Health Needs Assessment of Black and Minority Ethnic Patients with Diabetes in NHS Fife

Health Needs Assessment of Black and Minority Ethnic Patients with Diabetes in NHS Fife Miss Chanda Bhogaita RD Diabetes Managed Clinical Network NHS Fife March 2011 Author: Chanda Bhogaita Page 1 of 90 Review Date: 27/01/11

Acknowledgements We would like to sincerely thank all the black and minority ethnic people with diabetes who provided their views and experiences about the services they receive in NHS Fife. We would also like to thank all the healthcare professionals who provided information about their work and experiences of delivering services for black and minority ethnic people with diabetes in NHS Fife We would like to acknowledge the following people for their help, guidance and support throughout the project: Community engagement and participation Dr Daksha Patel (Health Advocacy Worker, Frae Fife) Ms Angela Heyes (Equality and Diversity Lead, NHS Fife) Mr Sandy Kopyto (Principle Clinical Pharmacist, NHS Fife) Academic supervision Professor Helen Colhoun (Professor of Public Health University of Dundee/Honorary Consultant in Public Health, NHS Fife) Dr David Chinn (Research Coordinator, NHS Fife) Information analysis Mr Bryan Archibald (Senior Information Analyst, NHS Fife) Literature searches Ms Dorothy Woolley (Public Health Librarian, NHS Fife) Administrative support Ms Kirsty Jablonski (MCN Administration, NHS Fife) Ms Corol Kerr (MCN Administration, NHS Fife) Ms Gillian Pickford (MCN Administration, NHS Fife) Author: Chanda Bhogaita Page 2 of 90 Review Date: 27/01/11

Contents Executive summary...4 1. Introduction...6 2. Aims and objectives...7 3. Methodology...8 4. Epidemiology...10 5. Population Profile...12 6. Best practice in diabetes services for BME patients...18 7. Local diabetes services for BME patients...22 8. Clinical outcomes for Pakistani patients with type 2 diabetes...23 9. Consultations...29 10. Key findings.56 11. Conclusion..58 12. Recommendations.59 References 61 Appendices...69 Author: Chanda Bhogaita Page 3 of 90 Review Date: 27/01/11

Executive Summary Scotland has continued to see a steady rise in the prevalence of diabetes with type 2 diabetes accounting for 85-90% of all diagnosed cases. Some people from black and minority ethnic (BME) groups are more likely to develop type 2 diabetes, at a younger age and lower thresholds for body mass index and waist circumference compared to the general population. In addition, people from BME backgrounds are at increased risk of developing serious complications associated with type 2 diabetes, approximately five to ten years in advance of their European counterparts. It is recognised that some people from BME groups may experience difficulties accessing healthcare services and receive poor diabetes care due to discrimination, racism, cultural, religious and language barriers. Tackling inequalities and addressing the needs of people from BME communities is set in the wider context of the Government s equality and diversity agenda. NHS Fife undertook this review to assess the needs of BME patients with diabetes and healthcare providers, in order to improve the delivery of culturally competent services. A combination of quantitative and qualitative research methodologies were used to ensure robust assessment with tangible outcomes. Key findings identified; a lack of ethnicity and cultural data recording, poorer diabetes clinical outcomes for Pakistani patients with type 2 diabetes compared to the general Fife population, the need for culturally sensitive care and education with appropriate language support, the need for healthcare staff training, and the need for adequate resources to improve integration of BME care and education into mainstream diabetes services. The relatively small BME population and disperse geographical distribution has implications on how diabetes services can be equitably delivered in NHS Fife. The review process identified 3 broad themes to improve the local delivery of culturally competent care and education; the recommendations from each of these themes are listed below: Internal policies and procedures Improve the recording of ethnicity and cultural data using the Scottish Census 2011 ethnic classifications and National Resource Centre for Ethnic Minority Health ethnic monitoring toolkit for guidance. Generate data about the diabetes clinical outcomes in BME groups to compare with the total Fife population, in partnership with EMIS, Vision and SCI-DC. Author: Chanda Bhogaita Page 4 of 90 Review Date: 27/01/11

Urgently address the need for permanent funding to support diabetes services to develop a sustainable service model linked as closely to mainstream services as possible to ensure that BME patients receive culturally sensitive and language appropriate diabetes care and education. BME patients care, education, information and support needs Establish clear lines of communication with local BME groups to identify needs and support access to culturally sensitive mainstream diabetes services, in partnership with Patient Focus and Public Involvement. Design a referral pathway to identify BME patients suitable for culturally sensitive educational programmes delivered by a healthcare professional with an interpreter (if required), trained BME health link worker or bilingual healthcare professional. Develop a protocol for dissemination of information about resources, local services and health initiatives using effective communication methods e.g. trained interpreters, Frae Fife, BME communities or faith groups. Healthcare staff training and information needs Provide training for healthcare staff in partnership with equality and diversity about culturally competent practice and service delivery e.g. wider issues around racism, BME cultural practices and health needs, resources and the appropriate use of interpreting services. Provide training for interpreters in partnership with interpretation and translation services about the use of medical terminology, style of healthcare consultations and delivering group education sessions. Develop a web page on the intranet together with the three community health care partnerships with information about BME information resources, local sources of support, literature produced by the National Resource Centre for Ethnic Minority Health (NRCEMH), and NHS Fife Diabetes Handbook updated to include a chapter on the management of BME patients with diabetes. Author: Chanda Bhogaita Page 5 of 90 Review Date: 27/01/11

