A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England

Guyana came under British rule in 1815 and was named ‘British Guiana’ in 1831. Following the abolition of slavery in 1835, plantation owners were compelled to free the African slaves leading to black settlements in the urban areas. Plantation owners were aware that they could face labour shortages so indentured labourers were imported from Madeira from 1834, from India in 1838 and from China in 1853 to work on the plantations (Green & Emanuel 2000). This led to the multi ethnic mix reflected in the population of Guyana today. During the first half of the 20^th century, the population rose significantly with the influx of indentured labourers, from 375,000 in 1946 to 700,000 in 1970 (Lennox 1994; Green & Emanuel 2000).

Forbes Burnham, Prime Minister of Guyana came into power in 1964, independence was gained in 1966 and the Republic was formed in 1970. According to Trotz (2006:54), “Burnham initiated an authoritarian rule and a failed co-operative socialist experiment” which led to economic decline. This had a huge impact on migration and on the resident population of Guyana. Consequently the latter remains static at 741,908 according to the 2002 Guyanese Census, with 44% Indian, 30% African, 17% mixed and 9% Amerindian. The current population consists mainly of young people with an average age of 23.9 years. Only 4.8% of Guyanese are older than 65 years (Pan American Health Organisation 2010; The World Factbook 2013). See Figure 1 for composition of population.

Guyanese culture is unique due to the influences of six different racial groups. Significant cultural and ethnic variations exist within each category, but all adopted the colony’s dominant British culture. The racial groups lived in harmony until the early 1960s when conflict arose between the African and Indian communities leading to riots. Unease and tension between these two racial groups continue to persist (Pan American Health Organisation 2001).

In my experience, Guyanese people normally present as happy, compassionate and gregarious individuals, keen on family life and engagement in social activities with friends. The lifestyle during the 1960s was based on the British culture with an emphasis on education. Those practices are fading as the majority of the population from that era have migrated leaving a generation whose experience has been shaped by economic hardships.

Guyanese food choices are influenced by racial diversity with some similarities to the Caribbean diet. Staple dishes include curries eaten with roti (a fried flatbread), dhal, rice with peas or beans, plantains, fried rice and chow-mein (stir fried noodles), with all meals accompanied by a fiery sauce. Speciality dishes like Pepperpot, an Amerindian stew, and garlic pork, a Portuguese dish, are traditionally served at Christmas (Smock 2008).

The class structure of Guyana affects the two main racial groups, African Guyanese and Indo Guyanese and reflects its colonial past (Williams 1991). Alleyne (2002) writes that the African slaves came from cultures with highly developed family systems but slavery caused a devastating effect on these systems as the slaves were denied preservation of their respective cultural traditions. Instead they adopted the values of their colonial masters. These colonial values were perceived as superior by the slaves and eurocentrism was promoted by the colonial education system that idealised British customs (Alleyne 2002). From the late 19^th century an African Guyanese middle class emerged and flourished. They claimed a place in society because they met standards set by the British (Moore 1995).

Conversely the Indo Guyanese came as indentured servants but held on to their cultural traditions, developing a nationalist ideology based largely on values they were not pressurised to assimilate (Moore 1995). They were given land by the plantation owners following their period of indenture and stayed within their small communities. Consequently these two diverse groups of people were treated very differently by their colonial masters. This led to a class structure where Indo Guyanese were perceived as inferior and lower class. Many former slaves had mixed relationships with their masters evolving into a mixed race middle class population in this colony (Moore 1995).

Colonialism and post colonialism are important issues to be considered because Guyana was still under colonial rule when the women in this inquiry migrated to the UK. People living in a colony can be controlled and influenced by domination of one group over another (Macleod & Bhatia 2007). The way in which groups respond to this can lead to struggles for ethnic, cultural and political autonomy. This resistance and reconstruction is termed post colonialism (Macleod & Bhatia 2007). The effects of colonialism and post colonialism on the Guyanese women when they migrate to the colonial power (often referred to as ‘the mother country’) will be discussed in Chapter 4.

The next section reflects the type of health care system that existed before the Guyanese participants in the inquiry migrated and one that is still in existence today. The beliefs and practices that Guyanese people hold which play a key role in how they manage maintenance of health and episodes of illness, are also covered next.

Health Care

In Guyana the health care system consists of public and private sectors (Pan American Health Organisation 2001). The public sector services are free at the point of delivery and broadly similar to the British NHS system whereas an established private sector provides services for a fee. The Ministry of Health has responsibility for health care, health promotion and protection programmes. Guyana, like the rest of the world, is facing a growing diabetes epidemic. Diabetes is a leading cause of morbidity, disability and mortality and a major public health problem. There are between 30,000 and 40,000 Guyanese living with either Type 1 or Type 2 of the disease. Every year 5000 new cases of mainly Type 2 Diabetes emerge from a population of 741,908 (Ramsammy 2011).

