient in advance.
Education is one of the key recommendations for the management of diabetes (NICE 2015), has been shown to reduce the onset of complications and therefore improve health outcomes (Deakin et al 2006, Deakin 2012, Pender 2016), yet less than 3.8% attend when referred (Pender 2015, NHS Digital, 2017).
It is hoped that by asking patients what they understand about their care plan, sending test results and prompts in advance of care planning appointments, discussing medication in more detail and offering dietary advice that is tailored to the person that they will then become more engaged and receptive to attending a structured diabetes programme.
Structured Diabetes Education
Research indicates that patients are most receptive to structured education when first diagnosed, during their fist complication and following hospital admission (Pender, 2016). Regardless of where they are on the disease trajectory, patients in my locality will be referred to the X-PERT in diabetes programme. This programme emphasizes lifestyle choices for people with type 2 diabetes and includes: what diabetes is, carbohydrate awareness, how physical activity can help, understanding food and diabetes complications (X-PERT Health, 2017).
A study by Deakin et al (2006) claims this programme is effective in both Caucasian and South Asian people. A second, nationwide UK study by Deakin (2011) to evaluate the effectiveness and potential cost savings of the X-PERT Programme nationwide found it to be both clinically and cost-effective. It is worth adding a note is caution however as the author of the study was the chief executive of the X-PERT Health organization and should be viewed as a potential conflict of interest. Nevertheless, when reporting on the same study, the National Institute for Health Research, Centre for Reviews and Dissemination (2013) concluded that, whilst low reporting of audit data by participating organisations made the findings uncertain, they did suggest possible benefits from structured diabetes education.
Literature cites the following barriers to attendance: shame and stigma associated with diabetes (Winkley et al, 2014), lack of time or conflicting work schedules (Schwennesen et al, 2015, Winkley et al, 2014), the perception that the disease is not serious (Lawal, 2014) and finding the group setting intimidating (Lawal, 2014). As previously mentioned, attendance at these programmes is not discussed with the patient at any follow up appointments. By not asking and then investigating reasons for non-attendance, the practice is not in a position to learn any lessons or address and possibly resolve the reasons for non-attendance. Of equal importance are the lessons to be learned from those patients who do attend. Currently, unless a patient volunteers information about their experience of the programme it is not possible to build any kind of evidence base about what went well and what didn’t go so well. It may be that concerns or questions raised by non-attendees could be easily answered from the information received from patients who have completed the programme. A straightforward solution to this would be to simply ask the patient. To give this some substance, the answers could be audited and the audit results used to inform practice.
Literature also indicates that another significant barrier is the patient’s perceived lack of benefits associated with these programmes (Lawal, 2014, Schwennesen et al, 2015) and healthcare workers explanation of the benefits through the ineffectual use of language that is clear and motivating (Lawal, 2014, Winkley et al, 2014). Having established that no one from my practice has personally attended the X-PERT diabetes programme, one has to ask how effectively practitioners can answer queries or appear positive and enthusiastic about the programme to patients? With this in mind, another step that I can make towards improving this within my own practice is to attend the programme myself. I will then be better informed and in a better position to encourage the attendance of perhaps, not only patients, but also those healthcare workers within my practice who deliver diabetes care.
Conclusion
One must consider that, for many people, structured education may not be the most suitable first step in changing behaviour. Perhaps by providing clarity around the care planning process and providing information to the patient about their diabetes, patients will start to feel more engaged and thus open to attending these programmes. Empowering patients is a process that recognises people as autonomous beings (Deakin et al 2006). Ultimately, the healthcare providers sphere of influence lies within their ability to work alongside patients to increase knowledge and confidence thus enabling them to make informed choices about their actions and behaviours (Deakin et al 2006).