1.0 Introduction Diabetes is recognised as one of the most challenging health and socio-economic problems in the world. The estimated global prevalence of diabetes is 285 million people, which represents 6.6% of the world s adult population. By 2030, this is projected to rise to 438 million people, which represents 7.8% of the world s adult population. 1 Diabetes is a significant contributor to mortality and morbidly associated with its short and long term complications such as hypoglycaemia, diabetic ketoacidosis, hyperosmolar hyperglycaemic state, cardiovascular disease, retinopathy, neuropathy and nephropathy. In the UK there are 2.8 million people diagnosed with diabetes, which represents 4.26% of the UK s population, and an estimated 850,000 people who remain undiagnosed. 2 Scotland has continued to see a steady increase in the prevalence of diabetes which poses serious clinical and financial concerns. In Scotland there are 228,004 people diagnosed with diabetes, which represents a crude prevalence of 4.4%, and an estimated 20,000 people who remain undiagnosed. 3 Diabetes is the most common endocrine disorder, with type 2 diabetes accounting for 85-90% of all diagnosed cases. 4 Type 2 diabetes is characterised by insulin resistance and relative insulin deficiency and is associated with older age, overweight and obesity. Some black and minority ethnic (BME) groups including people with African, Asian and Caribbean backgrounds are at a greater risk of developing type 2 diabetes, at a younger age (25 years and over compared with 40 years and over in Europeans) and lower thresholds for body mass index and waist circumference (in people of Asian descent). 4,5,6 In addition, they are at increased risk of developing complications associated with type 2 diabetes, five to ten years in advance of their European counterparts. 7,8,9 It is recognised that some people from minority ethnic groups may experience difficulties accessing healthcare services and receive poor diabetes care due to 10, 11, 12 discrimination, racism, cultural, religious and language barriers. Tackling inequalities and addressing the needs of people from minority ethnic communities is set in the wider context of the Government s equality and diversity agenda. Policies such as Fair for All 13 and the Race Relations (Amendment) Act 2000 14 have lead to the development of local schemes 15 which promote the delivery of culturally competent services. Author: Chanda Bhogaita Page 6 of 90 Review Date: 27/01/11

2.0 Aim and objectives The aim of the project was: To assess the needs of BME patients with diabetes and healthcare providers, in order to make recommendations for the provision of culturally competent services in NHS Fife The objectives of the project were: To describe the epidemiology of diabetes in BME groups in NHS Fife To identify best practice in providing services for BME patients with diabetes To determine services provided for BME patients with diabetes in NHS Fife To generate information about clinical outcomes for Pakistani patients with type 2 diabetes in NHS Fife To obtain views from Chinese and Pakistani patients with diabetes about the services they receive in NHS Fife To obtain information from healthcare professionals about the services they provide for BME patients with diabetes in NHS Fife To make recommendations for enhancing current services in order to meet the needs of BME patients with diabetes in NHS Fife Author: Chanda Bhogaita Page 7 of 90 Review Date: 27/01/11

3.0 Methodology In order to meet the aim and objectives of the project, the approach was based on the five steps of health needs assessment outlined by the National Institute for Clinical Excellence. 16 A combination of quantitative and qualitative research methodologies were used to ensure robust assessment with tangible outcomes. Step 1 Getting started A project board consisting of key stakeholders was established to agree a plan outlining the study population, aim of assessment, capacity and scope of the project. After careful consideration of several factors such as the size of local BME population, health priorities, likely availability of data, feasibility and timescales of the project, it was decided to focus on people from Pakistani, Chinese and Migrant worker e.g. Polish backgrounds. Step 2 Identifying health priorities In order to estimate the BME population with diabetes in Fife a profile was created using population data from the Scottish Census 2001 17 prevalence data from the Health Survey for England 2004 18 and various smaller scale pieces of research in BME groups 6. A manual review of the electronic medical records of Pakistani patients with type 2 diabetes in NHS Fife was conducted. SCI-DC was used to search for Pakistani patients based on name. This technique could not be applied to accurately find patients from other BME groups. The diabetes outcomes for Pakistani patients with type 2 diabetes were compared to general Fife outcomes. A literature review was undertaken to identify best practice in providing services for BME patients with diabetes. Findings from this together with scoping work to determine current services provided in NHS Fife for BME patients, revealed potential areas for service improvement and resource allocation. Qualitative information was gathered about the population s perceptions of needs using community engagement and participation methods. Frae Fife s health advocacy worker was instrumental in creating links between the researcher and local BME communities. Snowballing techniques proved to be successful at recruiting Pakistani and Chinese participants however, unsuccessful at recruiting Polish. Further investigation into reasons for non-participation of migrant workers in research is needed. Focus groups, held in community venues were used to elicit views from Pakistani and Chinese patients with diabetes about the services they receive in NHS Fife. Four main areas for consultation were identified, and a semi-structured interview Author: Chanda Bhogaita Page 8 of 90 Review Date: 27/01/11

