Gypsy and traveller guide

Health Needs Assessment of the Gypsy and Traveller Community in Bedfordshire (excluding Luton)

Authors

Stephanie Bennett Specialist Health Visitor NHS Bedfordshire

Melanie Hamilton-Perry

Social Worker Ormiston Children and Families Trust

Grateful thanks Lucy Smith for designing the project leaflet

Acknowledgements Zara Abass, Community Development Worker, Bedfordshire and Luton Mental Health and Social Care Partnership Trust Ann Bailey, Traveller Liaison Officer, Central Bedfordshire Jacqueline Bolton, Programme Development Manager, Gypsies and Travellers, Children and Young People. Ormiston Children and Families Trust Venessa Callum, Design and Publishing Coordinator, NHS Bedfordshire Mark McEnteggart, Design and Publishing Assistant, NHS Bedfordshire John Souter, Service Manager, Ormiston Travellers’ Initiative (Cambridgeshire) Martin Westerby, Public Health Manager, NHS Bedfordshire Simon Willis, Royal Crown Derby

Contents Page Summary

1

1. Background

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1.1 Inequalities in Health 1.2 Inequalities in ethnicity 1.3 Inequalities in Accommodation 1.4 Inequalities in employment 1.5 Inequalities in education 1.6 Strategic Context

2. Project 2.1 Project Aim 2.2 Project Objectives

3. Method 3.1 The Project Paperwork 3.2 The Assessment 3.3 Recruitment 3.4 Data Collection

4. Findings 4.1 Quantitative Results

7 7 8 8 8 9

13 14 14

15 16 16 17 17

19 19

4.1.1 Time taken 4.1.2 GP Registration 4.1.3 Family History 4.1.4 Existing Health Conditions 4.1.5 Problem Areas 4.1.6 Problem Issues Within Areas 4.1.7 Actions Taken 4.1.8 Outcomes 4.1.9 Referrals

4.2 Qualitative Results 4.2.1 Finance 4.2.2 Homeless 4.2.3 Discrimination and Respect 4.2.4 Understanding 4.2.5 Speech 4.2.6 Knowledge 4.2.7 Memory 4.2.8 Not Feeling Heard or Understood 4.2.9 Skills 4.2.10 Support and Advocacy 4.2.11 Cultural Traits 4.2.12 Care Pathway

5. Discussion 5.1 Quantitative Information

19 20 21 21 24 27 28 29 31 33 33 33 34 34 35 35 35 36 36 37 37 38

39 39

5.1.1 GP Registration

39

5.1.2 Family History 5.1.3 Existing Conditions 5.1.4 Problem Areas

40 40

5.1.5 Actions 5.1.6 Outcomes

5.2 Qualitative Information 5.2.1 Professional understanding of Gypsy and Traveller life

40 44 44 46 46

6. Conclusions and Recommendations

51

7. Next Steps

54

Appendix 1

62

Project Boundaries, Constraints and Key Assumptions Boundaries Constraints - Client interface Constraints - Organisational Interface Key Assumptions

Appendix 2

Referral Pathway and Routes

62 64 64 65

66

Appendix 3

69

Appendix 4

71

Appendix 5

72

Appendix 6

73

Appendix 7

74

Joint Working Protocol Example of Risk Log Crown Derby Plate Issues within Assessment Areas (Crown Derby Plate)

Health Needs Assessment Paperwork Health Needs Assessment Form Referral Interagency Form Risk Assessment Form Closed Issue Summary Sheet

74 75 76 77

Appendix 8

78

Appendix 9

79

Health Needs Assessment Leaflet Exit Strategy Leaflet

Appendix 10

80

Appendix 11

82

Appendix 12

94

Appendix 13

101

Static and Improved Issue with Health Need Barriers Voiced by Clients Barriers Seen by Professionals Mind Maps- Understanding Peoples Lives Knowledge Beliefs Attitudes Social Context of Life (Adults) Social Context of Life (Children) Social Context of Life (Work) Influences of Behaviour Understanding Existing Behaviour

Appendix 14 Case Studies

AB Case Study CD Ormiston Case Study

101 102 103 104 105 106 107 108

109 109 112

List of tables Table 1

Communities identified as vulnerable groups in Bedfordshire

9

Table 2

Count of Gypsy and Traveller Caravans

11

Table 3

The project team

15

Table 4

Data collection fields

18

Table 5

Conditions likely to affect achievement within the five national outcomes for children

21

Table 6

Existing conditions mentioned more than once

22

Table 7

Existing conditions by mental health and related problems

23

Table 8

Existing conditions by developmental and related problems

23

Table 9

Existing conditions by circulatory and related problems

23

Table 10

Existing conditions by respiratory and related problems

23

Table 11

Existing conditions by behavioural and related problems

23

Table 12

Health needs scored before and after intervention

25

Table 13

Areas of health need scored before and after intervention

26

Table 14

Number of issues scored before and after intervention

27

Table 15

Summary of action taken

28

Table 16

Benefits secured by benefit type

29

Table 17

Positive and negative outcomes by service area

30

Table 18

Proposed Action Plan to meet recommendations

54

Table 19

Potential target areas for a social marketing pilot

57

List of diagrams and figures Diagram 1

Wider determinates of health

13

Diagram 2

Professional understanding of Gypsy and Traveller life

47

Diagram 3

Social Marketing Planning Framework

60

Figure 1

Total Gypsy/Traveller seen by gender

19

Figure 2

Total Gypsy/Traveller seen by age group

19

Figure 3

Total Gypsy/Traveller seen by ethnic group

19

Figure 4

Clients by type of accomodation

20

Figure 5

Number of clients registered with a GP

20

Figure 5a

Number of clients requiring assistance to register with GP

20

Figure 5b

Type of GP registration

20

Figure 6

Existing condition in living parent or sibling not taking part in project

21

Figure 7

Areas of health need by the number of times identified as a problem

24

Figure 8

Numbers of clients referred by agency

31

Figure 9

Reasons for failure to take up referrals

32

Summary Of the estimated 300,000 Gypsies and Travellers in the UK, most have life, work and travelling histories extending back 500 years. Distinct communities include Romany Gypsies, Roma, Scottish Travellers, Welsh Travellers, Irish Travellers, New Age Travellers, Bargees, Show People and Circus People1. The main communities in Bedford Borough and Central Bedfordshire are Romany Gypsies and Irish Travellers with small numbers of Show People.

Gypsies and Travellers suffer inequalities in health outcome, access to health services and the social determinants of health1,2,3,4,5,6,7,8,9,10 As a result, they are a national and regional imperative15 and have been highlighted as one of nine vulnerable groups around which NHS Bedfordshire will seek to develop and deliver services that address their physical and psychological needs11. Gypsies and Travellers are invisible within national, regional and local health data systems and the numbers living in Bedfordshire (excluding Luton) are not known. A rough estimate, taken from Department of Communities and Local Government figures of caravan counts, puts the minimum numbers of Gypsies and Travellers in Bedfordshire (excluding Luton) between 526 and 3685, which include a minimum of 360 school aged children. Using a multi agency approach with defined objectives, the numbers of Gypsies and Travellers could be more accurately estimated, although there would always be difficulties quantifying those in housing and those who preferred not to be identified.

In late 2008, Public Health, Government Offices East of England provided £15k toward a one year project designed to assess local Gypsy and Traveller health need and highlight, capture and address health issues voiced by Gypsy and Traveller clients taking part. The systematic nature of individual health needs assessments was designed to identify • what the community could do for themselves • what barriers existed to accessing services • what gaps existed in personal health knowledge • what gaps existed in service provision • the relationship, if any, between the wider determinants of health and health need Facilitated access to services and advocacy, where required, was designed to overcome any perceived barriers, raise client awareness and highlight reasons for previous non engagement together with strategies necessary to ensure continued access. More importantly, Gypsies and Travellers would be assisted to create pathways to enhance their health and health outcomes, using mainstream services and NHS Bedfordshire would gain in depth knowledge and insight to inform policy, strategy development and operational implementation of interventions designed to improve the community’s health.

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Project Aim To identify the nature and extent of health issues among local Gypsies and Travellers and address their wider determinants of health, providing support for families, engaging with the communities and individuals and signposting to interventions designed to prevent illness and provide effective treatment and care.

Project Objectives March 2009 to March 2010 • To identify and address health need from the client’s perspective to empower them and improve any low self worth that might exist • To identify the nature and extent of health issues and gain insight into what “motivates and moves” Gypsies and Travellers • To identify client’s perceived barriers to accessing health care, overcome/highlight any actual barriers and understand the reasons for non-engagement with services where this exists • To enable greater access to primary care services and increase numbers registered temporarily or permanently with a GP • To improve the understanding of Gypsies and Travellers about their own health and what services are available to help them • To create and facilitate links to existing services invisible to/not used by Gypsies and Travellers • To highlight issues and make recommendations for addressing health inequalities amongst Gypsies and Travellers

March 2010 to September 2010 • To inform health professionals and commissioners about Gypsy and Traveller health issues • To identify health champions who will, in time, create a pathway to interventions previously unknown or perceived by the community as inaccessible • To provide evidence to support Commissioning in developing interventions and outcome measures for issues identified It is acknowledged that, by the nature of the project, Gypsies and Travellers who could deal with their problems and issues and happily accessed statutory services, were not likely to take part. However, the project attempts to gain genuine insight into the life of those Gypsies and Travellers who do struggle and are therefore most likely to suffer the worst inequalities of health. It is hoped to gain a fuller understanding of their behaviour and, from this, suggest possible ways to improve their health and wellbeing.

A project team was established in October 2008 led by the Specialist Health Visitor (Gypsies and Travellers) NHS Bedfordshire. The team had representation from Central Bedfordshire Unitary Authority, Bedford and Luton Mental Health and Social Care Partnership NHS Trust, Ormiston

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Children and Families Trust and two members of the Gypsy and Traveller Community. A specific visual health needs assessment tool and explanatory leaflet were devised on the advice of the two community members as literacy levels among Gypsies and Travellers are poor.

Assessment was divided into twelve areas; accommodation, scholar (education), health, emotional well being, access to health services, family, support, discrimination, confidence, money and safety and other.

A total of 178 clients (66 men and 112 women) were assessed within 65 family units and 27 children 0-19 years required no further action. Of the 178 assessed, 101 were age 0-19 years, 56 were aged 20-59 years and 11 were aged 60-89 years. 10 people chose not to give an age. 94 clients lived in Central Bedfordshire (South), 56 in Central Bedfordshire (North) and 28 in Bedford Borough. The 178 participants included homeless people, those on privately owned and Local Authority sites and 46 clients in housing.

Gypsies and Travellers exhibited the health conditions found routinely in society. 21 living parents or siblings of the clients assessed had heart conditions and 13 had died of Cancer. The average age of death among siblings and close family was 65 years, bearing similarities to literature citing life expectancy among Gypsies and Travellers as 10-12 years less than the UK norm of 81.5 years.

A third of clients citing existing conditions had mental health and related problems and 20% of children had one or more condition likely to affect their ability to achieve within the five national outcomes for children13 .

All but the homeless among the community had permanent registration with a General Practitioner and therefore access to primary care services but not all used it. Nevertheless permanent GP registration provides an essential base from which necessary health improvement can begin to be addressed and should be as available to the homeless as to those in settled accommodation.

Accommodation was a prerequisite to accessing all other statutory services and, in some cases, caused health issues with the homeless suffering the worst inequalities in health and experiencing the worst difficulties accessing health. The project identified that Gypsy and Traveller problems spanned all the wider determinants of health with accommodation, education and employment being the highest priority.

In addition they had health problems and difficulty accessing services and benefits.

One agency cannot hope to address these health inequalities alone. The project has been successful in securing positive outcomes in accessing accommodation, education, benefits and health services, together with uptake of health interventions. This proves what can be done using a multi agency approach with suitable advocacy and support services built in. However, in future, NHS Bedfordshire’s input needs to concentrate on psychological and physical health (including prevention) in line with their Operational Plan14.

The project has demonstrated that accessing health services requires thorough assessment of individual situations, which is the key to identifying and addressing health need and could continue to be carried out using the techniques of the project, incorporating outreach geographical targeting. Assessment of need identified more issues than clients presented with and was the cornerstone of addressing health inequalities.

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There were 338 problems within twelve assessment areas. 175 were improved through intervention, 130 remained static, and 33 were unknown either because the client moved away or because an outcome was in progress. None were made worse.

Within the 338 problems there were 438 issues. 236 issues were improved through intervention. 154 remained static and 48 were unknown either because families moved away or because an issue was in progress. None were made worse.

663 actions were taken over a six month period and produced far more positive than negative outcomes. Positive outcomes were achieved in housing, benefits, education, health and access to services. Negative outcomes within housing were largely due to the eviction process over which Health has only limited influence.

Many clients did not understand the process they were going through (57) and in 5 cases organisational systems completely disempowered the client. The outcome for this was the need for advocacy, support and co-ordination (41). While a negative outcome from the client’s point of view because they would have preferred to be able to manage, resulting action produced positive benefit.

For children 0-19 years 3 referrals were made to social services, 14 children were found to be Children in Need and 4 required completion of a common assessment framework. Community Health Services (23) and Ormiston Children and Family Trust (19) received the largest number of referrals followed by the Ethnic Minority Achievement Service (9), Voluntary Services (8) and Community Development Worker (7). Uptake of referrals was excellent, 74 versus 13, with almost half the defaulters having reasons totally beyond their control. However, many clients required help, support, advocacy and co-ordination to undertake the process of referral.

Nursing was perceived as a helpful rather than a controlling agency and many Gypsies and Travellers expressed regret that health personnel rarely visited. At present, responsibility for health assessment is spread across gateways to individual services and tends to be service specific rather than holistic in a curative and preventative sense. While this approach may suit those able and willing to access services, the project has shown it may not be the most effective approach for the socially excluded.

Working in partnership with clients, using honesty and enquiry, rather than assumption as the basis of assessment and identifying problems from the client’s viewpoint and in their priority order, built trust. Trust will open doors but co-ordinated support and advocacy is required to address the remaining barriers of discrimination and difficulties in communication, poor understanding, memory, literacy and knowledge.

Ensuring benefits are received and maintained where appropriate and addressing low confidence through enabling or facilitating clients to be understood should build their self esteem and worth. However, advocacy and support needs consumed time and were more effectively delivered by specialist services.

Many factors contributed to the Gypsy and Traveller community having difficulties accessing services across health, accommodation, education, employment, water, sanitation and benefit. Poverty, homelessness, discrimination (perceived and actual), poor understanding,

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literacy, knowledge and memory, difficulties in communication, the need for support and advocacy and not feeling heard, all negatively affected access to health services and health outcomes. However, it was cultural / traditional traits that exerted the most influence within the lives of Gypsies and Travellers.

Cultural beliefs, knowledge, attitudes and the social context of life and work influence behaviour and create behavioural challenges within any socially excluded community. However this project has resulted in a deeper understanding of Gypsy and Traveller behaviour and demonstrated that, with the right approach, headway can be made in ensuring improved uptake of preventative interventions. Given the resistance of many Gypsies and Travellers to preventative health care and the difficulty found by some professionals in engaging with the male members of the community12, social marketing may be a suitable approach to prevention.

Based on a deep understanding of the person and their behaviour, social marketing (applied effectively) can deliver measurable impact on people’s behaviour and has been used to improve health and reduce health inequalities. Combined with the introduction of Health Champions from the community itself and involving all stakeholders surrounding the community, the concept could be piloted on one health intervention to evaluate and measure outcomes and cost effectiveness for future use.

Recommendations • Ensure that all commissioned services are able to provide ethnic breakdown which includes Romany Gypsies and Irish Travellers as identifiable ethnic groups and includes the option of Traveller or Gypsy in ethnic monitoring forms.

• Ensure that homeless people across the county have equality of access to full GP services.

• Ensure a multi agency approach is adopted to address the wider determinants of health, health access and health outcomes. Include an agreed and standardised approach to unauthorised encampments across the county, accommodation support services and coordinated outreach from Health and the Ethnic Minority and Traveller Achievement Service (EMTAS).

• Support the need for strategic planning to find solutions for the likely negative effects on Gypsy and Traveller children of Raising of the Participation Age in education.

• Include highly mobile Gypsy and Traveller issues within the NHS Bedfordshire’s Health and Homeless Steering Group.

• Identify named nurses in each geographical location with responsibility for assessment of Gypsies and Travellers, co-ordinated by a lead nurse who would be part of the multi-agency group. OR • Provide a replacement nurse to continue working with the Gypsy Traveller Community in line with the suggested actions and outcomes recommended in this report.

• Commission extra capacity from a voluntary advocacy organisation using pooled budgets to speed up effective outcomes.

• Develop and provide training for Provider Services about Gypsies and Travellers, preferably including members of the Gypsy and Traveller communities, to reduce the number of assumptions made and lessen the effect of stereotypical views.

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• Ensure Gypsies and Travellers feature in all equality and diversity training.

• Develop culturally competent health improvement programmes for Gypsies and Traveller adults and children • Develop culturally specific health education material, with the help of Gypsies and Travellers, in addition to securing that already produced in other areas.

• Ensure that pertinent health literature is in “easy read” format.

• Identify a Health Champion from within the Gypsy / Traveller Community to work with that community.

• Use a social marketing pilot to address one preventative health issue and evaluate the possibility for future use of this method in health improvement.

• Recognise common issues and solutions across all identified vulnerable groups and design service specifications across all marginalised groups to achieve economies of scale.

References 1. Matthews, Z (2008). Better Health Briefing 12. The Health of Gypsies and Travellers in the UK. A Race Equality Foundation Briefing Paper.

Communities and Local Government. Race Equality Foundation.

2. Parry, G. Van Cleemput, P. Peters, J. Moore, J. Walters, S. Thomas, K and Cooper, C. (2004). The Health Status of Gypsies and Travellers in England. Sheffield. University of Sheffield.

3. Morris R and Clements L. (2001). Disability Social Care Health and Travelling People. Traveller Research Unit. Cardiff.

4. G. Parry et al (2007). Health status of Gypsies and Travellers in England. Journal of Epidemiology and Community Health.

