Health Priorities Depending on Importance: Frequency, Impact, Cost, Political Agenda, National

SUFFOLK TRAVELLERS’ HEALTH NEEDS ASSESSMENT

Dr Jennifer L Y Yip

Specialist Registrar in Public Health Medicine

February 2009

CONTENTS

Abbreviations

Acknowldegements

Many thanks to all who contributed information for this health needs assessment.

Stephanie Bennett

Alison Blake

Jacqueline Bolton

Gloria Buckley

Rory Coxhill

Sandy Griffiths

Penny Hendry

Hilary Prior

Valerie Sawyer

Tracey Smith

Janet Smith

Keren Wright

Race for Health reviewers

All participants in the stakeholder workshop and interviews.
Definitions

Advocacy

Speaking up for, or acting on behalf of yourself or another person. An advocate can help service users to make clear their own views and wishes, express adn present their views effectively and faithfully, obtain independent advice and accurate information, or negotiate and resolve conflict.

From Cambridgeshire county council, What is Advocacy?

Health Visitor

A UK registered nurse or midwife who has undertaken further training to work as part of the primary care team. The role of the health visitor is about the promotion of health and the prevention of illness in all age groups.

From NHS careers

Health Trainer

A trained health worker who offers practical advice and good connections into services and support available locally. In Suffolk, their key roles are as sign-poster, advocate, supporter, administrator of brief interventions and healthy connector.

Health Need/Health care need

Need is commonly defined as the capacity to benefit. Therefore health needs implies that there are effective interventions that are available to meet these needs and improve health. Conversely, health care needs are those that can benefit from health care.

Health as defined by the World Health Organisation (WHO)

“a state of complete physical, psychological and social well being and not simply the absence of disease or infirmity”

Health needs assessment

A systematic review of the health issues facing a population leading to agreed priorities and resource allocation that will improve health and reduce inequalities

1. Executive Summary

Gypsies and Travellers experience some of the worst health in all Black and Minority Ethnic (BME) groups. Tackling health inequalities is a national and local priority. NHS Suffolk’s 2008 annual public health report, focusing on health inequalities identified Gypsies and Travellers as a local disadvantaged group who experience poorer health compared to other communities.

A health needs assessment (HNA) for Gypsies and Travellers in Suffolk was performed in order to identify strategies to improve the health of this population.

The HNA consists of an epidemiological, comparative and stakeholder section. Approximately 3,000-5,000 Gypsies and Travellers reside in Suffolk, a majority of who live in houses. The epidemiological section showed that Gypsies and Travellers have poorer health than comparators drawn from other disadvantaged residents in the UK. They have higher levels of chronic diseases such as heart disease, asthma and diabetes. There are higher mortality rates for infants and lower life expectancy for adults. Their poor health is related to difficulties with accommodation options and barriers to access to healthcare. The comparative section showed that locally and nationally, there are health initiatives that focus on community engagement and outreach to improve access to healthcare. The stakeholder section used information from a countywide stakeholder event hosted by Suffolk county council and site visits and interviews with local community members. This showed that improving communication and engagement with the local community to remove barriers of access to healthcare were local priorities.

Recommendations based on the assessment including local priorities include:

1. To establish specialist health worker/health workers in an outreach programme to build trust and links with Gypsies and Travellers in sites, houses and unauthorised encampments.
2. To establish specialist health worker/health workers in community engagement and advocacy services to empower communities and enable individual access to services
3. To work with local partners to raise cultural awareness and reduce prejudice in frontline staff
4. To ensure information for Travellers is in an appropriate and accessible format

It is also important to emphasise the need for continued dialogue and consultation with the local community in order for any strategy to improve health of Gypsies and Travellers to succeed.

Introduction

2.1 Who are the Gypsies and Travellers in Suffolk?

Gypsies and travellers form a distinct heterogeneous ethnic group with different cultures, languages and beliefs. This group includes English gyspies/Romanicals, Irish travellers, European Roma, Scottish gypsies/travellers, Show and circus people and New Travellers. The first three groups are recognised by UK law as distinct ethnic groups. They are a diverse group, and the one feature that connects them is nomadism. The official definitions of this group often refer to this characteristic. Traditional Gypsies are nomadic by heritage but some now live in permanent housing, while others live on sites and some still travel extensively. On the other hand, new Travellers are nomadic because of a lifestyle choice.

2.2 Health Needs Assessment

This report describes a health needs assessment (HNA) carried out for the Gypsy and Traveller population in Suffolk. The aim of the HNA is to understand key health issues and to identify priority areas for action which will lead to health benefits for the Gypsy and Traveller population in Suffolk. Social and environmental determinants of health that are important considerations, however, most of these are beyond the scope of this assessment, and we will focus on health care needs.