schedule was used to capture data (please see appendix 1). Focus group discussions and important aspects of the group's interaction were all documented. Data was analysed to identify conceptual categories. The focus groups enable participants to contribute to wider discussions around service planning. Qualitative information was gathered about the interpreter s perceptions of needs through community engagement and participation methods⁶. The NHS Fife lead for equality and diversity was instrumental in creating links between the researcher and local interpreters. Focus groups were used to obtain views from interpreters about the services they provide for BME patients with diabetes. Seven main areas for consultation were identified, and a semi-structured interview schedule was used to capture data (please see appendix 2). Focus group discussions and important aspects of the group's interaction were all documented. Data was analysed to identify conceptual categories. The focus groups provided an opportunity for cross-sectoral partnership working. Quantitative information was gathered about the service providers perceptions of needs. A questionnaire was used to obtain views from healthcare professionals about the services they provide for BME patients with type 2 diabetes. Seven main areas for consultation were identified, and a survey monkey questionnaire was designed to capture data (please see appendix 3). Data was analysed to look for trends and patterns in responses to identify areas for developing effective interventions. The key issues for the Pakistani and Chinese populations, interpreters and service providers were established based on evidence from extrapolated data and focus group discussions. Step 3 Assessing a health priority for action The interventions considered most effective and acceptable were prioritised and resource allocation discussed with the Diabetes MCN board. Step 4 Action planning for change Recommendations for providing culturally competent services in NHS Fife were made. An action plan will be established to be taken forward by the Diabetes MCN as part of their commitment to the diabetes action plan 2010. Step 5 Moving on/project review After review of the projects achievements, the results were disseminated to participants and stakeholders. A steering group will be established to take responsibility for the implementation of the recommendations. Author: Chanda Bhogaita Page 9 of 90 Review Date: 27/01/11

4.0 Epidemiology Prevalence of diabetes in BME groups There is limited data on the incidence of diabetes in BME populations, due to a lack of large scale studies with follow-up phases and maintenance of accurate population-based registers. 5 Research states that people from BME groups are at a greater risk of developing type 2 diabetes compared to the general population. Table 1 below shows the most recent self-reported data on doctor-diagnosed type 2 diabetes prevalence. Table 1: The Prevalence of Doctor-diagnosed Type 2 Diabetes by Sex and Ethnic Group, 2004, England 18 Black Caribbean Black African Indian Pakistani Bangladeshi Chinese General Population Men Prevalence of type 2 diabetes (%) Type 2 9.5 4.3 9.0 7.3 8.0 3.4 3.8 Standardised risk ratios Type 2 Standard error of the ratio 2.37 0.65 2.17 0.71 3.17 0.52 3.27 0.66 4.59 0.94 1.44 0.44 Women Prevalence of type 2 diabetes (%) Type 2 7.6 2.0 5.9 8.4 4.5 3.3 3.1 Standardised risk ratios Type 2 Standard error of the ratio 3.16 0.53 2.14 0.73 2.95 0.55 6.25 1.05 3.64 0.90 2.06 0.58 The observed prevalence of doctor-diagnosed type 2 diabetes was significantly higher in Pakistani men and women than in the general population. After adjusting for age, doctor-diagnosed type 2 diabetes was over three times as likely in Pakistani men compared to men in the general population. Among women, doctor-diagnosed type 2 diabetes was over six times as likely in Pakistani women compared to women in the general population. Further data on estimated diabetes prevalence, based on oral glucose tolerance tests in South Asians suggests a four to six fold higher prevalence of diabetes in 19, 20, 21 South Asian people compared to Europeans. The Phase 3 PBS model states the greatest diabetes prevalence among South Asians. 22 1 1 Author: Chanda Bhogaita Page 10 of 90 Review Date: 27/01/11

Prevalence of diabetes associated complications in BME groups It is widely acknowledged that some minority ethnic populations are at increased risk of developing complications associated with type 2 diabetes compared to 5, 23 European populations. CHD is more common in South Asians, presents at a younger age and has a 50 24, 25 per cent higher mortality compared to Europeans. The elevated CHD mortality has been linked to the number of people with diabetes as a result of insulin resistance and other related atherogenic risk factors such as a lipid profile 26, 27 of low HDL cholesterol, high triglycerides and higher Lipoprotein(a). Stroke is also more common in South Asians, occurs at a younger age and has a 40 per cent higher mortality compared to Europeans. 28 Diabetes has been identified as a strong predictor of stroke mortality in South Asians. 29 Diabetic retinopathy is also more prevalent in South Asians compared to Europeans. 30 The younger age of onset, longer duration of diabetes, poorer glycaemic, blood pressure and lipid control may explain the higher level of microvascular complications observed in South Asians. 31 The prevalence, rates of progression and mortality associated with diabetic nephropathy vary significantly between ethnic groups. 32 Studies suggest a two- to 33, 34, 35 threefold higher prevalence of overt nephropathy in South Asians. Furthermore, South Asians are more likely to have severe disease (CKD stages 4 and 5) compared to Europeans, suggesting a faster progression of renal disease. 36 Author: Chanda Bhogaita Page 11 of 90 Review Date: 27/01/11

5.0 Population profile of BME groups living in Fife Population In 2001, there were 4426 people from BME groups living in Fife, which represented 1.3% of the total population. 37 Of these the largest BME groups were Pakistani, followed by Chinese, Indian and those of Any Mixed Backgrounds. 38 Figure 1, illustrates the proportions of BME groups living in Fife. Figure 1: Non-white Fife Population, by Ethnic Group: 2001 The 2001 Census data is likely to have underestimated the true BME population as figures for Refugees & Asylum Seekers, recent migrant workers, and Gypsy/Travellers were not included. In Fife, the BME population increased by nearly 50% between 1991 and 2001. 39 Author: Chanda Bhogaita Page 12 of 90 Review Date: 27/01/11

Age For both males and females, ethnic minority groups have a younger age profile than the white population in Fife. 40 Figure 2, illustrates the distribution of population by ethnic group and age in Fife. Figure 2: Distribution of Population by Ethnic Group and Age in Fife: 2001 Author: Chanda Bhogaita Page 13 of 90 Review Date: 27/01/11

Deprivation Figure 3, illustrates the distribution of Fife s population by ethnic group and Scottish Index of Multiple Deprivation (SIMD) deprivation quintile. People from Indian and Chinese backgrounds are more likely to live in the least deprived quintile. Whereas, Pakistanis and other South Asians are more likely to live in the most deprived two quintiles and the least deprived quintile. 40 Figure 3: Distribution of Fife Population by Ethnic Group and Fife SIMD2009 Quintile: 2001 Author: Chanda Bhogaita Page 14 of 90 Review Date: 27/01/11