5. Bhopal R (1997). Is research into ethnicity and health racist, unsound or important science? British Medical Journal. 314:1751.

6. Power, C (2004). Room to Roam: England’s Irish Travellers. London. Community Fund.

7. Cemlyn S. (2008). Human rights and Gypsies and Travellers: an exploration of the application of a human rights perspective to social work with a minority community in Britain. British Journal of Social Work. 38 153-173.

8. Warrington, C. (2006). Children’s Voices: Changing futures. The Views and Experiences of Young Gypsies and Travellers. Ipswich. Ormiston Children and Families Trust.

9. Greenfields, M. (2008). Exploring Gypsies and Travellers Perceptions of Health and Social Care Careers: Barriers and Solutions to Recruitment Training and Retention of Social Care Students. Buckingham New University.

10. Clark, C and Greenfield, M. (2006). Here to stay: The Gypsies and Travellers of Britain. Hatfield. University of Hertfordshire Press.

11. NHS Bedfordshire (2009a). A Healthier Bedfordshire – Working with you for life. Delivering our Strategic Plan 2009-2013. Bedfordshire PCT. 12. Egbutah, C. (2010). Participatory Health Needs Assessment of Gypsies, Roma and Travellers in Luton (Un-published).

13. Department for Schools Children and Families (2008). Every Child Matters.(http://publications.everychildmatters.gov.uk accessed 09.03.10 14. NHS Bedfordshire (2009b). NHS Bedfordshire Operational Plan 2009/10. NHS Bedfordshire.

15. Department of Health (2009). Transforming Community Services: Ambition, Action, Achievement. Transforming Services for Health, Well-being

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1. Background Of the estimated 300,000 Gypsies and Travellers in the UK, most have life, work and travelling histories extending back 500 years. Distinct communities include Romany Gypsies, Roma, Scottish Travellers, Welsh Travellers, Irish Travellers, New Age Travellers, Bargees, Show People and Circus People1. The main communities in Bedford Borough and Central Bedfordshire are Romany Gypsies and Irish Travellers with small numbers of Show People. Family and extended family are central to life, providing necessary support systems with children highly valued2,3.

Department of Health advocates improving services, developing service providers and aligning systems to transform health and wellbeing and reduce inequalities4. Three common principles of successful approaches to enhancing access to care and reducing inequalities include: • Targeting populations thought to have high need • Working with targeted communities to develop approaches, services and systems to address need • Strategic planning across health, housing, social services, education, benefits services, employment services and voluntary sector, police and probation.

1.1 Inequalities in Health Gypsies and Travellers suffer inequalities in outcome, access to services and wider determinants of health. They have the same illnesses and problems as the general population, significantly poorer health status than the lowest socio economic UK population group5 and their life expectancy is poorer across age ranges than the settled population6. Gypsies and Travellers have a life expectancy of 10-12 years less than the UK life expectancy of 81.5 years and Gypsy and Irish Traveller women are 20 times more likely to have experienced the death of a child7. Literature finds that they may be excluded from many potential solutions by inadequate health promotion material8, poor literary skills, fear5, competing priorities, enforced mobility, transport and poor time keeping9, inflexible systems, pressure to reach targets10 and discrimination, marginalisation, lack of trust and low expectations on the part of agencies1. Distance exists between the community and professionals across many areas including understanding, beliefs, attitudes and culture11.

1.2 Inequalities in ethnicity Warrington12 found that children in Cambridgeshire described their ethnic identity as unrecognised by the settled community some of whom refused to accept it as a birth right. They had experienced having to hide their identity unless it was safe to share. Romany Gypsies and Irish Travellers were recognised as a minority ethnic group in The Race Relations Act 1976 but have yet to be included, in their own right, in Census information1.

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1.3 Inequalities in Accommodation Children loved the freedom and stimulation of travelling but acknowledged the difficulties of enforced mobility12. Constant eviction left them feeling unsettled and insecure and a lack of basic utilities was a problem. The eviction process seemed pointless and unnecessary to children, creating more problems than it solved. Children learned, through experience, that they were not wanted by the settled society. Many housed children cited racism from neighbours in the form of verbal and physical abuse. The contents of verbal abuse were blatantly untrue but illustrated a stereotypical viewpoint. Living in a Trailer attracted similar racism; ignorance of Traveller lifestyle and culture playing a large part. Experience of bullying and racism defined the characteristics of being a Traveller and led to an expectation of discrimination even though government legislation13 made racism toward the community a criminal offence. Actual and perceived racism also reduced children’s ability to access amenities used by the settled population. Living in the moment was a means of offsetting the stress that this and other inequalities caused12.

1.4 Inequalities in employment Work within the community centres on family self employment, targeting gaps within mainstream provision14, however professionals and Gypsy and Traveller community members cite similar barriers to those expressed by children when exploring health and social care careers15. Discrimination and racism lead to low expectations and ambition. Family responsibilities, attitudes, gender roles, cultural and literacy issues, evictions and lack of knowledge all contribute to the avoidance of such careers14.

1.5 Inequalities in education It is acknowledged that the Ethnic Minority and Traveller Achievement Services in Bedford Borough and Central Bedfordshire Unitary Authorities work hard to support and integrate Gypsies and Travellers into mainstream education. However, the struggle between schooling and “learning the Traveller way” persists, with the former perceived by some as a means to assimilation.2,10,16,17,18 Social control and assimilation could be said to describe UK Traveller policies since the 1960’s with the overriding emphasis on altering the fundamental lifestyle of Gypsies and Travellers and the Travelling culture by forcing them to settle in one place19. Secondary or Upper School is a major drop out point for Gypsy and Traveller children. Expectations of racism and bullying, the need to undertake caring family roles, a curriculum at odds with learning a family trade and parenting perceptions of negative peer influences fuel non attendance12. Children want to learn but personal, familial and environmental issues prevent this happening12. Young housed Gypsies and Travellers not in education also have their difficulties, compounded by neighbourhood harassment and isolation from family/ community support11..

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1.6 Strategic Context The NHS in the East of England has set out its collective vision to be measurably the best health service in England. NHS Bedfordshire’s strategic plan to deliver Regional vision20 identifies four aims one of which relates to reducing unfairness in health and reducing health inequalities. The plan recognizes that marginalised or vulnerable communities have poorer health, poorer access to healthcare and die earlier than others. “NHS Bedfordshire has undertaken to focus effort on developing and delivering services that address the diverse physical and psychological health needs of those communities and groups experiencing the most serious health inequalities and will develop primary and community based service capacity to ensure that these vulnerable communities and groups have equitable and improved access to all healthcare services.�21 Following on from the requirements for Primary Care Trusts to identify the health needs of vulnerable groups within their locality as stated in Pledge 9 of The East of England Commissioning Framework 2007-2009, Gypsies and Travellers are highlighted as one of nine communities identified as vulnerable groups within Bedfordshire21 (Table1) and they can also be found within the other groups mentioned.

Table 1: Communities identified as vulnerable groups in Bedfordshire

Gypsies and Travellers People who misuse drugs and alcohol People with mental ill health including dementia People with long term disabilities or conditions People from black and minority communities Homeless people and rough sleepers Migrant workers and Refugee communities Looked after children and pregnant teenagers and their children Offenders including those at HMP Bedford

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Gypsies and Travellers are identified as a core priority within the NHS Bedfordshire’s Health Inequalities Action Plan and the contextual framework for work with Gypsies and Travellers was contained within a Public Health Project Implementation Document (2008-2009) which aimed to: • Develop comprehensive care pathways to address health needs and reduce health inequalities • Support Gypsies and Travellers to recognise and address their own individual health needs, including preventative measures, while facilitating effective engagement with generalist and specialist mainstream services An original health needs assessment of the Gypsy and Traveller community across Central Bedfordshire, delivered a strategic overview picture of need but did not include Bedford Borough9. The assessment highlighted the invisibility of the Gypsy and Traveller community within health provider data collection systems making any quantification of needs impossible. Even though many Gypsies and Travellers in the local area would be entitled to specific ethnic status, they appear under category “White Other” in most ethnic monitoring data and cannot be further identified.

Table 2 shows information as provided by Department of Communities and Local Government. This counts only caravans so the number of Gypsies and Travellers in Bedfordshire is unknown. What can be seen is that the number of caravans is increasing. Caravans can accommodate between 1 and 7 depending on circumstance so in the summer of last year there may have been between 351 and 2457 Gypsies and Travellers across the county. If, as is suggested, half the Traveller population are housed19 , an additional 175-1228 can be added. There are currently 360 school-aged children acknowledging themselves to be Gypsies or Travellers, across Bedfordshire (excluding Luton). This is a minimum number as some prefer not to be recognised to offset possibility of bullying.

In late 2008, Public Health, Government Offices East of England contributed £15k towards a one year project designed to assess local Gypsy and Traveller health need and highlight, capture and address health issues voiced by Gypsy and Traveller clients taking part. The systematic nature of individual health needs assessments would identify: • What the community could do for themselves • What barriers existed to accessing services • What gaps existed in personal health knowledge • What gaps existed in service provision • The relationship, if any, between the wider determinants of health and health need Facilitated access to services and advocacy, where required, was designed to overcome any perceived barriers, raise client awareness and highlight reasons for previous non engagement together with strategies necessary to ensure continued access. More importantly Gypsies and Travellers would be assisted to create pathways to enhance their health and health outcomes using mainstream

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services and NHS Bedfordshire would gain in depth knowledge and insight to inform policy, strategy development and operational implementation of interventions designed to improve the community’s health.

A project report containing process, outcomes and recommendations was to be submitted to NHS Bedfordshire Commissioning and Public Health East of England and subsequently would be summarized to form a training package for professionals of all agencies. The project ran between March 2009 and March 2010, with a five month start up between October 2008 and March 2009.

Table 2: Count of Gypsy and Traveller Caravans

Authorised sites (with planning permission)

Unauthorised sites (without planning permission)

No. of Caravans Region

Count

Bedford Unitary Authority

July 2009 Jan 2009 July 2008 Jan 2008 July 2007 Central July 2009 Bedfordshire Jan 2009 Unitary July 2008 Authority Jan 2008 July 2007

No. of gypsies on sites on gypsies own land

No. of Caravans on sites on land not owned by Gypsies Not Tolerated tolerated 0 8 0 3 0 0 0 0 0 0 0 3 0 0 0 0

Total

Private

Tolerated

0 0 0 0 0 184 167 167

0 0 0 0 0 33 1 0

Not tolerated 0 0 0 0 0 36 53 52

66

151

1

57

0

0

275

65

111

1

40

0

0

217

Socially Rented 1 21 29 22 22 22 66 66 69

All caravans 29 32 22 22 22 322 287 288

Source: Department of Communities and Local Government 2008

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References 1. Matthews, Z (2008). Better Health Briefing 12. The Health of Gypsies and Travellers in the UK. A Race Equality Foundation Briefing Paper.

Communities and Local Government. Race Equality Foundation.

2. Kiddle, C (1999). Traveller Children: A Voice for Themselves. London. Jessica Kingsley.

3. Saunders, P. Clarke, J. Kendall, S. Lee, A. Lee, S and Matthews, F. (eds) (2000). Gypsies and Travellers in Their Own Words. Leeds. Leeds Traveller Education Service.

4. Department of Health. (2009). Transforming Community Services: Ambition, Action, Achievement. Transforming Services for Health Wellbeing and Reducing Inequalities. London. Department of Health.

5. Parry, G. Van Cleemput, P. Peters, J. Moore, J. Walters, S. Thomas, K and Cooper, C. (2004). The Health Status of Gypsies and Travellers in England. Sheffield. University of Sheffield.

6. Morris R and Clements L. (2001). Disability Social Care Health and Travelling People. Traveller Research Unit. Cardiff.

7. G. Parry et al (2007). Health status of Gypsies and Travellers in England. Journal of Epidemiology and Community Health.

8. Bhopal R (1997). Is research into ethnicity and health racist, unsound or important science? British Medical Journal. 314:1751.

9. Bennett, S.L. (2004). The Health Needs of Gypsies and Travellers in Bedfordshire Heartlands Primary Care Trust. Unpublished.

10. Power, C (2004). Room to Roam: England’s Irish Travellers. London. Community Fund.

11. Cemlyn S. (2008). Human rights and Gypsies and Travellers: an exploration of the application of a human rights perspective to social work with a minority community in Britain. British Journal of Social Work. 38 153-173.

12. Warrington, C. (2006). Children’s Voices: Changing futures. The Views and Experiences of Young Gypsies and Travellers. Ipswich. Ormiston Children and Families Trust.

13. Race Relations (Amendment) Act (2000). http://www.opsi.gov.uk/acts/acts2000/ukpga_20000034_en_1. Accessed January 2010 14. Webster, L and Millar, J (2001). Making a Living: Social Security, Social Exclusion and New Travellers. Bristol. Policy Press.

15. Greenfields, M. (2008). Exploring Gypsies and Travellers Perceptions of Health and Social Care Careers: Barriers and Solutions to Recruitment Training and Retention of Social Care Students. Buckingham New University.

16. Clark, C (1997). “Educational space” in the European Union: social exclusion or assimilation of Gypsy/Traveller children. Social Work in Europe. 4 (3) 27-33.

17. DES, (2003). Aiming High: Raising the Achievement of Gypsy Traveller Pupils. London. Department for Education and Skills.

18. Derrington, C and Kendall, S. (2004). Gypsy Traveller Students in Secondary Schools: Culture, Identity and Achievement. London. Trentham Books.

19. Clark, C and Greenfield, M. (2006). Here to stay: The Gypsies and Travellers of Britain. Hatfield. University of Hertfordshire Press.

20. NHS Bedfordshire (2009a). A Healthier Bedfordshire – Working with you for life. Delivering our Strategic Plan 2009-2013. Bedfordshire PCT. 21. NHS Bedfordshire (2009b). NHS Bedfordshire Operational Plan 2009/10. NHS Bedfordshire.

12

2. Project Phase 1: March 2009 to March 2010 • Gaining deeper insight into the local Gypsy and Traveller community, their health needs, including the wider determinants of health1 (see diagram 1), behaviour and any barriers that exist in accessing health care.

• Producing a “scoping and insight” report of the local Gypsy and Traveller community taking part in the project.

• Using findings to make recommendations for addressing health inequalities within the Gypsy Traveller community.

Phase 2: March 2010 to September 2010 • Translating recommendations into intervention activities and outcomes • Communicating the project results to wider stakeholders to encourage joined up strategy development for commissioning of services which positively influence future health behaviour within the local Gypsy Traveller community.

S oc i Indi al vi

Agriculture and food production

Water and sanitation

ons diti

Education

Unemployment

community n d an al lifestyle e f du

n co

Work environment

s ork tw tors ac

G e ne ral so

-

ral and e nvi , cultu c i ron m o n m Living and working o e ec conditions

al nt

cio

Diagram 1: Wider determinates of health

Health Care Services

Housing

Source: Dahlgren and Whitehead, 19911.

13

2.1 Project Aim To identify the nature and extent of health issues among local Gypsies and Travellers and address their wider determinants of health, providing support for families, engaging with the communities and individuals and signposting to interventions designed to prevent illness and provide effective treatment and care.

2.2 Project Objectives March 2009 to March 2010 • To identify and address health need from the client’s perspective to empower them and improve any low self worth that might exist • To identify the nature and extent of health issues, gain insight into what “motivates and moves” Gypsies and Travellers • To identify client’s perceived barriers to accessing health care, overcome/highlight any actual barriers and understand the reasons for non-engagement with services where this exists • To enable greater access to primary care services and increase numbers registered temporarily or permanently with a GP • To improve the understanding of Gypsies and Travellers about their own health and what services are available to help them • To create and facilitate links to existing services invisible to or not used by Gypsies and Travellers • To highlight issues and make recommendations for addressing health inequalities amongst Gypsies and Travellers.

March 2010 to September 2010 • To inform health professionals and commissioners about Gypsy and Traveller health issues • To identify health champions who will, in time, create a pathway to interventions previously unknown or perceived by the community as inaccessible • To provide evidence to support Commissioning in developing interventions and outcome measures for issues identified.

Project boundaries, constraints and key assumptions are shown in Appendix 1.

References

1. Dahlgren G, Whitehead M (1991). Policies and Strategies to Promote Social Equality in Health. Stockholm: Institute of Future Studies.

14

3. Method A project team was established in October 2008, (see table 3) led by the Specialist Health Visitor (Gypsies and Travellers) NHS Bedfordshire, to undertake a scoping and insight report on the health needs (including wider determinants of health) of as many of the local Gypsy and Traveller community as wished to take part in the project. A member of the community agreed to design a project leaflet and was closely involved with the wording because many Gypsies and Travellers are known to have poor literacy skills. Bullet points were used in preference to sentences and the message kept short on her recommendation. She could not commit to becoming a permanent part of the team but her input was invaluable. It was anticipated that there would be an initial three month period during which the Ormiston project worker and project assistant would be recruited, organisational policies and procedures ratified and paperwork designed. A development manager from Ormiston, who was from the Travelling community, would assist the process. Clients would be recruited during the following six months and the last three months would be used to wind down involvement, transfer live cases to mainstream services, adopt any other exit strategies necessary and write the project report. The process required to recruit personnel and design paperwork took six months rather than three and an extension of three months was agreed with Public Health, East of England. The Traveller Liaison Officer went on long term sick leave after six months and the Community Development Worker had three months of sickness in the middle of the project. Referral pathway and routes (Appendix 2) were agreed together with a joint working protocol (Appendix 3). A project plan was agreed using the One Page Project Management Tool1. Organisational policies were scrutinised to ensure fitness for purpose and the project team met monthly for the first nine months and two weekly in months 13 and 14. Relevant training in Safeguarding Children, Vulnerable Adults and Gypsy Traveller Law was attended by the project group before engagement with the community. An ongoing risk log was maintained to highlight potential pitfalls and keep the project on track. Example at Appendix 4.

