Slovak Roma Health Needs Assessment September, 2016
Lerleen Willis
Research and Development Manager,
Public Health Intelligence,
Policy Performance & Communications, Room 302, Town Hall, Pinstone Street, Sheffield S1 2HH
Tel: 0114 2057458 Confidential
1
Version History
Title Slovak Roma Health Needs Assessment
Reference
Status (Draft / Final Issued)
Version Version 22.9.16.
Date Created 1st June 2016
Approved By Supporting the Integration of New Arrivals Programme Board
Audience Clinicians in primary and secondary health care and service providers who will implement the findings.
Distribution To be overseen by the Page Hall Silver Command Group
FOI Category Confidential
Author Lerleen Willis
Owner (if different) New Arrivals Health Needs Group
Amendment History
Review date
Comments
Acknowledgements:
The team of Roma community researchers whose interviews enabled the voices of Roma patients to be heard. Members of the Roma community in Sheffield who shared their stories and experiences, enabling us to develop a better understanding of their health and wellbeing needs. GP practice staff who provided detailed data Health care practitioners and other service providers who gave time for interviews, to answer questions and provide follow-up data. The Sheffield Commissioning Support Unit for their advice and guidance.
2
Index
Page 1. Purpose 5 2. Introduction 2.1. Historical Background 2.2. The social Determinants of Health Inequalities in Slovakia 6 2.3 Housing 7 2.4 Unemployment 2.5. Education in Slovakia 8 2.6 Migration to Sheffield 9 2.7. The Health of the Roma Population in Slovakia 2.7.1. Access to Healthcare in Slovakia 10 2.7.2. Obesity and Co-Morbidities 11 2.7.3. Smoking Behaviour 12 2.7.4. Infectious Diseases 2.7.5. Genetic Disorders 13 2.8. Previous Health Needs Assessments 15 3. Methods 3.1.1. 3.1. Qualitative interviews and Group Discussions 16 3.1.1. Service Provider Interviews 3.1.2. Roma Community Interviews 3.1.3. Demographic Overview 3.2. Quantitative Data 17 3.2.1. Health Data 3.2.2. Schools’ Data 18 4. Findings 5. The Roma Population of Sheffield 5.1. A growing Population 5.2. A young Community 19 6. Measures of Roma Health Needs 20 6.1. Long-term Health Conditions 6.1.1. Obesity 6.1.2. Gender Differences in Obesity 22 6.1.3. Co-Morbidities of Obesity 23 6.1.4. Mental Health 24 6.1.5. Chronic Kidney Disease 25 6.1.6. Cancer Screening 26 6.1.7. Smoking and Respiratory Disease 27 6.1.8. Asthma 6.1.9. Substance Misuse 28 6.2. Infectious Diseases 6.2.1. Tuberculosis 29 6.2.2. Hepatitis B 30 7. Healthcare Usage 7.1. Use of Emergency Care Services 31 7.2. DNAs in Primary and Secondary Healthcare 33 7.3. Roma Patient Experiences of Healthcare 34 7.3.1. Experiences of Healthcare in Slovakia 7.3.1.1. Coercive Rationing of Good Healthcare 3
7.3.1.2. Lack of Respect towards Roma Patients and excessive Control 35 7.3.1.3. Poverty and Segregation 36 7.3.2. Healthcare Experiences in the UK 7.4. Interpretation Services 37 8. Maternal Health 38 8.1. Conception Rates 39 8.1.1.Teenage Pregnancies 40 8.2. Contraception 41 9. The Health of Children and Young People 42 9.1. Hearing Loss 43 9.2. Schools Hearing Support Services 44 9.3. Roma Pupils in Sheffield Schools – An Overview 45 9.3.1. Key Health Issues reported by Schools 9.3.1.1. Exclusion 9.3.1.2. Special Educational Needs 46 9.3.1.3. Attainment 9.3.1.4. Free School Meals 47 9.4. Learning Disabilities 9.5. Incontinence 49 9.6. Dental Health 50 10. Housing and Health 11. Interventions which improve Roma Health 51 11.1. Roma Health Mediators in Romania 11.2 An EU-driven Roma Health Mediator Programme, ROMED 53 11.3. Local Roma Health Mediator Initiatives 54 11.4. Beyond Health Mediation 55 12. Discussion 56 13. Recommendations 58 14. References 60 15. Appendices 66
4
1. Purpose
To gather information about the needs of recently-arrived Roma groups. To better understand the health needs and behaviours of this group in comparison with non-Roma patient groups so services can be designed to meet their needs in an effective and efficient manner. To promote better sharing of intelligence and collaboration between agencies and service providers. To identify interventions which require additional resources from central government and European structural and investment funding to promote Roma inclusion in light of recent migration trends and the extreme deprivation of this community. To support the development of business cases for a series of community development interventions within the communities under analysis.
2. Introduction
2.1. Historical Background
The Roma people migrated from Northern India over a thousand years ago, arriving in Europe in the early Middle Ages. The largest areas of Roma settlements were in central and eastern Europe (Warnke, 1999). When they first arrived in Europe Roma populations were largely welcomed as this was a period of labour shortage. Their transient lifestyle and traditional trades which included seasonal work such as agricultural labouring, selling low-cost items to isolated, rural communities, knife- sharpening, pot mending, basketware etc. meant that they were able to meet demands in the labour market which sedentary populations were unable to fulfil (Warnke, 1999). Roma skills were so highly prized that in societies such as Romania Roma were actually deprived of their liberty over several hundred years and forced to work for the benefit of the local population. This period of subjugation reinforced the perception of Roma as an inferior people as well as creating a deep mistrust among many Roma towards the groups which had subjugated them. An extreme example of racially motivated discrimination towards Roma is evident in the quarter of a million Roma who were exterminated during the Nazi occupation of Czechoslovakia during the Second World War (Warnke, 1999).
Roma people in Slovakia are descended from 2 main groups, the Ungrika Roma who have been settled in Slovakia for many generations. However, the Vlachika Roma are descended from Roma who migrated to Slovakia from Romania in the second half of the 19th century after being released from subjugation. They remained itinerant until the 1950s. Small numbers of Sinti also still live in Slovakia and Roma languages and dialects reflect these historical differences (ERRC, 2013). The largest Roma communities in present day Slovakia are found in the East of the 5 country around Prešov, Košice and the Banská Bystrica regions. Given the historical context mentioned above, many Roma people across the Balkans are reluctant to identify themselves as ‘Roma’, preferring instead to self-identify as ‘Slovak’ or ‘Czech’ etc. As a result, estimates of the size of the Slovak Roma population vary widely from 2% of the 5.2 million population of Slovakia (Census, 2011) to more recent estimates of up to 480,000 (8%). These population estimates may have been affected by large scale outward migration since 2004 (ERRC, 2013).
Slovakia
Fig. 1. Present Day Slovakia Source: https://commons.wikimedia.org/w/index.php?curid=89553
2.2. The Social Determinants of Health Inequalities in Slovakia
Previously itinerant Roma communities were required to make radical changes to their way of life post 1945, during the communist era, to comply with policies which aimed to assimilate them. The communist regime provided Roma with homes within mainstream society and social benefits, but also forced them to give up their migratory way of life and sell their vehicles. The requirement to settle, take up regular work, often in unskilled, low-paid jobs and to send their children to school regularly to avoid facing fines or imprisonment (Csepeli & Simon, 2004), was an attempt to forcibly integrate Roma households into Czechoslovakian society. However, since they could see the benefits of a regular income, a dramatic rise in literacy rates and life expectancy through access to universal healthcare as well as protection under the law from race hate crimes, some Roma still lament the social benefits that communism provided, as their standard of living and safety had increased significantly (Barany, 1998). Many Roma did however lose aspects of their rich linguistic and cultural heritage as well as traditional skills and trades as a consequence. Other traditional practices such as the marrying of children at age 14 were also criminalised. The result was that many Roma groups lost their traditional
6 self-reliance and entrepreneurship and consequently became more dependent on the state to meet their needs (Warnke, 1999).
2.3. Housing
The post-communist era saw the separation of Czechoslovakia into Slovakia and the Czech Republic in 1993, which brought with it the privatisation of national industries and a resurgence of the openly anti-Roma sentiments from which they had been protected during the communist era. It also led to the marginalisation and exclusion of Roma communities from many aspects of Slovakian society. Many Roma families lost the homes allocated to them during the communist era due to insufficient state protection once they lost their jobs and were unable to pay their rent, meaning they had to make build their own makeshift homes on remote settlements which often lacked basic services such as drinking water, sewerage systems, gas, electricity and paved roads with adequate bus services. Whilst the majority of Roma people live in villages and towns alongside the Slovak population, 40% live on the margins of society, on the outskirts of towns, villages or in remote, makeshift settlements with no access to utilities and often close to toxic waste dumps which endanger health (ERRC, 2013:9; Veselská, 2004). 25% of Roma households in Slovakia were reportedly overcrowded with an average of 4 people living in each room, 55% had less than 10m2 of personal space, whilst in segregated settlements 40% of Roma residents had less than 5m2 of personal space in which to live (ERRC, 2013).
More recently the movement ‘Zobud’me sa (Let’s wake up), led by Slovakian Mayors have joined with the private landowners who have acquired the land on which Roma settlements are built to firstly designate them as waste dumps so that they can be demolished, thus leaving whole communities homeless. Some of these forced evictions reportedly take place in winter, increasing the negative impact and leading to the migration of the most deprived communities (ERRC, 2005). Molnár et al. (2012) identified a number of ways in which poor quality housing impacts on health, from exposure to cold or damp, to the danger of naked flames, insects, vermin, overcrowding and social isolation. They recommended undertaking a health impact assessment of new housing schemes for Roma families in Slovakia to assess whether they improve health and wellbeing or whether by removing Roma residents from their social networks, they actually reduce wellbeing and leave people more exposed. They also recognised that in order to benefit from new homes, Roma need the income to maintain and pay for them, which requires the engagement of government (Molnár et al., 2012).
2.4. Unemployment
Even Roma citizens who have completed school or achieved vocational qualifications struggle to find paid work in Slovakia, which reduces the majority of Roma families to a state of poverty (Barany, 1998) and has increasingly led many
7
Roma to perceive education as futile. As a result, employment rates are reported as being between 90%-100% in some Roma communities (Barany, 1998, ERRC, 2013). Machlica, Zúdel and Hidas (2014) reported that relatively high Roma unemployment rates have persisted since the end of communism, especially in Eastern Slovakia where most Roma communities live, due to poor infrastructure and high contribution rates towards tax. Roma unemployment rates have been fuelled by discrimination and low skill levels, with many Roma citing family reasons for not being economically active (either in work or actively seeking work). On the other hand, up to 10% of Roma are reported to give up seeking work as they cannot see any prospects of ever getting a job in Slovakia, which compares to 1% of the Slovak population. Investment is required to address educational underachievement among Roma citizens in general, to up-skill unemployed Roma and create job opportunities for them. Researchers recognised that affirmative action is required to give Roma communities the job opportunities which they have been denied previously and from which low educational achievements now exclude them. Equally, they proposed a media campaign to address widespread discrimination against the Roma population and to promote successful Roma role models in the hope of re-educating the Slovak population (Machlica, Zúdel and Hidas, 2014).
2.5. Education in Slovakia
Reports suggest that Roma children are subject to segregated education with Slovak and Roma children either being taught in separate classrooms or in separate schools in some instances. Amnesty International has repeatedly highlighted the unsuitability, for instance, of so called ‘container schools’ which have been pre- fabricated from the same materials as metal storage containers and placed in Roma settlements. They are too warm in summer and too cold in winter and segregate children (Amnesty International, 2013; Černušáková, 2015; Brüggermann, 2011). A disproportionate number of Roma young people in Slovakia are also sent to schools for children with mild to moderate learning disabilities, despite not having a formal diagnosis of a learning disability. One partial explanation for this is that Slovakian children are subjected to a psychological test conducted in the Slovak language when they first arrive at school. As Roma communities raise their children to speak their mother tongue, Romany or Romanes, they perform poorly in the assessment and are therefore at a significant disadvantage from an early age (ERRC, 2013). Linguistic policy created in 1995 meant that the Slovak language was to be used for official transactions including trade, religious bodies, between doctors and patients, and thus the use of minority languages was marginalised, even in some private spheres (Neuwahl, 2000). The highest school achievement of Roma citizens reflects the levels of disadvantage they experience in that 31.6% of Roma in Slovakia compared with 8.7% of Slovaks did not complete lower secondary school (up to age 15) while 48% completed upper secondary school, but without achieving qualifications, compared to 24% of Slovak children. Just 1.7% of Roma completed
8 upper secondary school with the qualifications to access higher education compared to 25.9% of Slovaks (Brüggermann, 2011).
2.6. Migration to Sheffield
Slovak-Roma groups began migrating to the UK in significant numbers in 1997 when thousands of Slovak Roma migrants fled to Canada, Germany and the UK to seek asylum from their lives of discrimination, racially motivated violence and marginalisation within their home country (Barany, 1998). Shortly after Slovakia joined the European Union in 2004, Slovak Roma migration to Sheffield began in earnest (Gill & Malmgren, 2011). Roma interviewees reported having travelled to Sheffield within days of being able to do so officially. They had heard reports of Roma people being treated with dignity, finding work in Sheffield and thus being able to earn sufficient money to feed themselves and their families for the first time, which was not guaranteed in Slovakia. Migration therefore represented an opportunity to escape a life of abject poverty and to aspire to social mobility (Grill, 2012).
Although migration to the UK has largely plateaued since 2015, it has been maintained since 2004 by a number of factors: A lifting of restrictions on the number of migrants from A8 countries such as Slovakia who could enter the UK, as well as extending their access to the labour market and to welfare benefits all supported further migration from 2011. Changes to Slovakian benefit entitlements and the systematic clearing of Slovak Roma settlements have left whole communities homeless and destitute. This has driven further migration of the most deprived members of Slovak Roma communities who may have multiple needs. Slovak Roma migrants have mainly settled in areas of Sheffield with available private rental housing, which may not always be of the best quality. These areas include Tinsley, Darnall, and Page Hall. Communities have then migrated outwards into adjacent areas such as Firth Park, Grimesthorpe and Pitsmoor as they have become more settled. The ability to maintain close contact with Roma family, friends and neighbours has been shown to be crucial to Roma wellbeing and is therefore likely to influence settlement patterns in the UK (Grill, 2012).
2.7. The Health of the Roma Population in Slovakia
The life expectancy of the Roma population in Slovakia is markedly lower than that of the rest of the Slovak population. Whilst Slovak male life expectancy at birth rose from 66.78 in 1990 to 70.32 in 2005, the estimated life expectancy for Slovak Roma males in 2005 was 62 years (Ginter, Simko & Wsolova, 2009). Ginter et al. (2001) had previously estimated the life expectancy of Roma men as 55 and women as 59 years, so some improvement to managing long term conditions may be evident. Infant mortality rates among Roma in Slovakia are approximately twice that of the rest of the population and low birth weights were four times more prevalent among 9
Roma (13.2 v. 3.3 per 1000 live births in 1997). It has been suggested that low birth weight may also contribute to a number of long-term health conditions in adults (Sepkowitz, 2006).
2.7.1. Access to Healthcare in Slovakia
A system of free to access nationalised health services was created after 1945 which focussed on the eradication of communicable diseases such as TB. During this period, Slovak Roma citizens had increased access to healthcare through the workplace, GPs and hospitals. Post 1993, a system of compulsory health insurance was introduced which required workers to contribute to the cost of their healthcare, if able to do so. So, although official sources suggest that healthcare is available to all in Slovakia, access to healthcare for Roma communities is limited by poverty, marginalisation and isolation from centres of Slovak population. Whilst patients may register with any GP, those living in remote settlements may lack the transport links or finances to access health services as often as required, which impacts on the management, diagnosis and treatment of disease and long term health conditions. Lack of health insurance, lack of information about available services, discriminatory and degrading treatment and human rights abuses within healthcare systems also limited Roma patients’ access to healthcare (Földes & Covaci, 2011).
Patients in Slovakia generally have greater access to secondary care than in the UK and can self-refer to many secondary care services, effectively by-passing their GP. Emergency services are also widely available within communities as GP practices in Slovakia are often located in polyclinics which provide 24 hour emergency care. It is reported that neither health care practitioners nor patients have a clear perception of patients’ rights, which means that Roma patients do not have recourse to an advocate whenever they have a poor healthcare experience. An example of the abuse of patient rights is the coercive sterilisation of Roma women, carried out without the patients’ informed consent to forcibly limit Roma family size. This practice began during the Communist era and still continues (ERRC, 2013).
Lower educational outcomes were also significantly linked to poorer health (Jarcuska et al., 2013). Slovak Roma citizens were more likely than other Slovak citizens to report lack of money, lack of awareness of where to find healthcare services, lack of transport, lack of trust, a bad experience of healthcare, no childcare and a preference for using herbal remedies (Jarcuska et al., 2013) as reasons for not seeking health care. Current research suggests that Roma populations in Central and Eastern Europe tend to overuse emergency services whilst underusing prevention services such as immunisation. On the other hand, Roma children and women are reported to face more challenges in accessing healthcare, whilst Roma women tend to be excluded from research about Roma people’s health. It was recommended that Roma patients should be involved in the design of research about their health to ensure their needs are fully met as cultural differences can also determine how they access and use health services (Földes & Covaci, 2012). 10
2.7.2. Obesity and Co-Morbidities
There is evidence of high levels of overweight and obesity within Roma communities in Slovakia. Petrášová et al. (2014) reported that of a relatively small sample of 63 men with a mean age of 32.9 years and 117 Roma women with a mean age of 34.5 years, 26.9% of the men and 27.6% of the women were overweight. On the other hand, a larger percentage of Roma men (28.8%) were obese (having a BMI greater than 30.0 Kg/m2) than Roma women (26.5%). The researchers also identified higher levels of biomarkers of obesity (total cholesterol, triacylglycerol, LDL-cholesterol) in overweight and obese patients than in those of normal weight. High levels of leptin, a hormone which regulates feeding, were also recorded, which may be linked to greater levels of central adiposity or abdominal obesity.