Geography Fife's BME population is smaller compared to larger cities such as Glasgow (5.5% of the population), Edinburgh (4.1), Dundee (3.7) and Aberdeen (2.9). 38 Figure 4 illustrates the percentage of each council area that are minority ethnic. Figure 4: Percentage of people in each council area that are minority ethnic, 2001 Minority Ethnic Residents (%) Fife contains a significant rural population which is characterised by disperse geographical distribution. It is therefore probable that the experiences of BME groups in Fife may differ from those in the other areas such as Edinburgh or Glasgow. Author: Chanda Bhogaita Page 15 of 90 Review Date: 27/01/11

Prevalence of diabetes At the beginning of 2010 there were 16,759 people with known diabetes in Fife, which represented a crude prevalence of 4.6% of the total population. 3 The majority of registered patients had type 2 diabetes, 87.8%. 3 Data on ethnicity was available for only 26.0% of the registered diabetic population in NHS Fife³ therefore it was not possible to accurately calculate the number of BME people with diabetes from SCI-DC. Table 2, shows the estimated diabetes prevalence in NHS Fife by CHP and ethnicity. The following assumptions were used to generate data: CHPs have the same proportions of BME population as in the Scottish Census 2001 17 Type 2 diabetes is 6 times more likely in South Asians compared to the white population.⁶ Type 2 diabetes is 3-5 times (4) times more likely in the Black African Caribbean community compared with the white population.⁶ The prevalence of diabetes in the Chinese community is around 1 in 20 (5%).⁶ Table 2: The estimated diabetes prevalence in NHS Fife by CHP and ethnicity CHP Ethnicity Diabetics Prevalence All Type1 Type2 All Type1 Type2 Dunfermline & West ALL Fife CHP 6038 642 5375 4.1% 0.4% 3.7% White 5801 617 5164 4.0% 0.4% 3.6% Chinese 14 2 12 5.0% 0.6% 4.4% Indian 43 5 38 24.1% 2.6% 21.5% Pakistani 114 12 102 24.1% 2.6% 21.5% Other South Asian 22 2 20 24.1% 2.6% 21.5% Black 25 3 22 16.1% 1.7% 14.3% Glenrothes & NE Fife CHP Kirkcaldy & Levenmouth CHP Other 19 2 17 4.0% 0.4% 3.6% ALL 4831 608 4188 3.8% 0.5% 3.3% White 4615 581 4001 3.7% 0.5% 3.2% Chinese 20 3 17 5.0% 0.7% 4.3% Indian 42 5 37 22.1% 2.8% 19.1% Pakistani 74 9 64 22.1% 2.8% 19.1% Other South Asian 28 4 24 22.1% 2.8% 19.1% Black 29 4 25 14.7% 1.9% 12.8% Other 22 3 19 3.7% 0.5% 3.2% ALL 4071 461 3601 4.1% 0.5% 3.6% White 3871 438 3424 4.0% 0.4% 3.5% Chinese 7 1 6 5.0% 0.6% 4.4% Indian 40 4 35 23.7% 2.7% 21.0% Pakistani 103 12 91 23.7% 2.7% 21.0% Author: Chanda Bhogaita Page 16 of 90 Review Date: 27/01/11

Other South Asian 16 2 14 23.7% 2.7% 21.0% Black 25 3 22 15.8% 1.8% 14.0% Other 9 1 8 4.0% 0.4% 3.5% NHS Fife ALL 14940 1711 13164 4.0% 0.5% 3.5% White 14276 1635 12579 3.9% 0.4% 3.4% Chinese 40 5 35 5.0% 0.6% 4.4% Indian 128 15 112 23.3% 2.7% 20.5% Pakistani 298 34 262 23.3% 2.7% 20.5% Other South Asian 67 8 59 23.3% 2.7% 20.5% Black 81 9 72 15.5% 1.8% 13.7% Other 50 6 44 3.9% 0.4% 3.4% In addition to the BME groups listed in the table above, people from other BME groups such as Refugees & Asylum Seekers, Migrant workers e.g. Polish, and Gypsy/Travellers, will also have diabetes. However, estimating the number of people with diabetes in these populations was not possible due to a lack of information from the Census 2001. This problem may be rectified by the introduction of new ethnic classifications in the Scottish Census 2011 (Please see appendix 4). It was estimated that 664 people from BME communities had diabetes, which represented 4.4% of the total population in Fife. Type 2 diabetes accounted for majority of cases (87.95%). Of these the greatest prevalence was observed in the South Asian population (74.1%). Figure 5, illustrates the proportion of BME groups with type 2 diabetes in NHS Fife. Figure 5: BME Groups with Type 2 Diabetes in NHS Fife Author: Chanda Bhogaita Page 17 of 90 Review Date: 27/01/11