Table 3: The project team

Programme Development Manager (0.5 WTE for 4 months) Ormiston Children and Families Trust Gypsy Liaison Officer (0.2 WTE for 6 months)

Central Bedfordshire (previously Bedfordshire County Council)

Community Development Worker (0.2 WTE) Senior Practitioner - Advocacy (0.2 WTE for 9 months) Specialist Health Visitor (project lead) (1 WTE) Service Manager Project Assistant (0.5 WTE) Design and Publishing Coordinator (1 WTE for 3 weeks)

Bedford and Luton Mental Health and Social Care Partnership NHS Trust Ormiston Children and Families Trust Public Health, NHS Bedfordshire Ormiston Children and Families Trust Public Health, NHS Bedfordshire Public Health, NHS Bedfordshire

15

3.1 The Project Paperwork Ormiston’s previous experience working with Gypsies and Travellers in Cambridgeshire had highlighted the benefit of using a visual health needs assessment tool to engage interest and provide a focus for assessment. A circle of health incorporating twelve assessment areas was superimposed onto a Royal Crown Derby plate design (Appendix 5). The assessment headings used words familiar to Gypsies and Travellers such as ‘accommodation’ rather than ‘house’ and ‘scholar’ rather than ‘education’. A basic measurement of movement between Happy Middle and Sad was incorporated into the plate to capture the level of client measured progress at the beginning and end of an episode. The plate design was favoured by the Gypsies and Travellers and permission was sought and given by Royal Crown Derby for its use. Each section heading had corresponding issues encompassing safeguarding assessment frameworks, risk assessments and the wider determinants of health for both adults and children (Appendix 6).

The remaining paperwork consisted of a form for recording assessments, referring within the team, recording risk assessment and closing episodes of care (Appendix 7). In addition the leaflet (appendix 8), designed by a member of the Gypsy Traveller community was used to advertise the project in conjunction with verbal explanation. An attempt was made to supplement the leaflet with a small business card of information but this could not be aligned correctly without external printing for which there was no budget.

3.2 The Assessment The health needs assessment was designed to blend both qualitative and quantitative information2 to encompass complex human experiences, behaviour and characteristics while providing specific measurable health data on as many Gypsies and Travellers as possible. In so doing an attempt was made to identify and quantify need while understanding the barriers Gypsies and Travellers face when trying to improve their health. Snowball sampling (introduction by existing participants) was the preferred means of attracting clients to the health needs assessment. This is an acceptable research sampling method for populations difficult to access3, however it can lead to selection bias. Although the findings of the assessment are not able to be generalised, they allow a greater insight into an otherwise closed community and provide the basis for identifying the behavioural change necessary in both Gypsies and Travellers and professionals to improve Traveller health.

Potential clients were given an explanation of the project and the simplified leaflet (Appendix 8) describing the project and were offered the choice of taking part or being signposted immediately to mainstream service provision. All chose to take part in the project and understood that it was for a limited time after which they could approach the Specialist Health Visitor for help but were likely to be transferred to mainstream or voluntary services. Assessment was carried out by the Specialist Health Visitor. Initially it was not possible to gauge whether recruitment would be fast or slow. Strategies were agreed for either eventuality. In reality there were always more requests for help than time to deal with them. Although waiting list criteria were agreed as part of the planning process, the presenting

16

issues were often complex and at crisis point so morally and ethically could not be postponed. Cases were juggled between the Specialist Health Visitor and Senior Practitioner, Ormiston, with the latter taking on the more complex cases involving a lot of advocacy and support.

3.3 Recruitment The project recruited clients with ease. No advertising was necessary - all self referred once word got round that help was available. This challenges the accepted stereotypical view of Gypsies and Travellers being a closed community unwilling, for many legitimate reasons, to engage with health services. 27 (all children) of the 178 assessed had no issues requiring input. More women than men asked for assessment, which is illustrative of women’s caring and problem solving role within the family and community. Nevertheless, 66 males were accessed of which 15 were adults. In addition 46 housed clients were assessed – a previously hidden population. Details are contained in section 4 (Findings).

3.4 Data Collection Information was recorded on a spreadsheet. Initially it was thought a database would be more useful to retrieve outcome data efficiently. However, the IT experience could not be found within the time allotted and the fields that might have been required have only recently become clear. The spreadsheet, while being cumbersome, time consuming to extract data from, and difficult to relate between fields, has highlighted where significant improvements could be made. Data was held on an NHS secure networked computer and an encrypted laptop with password protection to the files. Data collection fields were recorded as shown in table 5. Minutes were kept of all meetings held. The Project Assistant worked out and produced referral pathways and routes from individual elements supplied by the Specialist Health Visitor and collated relevant information about services, external statutory and voluntary agencies and charities, resources suitable for Gypsies and Travellers and referral forms. She also designed and produced a small information leaflet, suitable for keeping in a purse, with names and numbers of useful agencies as part of the project exit strategy (Appendix 9). The Traveller Liaison Officer supplied external material suitable for Gypsies and Travellers.

17

Table 4: Data collection fields

General Name Age Date of Birth Ethnicity Type of accommodation Geographical area

Assessment Area of concern Issues within area Before and after measurement for area and issue

Family History Existing conditions within close family (mother, father, siblings, children) Death by cause: mother, father, children, siblings Age at death

GP Registration GP practice Existing GP registration Assistance required with registration Registration type

Referrals Common Assessment Framework Child in Need or in need of protection Social Service Referrals Referrals made to Primary Care by agency Referrals made to Secondary Care by agency Uptake of referrals Reasons for non attendance

Action Requested action Action taken (with action summary) Outcome (with outcome summary) Hours taken to resolve episode of care

Barriers Barriers seen Barriers voiced

General Impressions Professional Mind Map Understanding People’ Lives Case Study

References

1. Campbell CA (2007). The One Page Project Manager. New Jersey. John Wiley & Sons.

2. Polit D.F. and Beck C.T. (2004). Nursing Research Principles and Methods. 7th Ed. London. Lippincott Williams and Wilkins.

3. Cormack D (2000). The Research Process In Nursing. Oxford. Blackwell Science.

18

4. Findings female

4.1 Quantitative Results

male Figure 1: Total Gypsy/Traveller seen by gender

NG

55 (84%) of the 65 families assessed were within Central Bedfordshire UE and 10 (16%) in Bedford Borough UE. In part this represents the greater number of Gypsies and Travellers living within Central Bedfordshire, but it is also a reflection of the greater need found within this area.

10

11

0-19 Figure 2: Total Gypsy/Traveller seen by age group

White Gypsy

White British

Welsh Gypsy

Traveller

Romany Gypsy

Romany

80 70 60 50 40 30 20 10 0

Irish Traveller

4.1.1 Time taken 1129 hours were spent on client related activities (30 weeks WTE) with travelling as extra. While apportioning travelling times to individual client was found to be too intricate, the cost of mileage should not be underrated. Start up time took the project lead 6 months in addition to other duties and the project team 1 day a month for 6 months. It took 2 months to reconcile data and write the report and a further one month to publish.

20-59

Gypsy

The numbers of Gypsies and Travellers in housing is unknown and it might be thought that they would have little difficulty accessing help. This appeared to be a false assumption. Lack of ability, understanding, literacy, information and trust played a much greater part, creating difficulties in addressing health inequalities across all areas.

56

101

English Gypsy

Figure 3 shows the ethnic make up (as defined by clients) of those assessed. Figure 4 shows the type of accommodation clients inhabited. Of particular interest are the 46 clients in housing.

60-89

English Traveller

178 clients, all of whom self referred, were assessed within 65 family units and 27 children 0-19 years required no further action. 66 (37%) clients were men and 112 (63%) women (Figure 1). The age ranges covered are shown in figure 2.

66

112

Figure 3: Total Gypsy/Traveller seen by ethnic group

19

80 70 60 50 40 30 20 10 0

46 NO

132

UE

PS

H

APP

LA

Unauthorised Encampment (UE)

Awaiting Planning Permission (APP)

Authorised Private Sites (PS)

Local Authority Site (LA)

YES

Figure 5: Number of clients registered with a GP

53

Housed (H)

NO

Figure 4: Clients by type of accomodation

125

4.1.2 GP Registration Figure 5 shows 132 clients already registered with a GP and 46 not registered. Most of those not registered were among the highly mobile with no fixed abode. 53 clients wanted help to access a GP, 125 did not, (Figure 5a). The discrepancy between those not registered and those requiring help applied to those changing area and requiring local knowledge.

Figure 5b shows the type of registration given. All highly mobile Gypsies and Travellers were given temporary registration only. The 6 with unknown registration were in an adjoining county. The largest numbers within GP practices tended to follow the distribution of local authority sites at Timberlands (Caddington Surgery) Potton, (Potton Surgery), Kempston Hardwick (Kempston and London Road surgeries)and Chiltern View (Edlesborough surgery). However there was also good use of Salisbury House Surgery in Leighton Buzzard.

20

YES

Figure 5a: Number of clients requiring assistance to register with GP

6 126

None

46 Temporary Permanent

Figure 5b: Type of GP registration

4.1.3 Family History Figure 6 shows conditions present in a living parent or sibling of adult clients recruited to the project. Relatives already taking part in the project were excluded. 21 had heart conditions, 17 arthritis, 6 mental health problems and 3 congenital conditions (Down’s Syndrome, Phenylketonuria, Congenital Adrenal Hyperplasia) with 8 other single conditions.

Heart Conditions

17

Congential Problems

21 3

6

Mental Health Problems Arthritis

Figure 6: Existing condition in living parent or sibling not taking part in project

The highest cause of death among parents and siblings of clients recruited to the project was Cancer (13) followed by heart conditions (8), miscarriage/stillbirth (4), emphysema (3) and accident (3). Average age of death was 64 years.

4.1.4 Existing Health Conditions Each client assessed was asked about their existing health conditions and 80 clients mentioned problems. 20 (20%) children 0-19 years had one or more condition likely to affect their ability to achieve within the five national outcomes for children1 (see table 5), where superscript numbers denote the number of children with the condition. Table 6, shows the range of conditions. 15 (27%) of 56 clients aged 20-59 years cited depression as an existing illness and 10 (71%) of arthritis sufferers were 60 years or over. 4 (50%) of those suffering hypertension were under 60 years with 2 being in the 35-45 year age range, one of whom had already had a stroke.

Table 5 Conditions likely to affect achievement within the five national outcomes for children

ADHD3 Autism Asthma2 Behaviour2/ASBO

SEN8 Learning difficulty Slow development Facial paralysis/enteral feeding Speech3 Squint2

Congenital condition4 Mental Health Condition Kidney problems Heart condition Bilateral slipped epiphyses

21

Table 6: Existing conditions mentioned more than once

Existing Conditions Depressed Arthritis Ante Natal Hypertension Congenital Condition

17 13 9 8 7

Anaemia Angina Cataract Chronic Kidney Disease Stage 4 COPD

3 3 2 2 2

SEN Poor Memory Learning Difficulties Statement Heart Condition Asthma PH Domestic Violence Mental Health Condition Dumb Back Problem ADHD

6 5 4 4 4 3 3 3 3 3

Diabetes Ex smoker Panic Attacks Physical Disability Post Natal Speech Difficulty Squint Stroke Violent Outbursts Wears Glasses

2 2 2 2 2 2 2 2 2 2

Of the 80 clients citing an existing condition and correcting for dual diagnosis, 30 (37%) had mental health and related problems, 25 (31%) had development and related problems , 24 (30%) had circulatory and related problems, 8 (10%) had respiratory and related problems and 7 (9%) had behavioural and related problems (tables 7 to 11 overleaf ).

22

Table 7: Existing conditions by mental health and related problems

Depressed Mental health condition Panic attacks Violent outbursts Anxiety Breakdown Court order for ASBO Nervous tick Not coping Stress

17 3 2 2 1 1 1 1 1 1

Table 8: Existing conditions by developmental and related problems

SEN Poor memory Learning difficulties statement speech difficulty Squint Deaf Development problems Literacy problems Dyslexia Hearing problem Poor understanding

Table 9 Existing conditions by circulatory and related problems

6 5 4 2 2 1 1 1 1 1 1

Hypertension Heart condition Angina Stroke Coronary artery bypass graft Intermittant claudication Thrombosis PH Warfarin therapy Obesity Diabetes

8 4 3 2 1 1 1 1 1 2

Table 11: Existing conditions by behavioural and related problems

ADHD Autism Behaviour problems Hyperactive Poor concentration

3 1 1 1 1

Table 10: Existing conditions by respiratory and related problems

COPD Asthma Bronchiolitis Permanently runny nose

2 4 1 1

23

4.1.5 Problem Areas Figure 7, shows the twelve areas of health need under which clients were assessed. Together with the number of times each area was cited as a problem. 338 problem areas were identified with the top five being Scholar (24%), Accommodation (22%), Access (20%), Health (13%) and Money (11%).

Figure 7: Areas of health need by the number of times identified as a problem

Scholar (80)

Family (6)

Accomodation (74)

Safety (6)

Access (67)

Support (6)

Health (44)

Other (5)

Money (37)

Emotional Well-being (10)

24

Discrimination (1)

Using a simple measure of sad, medium and happy, of the 338 problem areas 130 remained static, 175 were improved through intervention and 33 were unknown either because the client moved away or because an outcome was in progress. (Table 12). None were made worse. When improvements were broken down by health need area (Table 13) most success can be seen in Access, Money and Family, with Accommodation and Emotional Well-being almost evenly split between stasis and improvement. The main areas remaining static were Scholar, Accomodation and Health.

Table 12: Health needs scored before and after intervention

Health needs scored before intervention

Health needs scored after intervention

Total

Static Health Need

Sad

Sad

94

94

Medium

Medium

18

18

Happy

Happy

18

18

Sad

Happy

141

147

Sad

Medium

27

27

Medium

Happy

7

7

Sad

Ongoing

18

18

Sad

Not known

5

5

Medium

Ongoing

4

4

Not known

Not known

6

6

Total

338

130

Improved Health Need

175

Not Known

33

25

Table 13: Areas of health need scored before and after intervention

Health need remaining static

Areas of health need Remaining sad

Remaining medium

Remaining happy

Scholar

30

11

6

Accommodation

35

1

Access

6

3

Health

12

3

Money Emotional Wellbeing

Health need improved by intervention Sad to happy

Sad to medium

Medium to happy

47

19

7

2

36

24

7

2

11

44

3

2

49

10

25

13

2

1

16

4

4

25

4

29

4

4

3

1

4

Family

5

1

6

Safety

4

Support

1

1

1

Other

1

1

4

Confidence

1

1

26

31

4 1

1

3 4

Discrimination Total

28

1 94

18

18

130

141

27

1 7

175

4.1.6 Problem Issues Within Areas Within each health need area, there were many issues totalling 438 across the twelve assessment areas (Table 14). 236 issues were improved through intervention, 154 remained static and 48 were unknown either because families moved away or because an outcome was in progress. None were made worse.

Table 14: Number of issues scored before and after intervention

Issues scored before intervention Sad

Issues scored after intervention Sad

Total

Static Health Need

109

109

Medium

Medium

22

22

Happy

Happy

23

23

Sad

Happy

187

187

Sad

Medium

39

39

Medium

Happy

10

10

Sad

Ongoing

29

29

Medium

Ongoing

6

6

Sad

Not known

12

12

Happy

Not known

1

1

Total

438

154

Improved Health Need

236

Not Known

48

Areas of Scholar, Accommodation, Access and Money recorded the greatest issues (Appendix 10). Within Scholar, improvements were made in “education” (7) ”school access” (11) and “literacy” (8). However in 40 cases “literacy” remained static. Within Accommodation, “eviction” (22) and “homelessness” (25) were the highest static issues; however “homeless” (15) also featured as the highest improvement with “into accommodation” (11) a close second. Within health, 22 clients remained smokers. However just over half of these were sad to be that way so there is potential for movement forward. 64 clients were helped to access primary care services and 6 helped to access secondary care. 4 people were referred to smoking cessation (not shown) but the outcome is unknown. Within the area of Money most improvement was recorded within the benefit section (34) - (Appendix 10).

27

4.1.7 Actions Taken Actions taken, (Table 15) through the project, numbered 663 over a six month period and were divided into identifying health need, direct client action, additional action, clerical and client led action. Identifying health need (218) and Clerical work (192) recorded the highest number of actions. However there was also a substantial amount of direct client action (131) and additional action (118) in the form of advocacy (28), co-ordination (26), support (14) and liaison (50). Form completion (62) and Giving Information (44) were the highest sections within Direct Client Action. A small number of actions were client led. All clients were encouraged to carry out actions where they felt comfortable doing so. They also decided if action should be taken when a problem was identified.

Table 15: Summary of action taken

Action Identifying health need Assessment Re-assessment Accompanied visit Sub Total Action Direct action with client Listening Clinical Giving information Driving theory Form Completion Transport Sub Total

28

Number of actions taken Additional action required

Number of actions taken

Action

178 10 30 218

Advocacy

28

Coordination

26

Support

14

Liaison

50

Number of actions taken

Sub Total

118

Action

Number of actions taken

8 6 44 7 62 4 131

Clerical Meeting

8

Office

74

Letter

23

Referral

87

Sub Total

192

Client led action No action taken Miscellaneous Total project led action

26 27 4 663

4.1.8 Outcomes Table 16 shows 50 benefits secured with housing benefit (13) and disability living allowance (10) being the highest. There were also 8 successful charity applications. There is a discrepancy of 5 between this chart and benefits sub-total showing on appendix 10, because some benefits were granted during the process of report writing but client feelings have yet to be documented.

Table 16: Benefits secured by benefit type

Benefit Attendance Allowance Carers allowance Child benefit Community Care Grant Crisis loan Child tax credit Disability Living Allowance Employment support allowance Housing Benefit Sub total Healthy start National Insurance Charity TOTAL

Number of benefits secured 4 1 3 4 1 2 10 1 13 39 2 1 8 50

Table 17, overleaf, shows positive and negative outcomes by service area. In some cases, an action led to more than one outcome and in others, more than one action was required to achieve an outcome for the client. Within housing, the project achieved 55 positive outcomes that would otherwise have been added to the 66 negative outcomes, because the clients helped by the project felt they were getting nowhere and had nobody else to turn to. Benefits also showed 39 positive outcomes against 7 negative.

