Providing healthcare to Gypsy and Traveller

FEATURE Patrice Van Cleemput SRN, RSCN, RHV, PhD Research Fellow, Public Health ScHARR, University of Sheffield

Providing healthcare to Gypsy and Traveller communities Despite a high prevalence of ill-health in this community, misunderstandings and mistrust between patients and healthcare providers can create complex barriers to care

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ypsies and Travellers suffer from poorer health status than that of the general population and of other marginalised groups in the UK.1 They experience particular barriers in access to optimum healthcare provision. These barriers are explored, with advice on best practice to enable primary care nursing staff to take appropriate action to improve the healthcare experience and health outcomes for these disadvantaged groups of people.

needing to access primary healthcare services, and many of these, including difficulties in GP registration, anticipation of discrimination, poor literacy, a nomadic lifestyle leading to poor continuity of care, and lack of cultural awareness among health staff, have recently been acknowledged by the Government ministerial working group on tackling inequalities experienced by Gypsies and Travellers.5 However, according to Gypsy and Traveller study participants, the social exclusion they experience appears to be the one of the most significant barriers, and contributes to substantial communication difficulties between Gypsies and Travellers and primary healthcare staff.6,7 Gypsies and Travellers speak of Life expectancy of Gypsies and their awareness of a society that is hostile towards Travellers them and their pervasive experience of prejudice Although Gypsies and Irish Travellers are legally ‘Gypsies and and overt racism explains their mistrust of recognised in the UK as ethnic minority groups Travellers are significantly more likely ‘Gorgers’(a term given to the rest of UK society, and covered by the Race Relations Act 1976, to suffer from chronic i.e. non-Gypsies or Travellers). This mistrust persistent inadequate ethnic monitoring ensures ill-health or disability extends to health staff, with many experiences their ‘invisibility’ in national health data. Although that limits their daily of cultural insensitivity by health workers or we have no national life expectancy data for activities or work’ failure to obtain an appointment to see a doctor Gypsies and Travellers in the UK, the All Ireland being viewed as arising from racist or discriminaTraveller health status survey shows life expectancy tory attitudes. This experience, implicated in low for Irish Traveller men at birth is 61 years (15 years less expectations of healthcare and associated low expectathan men in the general population) and for women it is 70 tions of being treated with respect and dignity, is partly responsiyears (11.5 years less).2 A local baseline census study in Leeds3 ble for a self - reliant tendency to manage health for as long as suggests similarly poor life expectancy for Gypsies and Travellers possible without seeing a doctor as long as symptoms appear in the UK, where the age profile of Gypsies and Travellers gives an minor. average life expectancy as 50 years, compared to 78 years for the The consequent delay in attempting to access services often general Leeds population. leads to more serious morbidity at eventual presentation. This can Gypsies and Travellers are significantly more likely to suffer fuel fears about possible prognosis and then leads to a great from chronic ill-health or disability that limits their daily activities or sense of urgency to see a doctor. The urgent need to be seen and work1 and maternal health is also significantly worse1,4 with a treated at this stage intensifies pre-existing fears of being refused significantly higher number of miscarriages.1 an appointment or being taken seriously. Where children are concerned there is rarely delay; anxiety and urgency is usually Barriers to accessing healthcare immediate on any indication of symptoms of ill-health and this is There are multiple barriers faced by Gypsies and Travellers when

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To adopt a ‘culturally safe’ approach to nursing practice, as originally developed by Ramsden in the context of poor health of Maoris,10 this extends to recognising structural influences such as institutionalised racism. The difference between cultural sensitivity and cultural safety is that the latter is concerned with recognition and acknowledgement of the influences of the social structures, that may not only affect healthcare access but may also influence the power relationship in service delivery.11 The application of a culturally safe approach is further developed in an RCN distant learning module, stating that discrimination, racism, lack of equality of opportunity and stereotyping are issues that the concept assists in exploring.12 Reflective practice is an important tool for ensuring cultural safety, and Bolton promotes its application to “facilitate and enhance…reflective critical awareness of personal values, ethics, prejudices , assumptions of professional identity…”13 One of the most frequently-cited reasons for satisfaction with a health worker was that they ‘understood Travellers’ or knew their personal or family history. This knowledge and understanding from the health worker instilled confidence in Travellers that they would not need to explain who they were or their situation.8 Trust is a fundamental feature of a good relationship with any health care staff member, but Gypsies and Travellers concurred that they found it hard to trust, and that time is required. often heightened by previous knowledge of serious illness such as meningitis in a Gypsy or Traveller child in the wider community. Any refusal of a request for an immediate appointment or failure to receive a thorough examination can easily be perceived as a sign of discrimination, further fuelling mistrust. Extreme anxiety can lead to angry and hostile styles of communication, which in turn can lead to staff resentment, and a cycle of communication breakdown can ensue. Gypsies and Travellers are particularly anxious that they won’t be taken seriously, and revealed a perception that most health practitioners fail to understand their fears and also fail to understand their cultural beliefs and ‘social rules’, such as strong adherence to privacy, hygiene, and avoidance of shame, for example, by not discussing ‘women’s matters’ in front of men or children.8