The assessment involves three main areas: the epidemiological, comparative and the stakeholder sections. The epidemiological section is a description of the health issues in this population, using information from published work. This information was used to project estimated burden of ill-health in the local population. The comparative section will compare services available in the local area for Gypsies and Travellers to those in other areas of the Eastern region. There will also be consideration of national practices. The stakeholder section will use information gathered from the health and well-being theme of the stakeholder workshop conducted by Suffolk County Council (SCC). Interviews with local stakeholders, including health professionals, education professionals and people from the community, were also used to inform this section.

The objectives of the assessment are:

1. To describe the health status of Gypsies and Travellers using local and national data.
2. To investigate interventions that are effective in improving health of Travellers, and potential for local implementation
3. To establish local priorities for health service provision and improvement, using opinions of local stakeholders

1. Background

3.1 Local population

There are approximately 300, 000 gypsies in UK1. There are no census data on gypsies, and estimates are based on methods such as caravan counting, and are likely to be underestimates, missing out those in transit, on unauthorised sties and in settled accommodation. Up to three times as many travellers live in settled accommodation2. At the last caravan count in July 2008, there were 406 caravans in Suffolk3, with an estimated 1.4 caravans per household and 2.9 persons per household4, this gives approximately 841 Gypsies and Travellers in caravans in Suffolk. In the whole of the Eastern region, the number of Gypsies and Travellers is estimated to be the higher end of 17,000-50,0005, which makes it the largest ethnic minority in the region. Approximately 10% of Travellers in the Eastern region live in Suffolk (based on proportionate caravan counts), giving a total estimated population of between 3,000- 5,000 Travellers in this county.

A majority of Travellers in the region are traditional Travellers with mainly English Gypsies and Irish Travellers. An additional local consideration is groups of new Travellers in the Suffolk Coastal region. There have been unauthorised sites around Rendlesham forest for many years, with some residents having lived there (in different locations) for over 20 years. This is proportionally a small group, at most of up to approximately 100 people (estimated by local workers).

3.2 Local Partners

NHS Suffolk is working with Suffolk County Council and partners as part of the Gypsy and Traveller Steering Committee and as part of the Health and Well Being subgroup to improve the health of this community. The aim of the Steering group is to proactively seek ways to address the recommendations made by legislation and guidance. The involvement of Gypsies and Travellers on the steering group is vital to understanding their needs.

3.3 Local Policies and Agreements

Reducing health equalities is a strategic priority for NHS Suffolk. Gypsies and Travellers experience worse health than other socially disadvantaged groups. Therefore improving health of Gypsies and Travellers would fulfil this area of our strategy, in particular the priority “HI4: Improve health in groups who are known to have worse than average life expectancy including black and other minority ethnic groups” from Healthy Ambitions Suffolk.

Health care delivery and better access to health services for Gypsies and Travellers is the theme for one of the local area agreement (LAA) targets under the care, health and independence delivery partnership.

1. Epidemiological Section

This section estimates the distribution of Travellers in Suffolk using information from the DCLG biannual caravan counts. This is followed by a literature review of health issues experienced by this community, and potential health intervention that may improve health in this community. Systemic information such as census data is not available for this group because a majority do not have a permanent residence, and the census does not have a separate ethnicity category for gypsy before 2001, when it was available as an optional category.

4.1 Department of Communities and Local Government bi-annual caravan counts

This activity records that number of caravans on both authorised and unauthorised sites across England.3 These estimates reflect only a proportion of total population of Gypsies and Travellers. In particular, it is known to miss certain groups such as Showmen and housed Travellers. There is also a seasonal variation in caravan counts, with a 30% increase between January and July 2007, but only a 7% increase between January and July 2008 in Suffolk. In general, there has been a year on year increase in caravans evident from the past 5 counts, from 360 in July 2006 to 406 in July 2008, representing a 13% increase. Table 1 details the location and number of caravans in Suffolk from the July 2008 counts.

This shows that there are higher proportions of unauthorised sites in Suffolk compared to the East of England as well as nationally (38% vs.21.2% in Eastern region and 22.6%nationally). The districts within Suffolk responsible for this higher proportion are Mid Suffolk (34.7%) St Edmundsbury (38.6%), Babergh (100%) and Suffolk Coastal (100%). The latter district contains 13% of all caravans counted in July 2008, of which all are on unauthorised sites. Suffolk Coastal has also experienced the highest increase of over 75% from 12 caravans in July 2006 to 53 in July 2008. There are currently no transit pitches in Suffolk for caravans passing through the county and may require a temporary stopping place.