Education showed 24 positive outcomes against 18 negative ones; however the eviction process, over which health has limited influence, accounted for half of the negative outcomes. Positive improvements in Health (71), excluding action planning (61) vastly outnumbered negative outcomes (8). Many clients did not understand the process they were going through (57) and in 5 cases organisational systems completely disempowered the client, resulting in the need for actions in advocacy, support, co-ordination

29

and liaison (118). While a negative outcome from the client’s point of view because they would have preferred to be able to manage, subsequent action produced positive benefit. There were 11 negative outcomes when clients managed their own problems but 35 positive outcomes. Overall the project secured 210 positive client related outcomes. There were only 8 outcomes of non engagement and 7 failed to progress. In 14 cases the client moved away before completion.

Table 17: Positive and negative outcomes by service area

EDUCATION Evicted - negative educational outcome Driving theory not completed Schooling not attended Attended education facilities Driving theory mock passed Secured educational related improvement CLIENT Did not understand process Required advocacy, support coordination and liaison Client led negative results System disempowers client Miscellaneous negative

30

9 1 8 17 5 2

57 118 11 5 1

Client led positive results

35

Secured identity related improvement Miscellaneous positive

10 3

HOUSING Remaining Homeless Evicted Refused planning Site Provision through project Secured housing related improvement Housed through project Eviction postponed Eviction prevented Attended housing facilities BENEFITS Refused benefits Awarded benefits CHARITY Awarded charity Refused charity

35 30 1 17 14 9 12 2 1

7 39

8 3

GENERAL Pending actions Moved away Failure to progress Client non - engagement HEALTH Evicted - negative health outcome Chlamydia screening refused

13 14 7 8 8 2

Plan of action for family Secured health related improvement Attended health facilities Chlamydia screening requested Client led cervical screening Healthy birth

61 23

Continuity of care out of area Client heard by services Hospital admission Secured safety related improvement

4 4 2 3

18 7 5 5

4.1.9 Referrals For children 0-19 years 3 referrals were made to social services, 14 children were found to be Children in Need and 4 required a common assessment framework completed in order that they might meet their 5 national outcomes1. Community Health Services (23) and Ormiston Children and Family Trust (19) received the largest number of referrals (figure 8) with Traveller education (9), voluntary services (8) and community development worker (7) coming next. The total number of referrals excludes the 3 social service referrals already mentioned. Uptake of referrals (chart 17) was excellent 74 versus 13. Five of the 13 failing to take up referrals had reasons beyond their control (Figure 9). All but one of the nine secondary referrals was taken up and the reason for this was a sibling having been admitted to hospital in another area.

Figure 8: Numbers of clients referred by agency

Community Health Services (23)

Education (4)

Ormiston (19)

Housing (5)

Traveller Education (9)

Multi Agency Allocation Group (2)

Voluntary Services (8)

Mental Health Services (2)

Community Development Workers (7 )

Local Authority (1)

Child Development Centre (4)

31

Figure 9: Reasons for failure to take up referrals

3.0

Service refused referral

2.5 Moved away

2.0 Family illness

1.5

Long waiting list

0.5

No point

32

Professional sickness Competing priorities

Professional sickness

No point

Long waiting list

Family illness

Moved away

Service refused referral

0.0

Offer does not suit client

1.0

Offer does not suit client Competing priorities

4.2 Qualitative Results During the course of the health needs assessment participating clients were asked what, if anything, stopped them getting the service they wanted. In addition professionals logged any barriers seen in the course of work. Barriers voiced and observed were based on families rather than individuals, clustered and reduced into recurring themes and patterns identified. On further examination it was possible to identify that comments made and actions observed in one family were equally applicable to many others. However, the project deadline did not allow the spreadsheet to be revisited and further quantification made, which will affect the depth to which the following comments apply to any individual. Barriers voiced by clients (Appendix 11) included finance, homelessness, perceived discrimination, poor understanding and knowledge, not feeling heard, difficulty speaking or having insufficient vocabulary, lack of skills and the need for support and advocacy. Barriers seen by professionals included cultural traits, actions missing in care pathways, finance, lack of self esteem, discrimination, poor memory, understanding and assumptions (Appendix 12). In addition the lack of confidence, self esteem and self worth that all these barriers induced, led to a helplessness that was continually reinforced and therefore, learned. The barriers voiced and observed are summarised as follows.

4.2.1 Finance All but a few adults were on income support and child tax credit/child benefit, if they had children. Those who worked, generally were self employed and finding work hard to come by. Most had, or had access to, a pay-as-you-go mobile phone regardless of accommodation type – in part this was because of the freedom a mobile phone offered, but also it was a way of controlling spending.

Likewise, the preferred way of paying utilities was by card meter because debt could not be accrued. However service access by phone was expensive, particularly when automated phone systems charge for queuing time. Depending on their service provider, messages and texts had a cost if retrieved. Many who said they could not read well could read a simple text message but would be less likely to access it if it cost them money. If the problem was benefits, it was possible to make free calls from the local Job Centre Plus. However this involved a journey by bus or car which could be as expensive. All local authority run sites required a bus journey to get to Job Centre Plus and only one site had relatively easy access by foot to a GP. Finance and bus timetables were also a problem when required to travel to hospital or clinic appointments. Living in the far east of Central Bedfordshire requires three buses to get to Bedford Hospital, the full cost of which would be significantly more than £12. Similar problems exist travelling from Leighton Buzzard to Luton & Dunstable Hospital.

4.2.2 Homeless Those with no home address were unable to call an ambulance, get legal help for domestic violence, access birth and marriage certificates, receive letters, have “home” visits from services or have continuity of health care. They would sometimes use a “care of” address but often letters would be received late (past the time for action). There were no stopping places for Gypsies and Travellers to access health services when required, although Bedford Unitary Authority is in the process of considering one. Private sites

33

existed but the weekly charge was beyond those on benefits and payment had to be cash in hand. Housing benefit would only cover ground rent - a minimal sum.

Children were unlikely to be able to access schooling, as by the time this was arranged, the family were likely to have been moved on by police, local authority or court order. Parents were also reluctant to allow their children out of sight in case an eviction was carried out suddenly. The more severe the child’s condition, the less likely schooling would be available because of the length of time required to assess suitability and complete procedures. The project found 28 children not receiving education and most of those were due to homelessness.

Although Gypsies and Travellers will often try to stop near or travel around a hospital in the later stages of pregnancy, they found ante natal care difficult to access unless they knew the area. They did not know where GP’s were based, how to get that information or how to be registered. Facilitated access to GP’s on a temporary or immediate and necessary basis was not found to be a problem, however clients were reluctant to attempt this without help as they feared rebuttal.

4.2.3 Discrimination and Respect Lack of respect and discrimination were found to be closely entwined, existing both between the Gypsy and Traveller and settled communities and within the Traveller community itself. Gypsies and Travellers appeared to value respect. Within their separate communities respect for each other, for family life and for those who were ill or had died was a powerful lever. Discrimination, where it existed, acted as a barrier to services either through client perceptions, fears, frustration and prejudices or service policy and practice. Homeless Gypsy and Traveller children who would be in priority need for housing, had no temporary or permanent accommodation suitable for their cultural need for hard standing and local authority sites were invariably full. The expectation that those with a learning difficulty could and would be able to negotiate service pathways set them up to fail and denied them the same access to services enjoyed by others. At best, negative interaction fed perceptions of discrimination even where none was intended.

At worst, fear of discrimination and actual discrimination further distanced Gypsies and Travellers from the services they required.

4.2.4 Understanding Low literacy skills and lack of understanding was a common theme throughout the project and fed the fear and perception of discrimination. As a result, clients would refuse help they needed unless from a trusted source recommended by family or friends. They required advocacy, support and facilitated access until trust and self confidence could be built using a new service. Equally, access to sexual health services for women could only be through a generic worker because then the community would not be able to guess the reason for a visit. Men, however, required a male worker. Some Gypsies and Travellers had difficulty understanding if a problem existed and valued the time to discuss this. For example, where poor behaviour in a child was becoming more obvious and uncontrollable, mothers wanted to talk through the possible causes with someone detached from the situation and whom they trusted. Others found

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questions and lengthy conversations difficult to follow and only took in the first few sentences but would not lose face to controlling agencies by admitting this. They would check understanding several times with an advocate or facilitator, but not with the agency being addressed. Lack of understanding often led to inappropriate action, because consequences were not understood. Actions took priority over words and wrong assumptions could be made. Processes involving paper records, in particular, were difficult to understand because paper had little meaning when literacy skills were poor. Documents had to be retrieved, but clients had no way of knowing how to do this and, if homeless, no address to which they could be sent.

4.2.5 Speech People assume that Gypsies and Travellers speak English therefore no language barrier exists. The project found otherwise. While a form of English was spoken it had a strong dialect involving different words and meanings which decreased the likelihood of Gypsies and Travellers making immediate sense of what was being said to them. While they tried to process one piece of information, they very often lost several sentences and did not get the whole message. It could also be difficult for them to express themselves because they did not have the right words and, rather than lose face, they just did not try, especially in front of a person unknown to them. Alternatively they felt they had expressed themselves perfectly adequately and became frustrated and angry when others kept asking the same questions. They needed extra time to formulate words and found it difficult to cope with automated phone systems that require an immediate response. Questions needed to be precise. “ Where are you living now?” “Where were you living before you moved?” rather than “What is your address?”

4.2.6 Knowledge In a world that functions on the written word, poor literacy reduced the knowledge available to clients. They were unaware of benefit entitlement, beyond the basic income support, or where to get help and information. Equally, if they were homeless and new to the area, they did not know how to access help. Going through the planning process was found to be difficult when literacy was poor and mistakes were easily made. Poor literacy reduced the likelihood of computers being used as a means of information and information leaflets had to contain more pictures than words, together with bullet points rather than a lot of text. Practical knowledge was found more useful than theoretical knowledge. A young mother had struggled for years taking her many children to various hospitals for their complaints. No one had told her she could claim expenses, which were extensive. When told, she still did not have the confidence, communication skills, memory or understanding to do so. However once she was accompanied and walked through the process she was able to manage alone successfully.

4.2.7 Memory The amount of information held in the memory was increased, by necessity, when literacy skills were poor. Therefore, the memory was too full to remember security answers, appointments, applications and replies to letters within a timescale. Things got forgotten and there could be a penalty for this, depending on which agency was involved. Equally, everything took longer when actions needed to be repeated. Combined with poor literacy skills the situation became worse as ways which literate people may use to compensate for memory loss did not help.

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4.2.8 Not Feeling Heard or Understood Clients felt ignored by professionals on several fronts, unless receiving support or advocacy. Not being heard, no action being taken and not being understood were negative experiences and caused them frustration, anger and disillusionment to the extent of apathy. This was compounded by being action orientated, because expectation of immediate action was rarely fulfilled. When the reasons were only half understood, non immediate action was perceived by clients as no action at all. Some clients found themselves being directed in a circular fashion around and within agencies, unable to escape the loop and accomplishing nothing. Some were asked to undertake tasks that they thought were beyond them, but could only voice their fears to a trusted professional because pride would not allow them to lower their guard with anyone else. In reality, the task was not beyond them but they needed to see it being performed first. People with learning difficulties can often accomplish more through a cycle of observation, practice while observed, practice alone and evaluation, than by being told to carry out verbal or written instructions. Many clients felt dismissed, written off, ignored and disrespected. This was made worse if they had poor understanding and listening skills – they felt no one had the time to work through their difficulties with them and be the catalyst that could bring about a solution. However, they were quick to realise that professional intervention often achieved results. Some would watch that experience and use it to alter their own approach while others adopted a learned helplessness.

In addition to not being understood, clients did not understand how to access services, how those services worked or how to work within the required systems and did not know where to go for help. However, their lack of understanding could be portrayed towards service providers as intolerance, anger, confrontation or apathy. The reasons for this appeared to be a complex mixture of poor literacy, difficulties understanding language and processing information, literal thinking which does not transfer to another situation, poor memory, lack of self esteem, low confidence, low assertiveness and fear alongside a pride in their culture and heritage that did not allow them to acknowledge their difficulties for fear of further discrimination.

Professionals made assumptions about failed contact, failed appointments, one size fits all interventions, information in written form, client’s literacy, client’s ability and client’s reactions which resulted in non engagement, miscommunication, mixed messages, further non attendance, unnecessary benefit arrears, eviction and failure to achieve. Equally, clients switched phones without communicating this and then got upset when no one phoned them.

4.2.9 Skills Poor literacy was cited in many cases as a barrier to reaching services, regardless of agency. However, some clients had found ways round this which they did not want to lose. They would ask questions or pretend they had failed eyesight to obtain verbal explanations. Alternatively, if information was written down they did not have to remember it and would use it either to explain their problem or find their way. However they did not disclose inability to read or write, unless asked directly.

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4.2.10 Support and Advocacy Clients were found to need support across all twelve assessment sections. Reduced coping skills was cited, but rarely applied to caring for family or practical duties. It was the interface with agencies that caused the most distress. There was a deep rooted perception that professionals did not understand the Gypsy way / culture and so could not offer the support needed. When support was given by an acceptable person, any subject could be approached and any question asked, provided cultural and personal respect was observed and honesty of approach adopted. Completion of forms and dealing with letters was a major problem and one which often was forgotten or ignored because the task was too complex. Applying for benefit, assuming eligibility was recognised, was beyond most clients. Their experience was that agencies would not offer help so there was no use trying. Alternatively they tried but failed because they did not give enough information or did not answer the questions asked. Similar difficulties were experienced with routine follow up letters. Either clients became distressed unnecessarily or did not comply because they did not understand what was written or the time limits imposed on a reply. One lady was about to be taken to court for an offence she did not commit because she could not read that the charge was against another person who had given her address.

Support was also needed by clients to increase their confidence and reduce fear of professionals. Mostly this was done through advocacy and facilitated access to services, either face to face or by phone. Once clients’ difficulties were explained, they found they received the respect they desired and some were able to carry on alone. Others required lengthy advocacy which is likely to need repeating throughout their lives. Information was required by clients, but it was rarely enough to address all the presenting issues.

Co-ordination and liaison was required to bridge cross area/agency boundaries, facilitate consistent medical care and remind clients what needed to be done.

4.2.11 Cultural Traits The project found that Gypsies and Travellers lived in the moment, juggling competing priorities on a daily basis which made crisis management the norm. This behaviour involved immediate decision making often without the consequences being considered and left little time for trying to understand or process an alternative point of view. This was made worse if the consequences had been forgotten or not been understood in the first place. As a result, responses could be late; problems dragged on and could be ignored until they had to be faced or until it was too late.

Family and community were the two highest priorities within Gypsy and Traveller lives, closely followed by accommodation. Some moved into houses, not necessarily because they wanted to but because there was no alternative. Life, death and caring duties within the community took priority over personal needs or personal health and work was similarly placed. People could be hard to contact and appointments not be kept due to family commitments. Professional help for caring duties was often refused, regardless of the stress felt and there could be a cultural resistance to inpatient care, either at hospital or residential home. A woman could not discuss gender related personal problems with a male professional or vice-versa and a woman caring for a man (unless husband and wife) could not undertake personal care. As caring duties were invariably the role of women, elderly gentlemen living alone and in

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failing health could be difficult for the family to help. One woman had struggled with incontinence, because a male nurse had been present at her initial assessment so she could not disclose her problem.

Respect from the Gypsy Traveller viewpoint included non interference in another community member’s life. It was not acceptable to come between partners, so practical help and support was given to domestic abuse sufferers (including asking for professional help) but stopped short of personally intervening in the abuse, or being seen to involve the police. The latter actions were seen as disrespectful. Temporary accommodation was a barrier to some fleeing domestic violence. There was a distrust and cultural aversion to shared accommodation with shared bathing facilities. To some it was seen as unclean. Family members exerted influence over others not to leave the community, while certain clients could not deal with living in a “house� and the lack of freedom this afforded to the children. Refuge accommodation was limited, according to the number and age of children and it was rarely used. Gaining entrance to necessary services was found to be difficult without help and support, which the family could not offer. The process of benefit reorganisation, securing accommodation, consulting a solicitor and ensuring safety was lengthy and stressful, particularly in an unknown area and with little family support 4.2.12 Care Pathway There was a pride in community observed, which was perpetuated through folklore, traditional practice, family influence and reluctance to mix socially outside the community. Professionals who were respectful, non judgemental, willing to understand, accept and respect traditional values (regardless of personal viewpoint) and ask, rather than assume, could engage easily and achieve results, as the project has shown. However, there was no mainstream case worker/lead professional within Provider Services with responsibility for family assessment among Gypsies and Travellers, unless a child under 5 years was involved. In this case, assessment was conducted by a Health Visitor from the nearest geographical team. However, there were occasions when facilitating access to a GP was thought to be the only action required if a family were roadside. The needs of an individual child could be assessed without addressing the family difficulties impinging on the situation. Perceived non engagement, rather than increasing professional efforts, decreased contact and the problems continued. Clients could find themselves stuck in the middle while services passed responsibility to each other. They were unable to co-ordinate the totality of their own care needs although could take responsibility for precise tasks in small numbers. Older people within the community were found to manage with what they had, rarely questioning entitlement, because they did not know who to ask.

References

1. Department for Schools Children and Families (2008). Every Child Matters. http://publications.everychildmatters.gov.uk accessed 09.03.10

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5. Discussion The health needs assessment was designed to blend both qualitative and quantitative information9 to encompass complex human experiences, behaviour and characteristics while providing specific measurable health data on as many Gypsies/Travellers as possible. In so doing, an attempt was made to identify and quantify need while understanding the barriers Gypsies and Travellers face when trying to improve their health. Snowball sampling (introduction by existing participants) was the preferred means of attracting clients to the health needs assessment. This is an acceptable research sampling method for populations difficult to access10, however it can lead to selection bias.

The findings of the assessment are not able to be generalised, however they allow a greater insight into an otherwise closed community and provide the basis for identifying the behavioural change necessary in both Travellers and Professionals to improve Traveller health.

The project recruited clients with ease. No advertising was necessary - all self referred once word got round that help was available. This challenges the accepted stereotypical view of Travellers being a closed community unwilling, for many legitimate reasons, to engage with health services.