Babinská et al. (2014) reported lower levels of physical activity at work for Roma men (21.4%) and Roma women (18.1%) living on settlements as opposed to 41.6% for Slovak men and 25.2% for Slovak women in a sample of 452 Roma (mean age 34.47 years) and 403 Slovaks (mean age 33.47 years). Roma populations are much less likely to be in work, so this factor may have influenced the finding. Roma women did significantly more physical activity around the home than Slovak women (82.6% v. 67.9%) due perhaps to their larger families and the expectation in many Roma families that women will clean their homes rigorously each day. However, Roma women living on settlements engaged in significantly less aerobic exercise outside of the home such as brisk walking (18.8% v. 41.7%) or sporting activities than Slovak women (5.5% v. 20.6%). Roma men were also more likely to report having engaged in dancing than Slovak men and Roma people living on settlements were more likely to report engaging in vigorous physical activity lasting at least 30 minutes on 2 or 3 occasions each week. The only reported significant difference indicated that Roma women are more likely to be physically active around the home than outside of it.
One of the related impacts of obesity in the Roma population is the higher than average rates of end-stage renal disease (ESRD) identified (Kolvek et al., 2012). The average age at which Roma patients began receiving haemodialysis treatment for ESRD in Slovakia was 52 years compared with 61.6 years for Slovak patients. ESRD was more frequently caused by complications of diabetes among Roma patients though researchers speculated that a genetic predisposition to suffer ESRD may be shared with Indian and Pakistani populations. It was also suggested that poorly controlled risk factors for diabetic nephropathy such as hypertension, diabetes mellitus and smoking may be significant contributory risk factors alongside the high incidence of low birth weight in this population group, which may predispose to chronic kidney disease and subsequently lead to ESRD (Kolvek et al., 2012:753).
Despite demonstrating a lower intake of food energy, Roma populations in Central and Eastern Europe are more prone to obesity and metabolic syndrome than their Slovak compatriots. This is compounded by being shorter in stature (Simko & 11
Ginter, 2010). Lower life expectancy among Roma populations in Slovakia has also been linked to obesity, metabolic syndrome and a potential ‘thrifty gene’ which might predispose a community used to deprivation to store fat more readily. The thrifty gene hypothesis has also been used to explain the lower birth weight of Roma infants and their shorter length at birth. The negative consequences for health are the higher levels of obesity, metabolic syndrome, with associated cardiovascular disease and diabetes mellitus.
Approximately 50% of Roma adults living on settlements in Eastern Slovakia were reported to regularly eat fruits and vegetables compared to more than 77% of their Slovak compatriots. Roma adults were also much less likely to have consumed dairy products (55.1% of Roma men compared to 81.8% of Slovak men, and 59.7% of Roma women compared to 92.5% of Slovak women) (Hijová et al., 2014). Consumption of meat and wheat-based products was similar for Roma and Slovak groups, however Roma women (69.7%) were significantly more likely to have consumed soft drinks such as cola or lemonade than non-Roma women (46.8%). Over 70% of Roma and Slovak men also regularly consumed sugary, soft drinks. Whilst the preference for bottled, sugary drinks may be driven by a lack of access to safe drinking water supplies on Roma settlements, this choice increases the risk of overweight and obesity, diabetes, dental caries and related complications (Hijová et al., 2014). Access to dental services in Slovakia are limited as only routine check- ups may be free, while treatments such as fillings generally need to be paid for, which creates the potential for poor dental health (Europe-Cities, nd).
2.7.3. Smoking Behaviour
High levels of smoking are likely to be creating significant risks to health and may be contributing to lower life expectancy. Roma men, with a smoking prevalence of 54.7%, were 3.7 times more likely to report being a smoker than Slovak men and Roma women with a smoking rate of 44.4% were 4 times more likely to smoke than Slovak women. Roma men and women were also significantly more likely to consume more than 6 cigarettes daily than their Slovak counterparts. There was no significant difference in alcohol consumption between Roma and Slovak men, whereas Roma women were less likely to report consuming alcohol than Slovak women (Kolvek et al., 2012). Hujová et al. (2011) also found that 26.4% of a sample of Roma children and adolescents in Central Slovakia aged 7-18 were smokers, compared to less than half as many (9.2%) among the sample of 131 Slovak children. The vast majority of smokers in both groups were aged 12-18.
2.7.4. Infectious Diseases
Veselíny et al. (2014) investigated the prevalence of hepatitis B and C in a range of Roma communities across Eastern Slovakia and found that the key risk factors for hepatitis B infection were male gender, older age, having a tattoo and having been to prison. 12.5% of those tested were found to be HBsAg positive and therefore had
12 hepatitis B, whereas a further 40.4% had antibodies which indicated they had suffered from the disease in the past. The prevalence of hepatitis C was relatively low at 0.7%, which reflected a low use of intravenous drug usage among Roma communities.
Tuberculosis among Slovak Roma patients is very much a hidden disease (Schaaf, 2007). So, whereas Slovakia reportedly reduced the rate of tuberculosis to 6.4 per 100,000 of population in 2013 and was on the point of eliminating the disease across the country, Roma populations in Central and Eastern European (CEE) are reported to continue to have a high risk of TB (WHO, 2013). Migliori and Centis (2002) suggested that Roma patients accounted for between 5% and 28% of the TB cases notified in the Czech Republic, Slovakia and Romania, despite their status as a minority population in these countries. Studies conducted by international agencies have concluded that TB is more prevalent among Roma communities due to extreme levels of poverty, the social and economic exclusion in which they live, exemplified by malnutrition, lack of services, poor living conditions and inadequate housing on settlements (Schaaf, 2007; Migliori and Centis, 2002).
Though TB rates have fallen consistently in Slovakia in recent decades the rate of TB fell more slowly among Roma than among Slovaks even during the 1960s when they had access to a nationalised health service (Schaaf, 2007). Migliori and Centis (2002) blamed lower treatment completion among Roma for the difficulty in controlling TB among Roma communities as this can lead to drug-resistant TB. On the other hand NGOs found that Roma patients were often unable to access diagnosis and care, frequently being asked to make inappropriate payments or being refused treatment (Schaaf, 2007). This suggests that the official rates of TB in Slovakia may not fully take account of the sub-population of Roma citizens who are often marginalised from mainstream society.
In Central and Eastern European (CEE) countries, a TB diagnosis requires a 2 month hospital stay with 4 months of follow-up which would mean long periods of separation from family and friends. However, as no ethnically disaggregated data are collected for TB cases in CEE countries, the prevalence of tuberculosis within Roma populations remains uncertain. Barriers to TB care for Roma patients remain extreme poverty, stigma, low levels of knowledge about TB, cultural barriers such as inadequate communication between provider and patient, ignorance of Roma cultural practices which may reduce the likelihood of seeking help and distance from centres of healthcare (Schaaf, 2007).
2.7.5. Genetic Disorders
A number of studies provided evidence of autosomal recessive disorders (conditions inherited from parents when 2 copies of a faulty gene are present) which caused a variety of congenital disorders in the Roma population. Autosomal recessive non-
13 syndromic1 hearing loss (NSHL) which affects the Slovak Roma population disproportionately has been linked to genetic mutations on the GJB2 gene. The 2 most frequent genetic mutations linked to NSHL in Roma populations in the East of Slovakia were W24X (23.2% of cases) and R127H (19.4% of cases) (Minárik et al., 2003). Whilst up to 50% of non-syndromic childhood hearing loss is attributed to the 35DelG mutation in most Caucasian populations, for Roma groups only 8.3% of NSHL cases were linked to this gene mutation. On the other hand, the W24X mutation is reportedly also found in Indian and Pakistani populations, indicating a probable common ancestry which may provide some explanation of the patterns of genetic disease in Roma patients (Minárik et al., 2003).
The genetic isolation of Roma populations within Eastern Slovakia who live in small, closed communities and intermarry within their own ethnic group (endogamy) has led to a higher than expected frequency of autosomal recessive disorders caused by specific gene mutations, known as a founder effect. For instance, Cimberle (2010) reported a higher prevalence of primary congenital glaucoma (PCG) in the Roma population of Slovakia, with a mean incidence of one case in 700 people compared to one in 15,000 people in the wider population. In contrast to its presentation in Slovak children, PCG manifested in a very aggressive form in Roma children and did not respond well to standard treatment once diagnosed. PCG in the Slovak Roma population was linked to the CYP1B1 mutation and was found to already be evident at birth, usually manifesting rapidly once the condition was already irreversible. Successes in early treatment were reported after the introduction of neonatal screening for PCG among Roma communities in Slovakia (Cimberle, 2010).
Other genetic disorders reported include congenital cataracts facial dysmorphism neuropaphy syndrome and congenital myasthenic syndrome in Czech Roma populations. A general genetic study of Roma populations also added galactokinase deficiency, polycystic kidney disease, hereditary motor and sensory neuropathy, limb girdle muscular dystrophy type 2C, congenital myasthenia, thrombasthenia and other disorders possibly introduced from surrounding populations such as phenylketonuria and cystic fibrosis (Safka Brozková et al. 2011). Carrier rates for some genetic disorders were reported to far exceed that of surrounding populations and to range from 5% to 20%, therefore it may be more important to focus on genetic testing for families at the highest risk of genetic disorders than to assume disorders are caused by consanguineous relationships (Kalaydjieva, Gresham & Calafell, 2001). It is also important that further research is undertaken to better understand the level of risk for genetic disorders within the Roma community in the UK so that genetic screening of newborns within the Roma community can be used to minimise the impact of disorders which are still amenable to treatment soon after birth.
1 Non-syndromic hearing loss has a genetic cause and is not associated with other health conditions or syndromes. 14
2.8. Previous Health Needs Assessments
Three previous health needs assessments or reports have been undertaken to assess the health of Slovak Roma residents in Sheffield. In 2009 Gillian Gill was the first practitioner to publish a short assessment of Slovak Roma health needs based on insights gained from her health visitor practice within the Sheffield Slovak Roma community. Using 4 succinct case studies, she illustrated a comprehensive range of health needs which emerged from poverty: poor, overcrowded housing; inconsistent access to healthcare; maternal and neonatal health. On the other hand, Lizzie Moore’s (2010) healthcare needs assessment of the Slovak Roma community in Tinsley collected data from patients to explore practitioner perceptions that Roma patients had a poor understanding of health literacy, infectious diseases, disease progression and the need to manage long-term conditions. Moore was unable to access health data to illustrate or evidence the extent of the needs which healthcare professionals had reported and therefore recommended that access to healthcare data be addressed in future investigations.
Giles Ratcliffe’s 2011 report summarised previous HNA findings and anticipated increased migration from Slovakia which might arise from the lifting of restrictions on migrants from A8 countries in May 2011. Qualitative data gathered from discussions with service providers were also reported, though no service user perspectives were represented. Ratcliffe called for GP practices to provide data on Slovak Roma patient numbers and for some aspects of Roma young people’s health to be further investigated. The need for systematic reporting of quantitative health data or a comprehensive health needs assessment for the Slovak-Roma community in Sheffield were not previously identified, though both Moore and Ratcliffe acknowledged that the need to collate evidence to support verbal reports about Roma patients’ health needs was hampered by the lack of dedicated codes to record Roma ethnicity on GP systems.
This report builds on previous assessments of Roma health needs in Sheffield by providing a more detailed overview of the health literature, an exploration of both practitioner and patient perspectives and a detailed analysis of patient health data.
3. Methods
A detailed literature review was required to create an overview of the socio-economic and political context in which Roma migrants were living prior to their migration to the UK. The extreme deprivation and marginalisation which characterised many lives has impacted on the life expectancy and health of Roma people in Slovakia and on the behaviour of those who have migrated to the UK. This overview of the social determinants of health inequalities was also required to support the interpretation and analysis of the data collected. An analysis of health studies provided insights into the health of Roma patients in Slovakia which supplements and supports the analysis and interpretation of health trends which are emerging in Sheffield.
15
3.1. Qualitative interviews and Group Discussions
Two sets of interviews were undertaken to understand the nature of perceived health needs and risks from the perspective of both service providers and Roma residents.
3.1.1. Service Provider Interviews
Group and individual interviews were undertaken with over 40 service providers including GPs, community midwives, health visitors, clinicians from secondary healthcare, housing, youth and community services and the education sector over 5 months from June to October 2015. The interviews highlighted the perceived health needs of Roma residents from the perspective of practitioners and indicated the gaps in practitioner knowledge which needed further analysis. Service provider interviews also raised a number of questions about patient health beliefs and behaviours and were therefore an important first step in the data collection process. Service providers were asked to prioritise issues for change and development in their service area, which were then used to develop the report’s recommendations.
3.1.2. Roma Community Interviews
10 interviews were undertaken in English with Roma individuals, including teaching assistants and others from their social networks. These interviews were exploratory to better understand the concerns of Roma participants. 5 interviewees were subsequently trained as community researchers and conducted interviews within their own community using mainly the Romanes language. Community researchers also assisted with developing the interview template for Roma interviews and translated the questions and consent forms into Slovak. They conducted 30 interviews in total which were subsequently translated into English orally by community researchers and transcripts typed up in English. Preliminary Roma interviewees were selected to conduct interviews if they were able to take part in the interview in English and had the potential to act as community researchers. The remaining 30 interviewees were selected because they either formed part of the researchers’ social networks or they were known to them through work. They represented a wide age range from young adults through to the over 50 age group.
3.1.3. Demographic Overview
Sheffield had a population of 563,749 in 2014 (ONS mid-year population estimate) and is one of the largest cities in the country. It is a city of contrasts with some areas classified as being among the 1% most deprived areas in the country, whilst other parts of the city are among the least deprived in the country. The majority of interviewees live in the Page Hall and surrounding areas including Firth Park and Pitsmoor whilst other were recruited from Tinsley and Darnall to ensure the largest areas of Roma settlement in Sheffield were represented. These areas fall into the Burngreave, Firth Park and Darnall wards, 3 of the most deprived wards in Sheffield with neighbourhoods which have been classified among the 1% most deprived areas
16 in the country. All have higher than average ethnic diversity with a BME population of 62% in Burngreave, 49% in Darnall and 25% in Firth Park. The Sheffield average is 19%. Firth Park is the second most deprived ward in Sheffield, followed by Burngreave, while Darnall is the 7th most deprived. In general, these wards are characterised by lower than the average Sheffield income, lower life expectancy for both men and women and higher than average levels of 16-18 year olds who are not in employment, education or training (NEET). Deprivation therefore impacts on a number of aspects of life and reduces life expectancy for many residents in these wards. Another important factor which has influenced settlement patterns is the availability of vacant rental accommodation in these 3 wards and the fact that rental costs average between £465 - £476 per calendar month compared with a city average of £613 per calendar month (SCC, 2015).
This health needs assessment was requested as part of a wider piece of work to develop a series of business cases to address development needs of the communities where Roma residents live. As such, the Roma interviews also captured responses to a series of ‘asset-based community development’ questions which enabled Roma residents to identify problems and potential solutions to issues which impact them in the communities where they live. This approach was important as evidence suggests that a process of enabling people to address the concerns they have about their own communities can ultimately lead them to proactively improve their health behaviours (Labonte and Laverack, 2001).
3.2. Quantitative Data
3.2.1. Health Data
The 6 GP practices with the largest Roma patient populations had already self- identified and were engaged in addressing Roma patient needs. They were engaged by email and asked to take part in the data collection process. The surgeries reflect the main areas where Roma migrants have settled: Clover Darnall, Tinsley Highgate, Page Hall, Upwell Street, Firth Park and Pitsmoor surgeries. One additional GP practice also provided a breakdown of Roma patient numbers but did not provide any further health data. Data from the interviews conducted were used to draw up a data request protocol for GP practices and other service areas to measure the extent of Roma residents’ health needs and service usage. The majority of the quantitative data were extracted from QOF registers (Quality and Outcomes Framework, an annual programme which allows GP surgeries to be rewarded for good practice) and other routinely recorded data sources. All data were anonymised by GP practices to protect patient confidentiality. Requests were made for both Roma and non-patient data from each GP practice so that a comparison could be made between the outcomes of Roma and non-Roma patient groups within the 6 practices. Recognising that the geographical areas analysed are characterised by high levels of deprivation Roma and non-Roma patient outcomes have, where possible, also been compared to Sheffield outcomes as a whole. 17
A key challenge from the outset was the lack of a specific ‘Roma’ ethnicity code (Read code) to identify Roma patients on GP and secondary healthcare IT systems. This meant that, apart from discrete data about hearing loss provided by Sheffield Children’s Hospital Trust, it was not possible to access routine data from secondary healthcare as they were unable to reliably identify Roma patients from their electronic records. GPs, on the other hand, were more readily able to identify their Roma patients through a combination of country of birth, use of Slovak interpreters and familiar patient names. It was therefore decided, with the agreement of GPs, to extract the majority of the routinely collected patient data, including use of secondary healthcare services from the GP practice systems. The aim of the quantitative data collection was to test and measure the extent of health needs reported by practitioners and to identify any trends which require action. Colleagues in the Sheffield Commissioning Support Unit provided guidance on the GP IT systems, however the lack of ‘Roma’ Read codes also meant that it was not possible for them to undertake the analysis centrally as no single algorithm existed to identify Roma patients from different surgeries. As a result, each individual GP practice needed to dedicate staff time to extracting the data, which in some instances led to a time-consuming process and meant that it was not possible for a single individual to have detailed oversight of the entire data extraction process.
3.2.2. Schools’ Data
Sheffield Schools Data Service provided routinely analysed data which gives an insight into school performance, learning disabilities as well as indices of poverty such as access to free school meals. In addition, schools provided information about Roma settlement patterns and numbers across Sheffield. Further data about the support needs of Roma children with hearing loss was provided by the Sheffield Service for Deaf and Hearing Impaired Children, Peripatetic Team.
4. Findings The findings from the quantitative and qualitative data have been harmonised to enable the results to be presented according to the themes which emerged from the initial exploratory interviews and were enriched by the background literature. The quantitative health data created the opportunity to assess whether service providers’ perceptions of Roma people’s health needs were supported by the available evidence. Qualitative data were also employed to provide additional insights into emerging trends and underlying behaviours.