6.0 Best practice in diabetes services for BME patients National policy and guidance Providing world class care which is equitable, effective and person-centred for people from BME communities is an important strand of the NHS Quality Strategy. 41 The Scottish Diabetes Framework 2002 42, Scottish Diabetes Framework Action Plan 2006 43, Better Diabetes Care Consultation Document 44 which contributed to the development of the Scottish Diabetes Action Plan 2010 45 have been instrumental in establishing a programme of interventions to improve the quality of diabetes services and outcomes for BME patients with diabetes. Other drivers of improvements in diabetes services are; the Scottish Intercollegiate Guidelines Network (SIGN) 116 46, NHS Quality Improvement Scotland, Diabetes Clinical Standards 47 and follow-up report 48, and the General Medical Services contract which provides a set of quality indicators within a Quality and Outcomes Framework (QOF). 49 The National Resource Centre for Ethnic Minority Health (NRCEMH) has been instrumental in improving services for BME patients with diabetes. Table 3, describes some of their most influential resources. Table 13: Resources produced by the NRCEMH 50 Name of resource Purpose Year published Diabetes in Minority Ethnic Groups in Scotland 51 The purpose of this report is to stimulate ideas and learning that will help those who care for people with diabetes from BME groups to develop a framework to run multi-disciplinary programmes. 2004 Current Status of Cultural Competency Training in NHS Scotland 52 Review of all training relating to cultural competency within the NHS organisations. 2004 Peer Review Toolkit 53 Methodology to evaluate cultural competency training programmes. Aims to share good practice while providing a supportive feedback for 2004 Author: Chanda Bhogaita Page 18 of 90 Review Date: 27/01/11

continuous improvement Ethnic Monitoring Toolkit 54 Focus on Diabetes 6 Now we re really talking Interpreting Guidelines for staff of NHS Scotland 55 Final Report Achievements and challenges in ethnicity and health in NHS Scotland 50 The Toolkit incorporates guidelines and training resources to support the planning and implementation of patient ethnicity within NHS Scotland. The resource pack provides information for health staff working with BME patients with diabetes. This document provides useful guidelines on working with interpreters. This is the final report covering the achievements of last six years by the National Resource Centre for Ethnic Minority Health. 2005 2007 2008 2009 Diabetes UK has worked to promote the delivery of culturally competent services for BME people with diabetes. It produced a checklist 56 which enabled healthcare providers to assess the cultural competence of their diabetes services, with specific reference to issues around cultural sensitivities, need for an interpreter, patients reading ability, need for education/information, lifestyle and dietary matters, awareness of patients of local sources of information or support, awareness of patients of diabetes UK s free language materials and Careline interpreting service. This work informed the development of Focus on Diabetes in partnership with the NRCEMH. Evidence A literature review was conducted to identify best practice in providing services for BME patients with diabetes. Critical analysis focused on the following areas required to provide culturally competent services: Types of intervention Author: Chanda Bhogaita Page 19 of 90 Review Date: 27/01/11

There is insufficient evidence to support intensive medical interventions in BME patients with diabetes. However, there is good quality evidence linking culturally competent educational programmes with improved levels of knowledge and glycaemic control in this high risk group. 57, 58, 59, 60 Whilst educational programmes have been accredited with influencing improvements in knowledge, their ability to achieve positive biochemical outcomes needs further investigation. 61 Health Link Workers There is some evidence which suggests that health link workers are vital 62, 63 components of diabetes service delivery for BME patients. Their multifaceted role in interpretation, advocacy and delivery of education programmes has been 63, 64, 65, 66 linked with enhanced patient understanding and compliance. Whilst it is accepted that health link workers help to meet the communication needs of BME patients in terms of delivering culturally sensitive information in their first 67, 68 language, work is needed to assess their effectiveness and sustainability. Bilingual Healthcare Professionals There is some evidence which suggests bilingual healthcare professionals have an important role in terms of providing diabetes educational programmes for BME 70, 71 patients. Studies have identified a need for bilingual professionals with whom BME patients can discuss their care directly without relying on an interpreter. 69 Interpreters It is universally recognised that interpreters are instrumental in facilitating communication between healthcare staffs and BME patients. There is good quality evidence which advocates the use of professional interpreters rather than friends or family members to ensure the accurate exchange of information. 70 However, consideration needs to be given to the training needs of interpreters e.g. in the use of medical terminology, their roles and responsibilities etc. 70 In addition, healthcare staffs may require guidance on the use of interpreters and problems associated with informal interpreting arrangements. 71 Cultural sensitivities There is limited evidence to identify the factors which contribute to the effectiveness of educational programmes for BME patients with diabetes due to the low number and heterogeneity of studies available. 61 The BME community consists of many disparate groups with widely differing needs and expectations therefore health services need to design educational initiatives with an awareness of the complexity of social and cultural experiences of local target communities. 72, 73 Author: Chanda Bhogaita Page 20 of 90 Review Date: 27/01/11

Cultural competence in health care aims to meet the needs of patients with diverse values, beliefs and behaviours. In order to provide culturally competent diabetes services it is recommended that data about ethnic group, religion, country of birth, ethnic/family origins, diet, preferred gender of health care 51, 54 professionals, alternative medication and preferred language are recorded. Service delivery should then be focused on addressing cultural sensitivities e.g. appropriate language provision, culturally tailored advice, specialist information resources, separate gender education sessions etc. 67,72 Collecting cultural data together with clinical outcomes and user involvement may lead to evidence-based change, both at operational and strategic planning levels. 51 Social networks There is evidence which indicates that family and community networks are an important source of knowledge and emotional support for BME patients with diabetes. 72 Many BME patients make changes based on the opinions and actions of their trusted community members therefore peer led diabetes education programmes have been used to increase knowledge and bring about positive 74, 75 changes. However, their effectiveness needs to be investigated further. It is imperative that health services are aware of local sources of information and support which they can sign post to their BME patients with diabetes. Lifestyle issues There is good quality evidence that lifestyle intervention including a healthy diet and regular physical activity can help to manage diabetes. However, uncertainty exists around culturally specific lifestyle guidance for BME patients. Evidence suggests that the dietary and physical activity advice given to BME patients is often inadequate due to the practitioner s limited understanding of the patient s 76, 77, 78 lifestyle and cultural background. A culturally sensitive approach to lifestyle education based on an understanding of cultural norms and social expectations is needed. 78 Lifestyle strategies should avoid any tendency to overemphasize cultural barriers noting greater similarities than differences between cultural groups. 78 In order to implement any lifestyle interventions training of healthcare staff may be required. Author: Chanda Bhogaita Page 21 of 90 Review Date: 27/01/11