It is acknowledged that, by the nature of the project, Gypsies and Travellers who could deal with their problems and issues and happily accessed statutory services, were not likely to take part. However, the project attempts to gain genuine insight into the life of those Gypsies and Travellers who do struggle and are therefore most likely to suffer the worst inequalities of health. It is hoped to gain a fuller understanding of their behaviour and, from this, suggest possible ways to improve their health and wellbeing.

5.1 Quantitative Information 5.1.1 GP Registration This was only a major problem among the homeless Gypsies and Travellers, in particular those with chronic or acute conditions.

Immediate and necessary or temporary registration did not allow continuity of care, but was made necessary by the movement on process adopted by Unitary Authorities. Movement on is often necessary when Gypsies and Travellers park their caravans on land belonging to another person or organisation. Civil or criminal powers can be used to evict an unauthorised encampment depending on circumstance. Sometimes contravention of planning law is also an issue. A short period of time could sometimes be negotiated, depending on the reaction of the local community and/or geographical situation of the encampment. However, trying to secure health care within a short time frame required cross county advocacy, support, liaison and co-ordination, which was not immediately available from geographically based mainstream services. Number 2 Goldington Road and the Walk in Centre at Putnoe could help if clients were camped in Bedford Borough. However they would not be useful for the rest of the county, unless operating outreach services. It has been found1 that Gypsies and Travellers are more likely to use Accident and Emergency than local GP’s because the reception they received is perceived superior.

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5.1.2 Family History The main conditions featuring most amongst parents and siblings of those assessed were heart disease and arthritis, but the highest cause of death was cancer, followed by heart disease and miscarriage/stillbirth. The average age of death was 64 years. The sampling method and sample size do not allow definite conclusions to be drawn from this information. However, literature cites the life expectancy of Gypsies and Travellers to be 10-12 years less than the average, with higher rates of heart disease and infant mortality2.

The absence of cancer in existing conditions may be a combination of the Travelling community’s discretion about confidential information and unwillingness to mention the word or obtain a diagnosis. Knowing the diagnosis can be perceived as reducing time left1.

5.1.3 Existing Conditions Just under half the clients assessed had existing health conditions (80). Arthritis appeared again although mostly confined to those aged 60 and over. Clients put this down to working in the fields when younger. However 27% of those aged 20-59 years (15) also cited depression with mental health and related problems forming 30% of existing conditions. It has been suggested that barriers to accessing health services and high levels of bereavement may contribute to poor mental health in Gypsies and Travellers3. The project identified domestic abuse as another potential factor. The nature of the mental health needs of Gypsies and Travellers has been investigated it was concluded that co-ordination of services across agency and geographical boundaries should address the social and economic factors contributing to their need4. 24% of those citing existing conditions had development related problems.

However, this is likely to be an underestimation, as literacy problems were picked up in assessment that had not been identified by clients initially. Of the 20 children with conditions likely to affect their ability to achieve within the five national outcomes for children, all required help, support and advocacy from the project that they had not been able to access via any other means. The reasons for this were homelessness, lack of knowledge about available services, poor literacy, no continuity or co-ordination via a key worker and services, with low expectations of Gypsies and Travellers, operating in vertical silos. If people cannot achieve on any front, self confidence can be lowered and learned helplessness is a possible outcome.

5.1.4 Problem Areas Education (Scholar) The word ‘Scholar’ has been used instead of education because it has a more relevant meaning to the Gypsy and Traveller community. While scholar was the highest problem area, it was the one most impervious to improvement. All adults wanted their children to learn how to read and write but this seemed to become less important as the child got older. There was a resignation about literacy among the parents, which lowered their expectation of children. They considered they had found ways around poor literacy and, with a few notable exceptions, did not want to attempt any more work in this area. They had found literacy skills difficult or impossible to learn or could only work at primary level. However, they could see that lacking these skills made it harder to get on in life. Schooling invoked negative feelings for them, so it was easy for children, particularly young men,

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to take advantage of this. Literacy was not considered to be fun, had little practical use and required concentration and time commitment to improve. It was therefore a low priority.

Two exceptions were the young boy who wanted more help with his literacy, which he recognised as a problem, but had just changed to Upper School and did not think his difficulties had been identified in Middle School. A phone call showed that he was correct in his assumption and got him extra help immediately. His mother had not known how to address the problem and did not feel able to approach the new school direct. Her attentions were taken up caring for a disabled daughter. There is now dialogue between mother and school. Another exception was the great-grandmother who had always wanted to improve her literacy skills, but had never known how to go about it. After an unpromising start she joined an adult literacy class. She had been expected to sit a written test, with youngsters the age of her grand children, that she had felt unable to complete. Subsequently she had to reach a room via stairs, when she required disabled access. In both cases advocacy and support resulted in a positive outcome.

Accommodation Although accommodation came second to scholar in the problem areas, its effect pervaded all other areas. Certain patterns were noticed from the stories told. Homelessness, in the form of unauthorised encampments, can make local residents unhappy and attract negative media attention, which then feeds public protest about intended new site provision and reduces the likelihood of this happening speedily. Negative media attention nurtures and legitimises discrimination, which can lead to social exclusion and eventual retaliation from the Gypsies and Travellers, who can then either behave in an anti social way because they are angry, frustrated and fearful of the settled population or exploit flaws in the planning system which leads to further public unrest. Either way the cycle of discrimination is perpetuated.

Public policy over a number of years (Appendix 13)has fostered lack of accommodation, reducing the likelihood of stable education and exacerbating poor literacy and communicating skills, negative emotions, low self worth, low self esteem and lack of confidence among Gypsies and Travellers when dealing with the settled community. Accessing services, of which local people generally are the gate keepers, becomes a seemingly impossible task. Negative experiences in dealing with services can create mistrust and suspicion, with reduced engagement and fear of assimilation, reinforcing in Gypsies and Travellers the possible benefit of social exclusion. Fear of assimilation, also heightens the need to retain cultural traits, traditions and values while resisting new ideas.

Enforced mobility can split families, create safety issues and reduce support options. Homelessness, or lack of suitable accommodation, can also adversely affect health and emotional well being by creating practical access difficulties, competing priorities and reinforcing resistance to new ideas. Money, in the form of benefits, cannot be obtained without an address and alienation from education reduces the likelihood of applying for benefit. However, with appropriate and culturally sensitive help,

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co-ordination, advocacy and support, some success in addressing need is possible as the project illustrates. Creating pathways to accommodation was more problematic, due to the lack of hard standing and cultural resistance to housing. However, those who wanted to be housed were successfully supported through a process they did not understand and could not negotiate.

Several evictions were postponed to ensure health care needs were met in part. Gaining access to housing required professional advocacy, support, information, co-ordination and considerable interview and travelling time.

Case studies 1 and 2 (Appendix 14) illustrate the difference accommodation can make to an individual. Supporting People have recently (February 2010) employed Luminus Oak Foundation to supply a floating support service for Gypsies and Travellers (accommodated and roadside) which will cover housing and benefit issues. This was first highlighted by the Specialist Health Visitor (Public Health) as a need over three years ago and illustrates the time required to obtain services for the community.

Securing additional sites for accommodation and renovation of existing sites make equally slow progress. Additional barriers voiced by clients and observed by professionals captured deeper issues, although still reflecting the underlying influences of culture, traditions, education and discrimination.

Access and Health These were the next most problematic areas. However, bias has occurred within the health needs assessment tool which has split Health from Access to Services but placed health issues in both areas. Improvement was recorded in many access areas that were health related including treatment from consultant paediatricians(3), hospital admission (2), hospital referral (8), vaccinations (7), Chlamydia screening (7), midwifery care (5), dental care (11).

26 out of 72 (36%) adults admitted to smoking and three had already given up due to health problems. Although 23 clients remained smokers, just over half were sad to be that way, so potential may exist for forward movement in this area. Four people were referred to smoking cessation services, the outcome of which is not yet known. Sexual health screening was considered important among the women but was not a subject a female professional would normally talk about with men, other than through women. 4 women had accessed screening themselves and a further 7 people were helped to do so, including one male.

Barriers included embarrassment, the likelihood that someone may find out, strict cultural privacy and gender codes and other competing priorities.

Sexual health services could not be welcomed into the home as the implication would be women were sleeping around. Going to the GP was an option in some cases, but other priorities and lack of inclination easily overrode this. A generic nurse, known to the community as assessing general health need, could, in the privacy of a caravan, ask about sexual health and take urine samples. A nurse was important because Gypsies and Travellers accept that nurses have to respect confidentiality. A generic nurse would routinely discuss many health subjects with every client, so the subject area could not be identified by others. If

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another person was present, regardless of gender, asking for privacy to discuss women’s issues was enough to clear the room and be perfectly acceptable. Test results could not be received by text or letter as it was common practice to exchange mobile phone sim cards and have letters delivered to the wrong address (assuming there was an address). Verbal results were the preferred way.

Attitudes toward cervical screening were mixed. Some had already accessed services via the GP while others remained adamant that they would not attend. In part this was due to not wanting to tempt fate, not wanting someone poking around inside and “if in doubt do nothing”. The latter attitude was also found when talking about vaccinations. Taking the wrong action could attract censure but taking no action was acceptable within the community.

Gypsies and Travellers did not seem to have a problem getting a female or male professional if they were registered with a doctor.

Homeless clients would specify when asked. However, getting access to a GP and midwife when homeless was difficult unless clients knew the area and could access the hospital. For most it was virtually impossible due to lack of transport, geographical knowledge and link person. Highly mobile families are generally first visited by a Traveller Liaison Officer in Bedford Borough and an Enforcement Officer in Central Bedfordshire. While they will ask if there are any health problems, women may not reply honestly if speaking to a man. Referrals tend to come via The Ethnic Minority Traveller Achievement Service or as a result of a letter requesting a health assessment as part of the movement on process. This wastes valuable time because the family may have been camped for three weeks before their need is known, but resolution of problems is expected quickly. At present, all requests for health assessments come to Public Health because that is where the Specialist Health Visitor for Gypsies and Travellers has historically been based. From March 2010 requests will go to provider services who have no co-ordinated response plan covering all age groups, no experience of dealing effectively with the multiplicity of need that can present itself and no extra resources.

Gypsies and Travellers did not know if services existed to help them with remaining health issues such as aids or adaptations, continence problems, access to dentist, health visitor, community mental health team and optician. The only universal service open to them was health visiting, but this was confined to a small age group (0-5 years). The potential needs of older age groups were not catered for other than via GP services, access to which required elements of understanding, literacy, memory, prioritising, communication, finance, transport and knowledge. Many Gypsies and Travellers appeared to have problems in all these areas.

Money While Money was only the fifth highest area of need identified, lack of benefit occurred in 34 cases, 10 of which involved disability.

Gypsies and Travellers assessed had little idea of their entitlement and could not understand the application forms. Their experience was one of dismissal by statutory agencies when asking for help to complete forms. An expectation and assumption that they would go to The Citizen’s Advice Bureau (CAB) or find help for themselves was flawed. The wider community was unlikely to have any greater skills than the individual when it came to literacy and understanding complex written statements (exceptions occurred). Attending an outside agency required a level of trust and communication skills that many found

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impossible. The few that did attend CAB found them helpful, but the requirement to produce specific documents (some of which they did not have) made the process lengthy, more likely to take a lower priority and less likely to be completed.

Emotional Wellbeing Although featuring lower in problem areas, depression, which should be considered alongside the 30% occurrence in existing conditions, was improved. One means of doing this was using driving theory practice test, administered by the community development worker, to improve self confidence and offer an achievable goal. Skills were enhanced and training valued. When the support needs of Gypsies, Travellers and Show People with stress depression and nerves was researched5, it was found that they required help with the issues impacting their lives rather than specific mental health input. A culturally competent and flexible outreach service, linked to General Practice, able to build relationships and trust and consider the needs of the whole family would be the ideal5.

5.1.5 Actions The highest number of actions was recorded under assessment. Assessments averaged 2 hours with some being much longer.

They started with the presenting problem but covered all other areas. Many clients were found to have issues they were not aware of but it was up to them to decide if these required addressing. If not, no action was taken unless required by law. Actions were shared between professional and client. A small number of clients returned to the project with additional problem areas requiring re-assessment. Referrals within the project group included an initial accompanied visit. While form completion (62) and giving information (44) were the highest direct actions, they could be performed by anyone trained to do the task. However the additional actions of advocacy, co-ordination, support and liaison required specialist skills involving high level communicative ability (acute listening, empathy, summarising, reflecting back, paraphrasing, simplicity of language). Cultural awareness, assertiveness, knowledge of statutory systems, services and client rights, the ability to challenge and network, identify resources and create close links with voluntary organisations were also required. While advocacy services exist within the voluntary sector, they are limited to the number they can help at any one time. Because Gypsies and Travellers live in the moment, there was an expectation and need for immediate action before that moment passed and was filled with another problem. From the professional viewpoint, any action expected of a client needed to be immediate or its priority would diminish. Waiting lists denoted non action.

5.1.6 Outcomes Outcomes were many and varied (Table 17). The data captured on the spreadsheet was not set up to identify those who did not understand the process they were going through and understanding did not appear specifically under any problem area or issue. The significance was not realised until half way through the project and it was documented under outcomes to ensure the information was not lost. Failure to understand the process they were going through applied only to adults assessed (72) and constituted 80% of the total (57). Other problems with the construction of the spreadsheet meant that collating data has proved difficult and manual extraction has been necessary to avoid double counting. Initially, likely data collection fields were unknown

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and the project has felt its way forward slowly. However, a much clearer idea is now emerging from which a database could be constructed to prevent duplication of material and assist research in the future.

There were many more client led positive results than negative and they included accessing benefit, proof of benefit, utility services, travel expenses, GP consultations, cervical screening, college course, solicitor, hospital services and medication unaided. What became apparent was that information was sufficient in some cases and for some required actions, but in many more clients needed to be led through a process. For a small number this was sufficient and making use of observation and role modelling, they managed by themselves. However, others had less confidence which was bound up in their poor communication skills, lack of understanding and knowledge, poor memory and experience of discrimination. They required and still require 1:1 support.

In 30 evictions, 8 led to negative health outcomes and 9 to negative education outcomes. 26 people were accommodated through the project; 14 had a house related improvement and 12 evictions were postponed, illustrating the need for the floating support now allocated. 39 benefits were awarded together with 8 charity donations. 8 children, who could of done so, did not attend school, of which 2 are in the child in need arena and 2 are waiting for paediatric assessment. However, a further 17 did attend educational facilities helped by the project. 4 common assessment frameworks were completed to access services for children 0-19 years and 3 referrals were made to social services with parental agreement. 11 children in three families were considered to be in need of a plan by social services, due to domestic violence or dangerous behaviour. In all cases, parents were part of the process throughout and there was no fear of the situation. One family was referred direct from social services for consideration of involvement by Ormiston.

Contrary to stereotypical views held by some professionals, where a referral was understood, had been agreed and was facilitated where necessary, uptake was good. Personal telephone and text reminders were used together with transportation and accompaniment, where necessary. This was labour intensive and made worse by the large geographical area. However, only 6 out of 96 referrals failed to attend with no adequate reason. Given the locality approach to community services being presently adopted, such support should be easier geographically. Jockey Farm and Timberlands sites are visited by Dunstable Health Visitors, as time allows, or to access certain clients. However, their services historically have not included school age children, elderly or adults with no children. Eaton Bray site tends to register with an out of area practice in Buckinghamshire. Health Visitors will visit clients according to their core programme but again, sections of the community are not necessary covered. Health Visiting services are stretched, making the intensity of assessment and support required problematic. Equally, school nurses rarely undertake individual assessments, as their work tends to be group and school orientated. It is difficult, therefore, for Gypsies and Travellers to know who to approach, assuming they have the courage to approach any service. Without a single point of contact, they are more likely to do nothing.

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5.2 Qualitative Information Barriers to access, voiced and observed, illustrated the difficulties faced by Gypsies and Travellers but failed to capture how, as a result, their behaviour was influenced. Understanding behaviour was a prerequisite to unblocking the stasis found in their health need and encouraging participation in health enhancing activities. The subsequent application of social marketing, applied effectively, could be a powerful tool for achieving positive, measurable behavioural impact12. Therefore, the project lead and senior practitioner, Ormiston, undertook a separate mind mapping exercise to capture their understanding of Gypsy and Traveller lives, based on the work they had undertaken.

5.2.1 Professional understanding of Gypsy and Traveller life Gypsy and Traveller behaviour (Diagram 2) was influenced by a complex circle of knowledge, beliefs, attitudes and the social context of their life and work, within which all the barriers they faced were encompassed. Their knowledge of their own family and community was good but they did not understand the settled society or theoretical concepts. Accessing or moving within systems and services created by the settled society was often a negative experience, leading to low confidence, self worth and self esteem.

These feelings were compounded by lack of school attainment.

Knowledge was gained through experience which tended to be visual, verbal and practical and community focused. They believed what they could see, so written evidence was less persuasive than what had happened to a community member, what their parents had done or what was seen or heard in the media. Too much knowledge (especially from the settled community and in the sexual health area) was considered to be dangerous as it could dilute traditions and have negative repercussions within the community.

Beliefs (Appendix 13) were therefore rooted in culture and traditional values which promoted specific gender roles, self reliance, rituals of cleanliness and body privacy, accepted the inevitability of life and death and distrusted statutory agencies because they, together with society, discriminated against Gypsies and Travellers on many levels. Older members of the community believed they experienced little discrimination because they had earned respect, although their interface with society was on a superficial level only. The Travelling community still provided their security, support, comfort and leisure. There was a strong sense of injustice among some Gypsies and Travellers, particularly the homeless, that the settled society did not care for them, simply wanted to control them. Lack of trust between the Travelling community and Social Services, for instance, centres on cultural experience of children being taken away6. However, fear could be overcome with honesty and openness. Perceived lack of personal control, coloured the majority of interaction with the settled society and led to feelings of anger, fear and frustration which could easily spill over into conversations with professionals when requests were not met. Personal control was required to counteract negative feelings of low confidence, self worth and self esteem.