The high proportions of unauthorised sites reflect a shortage of accommodation for Gypsies and Travellers in the area. Additional caravan pitches have been planned, with a proposed 151 pitches recommended by East of England Regional Assembly (EERA) by 2011 in Suffolk, 31 of which would be in Suffolk Coastal and 42 in Mid Suffolk. There are also 20 transit sites proposed6. The final policy is due to be published in summer 2009.

1

Table 1. DCLG biannual caravan counts for July 2008

*The July 2008 count was not performed by Mid Suffolk due to circumstances beyond the authority’s control.

1

4.2 Overview of Health Status of Gypsies and Travellers

A brief literature review was carried out to extract published information on the health of Gypsies and Travellers, and the strategy is described in Appendix A. The most comprehensive and relevant study that examines the health status of Gypsies and Travellers in the UK was conducted by a research group in Sheffield, supported by the Department of Health7. The primary aim of the study was to determine whether Gypsy Travellers have significantly poorer health status and more self reported symptoms of ill health than other UK-resident, English speaking ethnic minorities and economically disadvantaged White UK residents. The group quota sampled 293 Gypsy Travellers from London, Bristol, Sheffield, Leicester and Norfolk. A comparison group of age and sex matched participants from White, Pakistani, Black Caribbean ethnic groups, urban and rural environments, and those who were socio-economically deprived. The comparators from Norfolk (the closest county by geography and demography) were rural mixed income populations.

An ancillary qualitative study to the Sheffield study with 27 in depth semi-structured interviews using purposive sampling was also carried out. The purpose of the study was to illuminate the findings of the survey of health status by exploring their health related beliefs and experiences8.

Other studies in the literature tend to be less well designed with a tendency towards smaller numbers and descriptive rather than analytical (i.e. no comparators) in nature. A summary of the main findings from the Sheffield study and other main findings from the literature on health of Gypsies and Travellers in England are presented below.

4.2.1 General Health

Gypsies and travellers report poorer general health compared to the settled population1. Using a generic health status questionnaire called EQ-5D, researchers were able to determine the self-reported health status of travellers. The EQ-5D asks questions about five aspects of health (mobility, self-care, usual activity, pain or discomfort, anxiety or depression) to generate a summary measure of general health status and quality of life. Travellers were more likely to experience some problems in all five aspects of health questioned compared to a group of settled residents with similar socio-economic status. (Figure 1). The study also used census questions on health including one on long-term illness and general health.

Overall, Gypsies and Travellers were also more likely to have long term illness, with significantly higher proportions of Travellers reporting bronchitis, asthma, symptoms suggestive of possible angina and anxiety. Other problems reported after prompting were “nerves”, arthritis, and eye/vision problems. The study also showed that 42% of Gypsies and Travellers have long term illness compared to 18% of the general population.

Other studies have shown that the average life expectancy is 10-12 years less that the general population9.

Figure 1.

4.2.2 Maternal and Children’s Health

The report of the Confidential Enquiries into Maternal Deaths in the UK, 1997-1999, found that Gypsies and Travellers have possibly the highest death rate of all maternal groups10.

Older studies that examine maternal health suggest poor access to health care and poor outcomes. Pahl and Vaille found that 30% of mothers did not receive antenatal care, and high rates of perinatal mortality, stillbirth and infant mortality11. In Travellers’ communities, the perinatal mortality rate ranges from 16-28.3 per 1000 births compared to 8.2-9.8 per 1000 births nationally during comparable years. There is also a higher rate of miscarriages reported by Gypsy women in the Sheffield study1. Gypsy women are also more likely to have large families.

Studies have consistently identified poor immunisation uptake as a concern in the Gypsy and Traveller population1, 12. (Figure 2) Most of these studies were conducted nearly 20 years ago and may not reflect current practices.

4.2.3 Mental Health

In addition to the evidence of anxiety and depression from the EQ5D questionnaire, a standardised questionnaire was also used to assess mental health in participants in the Sheffield study. The Hospital Anxiety and Depression (HAD) scale is a self screening questionnaire consists of seven questions for each condition. This showed that Gypsy Travellers were more likely to experience depression (% difference=14%, 95%confidence interval (CI)=8-20%, p<0.01) and anxiety (%difference =26%, 95%CI=19-33, p<0.01). Further analysis suggested that from the HAD questionnaire, anxiety was associated with sex, being a smoker and living in a house, whereas depression was linked to age, female gender, no schooling and being a smoker. Similarly, age, female gender and smoking were associated with anxiety/depression from the EQ5D questionnaire. Housed Travellers were also more likely to be anxious than those living in trailers irrespective of age, gender, education or smoking status. Overall, Gypsy Travellers were three times more likely to be anxious and twice as likely to be depressed compared to their counterparts.