5. The Roma Population of Sheffield
5.1. A growing Population
GP practice data currently provide the most reliable source of evidence for the size and settlement patterns of migrant populations in the UK as new arrivals are required to register their families with a local GP. Roma patient numbers on GP patient lists
18 collected in November 2015 identified 5,443 Roma residents, reflecting continued growth since the last data collection in June 2015. The numbers were boosted by the inclusion of data from one practice with a stable Roma patient population of approximately 100 which is not usually included in data analyses. Additionally, data from the Sheffield Schools Data Service identified an additional 278 Roma pupils living in wards outside of the main centres of Roma population. Taken together GP and schools’ data for November 2015 indicate a population of at least 5,721 Roma residents, therefore if we take into account parents and other adults living with these additional 278 children, it is reasonable to estimate the Sheffield Roma population at approximately 6,000 for November 2015.
Roma Population in Sheffield Population GP data – Roma patients June 2015 5,045 GP data – Roma patients Nov 2015 5,443 Schools – Total Roma pupil numbers Nov 2015 2,054 Schools – Roma pupil numbers in wards beyond the 278 main areas of Roma population Nov 2015 Estimated size of the Roma population in Sheffield, 6,000 Nov 2015 Table 1: Roma Population estimates in Sheffield, Nov. 2015
5.2. A Young Community
As has been recognised elsewhere (Gill, 2009) Roma residents in Sheffield are a very young community. Just over half of Roma patients (54%) are aged 17 years or below, compared with 30% of all patients in the non-Roma practice populations. Only 3% of Roma patients are aged 56 or over, compared with 18% of non-Roma patients from the practices analysed. Very few Roma patients were recorded in the 75+ age group, which reflects evidence of low life expectancy in Slovakia, where many Slovak Roma are likely to have died by their early 60s (Ginter, Simko & Wsolova, 2009). Due to time and resource constraints, it was not possible to perform age- standardised analyses to better understand the impact of the different age profiles of the Roma and non-Roma populations. This is a discrete piece of work which would ideally be undertaken as a follow-up to the current health needs assessment.
Age Distribution of Patients % Roma Patients % Non-Roma in 7 GP Practices Patients 0 - 17 54% 30% 18 - 36 30% 28% 37 - 55 13% 23% 56 - 74 2% 13% 75+ 1% 6% Table 2: Distribution of Roma and ‘Non-Roma’ Patients across 5 Age Groups
19
Age Distribution across 7 GP Practice Populations
60%
50% % Non-Roma 40% Patients 30% % Roma Patients 20%
10% Percentage ofpatient groups 0% 0 - 17 18 - 36 37 - 55 56 - 74 75+ Age Bands Fig. 2. Age Range of Roma and Non-Roma Patients
6. Measures of Roma Health Needs
Roma patients have presented with a number of health conditions and diseases which reflect the deprivation in which many of them have lived in Slovakia and continue to live in the UK. These include skin infections such as scabies, impetigo and cellulitis caused by the streptococcal A bacterium to which Roma patients have been found to have a low level of immunity, according to GP reports. Some GPs have changed their prescribing practice and now swab cases of impetigo among Roma and treat the condition differently after recognising that the underlying infection can be life-threatening to this group of patients. In addition, patients present with concerns for everyday childhood ailments, a baffling number of requests from schools for sick notes to explain pupil absence from school and a strong trend towards obesity among adults.
6.1. Long-term Health Conditions
6.1.1. Obesity
As the Roma population profile is much younger than that of non-Roma patients at the GP practices analysed, comparatively lower levels of all long term conditions were recorded for Roma patients. The exception was obesity where 16.4% of Roma patients over 15 on the QOF register are obese compared to 13% of non-Roma adults in the practice populations and an adult prevalence for Sheffield of 9%. This compares with obesity rates of up 28.8% for Roma men and 26.5% for Roma women living in Slovakia and suggests that the obesity rates recorded here could be an underestimation (Petrášová et al., 2014). No data were available to explore obesity rates in children under 15 through the QOF register. Equally, the weighing and measuring programme conducted through schools does not record Roma ethnicity. A further piece of work is therefore required to understand whether obesity is a cause for concern in Roma children, although GPs referred to Roma children as
20 generally ‘skinny’ but noted that young women who had borne a number of children and adults generally were more likely to be overweight or obese.
Roma Patients Non-Roma Patients 15-36 years old 47% 14% 37-55 years old 45% 39% 56-74 years old 8% 35% 75+ 0% 11% Table 3. Obesity Rates for Roma and non-Roma Patients
The majority of Adult Roma obesity diagnoses manifest at an earlier age compared to non-Roma patients and are concentrated in the 18-36 (47%) and 37-55 age groups (45%) whilst only 8% of obesity diagnoses fell into the 56-74 age category. For the non-Roma patient populations on the other hand, obesity diagnoses begin to increase in the 37-55 age group and continue right into the 75+ age group (11%), which is a largely absent age category for the Roma population.
Obesity in Roma and Non-Roma Patient Populations
50% 45% 40% 35% 30% Non-Roma 25% Patients 20% Roma Patients 15% 10% 5% 0% 18 - 36 37 - 55 56 - 74 75+
Age Bands Percentage of Patient Groups Obese are Groups Patient who of Percentage
Fig. 3. Age Distribution of Obesity Diagnoses in 6 Practice Populations
These data confirm GP perceptions that obesity is more prevalent in younger adult Roma patients, though an analysis of obesity in Roma children and young people, would provide a better indication of when problems with obesity begin, so interventions can be better targeted. Some of the health beliefs concerning obesity which GPs reported indicate the need for health education among this community. Some patients were reported to believe that it is normal for them to be obese, perhaps because it is an observed pattern in Slovakia as people age. Another belief expressed to GPs was that the abdominal fat present in central adiposity actually protects one’s internal organs, whereas in fact it puts patients at risk of a variety of long term health conditions. It appears that some Roma patients are not currently aware of the ways in which diet and physical activity influence health outcomes. 21
6.1.2. Gender Differences in Obesity
Two trends in obesity diagnoses are noteworthy. In the 18-36 age category, a larger proportion of Roma women are obese than Roma men. Roma women in this age group are also more likely to be obese than both non-Roma men and non-Roma women. On the other hand, Roma and non-Roma men are more likely to be obese than Roma and non-Roma women in both the 37-55 and 56-74 age groups, however Roma men are most likely to be obese than any other group in the 37-55 age category. This reflects obesity patterns observed among Roma men in Slovakia where they were more obese than Roma women, which may result from lower levels of physical activity, as well as unhealthy diets (Petrášová et al., 2014 and Babinská et al., 2014). For non-Roma populations, a pattern of higher male obesity continues into the 75+ age category.
Obesity Diagnoses by Gender: Roma and non-Roma Populations
60 Roma Women 50 40 Roma Men
30 Non-Roma 20 Women Non-Roma Men 10 0 18 - 36 37 - 55 56 - 74 75+
Age Categories Percentage of Patients with with Diagnosis Patients of Percentage
Fig. 4. Obesity Diagnoses by Gender among Roma and Non-Roma Patients
Obesity Rates across 6 GP Practices by Gender & Patient Group Age Groups Roma Roma Men Non-Roma Non-Roma Women Women Men 18 - 36 52% 41% 26% 14% 37 - 55 41% 51% 36% 39% 56 - 74 7% 8% 29% 35% 75+ 0 0 9% 11% Table 4. Obesity Rates among Roma and non-Roma Groups by Gender
A greater proportion of Roma men and women between ages 18-55 had an obesity diagnosis than their counterparts in the non-Roma practice population, which confirms patterns observed in Slovakia that Roma people tend to develop obesity at an earlier age and also points to the likelihood that latent side-effects of obesity will manifest as diabetes, hypertension and coronary heart disease across this growing 22 population at a much earlier age than normally observed, as reported in Slovak studies (Petrášová et al., 2014). Timely public health interventions are therefore required to prevent the reductions in quality of life and life-expectancy which could result, especially in view of the implicit healthcare costs required for managing long term health conditions.
6.1.3. Co-Morbidities of Obesity
Despite higher levels of obesity in Roma patients than in the non-Roma practice population, Roma patients are younger and therefore currently still much healthier. This is reflected in the numerically lower levels of co-morbidities (additional health problems) which result from obesity. Diabetes, hypertension and stroke were measured, however it may also be appropriate to measure coronary heart disease in future analyses. Stroke data for Roma patients have not been reported due to low numbers. Current data suggest that 1.5% of Roma patients have a diabetes diagnosis whilst 2% have a hypertension diagnosis. In contrast, 6% of the non-Roma patient population have a diagnosis of diabetes and 10% are on the hypertension register. The Sheffield prevalence for diabetes was 6.2% and for hypertension, it was 13% (PHE, 2016). The actual number of Roma patients diagnosed with these co-morbidities is still very small compared to numbers within the non-Roma patient population. The key difference in the distribution of co-morbidities is visible in the 37- 55 age group, where for Roma patients 62% of the diabetes and 67% of the current hypertension diagnoses are registered. In Slovakian studies, metabolic abnormalities were detected in younger obese patients, though metabolic syndrome was not always fully evident. Studies also identified more pronounced levels of obesity among more affluent Roma who did not live in the most deprived areas, which suggests that obesity may be a reflection of both deprivation and marginalisation within Roma communities (Simko & Ginter, 2010). Again, it should be emphasised that the numbers of diagnoses are currently very low.
The percentage of Roma patients currently appearing on QOF registers for other long-term health conditions is also very low, although it is clear from research among Roma living in Slovakia that a higher prevalence of type 2 diabetes mellitus, coronary heart disease and high cholesterol probably contribute to the lower life expectancy of this community (Sepkowitz, 2006). It is likely therefore that unless this community develops and acts on a greater awareness of links between diet, physical activity, obesity and health outcomes, the prevalence of long term conditions could increase in coming years’ time as the community ages. As Goday (2016) demonstrated in a study of ‘metabolically healthy obese individuals’, many already had some, though not all underlying symptoms of metabolic syndrome and were likely to develop metabolic syndrome in due course, which was also the case for Roma patients studied in Slovakia (Petrašová et al., 2014). The QOF register profile
23
Roma Patients on Obesity, Diabetes and Non-Roma Patients on Obesity, Diabetes and Hypertension QOF Registers Hypertension QOF Registers 80 50 45 70 40
60 35 50 30 40 25 Obesity Obesity 20 30 Diabetes Diabetes 15 Hypertension 20 Hypertension
Percentage of Patients Patients of Percentage 10
10 5 Percentage of Patients of Percentage 0 0 18 - 36 37 - 55 56 - 74 75+ 18 - 36 37 - 55 56 - 74 75+ Age Groups Age Groups
Figs.5. & 6. Roma and Non-Roma Patients on QOF Obesity, Diabetes and Hypertension Registers of the 6 practices as a whole (Fig. 7) indicates the potential risk of long term conditions which the Roma population could face in the coming years in light of the levels of obesity currently evident.
Percentage of Patients on QOF Registers Roma 18 Patients
16 Non-Roma 14 Patients 12 10 8 6
4 Percentage of Patients Patients of Percentage 2 0
QOF Registers
Fig.7. The Percentage of Roma and Non-Roma Patients on QOF Registers
6.1.4. Mental Health
GPs were concerned that a number of Roma women had been prescribed short term benzodiazepine medication for anxiety & depression in Slovakia which had the potential to lead to dependency. Patients taking this form of medication were likely to find that it actually caused rather than addressed feelings of anxiety and GPs were faced with the challenge of trying to wean patients off medication where they may not be best placed to do this. QOF data indicated that 0.8% of Roma patients (41) and 6% of non-Roma patients (2357) had a diagnosis of depression. The numbers
24 were smaller for mental health diagnoses with only 0.2% for Roma and 1.2% for non- Roma. It has been suggested that mental health problems represent a stigma for many communities including Roma, which implies that these data could represent an under-estimation of actual need. GPs also reported a sense that Roma patients had not had access to good mental health care in Slovakia. They had no reports of patients receiving talking therapies or having follow-up plans. On the other hand there appeared to be an over-use of benzodiazepine medication and hospital admissions to address mental health issues. The data suggested that only a handful of Roma and non-Roma patients had benzodiazepine dependencies.
Another important detail which emerged from clinician interviews is that Roma parents appear to have been conditioned by Slovakian doctors to expect their ‘nervous’ or lively children to be medicated with tranquilizers rather than by setting ‘appropriate boundaries’ for them. Parents were treated in Slovakia as though they lacked agency as both they and their children may have been managed through dependency-forming medications, an approach which clashes with UK culture and expectations. This approach to managing children’s behaviour has also raised child protection issues when parents have sourced medication from Slovakia and reported to clinicians in Sheffield that they are administering it to their children.
Percentage of Patients with Mental Health and Depression Diagnoses
60
50
40 Non-Roma MH 30 Non-Roma Depr Roma MH 20 Roma Depr
10 Percentage ofDiagnoses
0 0 - 17 18 - 36 37 - 55 56 - 74 75+ Patient Groups and Age Groups
Fig. 8. Patterns of Mental Health and Depression Diagnosis
6.1.5. Chronic Kidney Disease
The prevalence of chronic kidney disease (CKD) was investigated to follow up GP reports of a number of patients who presented with kidney disease at an early age, some already having had a kidney transplant. The actual number of Roma patients registered as having CKD was however very small, though they are largely focussed in a younger age group. Whilst the literature did point to higher levels of CKD among Roma in Slovakia, this was generally the outcome of poorly managed long term conditions such as diabetes and hypertension, as well as smoking behaviour (Kolvek et al., 2012:753). CKD is however more pronounced in non-Roma patient groups, 25 especially those over 75 and may reflect the prevalence of poorly managed long term conditions such as diabetes within these groups.
Percentage of Patients with Chronic Kidney Disease 70
60
50
40
30 Non-Roma 20 Roma
Percentage ofPatients 10
0 18 - 36 37 - 55 56 - 74 75+ Age Groups
Fig. 9. Distribution of Chronic Kidney Disease in Roma and Non-Roma
6.1.6. Cancer Screening
GPs were keen for Roma patients to take up cancer screening, where possible. However, it was clear that uptake of cancer screening varies greatly between different screening programmes, patient groups and GP surgeries. Breast cancer and bowel cancer screening programmes are aimed at older patients which means
Cancer Screening Rates 2014-15 Roma and Non-Roma Patients 70%
60%
50% Eligible Non-Roma 40% Screened 30% Eligible Roma screened 20%
Percentage ofPatients 10%
0% Bowel cancer screening Breast cancer screening Cervical screening (all patients aged 60-74) (women aged 50-70 ) (women aged 25-64)
Cancer Screening Programmes
Fig. 10. Cancer Screening Rates for Roma and Non-Roma Patients (2014-15) that fewer Roma patients are actually eligible for them. However, whilst approximately one third of non-Roma patients access these 2 screening programmes, of the small number of Roma patients who are eligible only 5% and 19% respectively actually accessed breast and bowel cancer screening. On the
26 other hand, the number of Roma women attending for cervical screening was in line with non-Roma participation and varied considerably by GP practice, ranging from 18% to 98%. The average take-up for Roma women was 63% across the 6 practices analysed. In contrast, the average take up of cervical screening for all eligible Non-Roma female patients across the 6 practices was 65%, with a range of 21-93%. Roma and non-Roma women’s access to cervical screening therefore shows greater variation between GP practices than within a GP practice population. The Sheffield average for accessing cancer screening was 78% for breast cancer, 74.4% for cervical cancer and 59.1% for bowel cancer (PHE, 2016). It will be important to ensure that these communities are aware of and able to access these screening programmes as they age and become eligible to enter them.
6.1.7. Smoking & Respiratory Disease
24% of Roma patients over 15 years old from the 6 GP surgeries analysed are recorded as smokers compared to 20% of non-Roma patients. This compares to a Sheffield average of 17.6% (PHE, 2015). However, given that smoking rates of 54.7% have been reported for Roma men, 44.4% for Roma women and 26.4% for Roma children in Slovakia (Kolvek et al., 2012; Hujová et al., 2011), the prevalence rate observed in QOF registers may well be an underestimate. Smoking data were unavailable for Roma children under 15 in Sheffield, whereas there were many reports of smoking among Roma children and some Roma parents asked for interventions to help their children to stop smoking.
Number of Patients recorded as Smokers Roma Non-Roma Sheffield Number 1264 7483 Percentage 24% 20% 17.6% Table 6. Smoking Rates for Non-Roma and Roma Patients
Smoky homes were identified by healthcare practitioners working with children under 5 as a risk for the respiratory health of infants and young children. Previous research indicates that many Roma patients may wish to give up smoking but need support to achieve this (Moore, 2010). Midwives and health visitors who visit Roma patients in their homes are probably most aware of smoking prevalence and may therefore provide a useful link between stop smoking services and patients.
6.1.8. Asthma
Asthma data were analysed to assess the impacts of poor quality housing and the effects of both active and passive smoking. Asthma diagnoses appear to follow similar patterns for both Roma and non-Roma patients with a somewhat higher percentage of diagnoses in the 0-17 and 37-55 age groups. It is not clear whether the asthma trends observed relate to the levels of cigarette smoke in the home, to the quality of rental homes or whether in fact they simply reflect national trends. As the numbers of Roma patients within each age group is relatively small for individual 27 surgeries, it may therefore be inappropriate to draw specific conclusions from the trends observed. The number of COPD diagnoses across the Roma patient population was too low to be reported.
Patterns of Asthma Diagnosis across 6 Practices
40 35 30 25 Roma 20 Patients 15 Non-Roma Patients 10 5 0
Percentage ofPatients withAsthma 0 - 17 18 - 36 37 - 55 56 - 74 75+ Age Groups Fig.11. Patterns of Asthma Diagnoses in Roma and Non-Roma Patients
Age Bands No. Roma Patients No. Non-Roma Patients 0 - 17 34 24 18 - 36 23 21 37 - 55 37 28 56 - 74 * 20 75+ * * Table 7. Number of Roma and Non-Roma Patients on the QOF Asthma Register. *suppressed due to insufficient data
6.1.9. Substance Misuse
The percentage of Roma patients who had been diagnosed with a drug dependency of any kind is a fraction of 1% and will not be reported due to very small numbers. Non-Roma patients have higher rates of drug dependency but the numbers are also relatively small, reflecting less than 1% of the non-Roma population. Although more than 1% of both Roma and non-Roma patients have undergone an alcohol screening test, the number who had a high score was extremely small, therefore, it was not possible to provide any specific insights into substance misuse among either the Roma or non-Roma populations.