Commonly encountered health issues

Culturally safe healthcare provision

The Department of Health is committed to social inclusion and has identified Gypsy and Traveller communities as one of the priority vulnerable groups in the Inclusion Health agenda. In the document Inclusion Health14 the challenges for practitioners are recognised: Many practitioners (especially in non-specialist settings) lack awareness, skills and training to cope effectively with the most excluded. In many mainstream settings, there is a tendency to focus on treating the immediate presenting symptoms rather than supporting recovery and sustained behaviour change. Specialist practitioners often work in isolation and feel undervalued, and can lack the support networks and supervision to deal effectively with high-need clients.

Meanings attributed to health and illnesses vary according to different cultural beliefs and these beliefs will influence patient interaction with health staff. However, effective intercultural communication and culturally competent healthcare provision requires more than knowledge of cultural beliefs and ‘social rules.’ Indeed it can be culturally insensitive to claim such knowledge and act according to stereotypical assumptions rather than seeking to understand and respect the person as an individual. Helman emphasises the importance for practitioners to understand the patient’s social background, hopes, fears and expectations in addition to their cultural background to contextualise patients’ explanations of ill-health.9 Practitioners need an empathic focus on the patient’s perspective and meaning, with the aim of facilitating partnership and being reflexive and self-aware in order to perceive how they are experiencing and interpreting a patient’s experience, and how the patient in turn perceives them, to achieve successful intercultural communication.

The most common health issues requiring health advice and/or medical intervention are maternity care and child health. Many other conditions which are commonly encountered and prevalent among Gypsies and Travellers, but not necessarily presented as needs, are bereavement and health-damaging methods of dealing with mental pain, anxiety and depression, diabetes, angina, respiratory conditions and arthritis. As trust is gained, some of the common conditions mentioned, for which help may not readily be sought, will be confided and appropriate support and advice can be given. However an important role for nurses, and one of the most common needs, is for advocacy to facilitate access to healthcare.

The role of primary care nurses in providing inclusive healthcare

Practitioners therefore require good management support and supervision to enable them to provide inclusive healthcare to these vulnerable communities. There has been patchy provision of dedicated services for Travellers across the UK over the past three

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FEATURE

decades but there is now an increasing onus for such provision as emphasised in the Primary Care Service Framework: Gypsy & Traveller communities:15 “This PCSF is not about providing different or separate services for Gypsies and Travellers; rather, it is about ensuring that these communities can access the same high quality, mainstream primary care services as everyone else. It may be used to assist PCTs to design new services where none exist or to adapt or frontend existing ones to make them accessible to these groups.” In addition to multiple complex health issues, the need for continuity and trust in a culturally aware practitioner, often a health visitor, is another reason for a dedicated service for Gypsy and Traveller communities. It is important to work in partnership and to engage in outreach with the communities with the aim of tackling health inequalities, and to ensure inclusivity. One example where this has been successful is in Leicester City PCT. A specialist health visiting for Gypsy and Traveller families was established here 15 years ago following identified need in local research revealing poor uptake of preventative services.16 The primary aim of the team is to visit all Gypsies and Travellers to help them access healthcare and to give advice and support in health-related matters. The trust invested by the Gypsies and Travellers in the health visitor and her team over time was a factor in their motivation to participate in developing a health ambassadors scheme. Participation was the key element in this project, with community members fully involved in the choice of project, consulted at every stage and generating their own ideas so that the project was community led. Full details can be read in the report17 but in addition to achieving the original aims of raising awareness of Gypsy and Traveller culture and health needs among healthcare staff, there was an extra capacity-building element. Ambassadors reported that the increased self-confidence in their encounters with health staff and other agencies as a result of the training sessions extended to other areas of their lives, and several spoke of feeling more capable and less in awe of people who they had previously felt inferior to. It is important for staff to be aware of and collaborate with local and national Gypsy and Traveller organisations who work with and on behalf of their communities, and who often employ their own outreach peer support workers. These organisations include the Irish Traveller Movement in Britain (ITMB),18 Friends, Families of Travellers (FFT),19 and Derbyshire Gypsy Liaison Group (DGLG).20 All of these, and several others, have produced educational health resources such as DVDs, leaflets, and booklets in partnership with and for Gypsy and Traveller communities. Some have also produced resources aimed at health care and other professionals to help them understand Gypsies and Travellers culture and social situation. Although the challenges are many in providing healthcare to Gypsy and Traveller communities, the goals are achievable, and to work in participation with these communities is a rewarding experience.