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Diagram 2: Professional understanding of Gypsy and Traveller life

• • • • • • • •

Beliefs

Rooted in culture and traditional values Believe what I see or have seen Body privacy paramount Gender roles Fatalistic Too much knowledge a bad thing Society does not care Control agencies are bad

Knowledge

• Good cultural and practical knowledge • Poor knowledge of society and theory gained from TV, radio and community • Developmental and learning difficulties • Poor literacy

• • • • • • • • • •

• • • • • •

Influences on Behaviour

Culture Discrimination Accommodation Education Feelings / emotions (negative) Thoughts (negative)

• • • • • • • •

Attitudes

Fear assimilation Expect discrimination Expect prejudice Literal thinking Why bother Suspicious of professsionals Mistrust settled society Defensive

Understanding existing behaviour

Caring role a priority Struggle on Poor school attendance Non engagement Missed appointments Impatience Non compliance Retaliation / Confrontation Hospital admission avoided Care homes / Respite care avoided

• • • • • • •

Social context of life and work

Traditional values Family Community School difficulties Discrimination Accommodation problems Social exclusions

• Lack of human rights • Loss of personal control • Poor communication skills (with society) • Poor understanding and literacy • Self employment if possible • Loss of traditional work

Attitudes (Appendix 13) based on knowledge and beliefs included both an expectation and an acceptance of discrimination together with a mistrust of professionals seen to be part of the settled society. However, this mistrust could be reduced by honesty, cultural awareness, addressing clients’ needs first, offering advocacy and support rather than just information and having a single point of contact. These actions made Gypsies and Travellers feel respected, cared for and their opinions and culture valued.

47

Housing and education were viewed by some Gypsies and Travellers as ways to assimilate them into liberal lifestyles alien to their community. Many parents could see the benefits and necessity of education to children, up to a point. However, expectations of success could be low, with failure an accepted norm. Equally, some boys who had reached the age of 13 years felt they did not need to continue schooling and were old enough to make that decision. It could be difficult for a mother to exert sufficient influence over a young male adult within a patriarchal community. The possible introduction of Raising the Participation Age in Education, offers an opportunity to plan strategically to offset the likely negative effects on Gypsies and Travellers and other marginalised groups.

The social context of life and work among Gypsies and Travellers, was derived from and reinforced by knowledge, beliefs and attitudes. (Appendix 13). Children were a valued and essential part of community survival and, as such, some families did not want them to leave home to mix with the settled society until they had to, at 5 years. Fear of bullying and negative parental experiences as children compounded this view. The greater freedom given to children to express themselves and experience life could lead to developmental issues and learning difficulties going unrecognised, particularly when parents did not understand the boundaries of normal behaviour and did not access health visiting services. Equally, when problem behaviour or developmental delay occurred, parental acceptance of children, regardless of aptitude or disability, sometimes prevented help being sought. Parents invariably knew when there was a problem, but had to feel accepted by and comfortable with professionals before they were willing to discuss the matter. Behavioural interventions, routinely used, were more difficult or impossible to use within the confines of a caravan.

Parents were therefore set up to fail. From the children’s viewpoint, if the educational syllabus did not fit practical aspirations, they struggled with education or parents did not value education, motivation was lowered and no leaving qualifications were obtained.

Low levels of literacy, with or without schooling, created difficulty in accessing employment. This was compounded by discrimination. Several Gypsies and Travellers had experienced no interest in their job applications, which they put down to their address identifying their ethnicity. Loss of traditional stopping places, increasing numbers of migrant workers and locations which forbid “cold calling� have reduced possibilities for employment. The old ways of sealing a deal, such as shaking the hand, are frowned upon and paper trails are required to remain within the law. This makes employment hard to find and difficult to maintain, heightening the likelihood of benefit dependency and poverty.

Lack of literacy skills was continually cited as the reason for requiring help and there was an element of learned helplessness in some cases together with abdication of personal responsibility (Appendix 13). However, lack of attainment can lead to low self esteem, self worth and self confidence (Appendix 13) and in most cases poor literacy was accompanied by some level of difficulty in understanding, communication, memory or reconciling culture, which required advocacy and/or support. Part of the reluctance to improve personal literacy may, therefore, be the internal knowledge of need for additional access to advocacy and support services which poor literacy and low self esteem justifies.

48

The social context of adult lives (Appendix 13) is centred on the Traveller community and traditions, family focus and respect.

However, it was adversely affected by discrimination, social exclusion and lack of appropriate accommodation. This in turn created the issues and behaviours that cause difficulties in accessing services and fed the cycle of knowledge beliefs and attitudes often in a negative way. Non attendance at school, anti-social behaviour, non engagement with society and services, retaliation and refusal to take advice, where they occurred, had to be seen in the context of the behavioural circle (Diagram 2).

Gypsies and Travellers prized their culture and cultural traits above all else. Living in the moment was part of the freedom associated with their way of life, dissipated some of the stress they felt and was sometimes caused by cultural expectations. Caring for individuals, acceptance of disabilities and putting others first formed part of the respect owed to the community and heightened personal standing within the community. People were more important than time and the problems of others came before personal issues. However, this way of living was not understood by professionals operating systems, increasingly reliant on time and motion.

Conflict over missed or late appointments fuelled negative stereotyping. Observing a strict moral code on gender-related personal problems and acceptance of gender roles was part of personal respect. Preserving community values in the face of a more liberal society underpinned many decisions made.

Reduced memory capacity caused by living in the moment, caring duties, or general poor memory, compromised understanding and reduced ability to access and use knowledge, perpetuating the behavioural circle (Diagram 2). There was therefore, a disincentive to learn. The disincentive was hardened by the stereotyping and lack of respect which can be shown toward those with disabilities.

Poor memory, understanding and knowledge made accessing money in the form of benefits very difficult, resulting in poverty.

Continual failure to accomplish anything while interfacing with settled society, together with all the other barriers, led to not being understood, low self confidence, low self esteem and low self worth, reinforcing the necessity for strong Gypsy and Traveller community values within which to retreat. However, this description of the barriers facing Gypsies and Travellers also suggests possible solutions. Practice involving Gypsies and Travellers can be improved by including them within race equality policies, staff training in cultural awareness, culturally competent outreach, non crisis engagement, liaison with specialist voluntary agencies, advocacy and support and involvement of the community in developing culturally competent solutions to problems7,8. This project would appear to support that argument. In addition, developing peer advocates/health trainers from within the community and using a social marketing approach, could create pathways to interventions previously unkown or perceived by the community as unaccessible.

The need to ensure traditional values were retained was made more important because of the discrimination experienced from the settled society in terms of accommodation and social exclusion. Lack of hard standing for a caravan and forced movement on (homelessness) emanated from discriminatory legislation but also resulted in further discrimination from society fuelled by negative media stories of unauthorised encampments. This has created a vicious circle in which Gypsies and Travellers are not only socially excluded by members of society, but also socially exclude themselves. Therefore ideas and advice coming from the settled society are to be treated with caution. Being housed did not necessarily diminish the importance of culture and traditions or the influence

49

of any discrimination or social exclusion. Housed experience was mixed, ranging from entire satisfaction and acceptance by local communities to feelings of desperation because Gypsies and Travellers perceived their every move was watched and recorded.

Gypsies and Travellers found parts of the language society used difficult to understand and process. The larger and more complex the spoken information, the less it was understood. Poor literacy, accompanied in some cases with additional learning difficulty, meant written information was also misunderstood so expectations of society were not met, assumptions were made and consequences of decisions became negative as processes were not understood. Assumptions on the part of professionals and clients caused major blocks to understanding and, at times, the illusion of discrimination where none existed. Increasing professional understanding about the difficulties faced by Gypsies and Travellers may help to reduce assumptions made.

Finally, it is worth pointing out that although the project has concentrated on Gypsies and Travellers, many of the problems identified and solutions suggested could equally apply to other marginalised groups, such as the remaining eight vulnerable groups already highlighted by NHS Bedfordshire and economically disadvantaged families. Economies of scale could be achieved by identifying common issues and solutions and designing service specifications across all marginalised groups11.

References

1. Jesper, G. Griffiths, F and Smith, L. (2008). A qualitative study of the health experience of Gypsy Travellers in the UK with a focus on terminal illness. Primary Health Care Research and Development. 9 157-165. http://dx.doi.org/10.1017/S1463423608000613 accessed Jan 2009.

2. NHS East of England (2009). Toward the Best Together. A Clinical Vision for the NHS Now and for the Next Decade. NHS East of England.

3. Parry, G. Van Cleemput, P. Peters, J. Moore, J. Walters, S. Thomas, K. and Cooper, C. (2004). The Health Status of Gypsies and Travellers in England. Sheffield. University of Sheffield.

4. Goward, P. Repper, J. Appleton, L and Hagan, T. (2006). Crossing boundaries: identifying and meeting the mental health needs of Gypsies and Travellers. Journal of Mental Health. 15 (3) 315-327.

5. Bristol Mind (2008). Do Gypsies, Travellers and Show People Get The Support They Need with Stress, Depression and Nerves?

6. Cemlyn, S. (2008). Human rights and Gypsies and Travellers: an exploration of the application of a human rights perspective to social work with a minority community in Britain. British Journal of Social Work. 38 153-173.

7. Cemlyn, S. (2000). From neglect to partnership? Challenges for social services in promoting the welfare of Traveller children. Child Abuse Review. 9 349-63.

8. Clark, C and Greenfield, M. (2006). Here to stay: The Gypsies and Travellers of Britain. Hatfield. University of Hertfordshire Press.

9. Polit, D.F. and Beck, C.T. (2004). Nursing Research Principles and Methods. 7th Ed. London. Lippincott Williams and Wilkins.

10. Cormack D (2000). The Research Process In Nursing. Oxford. Blackwell Science.

11. Department of Health (2010). High Quality Care for All. Primary Care and Community Services. Inclusion Health: Improving Primary Care for Socially Excluded People. London. Department of Health.

12. National Social Marketing Centre. (2007) Big Pocket Guide - Social Marketing. 2nd ed. www.nsmcentre.org.uk. Accessed January 2010.

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6. Conclusions and Recommendations Gypsies and Travellers suffer inequalities in outcome, access to services and wider determinants of health. The individuals involved are invisible within national, regional and local health data systems and the numbers living in Bedfordshire (excluding Luton) are not known. A rough estimate puts numbers between 526 and 3685. Using a multi agency approach with defined objectives, the numbers of Gypsies and Travellers could be more accurately estimated, although there would always be difficulties quantifying those in housing. This project was designed to add to a scant body of information and provide the basis for future strategic and operational planning. However, it cannot take the place of routinely collected data on ethnicity supplied to NHS Bedfordshire by all provider services.

•

Ensure that all commissioned services are able to provide ethnic breakdown which includes Romany Gypsies and Irish Travellers as identifiable ethnic groups and includes the option of Traveller or Gypsy in ethnic monitoring forms.

All but the homeless among the community had permanent registration with a General Practitioner and therefore access to primary care services, but not all used it. Nevertheless permanent GP registration provides an essential base from which necessary health improvement can begin to be addressed and should be as available to the homeless as to those in settled accommodation, particularly as life expectancy among Gypsies and Travellers is 10-12 years less than the UK norm.

•

Ensure that homeless people across the county have equality of access to full GP services.

Accommodation was a prerequisite to accessing all other statutory services and in some cases caused health issues, with the homeless suffering the worst inequalities in health and experiencing the worst difficulties accessing health. The project identified that Gypsy and Traveller problems span all the wider determinants of health, with accommodation, education and employment being the highest priority.

A multi-agency approach with suitable advocacy and support has been successful in securing positive outcomes and reducing health inequalities. However, in future, NHS Bedfordshire’s input needs to concentrate on psychological and physical health, (including prevention) in line with their Operational Plan.

•

• •

Ensure a multi-agency approach is adopted to address the wider determinates of health, health access and health outcomes among Gypsies and Travellers. Include an agreed and standardised approach to unauthorised encampments across the county, accommodation support services and co-ordinated outreach from Health and the Ethnic Minority and Traveller Achievement Service (EMTAS) Include highly mobile Gypsy and Traveller issues within NHS Bedfordshire’s Homeless and Health Steering Group to provide a multiagency forum through which strategic and operational issues can be addressed.

Support the need for strategic planning to find solutions for the likely negative effects on Gypsy and Traveller children of Raising the Participation Age in Education

51

The project has demonstrated that accessing health services requires thorough assessment of individual situations, advocacy, support and coordination, which are the key to identifying and addressing health need and reducing health inequalities. At present, responsibility for health assessment is spread across gateways to individual services and tends to be service specific rather than holistic in a curative and preventative sense. While this approach may suit those able and willing to access services, it is not the most effective approach for the socially excluded.

As there is no longer a Specialist Health Visitor for Marginalised Groups within Provider Services and Ormiston’s role has come to an end, consideration should be given to either.

• • •

Identification of named nurses in each geographical location with responsibility for assessment of Gypsies and Travellers, coordinated by a lead nurse who would be part of the multi-agency group OR Provision of a replacement nurse to continue working with the Gypsy Traveller Community in line with the suggested actions and outcomes recommended in this report Commissioning extra capacity from a voluntary advocacy organisation using pooled budgets would speed up effective outcomes.

The nurse would need to have a wide remit to allow the inclusion of all ages, addressing existing gaps in assessment provision for elderly, single adults and school children on an outreach basis. Working from a Children’s Centre would establish close links with education and 0-19 year health visiting teams, avoiding duplication of work. Once trust was established, children’s centres or lower schools could provide a venue for further work, if accessible by the community.

Many factors contributed to the Gypsy and Traveller community having difficulties accessing services across health, accommodation, education, employment, water, sanitation and benefit. Poverty, homelessness, discrimination (perceived and actual), poor understanding, literacy, knowledge and memory, difficulties in communication, the need for support and advocacy and not feeling heard, all negatively affected access to health services and health outcomes. However, it was cultural / traditional traits that exerted the most influence within Gypsy and Traveller lives. If culture is the strongest feature, then respect for that culture is a prerequisite for any interaction. This requires: • • • • •

52

Development and provision of training for Provider Services about Gypsies and Travellers, preferably including members of the Gypsy and Traveller communities, to reduce the number of assumptions made and lessen the effect of stereotypical views.

Ensuring Gypsies and Travellers feature in all equality and diversity training.

Development of culturally competent health improvement programs for Gypsy and Traveller adults and children Development of culturally specific health education material, with the help of Gypsies and Travellers, in addition to securing that already produced in other areas.

Ensuring that pertinent literature is in “easy read” format

Cultural beliefs, knowledge, attitudes and the social context of life and work influence behaviour and create behavioural challenges within any socially excluded community. However this project has resulted in a deeper understanding of Gypsy and Traveller behaviour and demonstrated that, with the right approach, headway can be made in ensuring improved uptake of preventative interventions. Given the resistance of many Gypsies and Travellers to preventative health care and the difficulty found by some professionals in engaging with the male members of the community21, social marketing may be a suitable approach to prevention. Based on a deep understanding of the person and their behaviour, social marketing (applied effectively) can deliver measurable impact on people’s behaviour and has been used to improve health and reduce health inequalities. Combined with the introduction of Health Champions from the community itself and involving all stakeholders surrounding the community, the concept could be piloted on one intervention to evaluate and measure outcomes and cost effectiveness.

• •

A health advocate from within the Gypsy / Traveller Community should be identified and trained Use a social marketing pilot to address one preventative issue and evaluate the possibility for future use of this method in health improvement.

Although this project has concentrated on Gypsies and Travellers, many of the problems identified and solutions suggested could equally apply to other marginalised groups, such as the remaining eight vulnerable groups already highlighted by NHS Bedfordshire and economically disadvantaged families.

•

Economies of scale could be achieved by identifying common issues and solutions and designing service specifications across all marginalised groups.

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7. Next Steps Issues identified by the project have been chosen according to significance of impact on health functioning and possibility of effective improvement1. Prioritisation of issues has been guided by The New Zealand Ministry of Health2 using definitions as follows; • • •

High (H) – Definitely changeable with good evidence and coordinated intervention Medium (M) – Some aspects changeable with time and coordinated intervention Low (L) – Little no/unknown changeability due to lack of evidence

Table 18: Proposed Action Plan to meet recommendations

Issue Prioritisation Invisibility of G&T High community Invisibility of G&T High community

Invisibility of G&T Medium community

Poor access of High homeless G&T to the benefits of permanent GP registration

54

Recommended Action Review, adapt and revise G&T data collection spreadsheet Thorough assessment of individual situations

Operational Objective Provide baseline data on G&T health Increase baseline data and measure improvements in access to services and health - pilot Ensure that all commissioned services Contribute to baseline are able to provide ethnic breakdown information and measure which includes Romany Gypsies improvement in G&T and Irish Travellers as identifiable health ethnic groups and includes the option of Traveller or Gypsy in ethnic monitoring forms.

Ensure that homeless people across Reduce health inequalities the county have equality of access to full GP services

By Whom Specialist Health Visitor Public Health Nurse attached to Children’s Centre Central Bedfordshire (South)

End date June 2010 March 2011

NHS Bedfordshire Commissioning

March 2010

NHS Bedfordshire commissioning

March 2011

Issue Prioritisation Multi-agency High working required to meet wider determinants of health

High Multi-agency working required to meet wider determinants of health High The need for health assessments (including the wider determinants of health)

Recommended Action • Standardised approach to unauthorised encampments • Introduction of accommodation support services • Co-ordinated outreach by EMTAS and Health.

• Support the involvement of adult education services in the provision of culturally and educationally appropriate courses of value to the Gypsy and Traveller community.

Operational Objective Health workers can address the physical and psychological aspects of health inequalities.

By Whom • Specialist Health Visitor • Lead nurse or Generic Nurse • EMTAS Education becomes valued • Unitary Authorities by the community.

• Luminus • Education Services

Inclusion of highly mobile Gypsy and Traveller issues within the Homeless and Health Steering Group

Provide a multi-agency forum through which strategic and operational issues can be addressed.

The identification of named nurses in each geographical location with responsibility for assessment of Gypsies and Travellers, co-ordinated by a lead nurse who would be part of the multi-agency group.