6.2. Infectious Diseases
The available data indicated a prevalence of hepatitis B which is below the levels reported for Slovakia (Veselíny et al., 2014) and fewer than 150 cases of TB per 100,000 population, the prevalence required for Public Health England to approve a
28 systematic screening programme. The continued prevalence of these infectious diseases is a reflection of the community’s marginalised status within. Communities which lived in poor, makeshift homes in Slovakia with no access to services and were therefore unable to keep their homes warm, clean and free from infestations were more likely to suffer from tuberculosis (TB). Evidence from Slovakian studies also indicated that despite Slovakia reducing its official prevalence of TB in the run up to EU accession in 2004, Roma patients continued to report not receiving appropriate diagnosis and treatment of the condition. As a result, the prevalence of this infectious disease among the Roma community in Slovakia remained hidden (Schaaf, 2007). As a direct consequence, it is not possible to address this aspect of the community’s exclusion from healthcare in a systematic way once they reach the UK as they have migrated from a country which is officially almost free of TB and are therefore not eligible to be included in screening programmes.
Hepatitis B on the other hand is reportedly more prevalent among the least deprived Roma groups, though reportedly failure to complete treatment remains high, thus putting patients at risk of suffering potentially serious consequences of what is a treatable disease. It was not possible to measure the prevalence of more minor conditions such as scabies or impetigo, though anecdotal reports from GPs suggest that, as with other deprived groups, the prevalence of these infections reflects ongoing poverty, overcrowding and the poor state of some rental properties in the parts of Sheffield where Roma people have settled in large numbers.
6.2.1. Tuberculosis
It was not possible to access screening data for tuberculosis to enable us to calculate the prevalence of the disease across the 6 practices, as the data were not coded for ethnicity. Practices were therefore asked to provide data for all TB diagnoses among Roma and non-Roma patients, as well as the numbers vaccinated. The non-Roma population had a marginally higher rate of TB diagnoses at 1.5% of the total non-Roma population compared to the Roma patient group (1%) and a higher rate of TB vaccination (22%) compared to 19% of Roma patients. It is not clear whether this is an accurate picture of the prevalence of TB within the Roma community, as Slovakia is officially a country with low levels of the disease and therefore there is currently no screening programme for new arrivals from Slovakia. Slovak-Roma patients are therefore more likely to be diagnosed with TB once the condition is fairly well advanced. Public Health England data for 2014-15 also indicated that the 6 surgeries analysed have a higher prevalence of TB per head of population than Sheffield as a whole, though these data could not be broken down by ethnicity.
Roma patients are generally diagnosed with TB only if a member of their family or social network becomes ill and all their contacts are subsequently traced and tested, which is a time-consuming and costly process. Systematic screening of Roma patients could potentially save lives and may reduce the cost of contact screening if 29 patients are diagnosed before they start work or school. Some practices had recorded no TB cases in the last year, whereas others, primarily those which receive new arrivals, recorded TB cases in double figures. A pilot scheme to test the feasibility of systematically screening patients for TB is being rolled out to relevant GP practices imminently, though Slovak Roma patients will not be automatically included for the reasons mentioned above. Table 8 shows that TB diagnoses are relatively small for the Roma population. The second column indicates the number of patients who have received vaccinations to protect against TB.
TB Diagnoses TB Vaccinations Non-Roma numbers 597 9129 Percentage 1.5% 25% Roma numbers 49 1017 Percentage 1% 19% Table 8: Tuberculosis in Roma and Non-Roma Patient Groups 6.2.2. Hepatitis B
Hepatitis B is a viral infection which is carried in the blood and is transmitted through contact with an infected person’s blood or bodily fluid. Infants born to mothers with hepatitis B are also at risk of the disease. A more detailed analysis of hepatitis B prevalence was possible due to the locally enhanced service (LES) hepatitis B screening programme which has been in place since 2014 for Roma patients. Data were analysed for the 3 year period from 2012 to 2015, which demonstrated a hepatitis B prevalence of 5% for Roma and 3.5% for non-Roma patients. Page Hall surgery pioneered the screening of Roma patients for blood-borne diseases some years ago. As a consequence they then undertook a trial to screen new patients systematically for hepatitis B which uncovered a prevalence rate of 10% in Roma patients (Gregory et al. 2014). It was not possible to replicate this finding for any of the surgeries over this 3 year period, including Page Hall. One explanation may be that the LES started in earnest in 2014 whilst the data analysed here encompasses 2 previous years (2012-2013). Equally, GP practices currently screen patients at very different rates. It would also be important to assess the impact that access to healthcare may be having on the prevalence of the disease in Sheffield.
Population Group Hepatitis B Prevalence Total Patients 4% Roma Patients 5% Non-Roma Patients 3.5% Table 9: Hepatitis B prevalence across 6 GP Practices
7. Healthcare Usage
At the height of the Roma migration, some GP practices were reportedly registering 30 to 40 new Roma patients daily, which then dwindled to 40 to 60 per month.
30
Though Roma in-migration has plateaued in the last year or more, this remains a mobile population with Roma people continuing to arrive from and return to Slovakia or move to other parts of Sheffield or the UK throughout the year. GP perceptions were that the most vulnerable Roma patients present more frequently in the surgery than those better able to cope. They often need to book 20 minute appointments rather than the standard 10 minute appointments to give time for consultations to be interpreted into and out of Slovak.
Another issue which extends Roma patient appointments is patients’ poor knowledge of their own previous medical history. ‘They might know they had something wrong with the heart and that they’d been in hospital twice with it, but they didn’t know what was wrong with the heart’ (GP). It is clear that patients were not treated as partners in their own healthcare in Slovakia, as one Roma interviewee confirmed that GPs would never explain their health problems to them or give them prevention advice. On the other hand many Slovak Roma patients continue to take medication prescribed in Slovakia but don’t tell their GP until their medication runs out, which may trigger the need for a detailed exploration of why the medication was required and may bring to light further, non-disclosed health conditions. One GP felt that they were having to do ‘a great big catch-up for years of poor care’ for Roma patients as they often need to start from basics with detailed examinations and tests to get to the bottom of health conditions which emerge in this serendipitous manner. The need for 20 minute appointments to meet Roma patient needs is evident, though this creates pressure on clinic time.
One GP recognised that in the past new migrants from Pakistan had also presented with a similar complex of needs, however what was unique to Roma patients was the numbers arriving together, the size of families and their lack of awareness of their own health needs. Patients arrive with no medical notes and often lack an immunisation history for their children, which means that GPs and nursing staff have to start from scratch. GPs felt that they needed more staff: doctors, nurses and specialist health visitors to cope with the additional needs of this patient group as their workloads had increased considerably.
7.1. Use of Emergency Care Services
Most of the healthcare practitioners who commented on the topic, reported that Accident and Emergency (A&E) usage was greater for children than adults and for Roma than non-Roma patients. However, for the over 18 age group A&E attendance exceeded that for the under 18s for both Roma and non-Roma patient populations as a whole. The percentage difference in usage between adults and under 18s was small within each population, however an unexpected finding was that overall, Roma patients used emergency services up to 11% less frequently than their non-Roma counterparts. 26% of Roma adults and 37% of non-Roma adults (18 years and older) used A&E services, whilst 25% of Roma children and 36% of non- Roma children under 18 used A&E. The misperception that Roma patients use A&E 31
more may be driven by the tendency of Roma patients to attend A&E accompanied by a group of family and friends, as well as their requirement for interpretation services. Another possible explanatory factor is that the non-Roma population has an older profile which is likely to use emergency services more frequently, with 18% of this population falling into the over 56 age category compared to only 3% of Roma patients.
Non-Roma Non-Roma Roma pop. Roma pop. Health Service Usage pop. under 18 pop. 18+ under 18 18+ Total number of GP Practice 63922 152953 8226 12053 appointments Total number of GP Practice 2437 11149 1017 1610 DNAs Total number of A&E 4136 7941 710 653 attendances 230 695 102 104 Total no hospital DNAs Table 10. Health Service Usage Trends among Roma and Non-Roma Patients
Local analysis by public health and Sheffield CCG colleagues demonstrated that A&E usage was greater in the geographical area surrounding the Northern General Hospital where adult emergency services are located than in other parts of the city and that this higher usage is not influenced by the presence of Roma populations. (See graphics in Appendix 3). Research suggests that deprivation and distance between home and the nearest Emergency Department and the distance to the local Minor Injuries Unit are the factors which most influence usage of emergency services (Rudge et al., 2013). As Soady’s (2015) graphic illustrates (see Appendix 3), Roma patients’ usage of A&E did not impact on the way individual practice populations used A&E. Indeed, it is more likely that other factors such as deprivation, living close to the A&E department and the greater use of telephone triage to manage non-Roma patients expectations in busy practices are more likely to induce non-Roma patients to attend A&E (Huntley et al. 2014).
Roma and Non-Roma GP DNAs Roma and Non-Roma A&E Usage
14
12 Non-Roma 40 10 under 18 Non-Roma 30 under 18 8 Non-Roma 18+ Non-Roma 18+ 6 20 Roma pop. 4 under 18 Roma pop. 2 10 Roma pop. 18+ 18+ 0 Roma pop. Percentage ofPatients 0
Percentage ofPatients under 18 % GP DNAs v appointments Proportion of A&E attendances
Fig. 12. The Percentage of Patients who DNA GP Appointments Fig. 13. Proprotion of Patients who use A&E
32
7.2. DNAs in Primary and Secondary Healthcare
Clinicians across primary and secondary care reported that Roma patients frequently did not attend (DNA) their appointments. It was suggested by some clinicians that a subset of Roma patients may not be able to tell the time and therefore are not aware of the need to present at a set time though this could not be verified. Other professionals believed that deprived Roma patients who had lived on settlements may not have been used to appointment systems as it was possible for them to attend a polyclinic or hospital emergency department in Slovakia where it was not necessary to book an appointment. Given their distance from health services and the cost of travel, they were willing to wait all day for all family health needs to be dealt with before they returned home. Roma participants reported that they were either unable to read a letter written in English or their English skills were too limited to allow them to change an appointment time if it was unsuitable. Improvements in English language skills will help to address the communication problems identified, however GPs also felt that patients lack the health literacy skills to understand the importance of attending follow-up appointments and managing long term conditions. GPs also reported the need for a new Read Code for their computer systems to enable them to more readily identify patients who‘cannot read English’ so they can put specific measures in place to support them.
To enable a comparison of the GP appointment DNA data, they have been analysed as a percentage of the number of GP appointments registered for each patient group. The data confirmed that Roma patients (both under and over 18) do not attend (DNA) a larger proportion of their GP appointments than non-Roma patients.
Hospital DNAs Roma and Non-Roma Patients
800
600 Non-Roma under 18 400 Non-Roma 18+ Roma under 18 200
NumberofPatients Roma pop. 18+
0 Patient Groups
Fig. 14. The Number of Patients who DNA Hospital Appointments
These data reflect trends from 5 practices, as data were missing from one practice which did not code DNAs systematically. It also emerged that a greater proportion of the Roma patient population was also more likely to DNA their hospital appointments than non-Roma. However, the number of Roma patients who DNA hospital
33 appointments is relatively small in comparison with non-Roma patients and given the absence of data to quantify the total number of hospital appointments, it was not possible to provide a fine-grained analysis of hospital DNAs. Further analysis would be required to better understand the number of patients from each group who have attended a hospital appointment in a given year in order to better assess the proportion of hospital appointments which patients DNA. It would also be worth exploring in more detail how well Roma patients navigate the NHS, as it has been suggested that Eastern European migrants struggle to understand the UK health service and are less likely to access pharmacies or prevention services (Madden et al., 2016). Patients in Slovakia are also able to by- pass GPs and self-refer to secondary care, hence their levels of frustration with referral and waiting times for secondary care appointments. GPs also identified the need for colleagues in secondary care to have a greater awareness of the needs of Roma patients as patients with a poor grasp of English are sometimes reportedly required to make appointments independently, without the support of an interpreter and may DNA for lack of understanding of what is required of them next. One DNA in secondary care causes the patient to bounce back to primary care which means GPs have to re-refer them, causing more work for primary care and meaning that some patients who fail to negotiate the secondary care system may not receive the care which they require. Roma interviewees also provided insights into how overwhelming and frightening it was for them to move from a small, rural environment to a large city like Sheffield where everything was strange, the culture, language and geography.
7.3. Roma Patient Experiences of Healthcare
7.3.1. Experiences of Healthcare in Slovakia
Roma interviewees were asked about their experiences of healthcare both in Slovakia and in the UK. The majority of accounts of unhappiness with their healthcare experiences in Slovakia reflected their sense of powerlessness and lack of protection within a system which they experienced as abusive. The comments fell into a number of categories including the withholding or coercive rationing of good healthcare, excessive control of Roma children, segregation and lack of respect towards Roma patients within the healthcare sector.
7.3.1.1. Coercive Rationing of good Healthcare in Slovakia
Access to diagnosis and specialist treatment for severe or chronic conditions was withheld by some clinicians who claimed that they were not specialists and could only administer paracetamol. Patients reported having to wait for arbitrary lengths of time for treatment, for instance a young person was in hospital for surgery but was left waiting in pain for a week as someone else was apparently a greater priority. Poor or potentially negligent standards of diagnosis meant a long term illness was not diagnosed as cancer until 2 weeks before the patient’s death and a number of
34 parents were reportedly assured by doctors in Slovakia that their children had no hearing problems, only to have the deafness confirmed once they arrived in Sheffield. This meant that children received no treatment or intervention to enable them to learn language or make progress at school. Some informants reported that they needed to pay doctors bribes to ensure they received specialist treatment or any treatment at all. Others reported that doctors refused to give them medication for their children, which should presumably have been free, and were told instead to go and buy it themselves from the pharmacy. Thus, the most deprived and needy were often penalised and exposed to poor health outcomes by those entrusted with meeting their needs.
7.3.1.2. Lack of Respect towards Roma Patients and excessive Control
Repeated reports were made of nurses and doctors openly refusing patients treatment if they had poor personal hygiene, usually caused by the lack of a water supply at home, and demanding that patients wash before they access healthcare. This lack of respect seemed to cow patients into submission, as they consistently reported how their children were controlled by nurses in all healthcare sectors yet were unable to protect them from this abuse. If their children cried or made any noise in waiting rooms, parents reported being asked to keep them quiet or risk either waiting longer to receive care or being sent home without being seen. Some very young children who were hospitalised were reportedly shouted at by nurses to keep them quiet, with the result that they became depressed after a hospital stay.
Roma in-patients and their families and friends were also very carefully controlled within secondary healthcare settings. Consistent reports suggested that Roma in- patients were not allowed ward visits. Instead patients were locked into the wards, an obvious fire risk, and needed to be well enough to leave the ward to receive visitors in unheated corridors, which was problematic in winter. Consequently expectant Roma mothers tended not to receive visits when in hospital. Children who were hospitalised were able to see their parents only once they were well enough to leave the ward, so some may have received few during a 2 month period.
This level of pernicious control also extended to parents, as one mother reported asking the doctor for more information about her hospitalised child’s condition but was told to return the following day to receive the information, despite explaining that she lived over 40 miles away and was not able to make the journey again so soon. This was yet another means of withholding good care and maintaining Roma patients in a subordinate position. Another informant confirmed that doctors never provided health education so they did not explain the condition which a patient had and failed to offer advice about how to avoid suffering from it again in future. If a generalised culture of keeping Roma patients in ignorance existed, as these accounts seem to suggest, it may explain Sheffield GP reports that Roma patients lack health literacy and are ill-informed about their own medical history.
35
7.3.1.3. Poverty and Segregation
Poverty also limited access to healthcare as a number of people reported that even the poorest in society had to pay for their medication and therefore some could not afford to get treatment and their conditions worsened rapidly. On the other hand, migrants who returned to Slovakia to have a baby reported being treated with a certain degree of deference in secondary care due to their new clothes, which were commented upon, and their clean, orderly appearance, whilst other Roma women were rejected as dirty and insulted openly. Segregated wards continue to be reported, especially within maternity care, where Roma and Slovak patients are treated separately and Roma patients are not allowed access to hospital dining rooms to eat with other patients or the use of metal cutlery.
People who related good experiences of healthcare in Slovakia often indicated that their GP was fair, didn’t discriminate or was from overseas, so didn’t have the same attitudes as Slovaks. Others suggested that they were treated well because they were well dressed, clean and had a positive attitude. The greater flexibility to see a GP or hospital doctor without a prior appointment was highlighted by a few who had experienced long waits in the UK as one reason why the Slovak system was better.
7.3.2. Healthcare Experiences in the UK
The many positive assessments of the healthcare system in Sheffield should be read in light of reports of a widespread culture of abuse towards Roma patients in Slovakian healthcare systems. The most frequent comments by Roma interviewees highlighted the respectful way in which they felt they were treated and spoken to by doctors and nurses in Sheffield. They felt that doctors cared about their health outcomes and were persistent in following them up and making sure they got better. One person recognised that someone of their age living in Slovakia would already have died without the level of care they were receiving. Parents were generally reassured that if there was something serious wrong with them or their children, the GP would refer them to a specialist. Parents acknowledged that far from being verbally abused, their children are welcomed in UK healthcare settings. Toys are provided for them and others do not appear to mind if they play and are vocal in public. Access to free medication for children and those in need, was also highlighted as an important benefit, given that extreme poverty in Slovakia meant that some died at an early age for lack of the means to buy medication.