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References 1. Parry G, Van Cleemput P, Peters J, et al. The Health Status of Gypsies and Travellers in England: a population based study. J Epidemiol Community Health 2007;61(3):98-204. 2. Department of Health and Children. All Ireland Traveller Health Study. 2010. Available at: www.dohc.ie/publications/aiths2010/ExecutiveSummary/AITHS2010_SUMMARY_LR_All.pdf. 3. Baker, M. Gypsies and Travellers: Leeds Baseline Census 2004-2005. Leeds: Leeds Racial Equality Council; 2005. 4. Lewis G, Drife J. Why Mothers Die 1997-1999: The Confidential Enquiries into Maternal Deaths in the UK. London: RCOG; 2001. 5. Communities and Local Government. Progress report by the ministerial working group on tackling inequalities experienced by Gypsies and Travellers. 2012. Available at: www.communities.gov.uk/publications/ planningandbuilding/mwgreporttravellers 6. Van Cleemput P, Parry G, Thomas K, et al. The health-related beliefs and experience of Gypsies and Travellers: a qualitative study. J Epidemiol Community Health 2007;61(3):205-10. 7. Van Cleemput P. Gypsies and Travellers accessing primary health care. Sheffield: University of Sheffield; 2008. 8. Van Cleemput P, Thomas K, Parry G et al. The Health Status of Gypsies and Travellers in England: A Report of Qualitative Findings. 2004. Available at: www.shef.ac.uk/scharr/sections/ir/ library/publications.html. 9. Helman C. Culture, Health and Illness (4th ed). New York: Arnold; 2001. 10. Ramsden I. Teaching cultural safety. Nurse Prax N Z 1992;85(5):21-3. 11. Polaschek NR. Cultural Safety: a new concept in nursing people of different ethnicities. J Adv Nur 1998;27:452-7. 12. Anionwu E, Sookhoo D, Adam J. Foundation Module. Section 3. Models of Transcultural Care in Transcultural health care practice: An educational resource for nurses and health care practitioners Eds. Husband C, Torry B. Available at: www.rcn.org.uk/resources/transcultural/ foundation/sectionthree.php 13. Bolton G. Reflective Practice. London: Sage; 2005. 14. Social Exclusion Task Force. Inclusion Health: improving primary care for socially excluded people. 2010. Available at: www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_114067 15. NHS PCC. Primary care service framework for Gypsies and Travellers. NHS Primary Care Contracting. 2009. Available at: www.library.nhs.uk/ COMMISSIONING/ViewResource.aspx?resID=316159. 16. Anderson E. Health concerns and needs of traveller families. Health Visitor 1997; 70:148-50. 17. Van Cleemput P, Bissell P, Harris J. Pacesetters Programme Gypsy, Roma and Traveller core strand Evaluation Report for the Department of Health. 2010. Available at: www.shef.ac.uk/polopoly_fs/1.43553!/file/ Final-full-Pacesetters-report-edited-with-photos-May-2010.pdf. 18. Irish Traveller Movement in Britain. Available at: http://irishtraveller.org. uk/services/health-wellbeing-project. 19. Friends, Families and Travellers. Available at: www.gypsy-traveller.org/ your-family/health. 20. Derbyshire Gypsy Liaison Group. Available at: www.dglg.org/ publications/health-publications.

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