OR The provision of a replacement nurse to continue working with the Gypsy Traveller Community in line with the suggested actions and outcomes recommended in this report

Increase baseline data and Provider Services measure improvements in access to services and health.

• •

End date Sept 2010

March 2011

NHS Bedfordshire Commissioning Specialist Health Visitor May 2010

55

Issue The need for advocacy and support

Prioritisation High

Necessity for High organisational cultural competence, lack of stereotyping and reduction in discrimination Lack of culturally High competent health improvement and health education programmes

Lack of provision High for those with low literacy levels

56

Recommended Action Commission extra capacity from a voluntary advocacy organisation using pooled budgets.

Mandatory training for Provider Services about Gypsies and Travellers, preferably including members of the Gypsy and Traveller communities.

Ensure Gypsies and Travellers feature in all equality and diversity training.

•

Development of culturally competent health improvement programmes for Gypsy and Traveller adults and children (emphasis on managing behaviour in children) • Development of culturally specific health education material, with the help of Travellers, in addition to securing that already produced in other areas.

Ensuring that pertinent literature is in “easy read” format

Operational Objective Addressing health inequalities (NHS Bedfordshire Operational Plan) Addressing health inequalities (NHS Bedfordshire Operational Plan)

Addressing health inequalities (NHS Bedfordshire Operational Plan)

By Whom NHS Bedfordshire Commissioning

End date March 2011

Specialist Health Visitor Public Health

March 2011

Training Department

• • • • •

Disability Discrimination Act

Children’s Centre Dunstable plus nurse Travelling Community NHS Bedfordshire Resources EMTAS Lead Nurse or Generic Nurse

Children’s Centre Resources

March 2011 March 2011

March 2011

Issue Community engagement in preventative health care

Prioritisation Medium

Recommended Action A pilot using social marketing to address one preventative issue and evaluate the possibility for future use of this method in health improvement.

Operational Objective Addressing health inequalities (NHS Bedfordshire Operational Plan)

Community engagement in preventative health care Likely duplication of qualitative findings and issues across other vulnerable groups

Medium

Train and support the uptake of health Meeting Pledge 8 & 9 advocates objectives

NHS Bedfordshire Health Sept Trainer Coordinator 2010

High

Recognising common issues and solutions across all identified vulnerable groups

NHS Bedfordshire Commissioning

Potential for economies of scale to be achieved in commissioned services

By Whom • NHS Bedfordshire Commissioning • Public Health • Unitary Authorities • EMTAS

End date March 2011

Sept 2010

Possible areas for the proposed social marketing pilot are shown in Table19. In order to deliver on the pilot, a social marketing planning framework, would be used in line with diagram 3.

Table 19: Potential target areas for a social marketing pilot

Target Reduce smoking in pregnancy and the level of smokers

Prioritisation High

Recommended action Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

Operational Objective Meeting Pledge 8 & 9 objectives

By Whom Specialist Health Visitor Multi-agency group Generic Nurse Smoking Cessation Health Trainer coordinator

End Date March 2010

57

58

Target Reduce Cardiovascular Disease – CHD, stroke, diabetes.

Increase access to mental health services and identification of mental health issues Increase access to antenatal care particularly in homeless Travellers Increase uptake of Chlamydia screening Increase uptake of immunisations Flu, MMR, HPV, child primaries

Prioritisation High

Recommended action Pilot CVD Risk screening 40-74 years on Kempston Hardwick site

Operational Objective Meeting Pledge 8 & 9 objectives

By Whom Horizon - Bedford

End Date Sept 2010

Medium

Document through health needs assessments and refer

Improve mental health

Generic Nurse or Children’s Centre Nurse

March 2010

High

Facilitate access to midwifery care

Meeting Pledge 8 & 9 objectives

Generic Nurse Children’s Centre Nurse

March 2010

Meet Chlamydia targets

Generic Nurse Children’s Centre Nurse

March 2010

High

Advise and inform appropriate age group Agree to act as link person Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

March 2010

Increase awareness and uptake of breast and cervical screening programmes

Medium

Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

Reduce cancer rates

Specialist Health Visitor Multi-agency group Generic Nurse Health Trainer coordinator Specialist Health Visitor Multi-agency group Generic Nurse Health Trainer coordinator

March 2010

Target Prioritisation HPV vaccination High Breast screening Cervical screening Bowel screening

Recommended action Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

Operational Objective Reduce cancer rates

By Whom Specialist Health Visitor Multi-agency group Generic Nurse Health Trainer coordinator

End Date March 2010

Reduce levels of obesity

High

Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

Meeting Pledge 8 & 9 objectives

March 2010

Increase access to dental health promotion and dental access

High

Choose one target on which to develop and implement a social marketing campaign. Pilot this approach for future interventions

Meeting Pledge 8 & 9 objectives

Specialist Health Visitor Multi-agency group Generic Nurse Health Trainer coordinator Specialist Health Visitor Multi-agency group Generic Nurse Health Trainer coordinator Dental Health Services

Less likely to be influenced due to need for cultural privacy Cultural acceptance and expectation to marry young

Meeting Pledge 8 & 9 objectives Meeting Pledge 8 & 9 objectives

Increase uptake of Low breast feeding Reduce teenage Low conceptions

March 2010

59

Diagram 3: Social Marketing Planning Framework

Step 1

Step 2

Step 3

Step 4

Step 5

Scope

Develop

Implement

Evaluate

Follow-up

Health Needs Assessment

Commissioning to develop intervention(s) with Public Health input.

Run a pretest or pilot of chosen action and refine activities

•

• Implications arising from evaluation.

• Medium and long term planning.

• Compare and contrast outcomes with previously attempted interventions • Record and capture information

• • Insight Report

• •

• •

Issues highlighted and prioritised Recommendations made.

Stakeholders engagement Choose an issue for action.

Identify behavioural challenges Develop behavioural incentives and goals

Develop activities and marketing strategy, including evaluation/ monitoring plan

• Implement intervention

•

The impact of actions on behavioural goals The outcome of the intervention The process and cost effectiveness of the intervention

Monitor progress

Source: Adapted from National Social Marketing Centre, Big Pocket Guide, page 127

References

1. Hooper. J and Longworth. P (2002). Health Needs Assessment Workbook. http://www.nice.org.uk/aboutnice/whoweare/aboutthehda/ hdapublications/health_needs_assessment_workbook.jsp 2. New Zealand Ministry of health (2000). Health needs assessment for New Zealand. An overview & guide. http://www.moh.govt.nz/moh. nsf/0/a164e4b64ff48b71cc2569bb00073904/$FILE/HNAoverview.pd

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Appendices

61

Appendix 1 Project Boundaries, Constraints and Key Assumptions The project will: Client Interface Include individual health needs assessments among Gypsies and Travellers who consent to the assessment

Organisational interface Monitor outcomes

Include Gypsies and Travellers in Bedfordshire regardless of habitat. Identify gaps in mainstream services Differentiate between settled and permanently mobile Gypsies and Identify barriers to engagement with services and suggest solutions Travellers but include both Identify problems from the clients perspective and with their Record data collected priority Ask clients if other professionals are involved and liaise with them Adopt a social marketing approach before taking any action Evaluate data, report and disseminate findings to management, Raise awareness, among client group, of available services commissioning and Public Health East of England Facilitate access to mainstream services

Provide the basis from which Gypsies and Travellers cultural requirements can be disseminated to frontline staff

Empower G&T to become independent

Make recommendations for interventions and expected outcomes to commissioning

Provide support and advocacy where requested by the client Refer problems to mainstream services with clients agreement Develop the Gypsy and Traveller community in a sustainable way Identify potential Health Champions from within the Gypsy and Traveller community Identify ways in which Health Champions could be developed

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Appendix 1: Project Boundaries, Constraints and Key Assumptions

The project will not: Client Interface

Organisational interface

• Include ethnic groups other than Gypsies/Travellers except where they are a fundamental part of that family

• Address gaps in service provision

• Impose professional priorities on clients unless necessary in the case of child protection

• Address barriers to engagement with services

• Force clients to take up service provision • Take on case manage beyond the scope of work identified by the clients • Offer support and advocacy to anyone not identified via a Health Needs Assessment • Undertake ongoing case management beyond the scope of the project • Create dependence on project workers

• Build findings into future service design or make recommendations in this field • Design future service provision • Develop health advocates • Deliver intervention

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Appendix 1: Project Boundaries, Constraints and Key Assumptions Constraints - Client interface Local authority restructuring and job changes within project team Sickness, bereavement Capacity issues

Advocacy and support needs of clients Project assistant/clerical support not immediately available Ormiston worker not immediately available Mileage required

Security Issues

Suitably encrypted IT data collection not immediately available Records storage Lone working Ability to transport clients

Training Issues

Cross organisational policies and procedures Accommodation/Planning issues Child Protection Vulnerable adult Project management

Constraints - Organisational Interface

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Capacity issues

Competing organisational demands Construction of a suitable database

Internal threats

Project end not synchronized with commissioning timetable Competing organisational priorities

External threats

Local and national financial constraints across statutory services General election with possible change in strategic direction

Appendix 1: Project Boundaries, Constraints and Key Assumptions Key Assumptions Clients

Clients will want to take part Clients will be able to vocalise what their problems are HNA tools will be acceptable to clients Workforce are compatible with clients

Workforce

Workforce are capable of working on own initiative and delivering results on time Workforce are committed to project Professionals will be in post throughout project There will be no sickness

Resources

Mainstream services can and will take on clients Support and advocacy time is sufficient Specialist Health Visitor can be released from work with community to do project Technology will be available Someone will be able to use technology Clerical support will be available Resources in form of people and time will be enough

Social Marketing

Other local organisations will be interested in project results and want to engage in a social marketing process NHS Bedfordshire will adopt a social marketing approach toward meeting the need of the Gypsy Traveller community

65

Appendix 2 Referral Pathway and Routes Client Engagement

Contact, Postcard Leaflet

Referral

Client Permission (Participation) Yes Gather Contact Details Input to Database Make Appointment

Waiting List

Make Appointment Health Needs Assessment Referral On

Risk Assessment Signed consent

Referral Routes

Referral Pathways

66

Other needs arising

Follow up Plan Outcomes Monitoring and Input to Database Reflective Diary Evaluation, Review Case Studies, Reporting Learning, feedback

Appendix 2: Referral Pathways and Routes EWO

Educational Welfare Officer

OTIC

Ormiston Traveller Initiative Cambridgeshire

TLO

Traveller Liaison Officer Central Bedfordshire Council

Education

Traveller Ed EWO Connexions Adult Learning Home Education School

Risk Analysis Referral Form Signed Consent Form

Site Issues

Employment

Complaints Repairs Maintenance Licenses Support

Healthy Steps to Employment

TLO Housing Manager OTIC

Community Health Services

General /Self Employment Issues Training

Ormiston Travellers Initiative OTIC

Housing Benefit Environment

Child/ Adult Protection

Accommodation Benefits/Debt Environmental Health Planning Licenses/Passports Racism and bullying Advocacy - OTIC Support - TLO

OTIC TLO

Social Services

Referral Routes

67

Appendix 2: Referral Pathways and Routes

Risk Analysis Referral Form Signed Consent Form

Bereavement Family Crisis

Mental Health Self Esteem

Community Development Interventions Support/Advocacy

Relate Cruise Chums Stars IAPT Social Services CAF/CIN Referral Routes

68

BLPT CDW

IAPT

Improving Access to Psychological Therapies

CAF

Common Assessment Framework

CIN

Children in Need

BLPT

Bedfordshire and Luton Mental Health and Social Care Partnership Trust

CDW

Community Development Worker

DRC

Disability Resource Centre

Health Promotion

Therapeutic Interventions

IAPT Mental Health Services GP Counselling Services

Physical Health Services

Older Peoples Services Falls Prevention Stop Smoking Services Obesity Sexual Health Long Term Conditions

Public Health GP/ Practice Nurse School Nurse Health Visitor

Social Services DRC Public Health Occupational Therapy Community Nursing Services GP Surgery

Appendix 3 Joint Working Protocol Ormiston and NHS Bedfordshire Introduction This agreement is between Ormiston Travellers’ Initiative Cambridgeshire and NHS Bedfordshire, whose shared purpose is to work together in the most effective way to benefit Gypsies and Travellers in Bedfordshire, who require advocacy and support. NHS Bedfordshire is conducting a Health Needs Assessment (HNA) of Gypsies and Travellers in Bedfordshire. Ormiston is funded by NHS Bedfordshire under a pilot project to provide advocacy and support to Gypsies and Travellers within Bedfordshire.

The Agreement The purpose of the agreement is to clarify working arrangements regarding the provision of advocacy and support to Gypsies and Travellers living in Bedfordshire.

Roles and Responsibilities Ormiston will: • Try to recruit and will line manage community volunteers • Provide an advocacy worker offering the equivalent to 50 working days • Provide supervision and management input to the project • Receive referrals from NHS Bedfordshire via secure fax, post and in person only • Prioritise referrals using agreed criterion • Operate a waiting list when the worker is at capacity • Carry out case allocation meetings weekly on Wednesday • Inform NHS Bedfordshire of capacity after each allocation meeting • Participate in monthly project steering group meetings • Support NHS Bedfordshire in the production of an evaluation report • Notify NHS Bedfordshire of any new outcomes clients wish to achieve • Complete quick wins with existing clients where appropriate • Notify NHS Bedfordshire of quick wins carried out (to inform HNA) NHS Bedfordshire will: • Take lead role in the HNA project • Explain the service offered by Ormiston when needs and risk assessments and support plans indicate a potential to make a referral

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Appendix 2: Joint Working Protocol • Refer the client to Ormiston by fax post or in person, if the client agrees they would like to use Ormiston • Make referrals in accordance with any geographical constraints Ormiston have indicated • Make referrals in accordance with the referral pathways documents agreed by the project team • Carry out risk assessments on all referrals and provide a copy to Ormiston • Provide a copy of the HNA tool and any other supporting paperwork, in agreement with the client Duration This agreement will last until March 2010. It will be reviewed by NHS Bedfordshire and Ormiston, if required, at the regular monthly project meetings and updated with the agreement of both parties.

Liaison The designated contact point for this agreement at Ormiston will be John Souter and Stephanie Bennett at NHS Bedfordshire.

Staffing The staff working to this agreement at Ormiston will be The Service Manager, John Souter and advocate Mel Perry.

Monitoring Ormiston and NHS Bedfordshire will both keep records of referrals made to each other for monitoring purposes and will participate in evaluating the joint work to assess how the agreement is achieving it’s aims.

Communicating with Partners Progress on this agreement will be shared with the partners on the project team. Any data shared will be anonymous in order to protect confidentiality. Numbers of referrals made and the additional learning gained by working to this agreement will be shared with the project team and other parties, from time to time, who may find the information useful.

Exit Strategy The project is a time limited pilot and is expected to end in December 2009. An exit strategy will be agreed by all parties according to the shared project plans. Decisions on this will be made by John Souter and Stephanie Bennett. There will be no need to divide assets, liabilities or costs as none will arise for either party as a result of this agreement.

Dispute Resolution Any misunderstanding or conflict will be addressed directly by John or Stephanie. If either party cannot be reached, or is unavailable due to absence, the alternative contact for Ormiston will be Siobhan Merrygold, Area Manager, Cambridgeshire. Tel: 07922 042600 and Martin Westerby, Public Health Manager, NHS Bedfordshire. Tel: 01525 636854

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Appendix 4 Example of Risk Log Risk/Issue (Ror I)

Action

Monitoring and control (Review and adjust)

1R

Clients do not want to take part

Monthly project meetings Dec 08 Most of Potton signed up in principle

2R

TLO’s job changes in April

Explain what’s in it for them – pictorial leaflet Create sustainability in all actions taken Identify as many new clients as possible by end April 08

3R

4R

Ann on long term sick leave Ormiston worker not ready by Jan 09

Continue snowball approach to recruitment Identify project assistant and secretarial hours for project as additional resources

Sickness

Identify replacements at start, agree time lost will be made up when well

Scoring Probability x Impact 3x4 = 12 Dec 08 = 2x4=8 Sep 09 = 1x1=1

Monthly project meetings Ormiston will help with referrals through their networks

5x4 = 20 Feb 09 = 2x2 = 4

TLO likely to be tupe’d to one unitary authority

Sep 09 5x 3=15

Monthly meeting with management Dec 08 Project worker in place Existing workers interested Volunteer available Later finish or less people seen

3 x 4 = 12 1x4=4 Dec 08

5 x 5 = 25

Key Risks may occur and will threaten successful project delivery Issues have occurred and, if left unresolved, will threaten project delivery Probability; 1-very unlikely, 2-fairly unlikely, 3-50/50 chance, 4-failrly likely, 5-almost certain Impact; 1-negligable, 2-minor, 3-moderate, 4-serious, 5-disastrous

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Appendix 5 Crown Derby Plate

72

Appendix 6 Issues within Assessment Areas (Crown Derby Plate) Support Adult and Child Wider family Family relationships Social Integration Networks Children Guidelines and Boundaries Stimulation Emotional warmth Basic Care Ensuring safety

Emotional wellbeing Existing conditions Depression/ mental health Bereavement Isolation Social presentation Appearance Self Care Interaction

Scholar?