Aspects of the healthcare system in Sheffield which interviewees said they would like to see change, reflected personal anxiety about acute conditions and the lack of open access to GPs and specialists. Long waits of 1, 2 or even 3 weeks to see a GP or even longer to see a consultant in secondary care were commented on as many were able to access these services immediately in Slovakia. However, it is also clear that for many Roma patients under the counter payments were required before they received treatment in Slovakia. Parents were anxious about young babies and
36 toddlers, especially when the child had a fever. They were incredulous at being offered an appointment for their child in 2 or 3 weeks’. Since, child mortality rates on Roma settlements are at least twice that of the Slovak population, parents understandably have a lower threshold of tolerance for fevers and sudden changes in health among infants which in Slovakia could have led to their untimely death. Other preferences people expressed was for access to Roma rather than Slovak interpreters as they trusted Roma interpreters to translate what they had said faithfully, to not abuse them (which happened in isolated cases at the hands of Slovak interpreters) and felt that Roma interpreters could communicate better with Roma people who do not all speak Slovak. On the other hand communicating with receptionists and doctors in A&E was highlighted as an issue as interpreters were not available to help with this. Where GP surgeries had a drop in clinic for Roma patients with interpreters on hand, Roma interviewees saw this as the best alternative to A&E as GPs knew them and patients could get access to care at short notice.
The nature of Roma patients’ use and assessment of healthcare in Sheffield is likely to have been influenced by their experience of healthcare in Slovakia, which in turn would have been influenced by their proximity to healthcare services, the presence or absence of a regular source of income and essential services such as running water, gas and electricity to enable them to keep themselves clean, presentable and to project an acceptable persona. Extreme poverty and exclusion was therefore a deciding factor in how or whether Roma accessed healthcare services in Slovakia and it is likely that poverty continues to have an impact in the UK.
7.4. Interpretation Services
Sheffield CCG initially funded specialist provision, often referred to as Slovak clinics to support GP practices with large numbers of newly arrived Roma patients. The nurse-led clinics enabled Roma patients to register with the help of an interpreter, to have health checks such as hepatitis screening for their entire families, their health histories taken and initial vaccinations completed during one session. Due to linguistic barriers Roma patients’ health needs cannot generally be managed over the phone and generally need face to face management with the help of an interpreter. It was therefore important to understand the extent to which Roma patients currently require interpretation services as interpreting provides a crucial bridge to accessing good health care.
GPs were asked to report the number of patient appointments at which an interpreter was recorded, however, it became clear that GP practices were not yet recording the use of interpretation services in a sufficiently systematic manner for this analysis to accurately reflect the usage of interpreters observed. GP reports indicated that over 90% of interactions with Roma patients still required the presence of an interpreter or the use of telephone interpreting. Clinicians also reported that Romanes-speaking interpreters are very rare while the Slovak language interpretation available does not 37 always meet the needs of the Romanes-speaking population. Slovak is the language of the education system in Slovakia, however many Roma people do not progress beyond primary school and thus may not achieve a high level of Slovak competence, despite growing up in the country. Equally, Roma families speak Romanes at home, so children born in the UK may only speak Romanes during their pre-school years. Clinicians highlighted the challenge of communicating directly with Roma children whenever safeguarding issues arose as Slovak-speaking interpreters could only communicate through the parents and not directly with the children. Health visitors also reported increasing numbers of young mothers who have arrived recently from Slovakia who do not speak Slovak and rely on their mothers to translate the words of the Slovak interpreter.
Despite the lack of numerical data from primary care, some interpretation data were available from secondary care which also suggested that Roma access to mental health and social care services may have increased since 2009. Requests for Slovak interpreters to the Sheffield Health and Social Care Trust increased from 27 in 2009-10 to 215 in 2014-15. Slovak was also the most requested language for interpreters for the 5 years from 2010-11 to 2014-15 with 4,018 bookings recorded by Sheffield Teaching Hospitals across a range of secondary care services between April 2015 and March 2016. This may be an underestimation as it is not clear that bookings for all care groups and directorates have been included. It was however evident that interpretation services play an important role in enabling Roma and some non-Roma patient groups to access healthcare services. However, for Roma patients, it would be beneficial to develop Romanes and Slovak speaking interpreters, perhaps from within the Roma community to ensure a greater level of access to health services for all and to ensure that safeguarding professionals can communicate more effectively with Roma children. A follow-up analysis is required to better understand the use of interpreting services in primary care, however, participating GP practices need to agree a set of Read codes to be employed for recording the use of an interpreter and all staff who interact with patients will need training to ensure that codes are used systematically to allow an accurate assessment of usage.
8. Maternal Health
Midwives reported that maternal health was generally good with few delivery problems. They were concerned however, that Roma women did not generally access antenatal care but presented for delivery when the baby was due, which may reflect the pattern they had followed in Slovakia. Many women also continue to return to Slovakia to deliver their babies. Clinicians and Roma women suggested that women wanted support from their mothers and aunts who still live in Slovakia or they do not speak English and fear being isolated on UK maternity wards. Other concerns such as the greater ease of obtaining identity documents for a new baby in Slovakia were also expressed by Roma women. Clinicians also reported that some
38 women were concerned that they would be charged for in-patient treatment within the NHS.
Community midwives recognised the need to encourage Roma women to attend antenatal care, to have routine scans and to have tests for abnormalities or gestational diabetes, if they are prone to this condition. They therefore reported spending time reminding women to attend appointments, appealing to the community for information when a patient moved house without providing a forwarding address or returned to Slovakia without informing their GP. More importantly, midwives and specialist health visitor teams who work successfully with this community do so by building relationships of trust and sometimes by learning treatment-related phrases in Slovak which improved communication with women and led to greater trust. Midwives and health visitors also reported that Roma women and girls have higher rates of breastfeeding compared to non-Roma women in the GP practices they served, though some infants were reportedly breastfed for extended periods of time which could ultimately lead to vitamin D and calcium deficiencies.
8.1. Conception Rates
Roma traditions prepare young people for marriage from puberty and traditionally young couples begin to produce offspring once they are ‘promised’ to each other or betrothed. As a result, teenage pregnancies i girls under 17 may have been more prevalent in some Roma groups in Slovakia than within the UK, where efforts have been made to significantly reduce the teenage pregnancy rate. The timing of reproductive decisions has been linked to life expectancy, available income and the availability of support to raise children (Wilson and Daly, 1997; Geronimus, 2003). For deprived communities with lower than average life expectancy such as Roma communities in Slovakia, it may be more adaptive for young women to raise children when they are younger and at the peak of their health given that Roma citizens in Slovakia tend to be diagnosed with long term conditions at an early age (Petrášová et al., 2014). Roma women have often raised very large families in Slovakia, largely because they had limited access to contraception, which clinicians who have visited Slovakia reported to be prohibitively expensive. It has already been explained that Roma residents are a young population and therefore a larger proportion of Roma women over 18 are likely to be of child-bearing age than is the case for non-Roma women. This is also evident from the nature of access to contraception detailed in section 8.2. below, where 79% of Roma women accessing contraception are between the ages of 18-36 which also suggests that this is the age-group which is most likely to be bearing children. As many Roma women continue to return to Slovakia to give birth, it was not possible to analyse Roma birth rates as many of the babies of Slovak-Roma migrants continue to be born in Slovakia. 141 Roma conceptions in total were recorded compared to 602 non-Roma conceptions in the 6 GP practices under 39 analysis. This translated into a crude rate of 26 conceptions per 1000 population for Roma patients and 16 conceptions per 1000 population for non-Roma patients. Roma residents are a younger population which may explain the higher conception rate.
Number of Conceptions 2014-15 across 6 GP Practices Crude Rate 17 and under 18+ Total Conceptions per 1,000 Roma 21 120 141 26 Non-Roma 11 602 613 16 Table 11. Conceptions across 6 GP Practices in 2014-15
8.1.1. Teenage Pregnancies
Sheffield schools have reported a recent rise in the number of teenage pregnancies among girls under 17 with 253 teenage conceptions in 2014 (PHE, 2015). The data from these 6 practices indicates that while 21 of the 32 conceptions reported among the under 17s were among Roma girls, this represented 8% of the total of 253 teenage pregnancies for Sheffield as a whole in 2014 (PHE, 2015). These data suggest that pregnancies among Roma girls under 18 form a fraction of the total teenage pregnancies for Sheffield as a whole. On the other hand, trends reported by healthcare and public health practitioners indicate that a larger percentage of Roma girls under 18 are accessing contraception than non-Roma girls at the 6 practices under analysis. When analysed by practice, the trend was for higher Roma teenage pregnancies in geographical areas where the most recent arrivals have settled. This may reflect evidence which suggests that teenage pregnancy is higher in deprived communities (Arai, 2003). Length of stay in the UK may impact on the teenage pregnancy rate among Roma young women in future years. Teenage pregnancies among non-Roma girls were higher at surgeries with lower levels of Roma teenage pregnancies.
Number of Conceptions for Roma and Non-Roma Patients 700
600
500
400 Roma Non-Roma 300
200 NumberofConceptions 100
0 18+ 17 and under
Fig. 15. The Number of Conceptions for Roma and Non-Roma Women in 6 Practices
40
Interviews with Roma community members indicated that some parents are now recognising that in contrast to Slovakia, their daughters have an opportunity to do well at school and get a relatively well-paid job in the UK. Some Roma parents are therefore encouraging their children to prioritise education over starting a family early and recognise the importance of avoiding teenage pregnancies to achieve this. Equally, there are reports of parents consciously limiting the size of their families to enable them to better meet the needs of 2 or 3 children rather than having more children.
8.2. Contraception
Although research suggests that Roma women in Central and Eastern Europe are less likely to use conventional methods of contraception than non-Roma women (Nikolic and Djikanovic, 2014), Roma women in Sheffield had a higher take-up of contraceptives at 15% compared to 13% for non-Roma female patients at the 6 surgeries analysed. This confirms healthcare professionals’ perceptions that Roma women are keen to use contraceptives, often requesting long-term contraception from midwives and health visitors shortly after giving birth. Some young women have even requested sterilisation, which may have been the only method of contraception accessible to them in Slovakia. 88% of the Roma women on the contraceptive register were in the age band 18-36, with 7% falling into the 0-17 age band. In comparison, for non-Roma women patients 4% of 0-17 year olds, 68% of 18-36 year olds and 29% of 37-55 year olds were on the contraceptive register. This also confirms reports that some younger Roma women are seeking contraception to avoid pregnancy during early teenage years. Again, it should be stressed that the numbers of Roma women on the QOF contraceptive register are still relatively small at 454, compared to 2472 for the non-Roma population.
Distribution of Roma and Non-Roma Patients accessing Contraception by Percentage 90 80 70 60 Non-Roma 50 40 Roma 30 20
Percentage ofPatients 10 0 0 - 17 18 - 36 37 - 55 Age Categories Fig. 16. Percentage of Roma and Non-Roma Patients on the Contraceptive Register
41
9. The Health of Children and Young People
A number of specific health issues have been raised for Roma children which include a small number of children with life-threatening illnesses being presented very late or not surviving as the signs of serious ill health were not spotted early enough. GPs have identified the need for health education for their Roma patients to address such issues, preferably based within their surgeries. GPs reported a good take up of immunisations since immunisation was enforced through the benefit system in Slovakia. Safe sleeping is a concern with a small number of sudden infant death syndrome (SIDS) cases reported in the Roma community. Infants can be at risk due to sleeping on a sofa, co-sleeping with older siblings and swaddling infants in a swaddling blanket also known as a ‘perinka’ or a ‘pernica’ which can cause them to overheat in already warm homes. Consistent advice across all service areas is required to ensure that this embedded cultural practice of swaddling is adapted safely to a new cultural environment. Other factors which have contributed to these infant deaths include a lack of fluency in English or a lack of awareness of how to negotiate the emergency services by telephone. Overcrowded homes meant that physiotherapists were unable to install equipment to maintain a good posture during sleep for children with physical disabilities as space is often limited. This equipment is therefore provided at school but children do not get the full benefit of it. Smoky homes are another important risk to infant and child health. Practitioners are therefore working to promote smoke free homes within this community.
Clinicians reported concerns about parents who request medication such as diazepam for a ‘nervous child’ who bites their nails and is restless. There is some indication that Roma were perceived in Slovakia as an underclass who were kept quiet with medication, so that the construction of the ‘nervous Roma child’ pseudo- syndrome seems to have been born of the perception of how a Roma child should behave in Slovak society and was treated with medication such as diazepam. It appears that parents have been conditioned to see aspects of their children’s behaviour as a problem which can be cured by medication whereas clinicians in the UK often perceive these problems as behavioural and social issues which require parents to set boundaries. After a lifetime of the Roma community being treated as if they lack agency and simply being over-medicated to keep behaviours and anxieties under control, it is a challenge for parents to now begin changing their behaviours, though some have asked for learning opportunities to both identify common childhood health conditions as well as to improve their parenting skills.
Health visitors felt that whilst many Roma children reach their physical milestones and have very good social skills, they may lag behind on problem-solving and comprehension milestones as it was reported that many Roma families do not provide their children with toys. Toys encourage turn-taking, problem-solving and the development of cognitive function, instead Roma infants are reportedly encouraged to learn through socialisation. As a result, significant gaps are evident at the 2 year assessment between Roma children and the general population which 42 means that many Roma children may not be school-ready at age 5. However, an increasing number of Roma parents are enrolling their toddlers into pre-school education which enables them to develop the skills needed to make a good start at school at age 5.
9.1. Hearing Loss
Slovakia introduced universal hearing screening for newborns in 2006 (Jakubíková et al. 2009). However there are still many reports of Roma children presenting in significant numbers at school in Sheffield with previously undiagnosed sensory neural hearing loss (SNHL) which is bilateral and therefore affects both ears. The audiology department of the Sheffield Children’s hospital (SCH) has seen a steady increase in children referred who have a consistent pattern of moderate to severe hearing loss in both ears which has a genetic cause and is likely to result from marriage over many generations within small, closed Roma communities (endogamy). SCH data suggests that the prevalence of bilateral SNHL and mixed hearing loss within the general Sheffield population is 1.21 per 1,000 births. Based on the Slovak Roma cases seen so far, the prevalence of this form of hearing loss within the Roma community in Sheffield has been estimated at 25.2 per 1,000 births, which is approximately 20 times greater than for the general population. One third of the current caseload of 280 children at the SCH receiving ongoing care for hearing loss is made up of Roma children. Children diagnosed with this pattern of bilateral hearing loss are fitted with 2 hearing aids which require monitoring, renewal, upgrading and replacement as children grow.
New Fittings for Roma and Non-Roma Children at SCH 250 200 150 Slovakian 100 Non slovak 50 0 2008 2009 2010 2011 2012 2013 2014 2015
Fig.17. New Hearing Aid Fittings for Roma and Non-Roma Children (2008-2015)
Children with profound hearing loss are eligible for referral to Nottingham for a cochlea implant if they are diagnosed before they reach 7 years old. After this latent period, they are less likely to benefit from the treatment and are supported to communicate through sign language. Complications of late diagnosis for children with bilateral SNHL is that secondary school age children may not benefit fully from hearing aids as they may no longer have the brain plasticity to associate sound with meaning. As indicated in the chart above (Fig. 17.), the number of Roma children 43 diagnosed with hearing loss has increased incrementally since 2008, due presumably both to proactive screening as well as to new arrivals with existing hearing loss.
Most hearing loss in babies born in the UK is now detected by genetic screening of newborns in the first week of life, whereas this does not appear to be the case for many Roma babies born in Slovakia. However some Roma parents have reported raising concerns about their children’s hearing whilst in Slovakia and clinicians failing or refusing to diagnose hearing loss, so problems were only addressed once they arrived in the UK. Health visitors reported that Roma babies born in Sheffield with abnormal screening results may not be followed-up by parents until the child fails to reach the developmental milestone of babbling. At this point, the health visitor usually refers the child for follow-up. The majority of cases of hearing loss among Slovak-Roma children who have migrated to the UK are diagnosed through school referrals to SCH. Currently, the audiology department of the Children’s hospital undertakes routine screening at the start of the school year and also responds to teacher concerns about individual pupils.
9.2. Schools Hearing Support Services
The Sheffield Service for Deaf and Hearing Impaired Children, Peripatetic Team provides support in mainstream classrooms and specialist units to children who have hearing loss. The service is currently supporting many Roma children who have reached school age with previously undiagnosed or untreated hearing loss which has prevented them from developing verbal language. The team also delivers training to enable teachers to respond to the needs of children with little or no verbal language. They produce resources to share with schools and teach children basic communication skills which may be limited to single words accompanied by images. Children of secondary school age with hearing loss are provided with specialist equipment (a radio aid) to amplify the teacher’s voice in a large classroom situation. Roma children now form 17% of the caseload for the school’s service to deaf and hearing impaired children, an increase of 6% between 2013/14 and 2014/15. Speech therapists from the Ryegate Children’s Centre (Sheffield Children’s NHT Foundation Trust) also provide intensive therapy to enable children to develop verbal language. It is evident that Roma children with hearing loss may be at a significant social and economic disadvantage in future, as practitioners report that parents tend to be very protective of them and keep them at home, which limits their experience of the outside world. Clinicians also reported that older children with hearing loss who have remained without intellectual stimulus into older age are at risk of depression and hopelessness. Some consideration may need to be given to supporting the development of children in this category beyond formal education and into adulthood. No data were available for adults with hearing loss, however it is possible that there will be a significant number given the prevalence of SNHL within this population but it is not clear whether they have migrated to the UK.
44
Children with Hearing Loss All Roma Percentage of Roma children receiving Support in Schools Children Children receiving support 2013-2014 727 82 11% 2014-2015 697 117 17% Table 12. Number of Children with Hearing Loss Receiving in-school Support
9.3. Roma Pupils in Sheffield Schools - an Overview
As with other service areas, schools have reported a significant increase in Roma registrations in the last 4 to 5 years. Due to the systematic manner in which schools record ethnicity information, schools data provide a reliable indication of the number of school-age Roma children and young people resident in Sheffield. This is therefore a useful, additional source of information with which to estimate the Roma population of Sheffield. The schools sector has also achieved specific monitoring codes for Roma ethnicity at a national level, following a Department for Education ethnic monitoring consultation in 2014. As a result, Roma children are no longer required to use the problematic term ‘White Gypsy/Roma’ to describe their ethnicity2, but can now self-ascribe their ethnicity as ‘Roma’, thus providing greater opportunity for accuracy in monitoring Roma pupils’ presence and progress in school. The number of Roma children on Sheffield school rolls as of September 2015 was 2,368, which represents approximately 3% of the total school population.