7.0 Services provided for BME patients with diabetes in NHS Fife Current services In NHS Fife the healthcare and education of BME patients with diabetes is provided as part of mainstream services and ad hoc health promotion events. The current model of care is delivered using interpreters and culturally sensitive information resources. A lack of adequate resource, staffing and funding prevents the development of a strategy and sustainable service model to improve integration with mainstream diabetes services. NHS Fife employs a small number of bilingual healthcare professionals and has access to Frae Fife health link workers. However, their lack of formal diabetes training and existing workloads does not allow them to contribute extensively to diabetes services. Recent developments Whilst not aimed specifically at BME patients with diabetes, Winning by Losing (a community weight management programme) was recently piloted in the South Asian community with promising results. Winning by Losing currently operates on time-limited funding, although NHS Fife is committed to mainstreaming the service especially with view to long term condition management. Resources In addition to the above service, the following resources are available for BME patients with diabetes: The Minority Ethnic Structured Diabetes Education website and pack Diabetes UK Careline Diabetes UK resources NHS Choices information about diabetes and heart disease for South Asians Scottish Nutrition and Diet Resources Initiative (SNDRi) and South Asian Nutrition dietary information leaflets for South Asians Services delivered in other areas A full list of services delivered in other areas which may have an impact on diabetes control can be found in, Focus on Diabetes: A guide to working with black and minority ethnic communities in Scotland living with long term conditions pages 53 70 6. Author: Chanda Bhogaita Page 22 of 90 Review Date: 27/01/11

8.0 Clinical outcomes for Pakistani patients with type 2 diabetes The following section presents information about the clinical outcomes for Pakistani patients with type 2 diabetes. In order to identify any inequalities which may exist the clinical outcomes for the Pakistani population have been compared to Fife s total population. A manual review of electronic medical records found 195 Pakistani patients with type 2 diabetes in NHS Fife. Given the estimated number of Pakistani patients with type 2 diabetes in NHS Fife is 262 this would mean that approximately 74.4% of records were analysed. Statistical testing to identify significance differences between samples was not performed as it was considered appropriate to report on observed values. Gender Table 3 below shows that more men than women have diagnosed type 2 diabetes in the Pakistani population and Fife s total population. However, a greater proportion of men in the Pakistani population have diagnosed type 2 diabetes compared to men in Fife s total population. Table 3: Proportion of Males and Females with type 2 diabetes in the Pakistani Population and Fife s Total Population Gender Pakistani Fife N % N % Male 124 63.6% 7967 54.1% Female 71 36.4% 6744 45.8% Total 195 14718 Duration of type 2 diabetes The date of diagnosis was recorded for 98.5% of the Pakistani population compared to 98.8% of Fife s total population. Table 4 below highlights that people in the Pakistani population experience a longer duration of type 2 diabetes compared to Fife s total population. Author: Chanda Bhogaita Page 23 of 90 Review Date: 27/01/11

Table 4: Duration of type 2 diabetes (years since diagnosis) in the Pakistani Population and Fife s Total Population Duration of Type 2 Pakistani Fife Diabetes N % N % < 1 year 13 6.7% 1326 9.0% 1 to 4 47 24.1% 4598 31.2% 5 to 9 62 31.8% 4885 33.2% 10 to 14 42 21.5% 2127 14.5% 15 to 19 14 7.2% 936 6.4% 20 + 14 7.2% 670 4.6% Not Recorded 3 1.5% 176 1.2% Total 195 14718 Age Table 5 below reveals that the Pakistani population has a younger age of onset for type 2 diabetes compared to Fife s total population. Table 5: Age group of people with type 2 diabetes in the Pakistani population and Fife s total population Age Group Pakistani Fife N % N % < 25 0 0.0% 17 0.1% 25 to 34 8 4.1% 120 0.8% 35 to 44 28 14.4% 656 4.5% 45 to 54 61 31.3% 1977 13.4% 55 to 64 44 22.6% 3647 24.8% 65 to 74 36 18.5% 4458 30.3% 75 to 84 17 8.7% 3115 21.2% 85 + 1 0.5% 721 4.9% Not Recorded 0 0.0% 7 0.0% Total 195 14718 Type 2 diabetes The majority of registered patients had type 2 diabetes in the Pakistani population and Fife s total population. Author: Chanda Bhogaita Page 24 of 90 Review Date: 27/01/11

Ethnicity Table 6 below, shows that the recording of ethnicity data was better in the Pakistani population compared to Fife s total population. Table 6: Recording of ethnic group in people with type 2 diabetes in the Pakistani population and Fife s total population (Type 2 Diabetes) Ethnicity Pakistani Fife N % N % Recorded 59 30.3% 3781 25.7% NR/Incorrect 136 69.7% 10937 74.3% Total 195 14718 Body Mass Index Body Mass Index (BMI) has been recorded for only 52.3% of Pakistani patients in the previous 15 months compared to 90.3% in Fife s total population. Table 7 below reveals a significantly higher proportion of obese and morbidly obese people with type 2 diabetes in the Pakistani population compared to Fife s total population. Table 7: BMI categories of people with type 2 diabetes in the Pakistani population and Fife s total population BMI 1 Pakistani Fife Range N % Range N % Underweight < 18.5 0 0.0% < 18.5 67 0.5% Healthy Weight 18.5-22.9 2 2.0% 18.5-24.9 1564 11.8% Overweight 23-24.9 12 11.8% 25 to 29.9 4146 31.2% Obese 25-34.9 65 63.7% 30 to 39.9 6031 45.4% Morbidly Obese 35 + 23 22.5% 40 + 1475 11.1% Total Recorded 102 13283 Not Recorded 93 1435 Glycaemic Control Glycaemic control (HbA1c) has been recorded for 85.1% of the Pakistani population in the previous 15 months compared to 92% in Fife s total population. Table 8 below shows a significantly poorer control of diabetes for people with type 2 diabetes in the Pakistani population compared to Fife s total population. Author: Chanda Bhogaita Page 25 of 90 Review Date: 27/01/11