Guyanese hold many traditional beliefs and practices that co-exist with the established health care system. Obeah, a folk religion of African origin, incorporated beliefs and practices of all immigrant groups. This traditional folk belief system evolved during the slave period and has continued to be practised in Guyana. Obeah practitioners could be African Guyanese or Indo Guyanese, and members of all BME groups consult them for help with problems concerning health, work and domestic life (Pan American Health Organisation 2001). Other practices play a key role in the lives of Guyanese people; for example the use of herbal remedies such as ‘bush tea’ to treat minor ailments is a normal occurrence among individuals.

Throughout the history of Guyana the church has helped to maintain the social and political status quo (Greene & Emanuel 2000). The Dutch, French and British colonial powers played a role in influencing religious beliefs. Many Guyanese people are influenced by either Catholic or Anglican doctrines. However, there are also people of the Hindu and Muslim faiths (Greene & Emanuel 2000). These varied traditional beliefs can have an impact on Guyanese individuals with long-term conditions, as they grapple with questions regarding why a particular condition has occurred and the likely outcome (Smith 2012). The focus of the next section is on chronic illness which I have termed long-term conditions.

Defining long-term conditions

Defining long-term conditions or chronic illness is complex. The Department of Health DH (2005a) describes long-term conditions as those which have no cure but which can be controlled or contained by medication or other interventions. These conditions include diabetes, multiple sclerosis, arthritis, asthma and chronic pulmonary obstructive disease. This perspective however, is viewed as a biomedical definition compared to other definitions that see long-term conditions in a more positive light and as a lived experience where the individual is perceived as the expert. The individual’s lived experience is not a feature of the biomedical model which attaches more importance to the anatomy and physiology of the body when it is not functioning appropriately (Nettleton 2006).

WHO (2013) adds to the British Department of Health’s DH (2005) definition of long-term conditions by emphasising that chronic illnesses are diseases of long duration and generally slow progression. However, this definition also focuses on the negative aspect of the condition/chronic illness with the individual being perceived as passive objects of interventions and treatment rather than being involved in their own decision making process (Jones 1994).

It is important to stress that the terminology for a long-term condition has changed over time. Literature of the late 20th century described chronic illness as long lasting and incurable (Denny & Earle 2009) in contrast to acute illness which was perceived as short-term, self-limiting or curable. In recent decades there has been a rapid growth in knowledge and understanding of chronic illness. According to Denny and Earle (2009) the term ‘chronic’ does not allow for periods when the patient is in remission and experiences a period of wellness. By contrast other patients may be ill for most of their lives with symptoms needing treatment or intervention; so ‘condition’ does not sufficiently reflect their situation. Many older people live with a ‘condition’ that limits their ability to cope with day to day activities (Goodwin et al. 2010).

Establishing what living with a long-term condition means to the individual is important in terms of their body, their minds, social situation and how they adapt to and manage changes. This is exaggerated if the individual has co-morbidities or more than one condition with further discomfort and stress becoming an everyday reality (DH 2005). Denny and Earle (2009) use the term patient in their description of ‘chronic’ which still assumes medical control of an illness rather than viewing the individual as an expert who lives with their long-term condition and could be fully cognisant of what is happening to them. This is a further reason why I have chosen a PAR approach in this inquiry; that is, to walk alongside participants and listen to their stories of living with a long-term condition.

Long-term conditions

In developed countries people are living longer but are not necessarily in good health (WHO 2013); over 17.5 million adults in the UK may be living with a long-term condition (DH (E) 2012), about 15 million in England. There is a significant variation across England in the prevalence of long-term conditions and in our understanding of the makeup and needs of the population living with long-term conditions. Traditionally care has been unplanned and episodic, yet people with long-term conditions continue to be the most intensive users of the most expensive services (DH (E) 2012).

Conditions like arthritis, diabetes and depression are becoming increasingly common in older age groups (Denny & Earle 2009; DH 2012). This has resulted in heavy use of secondary care services. The Government placed the care of people with long-term conditions at the top of its agenda in 2004 and published policies relating to the care and treatment of this group: National Service Framework for Long Term conditions (DH 2005); Supporting People with Long Term Conditions (DH 2005); Long Term Conditions: Research Study Conducted for the Department (DH 2009); Choosing Health: Making Health Choices Easier (DH 2004). This latter policy document (DH 2004) introduced community matrons to work with patients with long-term conditions and become key drivers to improve services for them.