9.3.1. Key Health Issues reported by Schools
Roma children continue to arrive from Slovakia throughout the school year, though currently in reduced numbers compared to previous years. CYPF learning and inclusion services adopt a strategic approach to the integration and attainment of Roma pupils which has included developing Roma teaching assistants to support children in class and provide effective home-school liaison through the strategic overstaffing programme based at Hinde House school, Secondary Phase and Owler Brook Primary school. This may prove to be a useful model for the health sector to emulate in developing more Romanes and Slovak speaking workers for both primary and secondary care. In Slovakia, Roma children may only have attended school for half days and some are initially anxious about being away from home all day, which is required by UK schools.
9.3.1.1. School Exclusion
Some Roma children face discrimination, name-calling, stereotyping and racially motivated abuse in the school yard which may in part explain the levels of playground fighting and the consequent high exclusion rate reported for Roma boys. Craig (2011) reported that Roma young people may perceive themselves to be adults from age 13 onwards and may therefore expect to be treated as such, which may cause tensions in school. Roma boys are overrepresented in the exclusion
2 The term ‘gypsy’ is an insult to most Roma people. 45
statistics and inclusion centre where Roma children make up approximately 25% of the cohort, whilst only forming 3% of the school population as a whole. Discrimination, abuse and combative relationships present a cause for concern, not simply for children’s progress and therefore their future financial health, but also for their emotional and physical health as exclusion from education can be a determinant of health inequalities. By June 2015 the equivalent of 17.3% of Roma children on the secondary school roll had been excluded compared to an exclusion rate of 4.8% for pupils in the general secondary school population.
9.3.1.2. Special Educational Needs
Roma children currently represent 26.1% of pupils in special educational provision, which also includes the number of Roma children with physical and learning disabilities who are being educated in mainstream schools. Hearing loss is one health issue which has a major impact on the ability of young people to develop language, interact with others and make progress with their education. In June 2015, 23.6% of primary and 35.7% of secondary Roma pupils were registered as having special educational needs, which are both higher than the percentage for the general school population. Since any child who enters school with a limited command of English may initially be categorised as having a moderate learning difficulty, it is likely that the number of Roma pupils with long-term special educational needs is much lower. Whilst Roma children may have specific needs, local authorities in the UK have, where possible, ensured that children are integrated into mainstream provision to avoid excluding them (Craig, 2011).
Roma children All children Percentage difference Hearing impairment 51 2.75 349 0.5% 2.2 Moderate learning difficulty 207 10.8% 2,595 3.7% 7.1 Social and emotional health 106 4.2% 1,832 2.6% 1.6 Speech, language & 73 2.8% 2,865 4.1% -1.3 communications needs Severe learning difficulty 15 0.8% 320 0.5% 0.3 Specific learning difficulty 12 1.3% 1,704 2.5% -1.2 All SEN categories 532 25.5% 11,791 17.0% 8.5 Total children 2,072 69541 Table 13. Roma Pupils in Sheffield Schools with a Learning Disability, June 2015
9.3.1.3. Attainment
The progress of Roma children at key stage 2 has improved steadily over the years, with primary age children making the most progress, though there are still large gaps between the attainment of Roma children and their peers. Teachers reported that Roma families still return to Slovakia for long periods of time, which may impact on children’s educational progress (Craig, 2011). The educational poverty which results
46 from not achieving qualifications limits cultural and economic participation in society as access to the job market would be restricted to less well-paid, uncomplicated roles (Brüggemann, 2011). These same factors can also perpetuate health inequalities as limited command of English and poor health literacy may restrict healthy life chances and access to healthcare. As a result, educational attainment is a concern for the future health of this population.
9.3.1.4. Free School Meals
Recent changes in legislation have led to a sharp decrease in the number of Roma children who are eligible for free school meals. In 2013, the school census showed that 61.6% of Roma young people were able to claim free school meals, however, this number fell to just 21.8% in 2015 as a result of national changes which mean that the children of families who are eligible for working tax credits will no longer receive free school meals. Important impacts of this change in legislation are that young people from low income families may no longer have access to a substantial meal during the school day which could affect their concentration and readiness to learn. The most deprived families, though able to claim working tax credits, may continue to earn low wages and therefore not be able to provide their children with a nutritious lunch. Schools will eventually also lose access to the pupil premium, an additional payment for each child who is eligible for and claims free school meals. The pupil premium payment of £1,320 for each eligible primary school pupil and £935 for secondary age pupils, is payable to ‘publicly funded schools in England to raise the attainment of disadvantaged pupils and close the gap between them and their peers’ for 6 years from the date of first claiming free school meals. The pupil premium enables schools to meet the additional costs of improving the attainment of more disadvantaged young people, so it represents an important investment in a child’s overall health and wellbeing.
9.4. Learning Disabilities
The QOF learning disabilities register indicates that currently 0.5% of Roma and 0.9% of non-Roma patients from the 6 practices analysed have a recognised learning disability. Again, these are small numbers, with 28 Roma and 325 non- Roma diagnoses. It is evident from fig. 19 that although there is little difference in the overall proportion of Roma and non-Roma patients with learning disabilities, the distribution of learning disabilities is quite different since 53% of Roma patients are 17 years and younger. The under 18 group also had 50% of learning disability diagnoses, so learning disabilities appear to be fairly evenly distributed between under and over 18s in the Roma population. On the other hand, 32% of the non- Roma population are under 18 years old but they have just 17% of learning disability diagnoses. Healthcare professionals in secondary healthcare reported an increase in referrals in recent years from Roma families, though no specific data were provided. Children were reported to present with physical, neural and behavioural 47 problems, however many children are not returned for follow-up treatment so health care professionals were unable to specify the full extent of need within the Roma community. It is therefore not currently possible to fully understand the prevalence of learning disabilities within the Roma community. Healthcare professionals in secondary healthcare reported seeing many Roma children with longstanding, previously undiagnosed, physical and neural conditions which have deteriorated significantly due to a lack of treatment in Slovakia. Healthcare professionals from the Children’s Centre at Sheffield Children’s Hospital NHS FT provide ongoing physiotherapy and speech therapy to Roma children with physical and learning disabilities, including those with hearing loss. For children with a delayed diagnosis, interventions are usually more intensive. In Slovakia, Roma children were overrepresented in special schools, whether or not they had a learning disability. Reports from health professionals who work with Roma families suggest that many children with disabilities were hidden from the system in Slovakia and some were never seen by doctors. This may have been a preventative measure on the part of parents to ensure their children were not placed into residential care in Slovakia, away from the family.
Distribution of Learning Disability Diagnoses within Patient Groups
60
50 40
30 Non-Roma 20 Roma 10
0 Percentage Patients of 0 - 17 18 - 36 37 - 55 56 - 74 75+ Age Categories
Fig. 18. Distribution of Roma and Non-Roma Patients with a Learning Disability
Clinicians reported that the parents of some Roma children with disabilities also had disabilities but generally remain in the background and may not interact directly with service providers. Instead, the grandparents, aunts or uncles who do not have disabilities often act on their behalf and take children to medical appointments or deal with schools. As a result, healthcare professionals often raised this as a safeguarding concern because they are uncertain who is responsible for a child. The practice of extended family members and friends providing childcare appears to be widespread within the Roma community and many clinicians have expressed concern and lack of understanding of how care is organised for some young children. It is therefore important for clinicians and other professionals to develop a better understanding of the role which extended families play in childrearing practices within Roma communities and also to communicate expectations to their 48 carers about safeguarding for vulnerable children. One Roma interviewee with disabilities who also has children with physical disabilities related the important role that a sibling and her parents played in helping her to meet her children’s needs.
9.5. Incontinence
Whilst the numbers of Roma patients with an incontinence diagnosis is relatively small, with 73 cases compared to 1463 non-Roma diagnoses, the pattern of diagnoses is markedly different in the 2 populations. In the non-Roma population 89% of incontinence diagnoses are in the over 18 population whilst in the Roma group, 59% of the diagnoses fall into the under 18 category. Roma young people are therefore more likely to have a diagnosis of incontinence than non-Roma. It was not possible to establish how the incontinence diagnoses were made. Incontinence was investigated in response to recent, anecdotal reports of incontinence cases which have manifested among Roma children in schools. The health data did not demonstrate a clear link to learning, emotional or physical disability, though further investigation may be required. In some instances, when children have presented with incontinence this has had a negative impact on their education. Clinicians and schools called for increased multi-agency working to manage these and other challenging issues.
Roma and Non-Roma Patients with a Diagnosis of Learning Disabilities Incontinence Under 18 18+ Under 18 18+ Non -Roma 17% 83% 11% 89% Roma 50% 50% 59% 41% Table 14. Distribution of Learning Disabilities and Incontinence Diagnoses in Roma and Non-Roma Patient Groups
Distribution of Incontinence Diagnoses within Patient Groups
100 80 60 Under 18 40 18+ 20
Percentage Patients of 0 Non-Roma Roma Patient Groups
Fig.18. The Distribution of Incontinence Diagnoses in Roma and non-Roma Groups
49
9.6. Dental Health
Clinicians reported poor dental health across the Roma community, however, as no systematic work has yet been done to either address dental hygiene within this community or to collect data, it is still not possible to specify the extent of Roma dental health needs. Older men are reported to have the worst dental hygiene with many having no teeth at all, which reflects the high levels of consumption of sugary drinks reported for Roma men and women living on settlements in Slovakia (Hijová et al., 2014). Other factors which may promote poor dental health in children include prolonged breastfeeding, the addition of sugar to baby milk formula, consumption of sweets, sugary drinks, and an unhealthy diet. Areas such as Page Hall have no local dentists and dental practices which are within walking distance are often full and not taking new registrations. Health visitors and other healthcare practitioners often refer families when they identify dentists nearby which are accepting new patients. They also make referrals to the Charles Clifford Dental hospital but some families fail to attend their appointments and are then discharged. Ultimately, if there is a long-standing problem such as an abscess, individuals may present at A&E and subsequently need to have their teeth removed. It would be important therefore to undertake a systematic piece of work to better understand the nature of dental health needs within the Roma community.
10. Housing and Health
The first groups of Roma migrants to Sheffield in 2004 settled in Tinsley, later also moving into Darnall, then to the Pitsmoor, Firvale, Page Hall, Firth Park corridor and to a lesser degree to areas such as the Manor and Low Edges. 50% of the residents in Page Hall currently are Roma families. Some of the issues identified by residents in this area reflect the speed and magnitude of the Roma migration to this very ethnically diverse location. Homes are often small, many with 2 just bedrooms whilst many Roma families consist of at least 6 people, leading to overcrowding for nuclear families and extended families which often share properties until new arrivals settle into the country. Housing churn is driven by homes which are too small for Roma families and landlords who prefer to rent their properties on short term, 6 month lets which provide no stability for residents and frequently disrupt their healthcare.
Private landlords in Page Hall have been encouraged to improve the standard of their rental properties and to reduce overcrowding through a selective licencing scheme administered by Sheffield City Council. Health and safety issues which are evident in homes include unsafe use of gas and electricity meters, central heating boilers which are constantly turned on, leaving homes extremely warm and thus endangering the health of vulnerable infants and older people who are at risk of overheating in such an unregulated, warm environment. Some properties can be cold during winter and without a source of power for cooking if services have been disconnected.
50
Environmental concerns include a long-standing problem with mice in the area which pre-dates Roma migration, as mice are able to get into the roof space of the terrace houses and move easily between homes. Rats have also increased due to the poor state of sewers which are no longer baited, thus allowing the rat population to multiply unchecked. Outside toilets also allow rats to emerge from sewers into backyards where sources of food may be stored and discarded furniture may provide a refuge. Furnished rental properties are often plagued by bed bugs which colonise mattresses and are then transferred from one property to the next. Some of the most deprived residents who lived in extreme conditions in Slovakia may struggle to adapt to running water and sanitation within the home whilst others pride themselves on maintaining their homes and families in a clean and hygienic manner. For instance, some interviewees reported having repeatedly asked landlords to change dirty, smelly carpets to no avail, as they were concerned that the smells might get into their children’s clothes causing them to be bullied at school. Each interviewee resolved the problem by buying new floor coverings from their own pocket.
Many residents both Roma and non-Roma complain about the accumulation of rubbish in the streets which may encourage the growth of vermin in the area. Though recent migrants have been blamed, it is not entirely clear what is causing the rubbish in the streets. New migrants are often confused about the regime for putting refuse and recycling bins outside for collection on the correct days. Environmental Protection have generally removed settees and broken electrical items which were fly-tipped within certain areas of Page Hall to keep the area tidy, though this problem has been reducing recently.
11. Interventions which improve Roma Health
11.1. Roma Health Mediators in Romania
The Roma health mediator programme which emerged in Romania during the 1990s appears to be one of the most influential initiatives undertaken to address Roma health needs (Wamsiedel, (2013). Roma mediators were first trained in 1991 to help resolve interethnic conflict between Roma and non-Roma communities and Local Authorities in Romania by negotiating peaceful solutions to local problems. Then in 1996, the Romani Centre for Social Intervention and Studies (Romani CRISS) adapted the original concept to create a Roma health mediator pilot programme. The health mediators were generally Roma women with secondary school education, drawn from the communities in which they worked and so were bilingual in Romanian and Romanes and able to work across both cultures (Roman et al, 2013).
The pilot health mediator programme was mainstreamed in 2001/2002 to ensure sustainability and to extend its coverage across the country as part of the Romanian government’s national strategy for improving the situation of Roma ahead of accession to the EU in 2007. The ministry of health subsequently trained and
51 deployed up to 600 health mediators across the country. With the decentralisation of the public health system between 2008 - 2009, however, the responsibility for health mediation work was transferred to Local Authorities.
The initial focus of the pilot programme was on improving the health of Roma women and children and building bridges between clinicians and Roma communities, interpreting for patients or mediating encounters between Roma patients and clinicians. Health mediators also undertook outreach to improve health literacy, raise awareness of the importance of preventative healthcare and to address structural issues which limit Roma access to healthcare in Romania, especially the widespread lack of identity documents. An important aspect of the role is also to raise awareness among clinicians of the needs of Roma people and their different cultural beliefs and practices regarding health with the aim of reducing discrimination and intercultural miscommunication (Roman et al, 2013). After the work was mainstreamed, it focused more specifically on mediating between Roma communities and clinicians, collecting Roma health data, especially regarding maternal and child health and immunisation. Health mediators in Romania facilitate Roma residents’ access to healthcare by enrolling newborns with a GP, persuading Roma residents to acquire medical insurance and assisting them to achieve this. They provide health education about family planning, child healthcare, nutrition, breastfeeding and hygiene. Importantly, they also support public health interventions, for instance by encouraging Roma community members to participate in vaccination campaigns for TB and other infectious diseases (Wamsiedel, (2013).
The health mediator role has had a number of benefits for the Roma community in Romania as Roma women have been able to embrace a health leadership role within their communities and health services (Schneeweis, 2013). Although no detailed statistics have been reported in English, it is apparent that the programme has achieved broad, geographical coverage of Roma communities across Romania as a result of being mainstreamed and has benefitted between a quarter and a third of Roma citizens. By empowering Roma residents to gain identity documents, their economic and physical health has improved, since documentation enables them to access benefits and medical insurance, thus addressing some of the social determinants of health inequalities which they face (Wamsiedel, 2013). Despite its many benefits, the health mediator role in Romania is beset by a number of challenges due in part to a lack of career structure and planning for the future of Roma health mediation work. Challenges include an average salary of just €133 per month, fixed-term contracts and insecure tenure. Many mediators work in difficult conditions without office space, desks or computers, office stationery or the reimbursement of travel expenses and insufficient training (Wamsiedel, 2013).
52
11.2. An EU-driven Roma Health Mediator Programme, ROMED
The health mediator programme has now been replicated across Central and Eastern Europe under the ROMED1 programme, Mediation for Roma, initiated in 2011 by the Council of Europe to ‘set up a European Training Programme for Roma Mediators’ to work in schools, health, employment contexts and Local Authorities (ROMED1). Using a validated curriculum, trainers and infrastructure the ROMED1 programme has trained and certified over 1258 mediators in 22 European countries, including Ukraine, Greece, Romania, Germany, Bulgaria, the Former Yugoslav Republic of Macedonia (FYROM), Portugal, the Republic of Moldova and Kosovo between 2011 and 2015. The 3 objectives of the ROMED1 programme are to:
1. Promote intercultural mediation based on good communication and co- operation between Roma and public institutions. 2. Promote a human-rights-based mediation approach to avoid paternalistic attitudes and build trust between Roma and public authorities. 3. Provide mediators with relevant tools to support them in promoting democratic participation, empowering Roma and ensuring authorities are accountable.
The second stage of the Council of Europe development programme for Roma mediators, ROMED2, ‘Democratic governance and participation through mediation’, enables mediators to set up Roma Community Action Groups (CAGs) which work with Local Authorities to identify issues of concern to Roma people and negotiate local, inclusive solutions. ROMED2 is currently operational in Bulgaria, Belgium, Greece, FYROM, Portugal, Romania, Slovakia, Italy, Hungary, Ukraine and Germany and was initially implemented in 5-6 Local Authority areas per country. As the ROMED programme has been able to systematise the Roma health mediator model, adding a core curriculum, an organisational structure across Europe and within each country as well as externally monitored standards, mediators in other European countries currently enjoy better standards of pay and conditions than the original Romanian Roma mediators.
Whilst ROMED 1 and 2 aimed to build the capacity of Roma citizens to mediate and then participate, ROMACT, a joint programme of the European Commission and the Council of Europe, seeks to build Local Authorities’ capacity to respond appropriately to the needs of marginalised Roma communities. ROMACT programme officers work with local officials and elected mayors to address the inclusion and treatment of marginalised people within their municipality by creating sustainable plans, policies and the long-term political commitment to include Roma people. ROMACT officials support local authority officers to create a Joint Development Action Plan, to identify funding to implement and monitor projects and thus to ensure the Joint Development Action Plan is translated into practice. Ultimately, the aim of these programmes is to improve the welfare of Roma citizens across Europe and especially in countries where they are most marginalised.