Table 8: HbA1c categories of people with type 2 diabetes in the Pakistani population and Fife s total population HAb1c Pakistani Fife N % N % < 7.5 82 49.4% 9386 69.3% 7.5-9.0 53 31.9% 2694 19.9% 9.0 + 31 18.7% 1456 10.8% Total Recorded 166 13536 Not Recorded 29 1182 Mean 7.7 7.2 Cardiovascular Risk In the South Asian population diabetes is associated with an increased risk of cardiovascular disease and it is therefore important to address cardiovascular risk factors such as blood pressure (BP), cholesterol and smoking. Blood Pressure BP has been recorded for 88.2% of the Pakistani population in the previous 15 months compared to 95.6% in Fife s total population. Table 9 below suggests better control of BP (systolic BP less than or equal to 130mmHg) for people with type 2 diabetes in the Pakistani population compared to Fife s total population. Table 9: BP categories of people with type 2 diabetes in the Pakistani population and Fife s total population Blood Pressure Pakistani Fife N % N % 140 150 87.2% 10259 72.9% > 140 22 12.8% 3805 27.1% 130 109 63.4% 6101 43.4% > 130 63 36.6% 7963 56.6% Total Recorded 172 14064 Not Recorded 23 654 Mean (aged 50-60) Cholesterol Systolic 125 133 Diastolic 74 79 Author: Chanda Bhogaita Page 26 of 90 Review Date: 27/01/11

Cholesterol was recorded in 85.6% of the Pakistani population in the previous 15 months compared to 92.2% in Fife s total population. Table 10 below indicates similar levels of total cholesterol control in people with type 2 diabetes in the Pakistani population and Fife s total population. Table 10: Cholesterol categories of people with type 2 diabetes in the Pakistani population and Fife s total population Cholesterol Pakistani Fife N % N % 5mmol/l 139 83.2% 11251 82.9% > 5mmol/l 28 16.8% 2315 17.1% Total Recorded 167 13566 Not Recorded 28 1150 Mean (aged 50-60) 4.1 4.4 Smoking status Smoking status was recorded for 98.97% of the Pakistani population in the previous 15 months compared to 99.7% in Fife s total population. Table 11 below identifies lower proportions of smokers in the Pakistani populations compared to Fife s total population. Table 11: Smoking status of people with type 2 diabetes in the Pakistani population and Fife s total population Smoking Status Pakistani Fife N % N % Current 27 14.0% 2977 20.3% Ex 13 6.7% 5381 36.7% Never 153 79.3% 6305 43.0% Total Recorded 193 14663 Not Recorded 2 55 HbA1c, BP and cholesterol targets Author: Chanda Bhogaita Page 27 of 90 Review Date: 27/01/11

Table 12 below shows that people with type 2 diabetes from the Pakistani population are doing less well in reaching target levels for control of their blood glucose, blood pressure and cholesterol compared to Fife s total population. Table 12: Proportions of people with type 2 diabetes in the Pakistani population and Fife s total population reaching target levels for control of their blood glucose, blood pressure and cholesterol. Target Pakistani Fife N % N % HbA1c < 7% and Chol 5 52 26.7% 6523 44.3% HbA1c < 7% and DBP < 80 33 16.9% 5862 39.8% Chol 5 and DBP < 80 93 47.7% 8364 56.8% HbA1c < 7%, Chol 5 and DBP < 80 26 13.3% 4999 34.0% Author: Chanda Bhogaita Page 28 of 90 Review Date: 27/01/11

9.0 Consultations A number of consultations were conducted to obtain the views of relevant stakeholders. These included: Focus groups with Pakistani and Chinese patients with diabetes Focus group with interpreters working with BME patients with diabetes Questionnaires sent to diabetes healthcare professionals working in acute and primary care settings Results from previous qualitative research carried out by Diabetes UK in association with Frae Fife amongst local South Asian and Chinese populations with diabetes provided a baseline for the consultation exercises. Focus groups with Pakistani and Chinese patients with diabetes In total 35 Pakistani participants, 23 women and 12 men were recruited. From these figures, 23 participants had type 2 diabetes, 4 participants had impaired glucose tolerance, 5 participants cared for someone with diabetes and 3 participants wanted to learn more about diabetes. In total 23 Chinese participants, 13 women and 10 men were recruited. From these figures, 12 participants had type 2 diabetes, 4 participants had impaired glucose tolerance, 2 participants cared for someone with diabetes and 5 participants wanted to learn more about diabetes. Focus group discussions were based on the Diabetes UK publication, Diabetes care and you. What diabetes care you can expect. 79 The following themes emerged: Patients expectations of NHS Fife Patients views about working together with their diabetes healthcare team Patients views about what care to expect from their diabetes healthcare team Patients roles in looking after their diabetes Author: Chanda Bhogaita Page 29 of 90 Review Date: 27/01/11