DH(2005) suggests that patients with long-term conditions require support. A further report by DH (2005a) identified the need for differing levels of care depending on the stage of the condition and whether the individual had multiple conditions. The majority of individuals require help and support to develop the ‘knowledge, skills and confidence’ to self-care. DH (2005a) identified three levels of care for people suffering with long-term conditions based on the Kaiser Permanente model which serves to illustrate the complexity and progressive nature of long-term conditions. Level 1 care is for the 70-80% of the population of people with long-term conditions who require self-care support and management; level 2 care is for those individuals who are a high risk and will need case management; and level 3 care is for those individuals who fall into the high complexity category - approximately 50 individuals per GP practice fall into this category (DH 2005a). So far there have been many UK policies produced that have been the main drivers for the services to be made more effective and provide differing levels of care for those with long-term conditions. However assessing the impact has been difficult for the UK population especially as individuals from BME communities may not necessarily obtain the care and support that they require (Oldroyd et al. 2005).

Individuals from BME communities are more likely to report long-term health problems than their indigenous counterparts; the prevalence of long-term conditions is at least five times higher among those from BME backgrounds in the UK (DH2001, 2007). The explanation for this according to Higginbottom (2006) and Salway et al. (2007a) is that in BME groups’ long-term problems may relate to migration issues and the separation of family members. Support is crucial in trying to manage and live with a long-term condition. Therefore, the presence or absence of a family and household are strong influences on whether or not people are able to come to terms with, cope with, and manage a long-term health condition. Besides family support there are a number of frameworks that have been developed to assist individuals in managing their condition regardless of their ethnicity.

Chronic Illness frameworks

The WHO provides guidelines on how health services can be formulated for those with long-term conditions worldwide. In 2002, the WHO produced the Innovative Care for Chronic Conditions report which was intended to alert decision-makers about the changes in global health regarding chronic conditions. The aim of this report was to prepare policymakers, health service planners and other relevant parties to take the pertinent action to reduce the threats these conditions pose to the health of the individual. The report was particularly generated with low and middle income countries in mind, as their systems were not designed to manage chronic problems. This new style of management needed a paradigm shift to create a different kind of health care system that was based on integrated health care (Hudson 2005).

The WHO produced a later report in 2011 examining issues related to the provision of health care for those with non-communicable diseases, the revised name for long-term conditions in low and middle income countries, the geographical grouping under which Guyana falls. Apparently these countries still have health care systems that do not meet the need for chronic care as their focus remains on hospital-centred care. Often, diagnosis of the condition is made when the disease is at an advanced stage and requires expensive high technology interventions. This report from the WHO sets global standards that still reflect the medical model of treatment for those with long-term conditions. However a shift has been made in the sense that the individual is viewed as an expert and is empowered to self-manage his or her condition. This change in perspective reflects an assumption made by the WHO that people are willing and able to perform various self-care behaviours that are full of complexity. Ferner (2003) suggests that communicating instructions to encourage self-care behaviours can be difficult and as with any long-term condition, misunderstandings can occur. Therefore, care needs to be taken to ensure that self-management is appropriate for individuals, in particular those migrants who face potential language or cultural barriers.

The self-care option for long-term conditions has been adopted by most countries uncritically and in the UK by the Expert Patients Programme which is designed to assist individuals to:

reduce the severity of their symptoms

work in partnership with NHS professionals

improve their confidence and resourcefulness in managing their condition more effectively

(DH2005)

Wagner (2010) suggested that the aim of the model was to provide a well organised system where chronically ill patients would routinely receive evidence-based clinical and supportive therapy, effective self-management support and systematic follow up tailored to their needs. Wagner (2010) identified a growing number of persons living with major chronic illnesses who were facing many obstacles in coping with their condition, largely due to medical care that did not meet their needs for effective clinical management, psychological support and information. The primary reason for this may be the mismatch between the persons’ needs and the care delivery systems that had been designed for acute illnesses. Evaluation of the quality of individual care received and the need to identify individuals requiring more attention are important parts of the model (Wagner 2010).

The challenge for policymakers in the UK has been to develop mechanisms to enshrine the principles of public involvement, patient participation and choice for patients with long-term conditions (Goodwin et al. 2012). Whilst the shift in care is enshrined in words like ‘public involvement’ and ‘patient participation’, the traditional model of care still prevails because long term conditions, such as diabetes, are being treated based on a medical model (Blaxter 2004). ‘Patient’ is used which denotes some element of power in the relationship; problems and needs are identified by the care giver and the individual is promoted as a passive recipient of care rather than as an individual who can articulate their own needs.