53
11.3. Local Roma Health Mediator Initiatives
Though Roma mediator roles have been implemented in schools in Manchester and Scotland, there is so far no evidence that the health mediator programme has been implemented in the UK as such. However, with European funding the Roma Source project spearheaded a number of Roma health champions programmes in the UK. Three of these ran in Yorkshire and Humber between 2011 and 2013, in Bradford, Rotherham and Sheffield (Roma Source, 2012 and 2013). Whereas the Roma mediator role is paid employment, health champions are volunteers who undertake 100 hours of voluntary work within their communities. Health champions improve their own health and wellbeing as well as diffusing their knowledge to family, friends and community members to inspire others to live healthier lives. These community health champion programmes built on the work of Altogether Better’s asset-based community development approach which enhances the skills and life experiences of participants in order to enrich the lives of their communities.
The Sheffield Roma health champions programme developed 4 Roma community health champions (both male and female), and up to 18 trainee Roma health champions who regularly attended a women’s health group, learning about healthy eating and exercise. 2 of the male health champions ran a Roma men’s lunch club, gave dietary advice, created accessible posters to reinforce healthy eating messages and set up a Roma football team, later gaining paid employment on the basis of their training and volunteer work. Whilst Roma residents responded well to the programmes (Roma Source, 2012 and 2013), for instance participating readily in Zumba and healthy eating on a budget classes, it is not clear whether any of the original champions or trainee champions are still active in their community. This was short-term funding which built skills but did not appear to require detailed evaluation or quantification of the benefits or impacts of the programme and does not appear to have had follow-on plans to capitalise on the assets developed during the programme.
A more recent initiative, the ‘Roma Slovak Health Project’ led by Darnall Wellbeing and funded by the Prime Minister’s Challenge Fund (2015-16), aims to address many of the issues with health literacy and problematic access to healthcare highlighted in this report. With a small team of Roma health trainers, an outreach worker and programme co-ordinator, they have begun working in primary care and community settings. The programme benefits from paid, bilingual Roma workers from local Slovak Roma communities who have engaged with Roma residents from across the age range and begun to demonstrate how these roles might contribute to improving the health of the Roma community. This is, however, a small project with time-limited funding which is still to be evaluated to understand what the outcomes and impacts have been for Roma patients and GP surgeries. Wamsiedel (2013) indicated that the ideal Roma health mediator workload should comprise between 500 and 700 patients. If one were to apply this formula to Sheffield with its community of 6,000 Roma residents, the conclusion would be that up to 12 full time 54 equivalent Roma health mediators, Roma health trainers and/or Roma outreach workers would be required to begin to address the health needs of this community in a systematic way. It would also be important to learn from the ROMED Roma health mediator development programme and on-line training manual to optimise the impact of local Roma health mediation work.
11.4. Beyond Health Mediation
Outreach has been shown to be an important process for building trust and engaging Roma communities (Jones, 2014) which reflects community development approaches and is an integral part of the health mediator, community health champion and health trainer roles. Many commentators stress that for these programmes to be sustainable they need to build Roma community assets so communities can begin doing things for themselves rather than remaining dependent on external agencies (Manchester University, 2014). Buissonniere and Cohen (2015) provide 3 case studies which illustrate ways in which Roma citizens have been supported to address their own health needs and to hold service providers to account. In Bulgaria, a group of Roma volunteers, supported by trained moderators, were enabled to identify the health needs not only of the Roma community but also of the wider community and then to assess whether existing health services were meeting those needs. They gathered primary data using surveys and shared the findings with professionals as well as well as with the wider community. Because they planned 6 month follow-ups to the initial survey, they were able to demonstrate an immediate impact with a 25% reduction in illegal payments required by doctors and regular medical checks for children almost tripling.
A second case study explored how an NGO (Association for Emancipation, Solidarity and Equality of Women) addressed the exclusion of Roma residents from health care in FYROM. In 2011, 76% of Roma residents across the country were unable to access the universal healthcare available since 2009 as they did not possess identity documents. The NGO trained 12 paralegals from within 2 Roma communities to understand both the structure of the health and judicial systems. The paralegals conducted outreach work and workshops among Roma communities to make residents aware of their rights, helped to resolve disputes and supported Roma residents to gain identity documents.
Finally, the third case study indicates that with financial support from the Open Society Foundation and the Roma Education Fund, over 1,000 Roma young people have enrolled in medical and nursing schools in Bulgaria, FYROM, Romania and Serbia since 2008. They have therefore begun to change the culture of health systems from within, by becoming a tangible presence there, contributing to public health research and knowledge and thus challenging the restrictions often placed on Roma communities. Buissonniere and Cohen (2015) therefore recommend that whilst the health mediator role is important, it is time to upscale it and add other initiatives which build Roma community assets and mobilise Roma communities to 55 be part of the process of resolving the health needs with which they present. They especially emphasise that Roma communities should be consulted and their recommendations for how to address their health needs should be incorporated into action plans, health strategies and services.
12. Discussion
The data presented in this health needs assessment point to a community with multiple, multi-faceted health needs which span many areas of life and are closely linked to their recent history of exclusion and deprivation in Slovakia. The health of many members of this community continues to be impacted by upstream social determinants of health inequalities which include restricted access to good, well-paid employment, poor housing with overcrowding and infestations and low educational standards which limit life chances. A health impact assessment of housing conditions may well be an important response to the lack of good quality, rental homes for the most deprived members of this community (Molnár et al. (2012). It would also be important to better understand levels of poverty and social exclusion within the community as they impact on many aspects of health and wellbeing. It is perhaps not surprising that improving physical activity and diet have not been the highest priorities for some members of this community when their primary focus has often been on survival. Language barriers are also a major cause of health inequalities for the Roma population because despite the availability of Slovak interpreters, some Roma residents who do not speak Slovak fluently are not able to make themselves understood or to understand the health advice which they are given by health care practitioners through the Slovak interpreters. The impact of language barriers may therefore be that some Roma patients fail to access or benefit fully from available treatment and prevention services. It would be reasonable to conclude that the multiple health needs which many Roma people in Sheffield are exposed to, do not currently receive a universally appropriate response. This is in part because data have not been available to quantify Roma patient needs accurately but also because of the requirement for more systematic and co-ordinated responses to Roma health needs which are evaluated, up-scaled and rolled out across all the areas of Sheffield with significant Roma populations. In the coming years, the health impacts of poor educational outcomes, extreme deprivation, and a higher than average obesity rate are likely to lead to increased diagnoses of long-term conditions such as diabetes, hypertension, coronary heart disease and early deaths unless there is a radical change. The Roma population continues to grow both because of (reduced but) continued migration to Sheffield and a settled Roma community which is building families in the UK, so the health issues explored here are likely to become entrenched and more widespread unless a strategic response is developed and co-produced with Roma residents.
The current health needs assessment has sought to highlight the most important health needs using a social view of the determinants of health inequalities, however 56 some limitations in the data collection process were evident which future analyses should aim to improve on. In the first instance, the patient data extraction process had to be undertaken by individual GP surgery staff due to the lack of specific Roma ethnicity Read codes which resulted in each GP practice developing a slightly different approach to encoding their Roma patients. There are also 2 different IT systems in use by GP practices: SystmOne and EMIS, so it was not possible to employ one set of data extraction instructions for all practices. As a result, it was more of a challenge to control for errors and to ensure complete standardisation of the data extracted. This was, however, the first time that such a comprehensive set of Roma patient data was extracted and analysed, it is also important to acknowledge that GP practice staff dedicated a great deal of time to supporting this piece of work and providing the required data. Future analyses should aim to adopt a more centralised approach, with support from Sheffield CCG, to enable high quality data to be extracted which lends itself to more fine-grained analysis and age- standardisation, where appropriate.
An important, though serendipitous outcome of the HNA, was that a set of Roma Read ethnicity codes was defined in consultation with local and national Roma support groups and successfully requested from the Health and Social Care Information Centre. They were made available from April 2016 (see Appendix 4) across the country and will be promoted to all GP practices in Sheffield by colleagues from EMBED Health Consortium. This new opportunity to begin coding Roma patients right across the city, along with plans to harmonise GP IT systems by 2017 will enable future analyses of Roma health needs to be conducted more centrally and thus ensure a more accurate understanding of the size of the Roma population across Sheffield as a whole, as well as a greater level of standardisation and control of health data extracted.
This health needs assessment employed crude average scores to calculate differences between the Roma and non-Roma populations analysed. The differences in age profile of the 2 populations which became apparent during the data analysis, means that any future health needs assessment may need to collect sufficiently detailed health data to enable age-standardised analyses to be undertaken. This was especially clear with regard to differences in the use of emergency care where the older age profile of the non-Roma population may have partly accounted for the greater use of emergency services by the non-Roma adult population. A commitment of resources, time and co-operation between agencies would however be required to gain access to data and to enable this level of fine- grained analysis to be undertaken.
Finally, it is important to acknowledge the importance of the contributions made by Roma interviewees who shared their stories of migration, healthcare both in Slovakia and Sheffield and their aspirations for the future. The trust demonstrated by Roma participants in sharing their stories has made it possible to better understand many of their health behaviours and to identify further areas for investigation and 57
opportunities for collaboration with the Roma community to develop solutions. It is clear that this is a community which, despite its many needs is aspirational, wanting to improve itself on many different levels and to make a better life for the younger generation. This health needs assessment has adopted a holistic approach to health which reflects Sheffield City Council’s commitment to being a Public Health organisation. It was therefore important that the recommendations which follow reflect a similarly multi-faceted and multi-agency approach to addressing the health needs of the Roma community. The responses must necessarily be holistic and must also involve the Roma community both in the planning and implementation of solutions so as to help them to move from being a passive, marginalised group to being an active community which has agency and can make positive decisions to prioritise their own health and wellbeing.
13. Recommendations
The recommendations which follow reflect the need for broad responses to safeguard the health of Slovak Roma residents of Sheffield and newly arrived groups who share similar needs.
1. Strategic approach: Public health in Sheffield is encouraged to work with relevant agencies to translate the lessons learned from this HNA into a strategic, co-ordinated approach to anticipating and responding to the health needs of Roma and other newly arrived groups. This approach should draw on available evidence as well as successful local approaches such as those developed by the CYPF New Arrivals Roma Steering Group and would need to encompass health, social care, education, housing, access to information and involve voluntary, community and faith organisations. 2. Multi-agency working: It is important to foster a climate of greater multi-agency working which addresses the multi-faceted nature of the health and social care needs of the Roma community and other newly arrived groups, where relevant. This should include sharing intelligence, resources and good practice which support effective working with Roma and other newly arrived groups. 3. Specific public health concerns: It is important to design interventions which respond to immediate public health concerns including maternal and child health, overweight and obesity, appropriate access to emergency care services, smoking prevalence, prevention and adherence to treatment and improving screening for infectious diseases such as tuberculosis and hepatitis B, which will benefit both newly arrived groups and established communities. 4. Data needs: Public health in Sheffield and the Sheffield Clinical Commissioning Group are encouraged to work together to ensure that relevant read codes and measurement tools are in place as promptly as possible, to facilitate the monitoring of Roma and other newly arrived groups’ health needs as effectively as possible in both primary and secondary healthcare.
58
5. English language skills: It is important to invest in developing English language skills among newly arrived groups and communities which rely on interpretation services, as a better command of English will improve patients’ access to healthcare, reduce DNAs caused by miscommunication, improve their financial health and allow community interpreters to be developed from within newly arrived communities. 6. Mediator roles: It is important to develop Roma and other newly arrived residents to undertake a range of bilingual mediator roles which will promote greater access to healthcare, greater health literacy, will improve intercultural understanding, build community assets and will promote the financial health of newly arrived communities. The development of high-level English Skills should be a key aspect of the training programme for such roles. 7. Additional analysis: The HNA has uncovered the need to undertake additional analysis which facilitates better understanding and a more targeted response to ongoing threats to the physical, emotional and financial health of the Roma community and other newly arrived groups. Areas for investigation should include, among other things, dental health needs, mental health and the prevalence of maternal smoking in the Roma community. 8. Healthy homes: Sheffield City Council should continue working with private landlords, tenants and other agencies to ensure that the housing conditions available to new arrivals support good health and wellbeing outcomes both for newly arrived tenants and their neighbours.
59
14. References
Amnesty International (2013). Slovak Authorities in Breach of Obligations to Romani School Children. Accessed 5.5.2015 from https://www.amnesty.org/en/latest/news/2013/09/slovak-authorities-breach- obligations-romani-school-children/
(Arai, L. (2003). Low expectations, sexual attitudes and knowledge: explaining teenage pregnancy and fertility in English communities. Insights from qualitative research. The Sociological review. 2003, Vol.51(2), p.199-217.)
Babinská, I., Madarasová Gecková, A., Jarčuška, P., Daniel Pella, D., Mária Mareková, M., Štefková, G., Dankulincová Veselská, Z. (2014). Does the Population living in Roma Settlements differ in physical Activity, Smoking and Alcohol Consumption from the Majority Population in Slovakia? Cent Eur J Public Health, Supplement, 22: S22-27.
Barany, Z. (1998). Orphans of Transition: Gypsies in Europe. Journal of Democracy. Vol 9(3), p142 -156.
Brüggemann, C. (2011). Bildungsarmut in der Slowakei: Wenn Sonderschulen zu etnisch segregierten Räumen werden. Journal für International und Interkulturell vergleichende Erziehungswissenschaft. 17(2), p189-211.
Buissonniere, M. & Cohen, J. (2015). Leadership from within: Roma Communities responding to Health Inequality in Europe. Eurohealth Observer. Quarterly of the European Observatory on Health Systems and Policies. Special Issue. 21(1), 8-11.
Černušáková, B. (2015). Slovakia's 'Container Schools' worsen Segregation of Roma Children from Society. Amnesty International. Accessed on 5.5.2015 from https://www.amnesty.org/en/latest/news/2015/03/slovakia-segretation-of-roma- schoolchildren-worsens/
Cimberle, M. (2010). High Rate of primary congenital Glaucoma found in Slovakian Roma Population. Ocular Surgery News. 28(21), p32-34.
Craig, G. (2011). United Kingdom. The Roma: A Study of National Policies. On behalf of the European Union. Accessed from: www.peer-review-social-inclusion.eu
Csepeli, G. & Simon, D. (2004). Construction of Roma Identity in Eastern and Central Europe: Perception and Self-Identification. Journal of Ethnic and Migration Studies. Vol 30(1), 129-150
Europe-Cities. (nd). Healthcare in Slovakia. Accessed 18.6.15 from: http://www.europe-cities.com/en/633/slovakia/health/
European Roma Rights Centre. (2005). Landmark Housing Rights Victory for Roma in Slovakia. From, http://www.errc.org/article/landmark-housing-rights-victory-for- 60 roma-in-slovakia--united-nations-committee-on-the-elimination-of-racial- discrimination-finds-slovakia-in-violation-of-international-law-for-failing-to-remedy- racial-exclusion-of-roma%3B-errc-urges-break-with-policies-of-extreme- segregation/2210
European Roma Rights Centre. (2013). Slovak Municipality treated Roma Settlement as communal Waste - Rights Defender condemns Evictions. Accessed (3.6.2015) from http://www.errc.org/article/slovak-municipality-treated-roma-settlement-as- communal-waste--rights-defender-condemns-evictions/4175
European Roma Rights Centre. (2013). Slovakia: A Report by the European Roma Rights Centre. Country Profile 2011-2012. Accessed from www.errc.org.
Földes, M.E. And Covaci, A. (2011). Research on Roma Health and Access to Healthcare: State of the Art and Future Challenges. International Journal of Public Health. 57, 37-39.
Madarasová Gecková, A., Jarčuška, P., Mareková, M., Pella, D., Siegfried, L., Jarčuška,P., and Halánová, M., HepaMeta Team* (2014). Hepameta – Prevalence Of Hepatitis B/C And Metabolic Syndrome In Population Living In Separated And Segregated Roma Settlements: A Methodology For A Cross-Sectional Population- Based Study Using Community-Based Approach. Cent Eur J Public Health, Supplement, 22: S6–S11
Geronimus, A.T. (2003). Damned if you do: Culture, Identity, Privilege, and Teenage Childbearing in the United States. Social Science & Medicine. 57; 881–893
Gill, G. (2009). The Health Needs of the Slovak Roma Community in Sheffield. Community Practitioner, Vol 82(3); 34-37
Gill, G. & Malgren, J. (2011). The Slovak Roma Community in Sheffield. Health Visitors. Sheffield Children’s NHS Foundation Trust.
Ginter, E., Krajcovicova-Kudlackova M., Kacala, O., Kovacic, V., and Valachovicova, M. (2001). Health status of Romanies (Gypsies) in the Slovak Republic and in the neighbouring countries. Bratislavské Lekárske Listy, 102 (10): 479-484.
Ginter, E., Simko, V. and Wsolova, L. (2009). Fall of the Iron Curtain: Male Life Expectancy in Slovakia, in the Czech Republic and in Europe. Central European Journal of Public Health, 19(4), 171-174., Goday, A., Calvo, E., Vásquez, L.A., Caveda, E., Margallo, T., Catalina-Romero, C., and Reviriego, J. (2016). Prevalence and clinical Characteristics of metabolically healthy obese Individuals and other obese/non-obese metabolic Phenotypes in a working Population: Results from the Icaria Study. BioMed Central Public Health. 16(248).
Gregory, A., Vedio, A., Stone, B., Green, S. and Bronsdon, C. (2014). Targeted Testing in Primary Care demonstrates high Prevalence of Hepatitis B Infection within
61 the Slovak-Roma Population in Sheffield, UK. Journal of Viral Hepatitis 21(10), e- 138-139.
Grill, J. (2012). ‘Going up to England’: Exploring Mobilities among Roma from Eastern Slovakia. Journal of Ethnic and Migration Studies. 38:8, 1269-1287
Public Health England (2015). Health Profile 2015, Sheffield. Department of Health.