Table 14: Expectations of Chinese and Pakistani patients with diabetes of NHS Fife Access to services Do you feel your race, religion or belief has affected your access to services? Quality of care What do you feel about the quality of care you receive? Chinese patients with type 2 diabetes No participants felt they were discriminated against. All participants felt they received high quality care that was safe, effective and right for them. All participants felt they were treated with dignity and respect. Pakistani patients with type 2 diabetes Some participants felt their religion affected their access to healthcare e.g. appointments arranged on Friday s or during Ramadan were not suitable. All participants felt they received high quality care that was safe, effective and right for them however; it was not always culturally sensitive. Some participants felt that they were not treated appropriately e.g. You must feel awful having to wear that black robe Is that colored man waiting outside your husband? Isn t everyone called Mohammed Does it really matter if it s not Halal Author: Chanda Bhogaita Page 30 of 90 Review Date: 27/01/11

Information and choice Have you been given any information about your treatment (risks, benefits, alternative treatments etc)? Are you aware that you have a choice to accept or refuse treatment? What do you think about privacy and confidentiality in the NHS? Have you ever asked to see your health records and/or received copies of letters about your care? The majority of patients reported to have been given information. However, some participants felt they could not understand the information provided due to terminology, language, and lack of culturally appropriate information. All participants were aware they needed to give valid consent before any physical examination or treatment. All participants reported the NHS had kept their information safe and secure. No participants had seen their health records or received copies of letters about their care. Participants were unsure about how to request personal information. The majority of patients reported to have been given information. However, some participants felt they could not understand the information provided due to terminology, language, and lack of culturally appropriate information. The majority of participants were aware they needed to give valid consent before any physical examination or treatment. However, some participants felt they did not understand the procedure for which they were giving consent. The majority of participants reported the NHS had kept their information safe and secure. However, some participants mentioned cases of mixed up records due to poor understanding of South Asian naming systems and administration errors. No participants had seen their health records or received copies of letters about their care. Participants were unsure about how to request personal information. Author: Chanda Bhogaita Page 31 of 90 Review Date: 27/01/11

Have you made any choices about your NHS care? Have you been informed about the health services available to you? All participants had made choices about their NHS care based on reliable and relevant advice from healthcare professionals. The majority of participants were aware of different health services but did not know which ones were available to them or how to access services. All participants had made choices about their NHS care based on reliable and relevant advice from healthcare professionals. The majority of participants were aware of different health services but did not know which ones were available to them or how to access services. Working together with your healthcare team Have you been involved in discussions and decisions about your healthcare, and be given information to help you with this? Have you had a say in the planning of healthcare services to the NHS? The majority of participants reported to have discussed and made decisions about their healthcare. However, the information provided to help with this was often difficult to understand due to the terminology and language used. The majority of participants had not had a say in planning healthcare services. However, some would like to give their views but were unsure how to provide information. The majority of participants reported to have discussed and made decisions about their healthcare. However, the information provided to help with this was often difficult to understand due to the terminology and language used. The majority of participant had not had a say in the planning of healthcare services. However, some would like to give their views but were unsure how to provide information. Author: Chanda Bhogaita Page 32 of 90 Review Date: 27/01/11

Complaints Have you ever made any complaints about NHS services? No participants had made any complaints about NHS services. Participants were unsure how they would make complaints but were keen to stress that they had nothing to complain about. The majority of participant had not made any complaints about NHS services. Participants were unsure how they would make complaints and if these would be properly investigated and dealt with appropriately. Working together with your diabetes healthcare team Table 15: Views of Chinese and Pakistani patients with diabetes about working together with their healthcare team Where is your diabetes care provided? Chinese patients with type 2 diabetes The majority of participants care was provided in GP surgeries. However, a few participants were seen in hospital. Pakistani patients with type 2 diabetes The majority of participants care was provided in GP surgeries. However, a few participants were seen in hospital. Have you been referred to see any specialists in a health centre or hospital? All participants reported to have seen a GP, practice nurse, pharmacist, podiatrist and retinal screener. No participants reported to have seen a dietitian. No participants reported to have seen a district nurse, midwife, health visitor All participants reported to have seen a GP, practice nurse, pharmacist, podiatrist and retinal screener. Very few participants reported to have seen a dietitian. No participants reported to have seen a district nurse, midwife, health visitor Author: Chanda Bhogaita Page 33 of 90 Review Date: 27/01/11

Do you know the roles and responsibilities of those providing your diabetes care? Planning your care with your diabetes healthcare team; are you actively involved in deciding how your diabetes will be managed? During your appointments, do you discuss your concerns and questions with members of your healthcare team? or psychologist. The majority of participants were aware of the types of the healthcare professionals involved in their diabetes care. However, there was little understanding about the roles and responsibilities of those providing their diabetes care e.g. I go to my appointment. I don t question what happens No one has told me what care I should expect The majority of participants reported to be involved in deciding how their diabetes should be managed. However, some participants reported: They don t ask me what I think I don t know the different options The majority of participants reported to discuss their concerns and questions with members of the healthcare team. or psychologist. The majority of participants were aware of the types of the healthcare professionals involved in their diabetes care. However, there was little understanding about the roles and responsibilities of those providing their diabetes care e.g. I just go to my appointment. I don t know what the specialist s job is The majority of participants reported to be involved in deciding how their diabetes should be managed. However, some participants reported: They don t ask what I think. They just tell me what to do The majority of participants reported to discuss their concerns and questions with members of the healthcare team with varying degrees of satisfaction. Diabetes related topics participants would like more information about included: Education about diabetes e.g. what is diabetes, complications (culturally tailored diabetes education Culturally tailored dietary advice e.g. traditional foods and cooking methods Author: Chanda Bhogaita Page 34 of 90 Review Date: 27/01/11