Co-ordinated care planning in the UK for those with long-term conditions has attempted to change the passive relationship between the individual and the health care practitioner (Goodwin et al. 2012). Dialogue is encouraged, active participation and giving the individual a choice in their treatment is recommended but there is variability in the proportion of people who have a care planning discussion. Darzi (2008) suggests that there is a need to better co-ordinate care planning as well as focus on equitable interventions that promote health and wellbeing. Care planning seems to vary within Primary Care Trusts (PCTs) ranging from 77% to 86% across the country (DH (E) 2012). PCTs in London and the South East, the area of the inquiry along with other urban areas, have lower rates of care planning discussions than elsewhere (DH (E) 2012). The DH (E) (2012) has suggested that the new Health and Social Care Act 2012 will strengthen commissioning of NHS services and alter the present PCTs to form clinical commissioning groups (CCGs). General Practitioners (GPs) will take on the role of commissioners with a special focus for those with long-term conditions. This will take place through securing continuous improvements in the quality of services commissioned; reducing inequalities; enabling choice and promoting patient involvement. Personalisation, information, choice, supported self-care, shared decision making, integration and cross boundary working is expected to be the norm for people with long-term conditions (DH (E) 2012). Whilst the services for those with long-term conditions have continued to develop, frameworks for monitoring and standardising the quality of practices have been introduced into the NHS.

Quality monitoring of the delivery of care for those with long-term conditions was introduced in 2004. The Quality Outcomes Framework (QOF) (NICE 2009) is designed to monitor quality as part of the General Medical Contract, a specific scheme for GP practices in the UK. The framework standardised expected improvements in the delivery of clinical care for those with long-term conditions. QOF was designed to make the monitoring of individuals with long-term conditions more proactive thus improving current practice. The majority of GP practices have taken part in it voluntarily. Where practices achieve set quality measures known as specific indicators, they are financially rewarded as an incentive to provide good quality care and reinvest in the services provided. QOF includes a clinical section with a number of condition specific areas including diabetes. Unfortunately the introduction of payments under this framework led to unintentional PCT changes that shifted towards a more biomedical, disease-orientated model of care (Checkland et al. 2008). It became a ‘tick box’ exercise for those with a long-term condition.

Another programme developed by the UK government to improve quality of care within the NHS whilst making efficiency savings is QIPP (an acronym for quality, innovation, productivity and prevention). The programme is designed for the benefit of patients and carers and the money saved by innovative practices and reduction of staff is reinvested in frontline care. There has been a major challenge for the NHS to achieve savings of £20 billion by 2015 (RCN 2012; DH 2011). The programme is national but developed and implemented locally. The main emphasis of QIPP is to make changes to local service delivery, for example, providing closer to home care for those with diabetes. In reality, this has not happened in many areas even though QIPP developed using evidence and best practice which has been formally tested since 2012 by Early Implementer sites (RCN 2012). QIPP has several work streams where savings have to be made but the one that is relevant for this inquiry is the long-term condition work-stream that identified three key principles:

Risk profiling

Neighbourhood care teams

Self-care/shared decision making

In addition the long-term condition work-stream within the QIPP programme has to reduce unscheduled hospital admissions by 20%, length of stay by 25% and maximise the number of people controlling their own health through supported care planning (RCN 2012). This programme feels more resource-led rather than being in the interests of those with a long-term condition.

There has been much criticism of QIPP by Corrigan (2011) who highlighted the tensions in the QIPP programme between top down economic planning and bottom up efficiency savings at the frontline. Corrigan (2011) argues that the demands of QIPP can be satisfied by filling boxes in a certain way but GPs for example, do not necessarily make efficiency savings in the way the QIPP planners require. Maynard (2011) states that meeting the £20 billion recycling target by QIPP is largely un-evidenced and ambitious. There is a definite need to assess whether or not individual outcomes are compromised by these quality systems so that they are not adversely affected by the efficiency changes (RCN 2012). If individuals with long-term conditions are managed effectively in the community, they should be able to enjoy a quality of life free from crises. Lorig et al. (1999) show how partnership between the public and the health care practioners can be formed successfully, leading to improved outcomes for individuals with chronic diseases, the other term used for long-term conditions. This study demonstrates how a structured education programme involves people with chronic illnesses in dealing with common issues such as pain management, stress and self-management and developing coping skills on a daily basis. Lorig’s work is referred to in more detail in Chapter 3.

A global perspective of diabetes followed by the UK’s estimates of individuals with the long-term condition is discussed in the next section. Within the same section, the development of diabetic services and standards used to monitor the effectiveness of services delivered to individuals in the UK is also addressed.