Public Health England (2016). Health Profile Outcomes Framework. Department of Health. Accessed: http://www.phoutcomes.info/public-health-outcomes- framework#page/1/gid/1000042/pat/6/par/E12000003/ati/102/are/E08000019
Hijová, E., Madarasová Gecková, A., Babinská, I., HepaMeta Team. (2014). Do eating Habits of the Population living in Roma Settlements differ from those of the Majority Population in Slovakia?. Central European Journal of Public Health, Supplement; 22: S65–S68 .
Huntley, A., Lasserson, D., Wye, L., Morris, R., Checkland, K., England, H.,Salisbury, C., and Purdy, S. (2014). Which Features of Primary Care affect unscheduled Secondary Care Use? A Systematic Review. BMJ Open4:e004746.
Hujová, Z., Alberty, R., Paulíková, E., Ahlers, I., Ahlersová, E., Gábor, D., and Dove, M. (2011). The Prevalence Of Cigarette Smoking And its Relation To Certain Risk Predictors Of Cardiovascular Diseases In Central Slovakian Roma Children And Adolescents. Central European Journal of Public Health 19 (2), p. 67–72.
Jakubíková, J., Kabátová, Z., Pavlovcinová, G., and Profant, M., (2009). Newborn Hearing Screeing and Strategy for early Detection of Hearing Loss in Infants. International Journal of Pediatric Otorhinolaryngology. 7, 607-612.
Jarcuska, P., Bobakova, D., Uhrin, J., Bobak, L., Babinska, I., Kolarcisk, P., Veselska, Z., Madaraskova Geckova, A., and the HEPA-META Team. (2013). Are Barriers in accessing Health Services in the Roma Population associated with worse Health Status among Roma?. International Journal of Public Health. 58, 427-434.
Jones, H. (2014). Outreach is important to improving Gypsy and Traveller health; new research findings. http://leedsgate.co.uk/outreach-important-improving-gypsy- and-traveller-health-new-research-findings
Kalaydjieva, L., Gresham, D., and Calafell, F. (2001). Genetic Studies of the Roma (Gypsies): a Review. Biomed Central Medical Genetics. 2(5)
Kolvek, G., Rosicova, K., Rosenberger, J., Podracka, L., Stewart R.E., Nagyova, I., Reijneveld, S.A., and van Dijk, J.P. (2012). End-Stage Renal Disease among Roma and non-Roma: Roma are at Risk. International Journal of Public Health. 57, 751- 754.
62
Labonte R, and Laverack, G. Capacity Building in Health Promotion, Part 1: for whom? And for what Purpose? Critical Public Health. 2001;11:2:113-127
Machlica, G., Zúdel, B., and Hidas, S. (2014). Unemployment in Slovakia. Inštitút Financnej Politiky. Economic Analysis Policy Paper 30.
Madden, H., Harris, J., Harrison, B., and Timpson, H. (2015). “Always Paracetamol. They give them Paracetamol for everything”: The Health of Eastern European Migrants and their Experiences of the UK Health Service. Poster Presentation. Public Health Conference, 2015.
Manchester University (2014). Black Health Agency (BHA) Engagement with Roma in Manchester (2013-2014): An evaluation. http://travellerstimes.org.uk/UserFiles/Files/Evaluation.pdf
Migliori, G.B., and Centis, R. (2002). Problems to control TB in Eastern Europe and consequences in low incidence countries. Monaldi Archives of Chest Disease 2002; 57: 5–6, 285–290
Minárik, G., Ferák, V., Feráková, E., Ficek, A., Poláková, H., and Kádasi, L. (2003). High Frequency of GJB2 Mutation W24X among Slovak Romany Patients with NSHL. General Physiology and Biophysics. 22, p.549-556
Moore, L. (2010). A Healthcare Needs Assessment of the Slovak Roma Community in Tinsley, Sheffield. University of Sheffield.
Molnár, Á., Ádám, B., Antova, T., Bosak, L., Dimitrov, P., Mileva, H., Pekarcikova, J., Zurlyte, I., Gulis, G,, Ádány, R., and Kósa, K. (2012). Health Impact Assessment of Roma Housing Policies in Central and Eastern Europe: A comparative Analysis. Environmental Impact Assessment Review. 33, 7-14.
Neuwahl, N. A. (2000). The more the merrier? Hungarian and Romany Minorities in Slovakia. Liverpool Law Review. Vol 22. 21-37
Nikolic, Z., and Djikanovic, B. (2014). Differences in the Use of Contraception between Roma and non-Roma Women in Serbia. Journal of Public Health. 37(4), 581-589.
Petrašová, D., Bertková, I., and Petrášová, M., Hijová, E., Mareková, M., Babinská, I., Jarčuška, P., Daniel Pella, P., Madarasová Gecková, A., HepaMeta Team (2014). Biomarkers associated with Obesity and Overweight in the Roma Population residing in Eastern Slovakia. Cent Eur J Public Health, Supplement, 22: S18-21.
Ratcliffe, G. (2011). The Needs of the Slovak Roma Community in Sheffield. A Summary Report. NHS, Sheffield.
Roma Matrix (2014). Providing an effective Health Service for Roma Women in Yorkshire. Migration Yorkshire.
63
Roma Source (2012). Improving the Health of Roma Communities in the Yorkshire and Humber Region: A Guide to Good Practice. Migration Yorkshire.
Roma Source (2013). Roma Health Champions in the Yorkshire and Humber Region: A Guide to good Practice. Migration Yorkshire.
ROMACT. A European challenge: the need to act at local level http://coe- romact.org/about-romact Roman, G., Gramma, R., Enache, A., Pârvu, A., Moisa S.M., Dumitras, S., and Ioan, B. (2013). The Health Mediators: Qualified Interpreters contributing to the Health Care Quality among Romanian Roma Patients. Med Health Care and Philosophy 16; 843-856.
ROMED1. Mediation for Roma. See: http://www.coe-romed.org/
ROMED2. Democratic Governance and Community Participation through Mediation. See: http://coe-romed.org/romed2/about
Rudge, G.M., Mohammed, M.A., Fillingham, S.C., Girling, A., Sidhu, K., and Stevens, A.J. (2013). The combined Influence of Distance and Neighbourhood Deprivation on Emergency Department Attendance in a large English Population: A retrospective Database Study. Plos One. 8(7)
Schaaf, M. (2007). Confronting a hidden Disease: TB in Roma Communities. World Lung Foundation. Roma Health Project. Open Society Institute.
Sepkowitz, K.A. (2006). Health of the World’s Roma Population. The Lancet. 367 (9524), 1707-8.
Sheffield City Council. (2015). Sheffield’s Population in 2014. Accessed: www.sheffield.gov.uk/your-city-council/sheffield-profile/population-and-health.html
Simko, V. and Ginter, E. (2010). Shorter Life Expectancy and Metabolic Syndrome in Romanies (Gypsies) in Slovakia. Central European Journal of Public Health, 18(1), 16-18
Schneeweis, A. (2013). Empowered Leaders and alone in Community: Stories of Romanian Roma Health Mediators. Women’s Studies in Communication. 36(2), 167-188.
Wilson, M. and Daly, M. (1997). Life expectancy, economic inequality, homicide, and reproductive timing in Chicago neighbourhoods. BMJ;314:1271–4
Veselíny, E., Janičko, M., Dražilová, S., Siegfried, L., Pastvová, L., Schréter, I., Kristian, P., Virág, L., Jarčuška, P., Valková, I., Cáriková, K., Senajová, G., Fedačko, J, Pella, D., Mareková, M., Madarasová Gecková, A., and Jarčuška, P., HepaMeta
64
Team (2014). High Hepatitis B and Low Hepatitis C Prevalence in Roma Population In Eastern Slovakia. Cent Eur J Public Health, Supplement, 22: S51–S56
Veselská, Z. (2004). Roma Housing Rights in Slovakia. Accessed 5.5.15. from http://www.errc.org/article/roma-housing-rights-in-slovakia/1853
Wamsiedel, M. (2013). Roma Health Mediation in Romania. Roma Health - Case Study Series. No.1. World Health Organisation. http://www.euro.who.int/en/search?q=Roma+health+mediators
Warnke, A. M. (1999). Vagabonds, Tinkers, and Travelers: Statelessness among the East European Roma. Indiana Journal of Global Legal Studies. Vol 7(1), 335- 367
World Health Organisation. (2013). Slovakia moves towards TB Elimination. Accessed from: http://www.euro..int/en/countries/slovakia/news/news/2013/03/slovakia-moves- towards-tb-elimination
65
15. Appendices
Appendix 1 GP Data Request Form
Slovak Roma Health Needs Assessment, Sheffield City Council, 2015 Roma Patient Demographics and Health Needs – Data Collection
GP Practice Date Completed
The data required for this initial analysis spans the period from April 2014 to Mar 2015.
1. Demographics Total % male % female Tot al number of registered patients Number of patients from an EU Roma background
Age Range Total No. patients No. Roma patients 0 - 17 18 - 36 37 - 55 56 - 74 75+
2. Disease prevalence (taken from QOF registers) Please identify the total numbers of patients on the QOF register, and the numbers of patients from a Roma background broken down by age range. This can be found by breaking down the QOF register from the QOF screen. Age Range Total No. patients No. Roma patients
0 - 17 18 - 36 Contraceptive register 37 - 55
56 - 74 75+ 0 - 17 18 - 36 Asthma register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Atrial Fibrillation register 37 - 55 56 - 74 75+ 0 - 17 COPD register 18 - 36 37 - 55 66
56 - 74 75+ 0 - 17 18 - 36 Cancer register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 CKD register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Dementia register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Depression register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Diabetes register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Epilepsy register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Heart Failure register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Hypertension register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Learning Disability register 37 - 55 56 - 74 75+ 67
0 - 17 18 - 36 Mental Health register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Obesity register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Palliative Care register 37 - 55 56 - 74 75+ 0 - 17 18 - 36 Stroke register 37 - 55 56 - 74 75+ 3. Screening Uptake If you do not code results or do not code consistently, please indicate that here: Screening results are not coded / not coded consistently Total No. Total No. Roma Eligible pts eligible Total % pts Roma % Roma screened pop screened screened pop screened Cervical screening (women aged 25-64) Breast cancer screening (women aged 50-70 ) Bowel cancer screening (all patients aged 60-74)
4. Appointments Please run a search for appointments at your practice from April 2014 – March 2015. Please make sure to note item count and not patient count. Total appts Tota appts Appts Roma Appts Roma pts under 18 pts 18+ pts under 18 pts 18+ Total number of GP Practice appointments Total number of GP Practice DNAs
Appointments with Interpreters If you code presence of an interpreter at your practice, please note the number of incidences of this recording in all patients records and those from a Roma background. 68
Please make sure to include item count, not patient count for this. If you do not code this or do not code consistently, please indicate that here: Use of interpreters is not coded / not coded consistently
Total - all patients Total – Roma patients No of recordings of interpreter present
4.2. Hospital attendance The number of incidences of A&E attendance and DNA for hospital appointments. Please record item count, not patient count. Please break this down by age: under 18 and 18+. If you do not code this or do not code consistently, please note that here: Hospital DNA not coded / not coded consistently
Total pop. Total Roma pop. Roma pop. under 18 pop. 18+ under 18 18+ Total number of A&E attendances Total no hospital DNAs
5. TB and Hep B Incidence and Vaccination uptake Please run a search on patients coded with TB and Hep B and TB and Hep B vaccinations. Total pop Roma pop Numbers of patients with diagnosis of TB Numbers of patients with record of TB vaccination Numbers of patients with diagnosis of Hep B Numbers of patients with record of Hep B vaccination
6. Smoking, alcohol and substance use Please run a search on patients coded with benzodiazepine dependency, substance dependency and a record of being a ‘smoker’. Total pop Roma pop Numbers of patients with record of Benzo dependency Numbers of patients with record of drug dependency No of patients recorded as Smoker
Please run a search for alcohol screening. If you do not use an alcohol screening tool or do not code consistently, please indicate that here: Alcohol screening is not coded / not coded consistently Total pop Roma pop Numbers of patients with record of an alcohol screening test (AUDIT C or FAST questionnaire) Numbers of patients with a high score on alcohol screening test (5+ for AUDIT C or 3+ for FAST)
69
7. Continence Please run a search for patients coded as having urinary incontinence. Please break this down by age: under 18 and 18+. Total pop. Total Roma pop. Roma pop. under 18 pop. 18+ under 18 18+ No. pats with record of continence issues
8. Pregnancy Please run a search for patients coded as currently pregnant (with the code being entered between April 2014 – March 2015). Please break this down by age: under 18 and 18+. Total pop. Total Roma pop. Roma pop. under 18 pop. 18+ under 18 18+ No. patients currently pregnant
Appendix 2
Roma Interviews Protocol
Slovak Roma Health Needs Assessment – Roma Interviews
We are interested in hearing the stories of Roma people who have come to live in England. Please tell us your story in your own words and giving as much detail as you can.
1. Were you born in Slovakia? a. If not, have you lived in Slovakia or visited with family? b. What was your experience of Slovakia when you visited? c. If yes, please go to question 2 2. Tell me about your life in Slovakia. (For people who were born in Slovakia only). a. Which part of Slovakia are you from? – e.g. in the East? b. Did you live in a village, town etc. c. Did you live in a village with other Roma people or with Slovaks or a mixture of Roma and Slovaks? d. Where did you go to school? What was your school experience like? e. Tell me about your experience of work/looking for work in Slovakia? f. What was life like for you in Slovakia? g. Describe a normal day for you or your family in Slovakia? h. What did it mean for you/your family to (not) have a job? i. What did it mean for you/your family to not have enough money?
70
3. Did you ever need to use the health care system in Slovakia? a. Could you tell me about your experience with healthcare in Slovakia? b. Were you and your family quite healthy when you lived in Slovakia? c. Why/ why not?
4. Can you tell me some of your reasons for coming to the UK? a. Did you already know someone here in Sheffield? b. Did you come here to get work/ get a better paid job etc.? 5. What has your experience been since coming to the UK? a. How did you find housing/work? b. How did you find your current work? c. What was your experience of attending school in Sheffield? d. How have you managed to learn English, get help with filling in forms etc.? e. Describe a normal day for you or your family here in Sheffield. f. How is that different from your life in Slovakia?
6. Have you needed to use the health care system since coming to the UK? a. Could you tell me about your experience with healthcare in the UK? b. How did you explain your problems to the doctor/nurse? c. How do you feel about the treatment which you received? d. If you could change one thing about the healthcare you receive, what would it be? 7. What does it mean to you to be Roma? a. What makes you Roma and not just Slovakian or British? b. Examples: language, culture (music, dance, food, your history) c. Please provide some more detail. 8. Where would you like to be in 5 years time? a. Will you be in Sheffield or Slovakia? b. What will you be doing? Studying/working/in a new job? c. What are your ambitions for yourself (and your family?) ABCD Questions
These questions will try to find out about what you like doing in your spare time, the area where you live and the activities you would like to get involved in.
9. What do you enjoy doing in your spare time or as part of your job? a. Do you play sports? b. Do you have hobbies e.g. cooking, sewing, making things, gardening etc.? c. Do you work with other people? E.g. giving advice, organising events etc.?
10. What groups or clubs do you belong to?
a. (Example: church, mosque, football or sports group, parents’ group, support groups, women and men’s groups, etc.)
71
11. What do you think you do well? Examples: a. Do you ever organise things such as football matches, a family party? b. Do you cook for a large group of people? c. Do you entertain people? d. Do people in your family or community ask you to do things for them (e.g. to listen to their problems, to give them advice, to translate, to repair things etc.)
12. What do you like about the area where you live in Sheffield? a. Examples: how neighbours treat each other; the shops, schools, parks etc.
13. If you could change anything about the area where you live, what would it be? a. If you woke up tomorrow and the area where you live could be different, what words would describe the difference you would see? b. Examples: how friendly people are, how clean the area is etc.
14. What could you do (maybe with other people) to help make things better for the community where you live?
a. (Examples: working with children/young people, helping families, making changes to the area you live in, teenagers, seniors, domestic violence issues, personal safety, education )
15. Think about the skills or abilities that you have. Which of them would you like to use to help other people in the community where you live?
a. (Examples: looking after children, looking after people who are sick, reading, teaching English or other skills like computers, translating, gardening, singing, listening, cooking, sewing, car repair, repairs in the home etc.)
16. Who else do you know in the area where you live? a. Would they be interested in sharing their ideas about their community? b. Do they have skills that they could share with other people?
72
Appendix 3 Emergency Care Usage in Sheffield
A&E attendance rate (2014/15) per 1,000 registered population versus IMD deprivation score by practice
500
450 Page Hall Upwell Street Burngreave 400 Clover Firth Park
Pitsmoor 350
Tinsley 300
250
200 R² = 0.69
150 A&E attendanceA&Epopulation per1,000
100
50
0 0 10 20 30 40 50 60 Deprivation score (IMD)
Soady, 2015, Public Health,Sheffield
399000
394000
low mid 389000 high
384000
379000 420000 425000 430000 435000 440000 445000
Sheffield CCG, 2015 Attendances at Sheffield A&E by LLSOA : 2014/15
73
Sheffield CCG, 2015
74
Appendix 4
Roma Read Code Requests
Available from April 2016
The following Read codes were requested as one of the outcomes of the Slovak- Roma health needs assessment with support from the Commissioning Support Unit, Sheffield. They have all now been formally adopted and will be made available to GP systems from April 2016.
Roma Read Codes - Text Read V2 Code CTV3 Code Roma ethnic group 9TC XaedV Slovak Roma 9TC4 XaedN Czech Roma 9TC1 XaedQ Hungarian Roma 9TC5 XaedS Polish Roma 9TC2 XaedT Romanian Roma 9TC3 XaedU Bulgarian Roma 9TC0 XaedW Main spoken language Romanes 13wd XaedX Romanes as a second language 13sl XaedY Does not read English 13ZA1 XaeuA Romanes language interpreter 9NnT XaeuB needed Does not speak English 13ZA0 Xaeu9
75