Confidence

Accommodation

Access to services

Adult Basic skills Learning needs Education/training Qualifications Opportunities to learn Leisure activities Volunteering

Self esteem Self worth Choice Control Involvement Positive attitude Motivation

Water Sanitation Utilities Planning Eviction Private/LA/UE Housing

Adult and child GP registration BP Urine Dentist Out of hours

Children Play Development Skills Attitude to boundaries School/education Education otherwise Attendance Hopes and dreams

Other

Health

Discrimination

Family

Safety

Money

Existing conditions Action taken Aids/adaptations Disability

Identity Neighbours Friends Animals Racism Prejudice

Adult and Child History Deaths Health Functioning Stability Divorce Separation Domestic Violence

Court orders ASBO Harm to others Bullying Harm from others Environment Harm to self Risky behaviour Probation

Income Debt Employment Benefits

Substance misuse Drugs Alcohol Smoking

Preventative services Vaccinations Hearing Speech Eyes Chlamydia Obesity/Diet Exercise Falls prevention Cervical Smear Breast examination Testicular examination Chiropody OT Physiotherapy Opportunity Transport Reception Phone Disabled Badge

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Appendix 7 Health Needs Assessment Paperwork Health Needs Assessment Form

74

Appendix 7: Health Needs Assessment Paperwork Referral Interagency Form

75

Appendix 7: Health Needs Assessment Paperwork Risk Assessment Form

76

Appendix 7: Health Needs Assessment Paperwork Closed Issue Summary Sheet

77

Appendix 8 Health Needs Assessment Leaflet

78

Appendix 9 Exit Strategy Leaflet

79

Appendix 10 Static and Improved Issue with Health Need Issues within health need SCHOLAR Education Development School attendance School access Basic skills Literacy ACCOMMODATION Evicted Homeless Housing Identity Into accommodation Planning Court Order ACCESS Smoking Vaccination Hospital Chlamydia screening Midwife Optician Cervical screening

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Issues Remaining Remaining Remaining remaining sad medium happy static

1 2 1 2 25 22 25 2

11

1

4

2 2 1 2 40 22 25 3

1

1 3

1 3

Sad to happy

Sad to medium

Medium to happy

3 1

1

3

1 10 1 4 1 13 1 4 11 1

12

1 2

3 1

7 1

22 2

4

4

2

1 4

7 6 6 5 3

1 1 2

2

Issues improved by intervention 7 1 1 11 2 8 1 15 4 5 11 1 2

2 3 1 1 1

1

7 6 7 5 3

Appendix 10: Static and Improved Issue with Health Need Issues within health need Dentist CMHT GP HV HEALTH Disabled badge Carer Aids Continence MONEY Income Debt Benefit Employment EMOTIONAL WELLBEING Bereavement Depression Driving theory FAMILY Domestic Violence SUPPORT Boundaries Attitude MISCELLANEOUS TOTAL

Issues Remaining Remaining Remaining remaining sad medium happy static

1

1

2

2

1

1

3 1

4 1

1

1

1 1 2 109

3 22

4 23

1 2 7 154

Sad to happy

Sad to medium

9 2 21 3

2

2 1 3 1

1 3

Medium to happy

1

Issues improved by intervention 11 2 23 6 2 2 3 1

1

1 2 2

4 4 34 3

1 5

3 3 2

1

3 5 7

4

1

1

6

3 2 32 3

18 187

1

1

4 39

22 236

10

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Appendix 11 Barriers Voiced by Clients

(based on families rather than individuals)

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Telephone/Financial

• I have no money for credit on the phone4 • Hospital 12 miles away, have no car • Can never get through, waiting a long time and costs money • I only has mobile with little credit • Getting hold of benefits people to alter details takes for ever and is so difficult • Keep contacting child benefit by mobile when I have credit but nothing is happening • I can’t get through to any of them (benefits) • Trying to sort out benefits on phone with no money coming in is dreadful • Having one number to ring makes it easier • Costs too much for the call

Transport/ Financial

• Have no transport to get to hospital2 • No money for transport2 • GP 2 miles away and have no money for bus2 • Cannot get baby and daughter to telephone box in village and make phone call safely • Costs money to go to Job Centre Plus to make calls to benefits • It costs loads just to get them there (hospital) and where do I find the money?

• Very expensive to get places on very little a week • You can use the phone at JCP but you have to pay to get there by car or bus • Difficult to get to appointments on time as buses do not connect • Can’t take her to hospital until father gets home

Homeless/Financial

• I cannot call an ambulance, have no post code.

• I can’t go back to where I was to see the doctor.

• I can’t divorce him for violence until I have an address • I’m on a private site for my safety but am unable to pay and can’t get housing benefit.

• We were evicted off our own land because they would not give us planning permission. Now we have nowhere • We have been trying to get a plot for ages, but no luck • Cannot received letters with no address • Perceived Discrimination

Appendix 11: Barriers Voiced by Clients Perceived Discrimination

Housing

• They (housing) showed me no respect2 • I am not going to tell them I have difficulty understanding when they treat me with no respect (Housing) • They (housing) treated me much better this time with you • I had to walk out last time so as not to lose my temper (housing) • They (housing) told me to leave temporary accommodation but I never got a letter • I came with you (to housing) and they said they had everything they required but have made me return three times for things I have already provided • No one listens to me - they (housing) write me off • Each time I took everything with me and made them photocopy them again.

• They seemed to think I had money to pay the rent but it is council housing benefit that does that and they have the proof. I did ask for a complaints form like you said and after that they were really nice and it went through • I would have walked out if you were not there, the person was so patronising (housing) • I have not put a foot wrong but they still don’t want me (site residents) • Will not use services where professionals appear rude and unhelpful

Education

• Don’t want them (other children) to know where my child lives because they will label her a Gypsy • If they know she is a Gypsy she will be bullied • I don’t want her going alone on a bus • Prejudice at middle school and upper school

Health

• The lady at the hospital was very rude and dismissed me • I asked at the hospital for the dentist and said I had an appointment but could not remember the name of the dentist (orthodontist). She told me they did not have a dentist and I should go to another place- I said I was sure it was the hospital because I knew you had said it was the hospital but she would not believe me, she looked at me as if I was dirt • They (hospital) were really unhelpful until you phoned them then they were very sorry and nice • They would not take me on as a patient ( while in Bedford) although I tried to tell them I had a serious condition. They said to find another practice but I don’t know how. I did lose my temper because they were not listening

Employment

• JCP not helping and very --- they dismiss me

Police

• I have been covered (insurance) for years but they (police) were determined to find something because they thought I had stolen the goods and I could prove I had not

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Appendix 11: Barriers Voiced by Clients Lack of Client Understanding Difficulty I wouldn’t have them to help me Don’t see what the support team can do.

Reasons Because I felt they would be prying and judging me His behaviour is the problem not my parenting The other kids listen and do as they’re told, he does not.

Now I need to understand if he has a problem Because his behaviour is so bad I don’t understand enough to tell someone what’s wrong with me. The hospital took the paper describing my condition which you gave me I get muddled when using the phone at JC Plus Because I can’t understand the questions I do not understand what question they (benefits) are asking They do not say what they mean I only hear the first few sentences While I am working that out in order to reply, they carry on and I lose the rest.

Have difficulty knowing what to say and understanding it and I get muddled and don’t understand too much information putting together answer.

I have sold the car for a deposit for a studio flat for the two of us I did not realise that that would take away their responsibility to help we because they are taking so long to help just had to have somewhere warm to sleep.

Midwives have not been round to see me I seem to be jumping through hoops and I do not understand why Don’t understand process to get help it should be so difficult.

I cannot understand all the writing.

Don’t understand process for appeal against eviction I thought I was covered but police still charged me I don’t understand what to do2 I was told MRI would cost £700 so went to osteopath - cannot Cannot understand what some people say afford this now and still in pain I did not know I was doing wrong I understand only part of what I’m told Forms are too long and difficult3.

He was attending GOS so did not think he needed to be seen by anyone else

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Appendix 11: Barriers Voiced by Clients

Poor Memory

• Completely forgot as it had never been (appt GP)2 • Forgot first appointment (cervical smear) • I could not remember the name of my condition but I know it is serious2 • I cannot explain to them about his condition at birth because I have no records and can’t remember the long words • I cannot remember all they tell me but I don’t say anything2 • Don’t like going by myself because I don’t remember - we go together but neither of us have good memories • I forget things and have three children with chronic conditions going to various I don’t read or write and have no memory so I cannot give you details • I can’t remember what to do • I have so many other things to do, I forget that I have to apply again • I cannot remember security answers for benefit people • My memory and being unable to read or write makes life difficult - everything takes that much longer and things get forgotten

Importance of trust and privacy

• I have no trust in them (voluntary bodies) but do trust project worker. Family say you’re ok • I don’t know them (voluntary organisations) and you have to trust someone before you let them have your personal information so I won’t use them • We need trusted professional and that is important • We know you don’t say anything to anyone else unless you have to and you explain why • You don’t promise nothing but you usually get things done and you say if you can’t • You are ok because we have built a relationship • I will have test (Chlamydia) if you bring results because you visit anyway and I can trust you • You are not a stranger because we know you - you were there when we lost our grandson and that meant a lot • I need to feel comfortable sharing personal information and can’t do that with a stranger • Need to get to know the helper or have them recommended by the community

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Appendix 11: Barriers Voiced by Clients

86

Lack of Knowledge

• Did not know about benefits but I will get form • Don’t know what I can apply for (benefit). Other people tell me.

• Don’t know what entitled to or if entitled to anything or where to go for advice.

• Don’t know what benefits I get. Don’t know what I can have • Did not know I could claim benefit.

• I am existing on next to nothing.

• I don’t know what services I can get here3 • Don’t know what to do next • I don’t know what to do or where to go2 • I don’t know how to get these things (identity) and cannot read or write a letter.

• Don’t know how to go about getting supporting information for housing.

• I didn’t know how to get help to read and write although I have always wanted to • I did not think CAB would help with that sort of thing (adult education) • Don’t know what is going on (planning) • Until I am divorced he can come and go as he pleases

Difficulty Speaking

• I cannot talk to them like you • I cannot explain to them • I do not have the words • We don’t speak like you • We use different words • They don’t give me time to speak • I can’t answer quickly (benefits) and often don’t give the right information • I cannot cope with talking to agencies on the telephone2 • I get muddled by all the choices (automated telephone system), they ask questions so quick and if you do not answer they cut you off • Don’t like speaking (to agencies) on the phone when asked a lot of questions before talking to a person.

• Can’t think that quickly and get confused • Don’t like talking to new people • Client not feeling heard or understood

Appendix 11: Barriers Voiced by Clients Client not feeling heard or understood

Taking Action

• I have a broken window and the draught is dreadful but no one does anything • Those bad people destroyed my belongings and no one does anything • I phoned the social worker but she told me to go to CAB. I cannot go to CAB alone • Police say CMHT, CMHT say Police. What can I do?

• I have rung them and explained the problem (housing) and supplied all evidence but get nowhere • It took health visitors months last time to visit me so I told them to go

Listening

• They keep sending me round in circles and I get nowhere - no one will listen to me or help • I tell others he does not mean it - they don’t listen • I tell them he’s not right in the head but they don’t listen • I need a home, no one will listen and no one will help me • I already have two children and don’t want any more but no one will listen • They won’t listen, he is dangerous but no one will come out • Won’t take his medicine and taking drugs but no one will listen • They won’t listen to me - he cannot make sensible decisions himself • He can speak as if he is (an adult) but I know different and they will not listen • The police do not listen even when I had a court order banning him from being near me - they let him stay • They (housing) don’t listen • All they (family) do is talk • Nobody will listen to me - I cannot live with her • They (parents) talk to me but I don’t listen it all goes over my head • I can only listen to small amounts at a time • I can’t get them to do anything about the repairs to the house - they don’t listen.

• They won’t listen to me and I don’t know what to do or where to go • I got angry because they would not listen-I was frustrated.

• They don’t listen to me only to you • No one listens to me - they write me off2 • People do not have time to sit and listen to me.

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Appendix 11: Barriers Voiced by Clients Client not feeling heard or understood

88

Understanding

• Have talked to milk token people on phone at JCP but nothing happened • Then you phoned them and they sent wrong form • They do not understand that to put a child of his age into school for the first time full time with no support is asking for trouble • I lost my daughter (died) and I feel so bad – they don’t understand • I saw them when I lost my baby, I cannot go back there.

• To see them with new baby might bring bad luck • Constant movement on making is making the birth unhappy and depressing • I couldn’t tell the doctor (man) why I wanted a termination • My depression is caused by the constant fear of becoming pregnant • I feel like I am being raped by husband • He is easily led to drugs within own community but they say let him have his freedom to be with friends, don’t they understand?

• They treat him as an adult but he is not an adult mentally • He cannot take in what they are saying so if I am not there nothing they say gets done • I do need her support but cannot live with her • I knew he was more than naughty but would not listen to what relations were telling me

Respect

• They don’t take as much notice of me as of a professional • They will only deal with him (son) • I keep telling them I don’t get things but I don’t think they believe me

Appendix 11: Barriers Voiced by Clients Skills • I can go the JCP and make telephone calls • I can speak for myself Difficulties • I cannot sort health, housing or anything • I don’t know about things or where to go for help.

• I cannot fill out all the forms2 • We’ve had a housing letter but lost it • Life is difficult on the road • Getting into services is difficult • Being unable to read or write makes getting any service difficult

Reasons • I don’t read or write19 • The length and difficulty of DLA forms makes it impossible to complete5 • I have not got any paperwork because I can’t read it so it means nothing and I burn it all2.

• My memory makes life difficult - everything takes that much longer and things get forgotten2

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Appendix 11: Barriers Voiced by Clients Needing support and advocacy

Support for reduced coping skills

Support to access education

90

• I can’t cope with his behaviour when I feel like this2 • What’s the point nobody wants to help me.

• We are sleeping in a car and they will not help me.

• Can’t do it what with all the other letters and mum and son in hospital.

• I have to put on an act to go there, I cannot be myself and with all the stress • I cannot cope with putting on an act so it will not get done.

• Low self confidence • Trying to find someone who would help caused so much personal anxiety I didn’t continue.

• Cannot cope with talking to agencies on telephone.

• Made another GP appointment but didn’t feel able to go • I panic a lot and have a lot of things to do plus I find it hard to accept help • What’s the point -they have their own reasons for being here nothing to do with what I need • The children need schooling but they won’t let us stay

Support to access benefits

• I go to JCP and they say it will be ok but it is not - nothing gets done • I haven’t had tokens since son was born a year ago • People do not want to help me fill forms in • I don’t pass security (benefits) because I cannot answer their questions – I don’t remember

Timely support

• I went to CAB and they have over a week’s wait - that’s no good to me when I have no money • Needing support and advocacy

Support to manage paperwork

• Can’t complete DLA form myself.

• Cant deal with all the letters 2 • I have not got any paperwork because I burn it all 2.

• I’m scared to go to upper school • Every time I get a letter or form it is just one more priority I don’t have time for.

Appendix 11: Barriers Voiced by Clients Needing support and advocacy

Support for Cultural Issues

• I know where CAB is but will not use it because they don’t understand the Gypsy way. If you are not here I will just have to manage. If I get into debt I will go to the family for help • He’s hard work, when on the road in one van it is easier to give in to his demands • Don’t want to see the doctor2 • Don’t want to take tablets • We don’t do counselling cos its not the Gypsy Way • Fear of social service involvement • Social services take our children away • It is shameful to have social services in your house2 • I could not talk about my continence problems with the nurse because she had a male nurse with her problems are getting worse • My priority is the children and looking after the old gentleman • Won’t go into mother and baby unit ever. I’ll stay with my own kind • Be careful not to speak about Chlamydia in front of anyone else - it would be shameful even if it is not a problem • I want Chlamydia test but they cannot come here and I cannot ask GP, it’s shameful to do so • I will have Chlamydia test but you must tell me the result privately and personally, I can only do it through you and verbally. I cannot receive results by text or phone call in case anyone sees it or hears it. If you bring results its ok because you visit anyway and can trust you3 • I’ve been left by my father to care for sister (dependent) • I can see that my headaches may be due to High BP but prefer to live in ignorance of any condition I may have • Only want plot with people I know, my own community • If I could be sure I could be considered for a plot from temporary accommodation I might consider it • Don’t want cervical screening - don’t like have people poking me about inside

Support to increase confidence

• Don’t feel confident in my own ability to get successful result.

• I know where CAB is and how to contact council but I am not confident enough to do this alone.

• Some professionals give wrong advice • I have no confidence in myself to do paperwork.

• I have no self confidence or motivation to do something worthwhile

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Appendix 11: Barriers Voiced by Clients Needing support and advocacy

92

Support to access health services

• Don’t know nearest GP • How do I get my kids seen when I am never allowed to stay in one place?

• Children need vaccinations and medicines but don’t know where GP is • Can’t get a doctor and feel so ill • Surgery said I could sign on with them but would not give me a prescription • Had to go back to my temporary surgery for prescription • They did not offer an entry medical and I want help with my illness • I need to stay in one place to have the baby • Don’t know how to get a midwife • Baby’s nearly coming and I have to have somewhere to stop.

• Need my brace reviewing but don’t know where to go • I will not be able to attend the consultant appointment as unable to return to that area • We will not be allowed here long enough to get a consultant appointment.

Support to reduce fear

• They trouble me for money and threaten me so I have to sit up all night.

• I can’t go back on site because I informed • I am scared but they tell me I must go back.

• I could not share the fact that I could not spell with a stranger so CAB no use to me.

• Those bad people destroyed my belongings but don’t you say anything or they will come back • You don’t want you’re first born to be labelled with a condition especially a boy.

Support to access basic amenities

• We need to have water electricity and toilets2 • They (local authority) won’t let us connect up to services2 • When we came here they made us take out existing toilets and sewage system at our own cost.

Now, if we want it, we have to put it in again at our own cost. But we still only have temporary permission to stay. There’s not much work around and it just seems so unfair that we cannot have what others take for granted. We have used an outside toilet for such a long time and it is very costly to clean and empty • Very expensive to afford to heat day room on very little a week

Appendix 11: Barriers Voiced by Clients Support to maintain caring responsibility

• I am sorry I have not been around when you have come. It is not deliberate - I just have so much to do. (7 children and carer)

Support to establish Identity

• Need my birth certificate and other papers but don’t know how to go about this and cannot read or write a letter • I cannot get identity papers because I have no address to have them sent to

Information required

• I have no telephone number for Community Mental Health Team • Don’t know where I am5.

• Don’t know where to go2 • I don’t know who to phone • People say it is not possible to obtain notes without exact hospital but I don’t know the name • My daughter is in hospital so I cannot make my appointment but don’t know who to contact

Advocacy

We need professional help2 • We cannot do this alone • Need help and you show respect • I have no means of finding out anything without professional help • The hospital took the paper describing my condition which you gave me.

• They were really unhelpful until you phoned them then they were very sorry and nice • They still send letters saying I owe money when I know I don’t and it causes stress • People do not have time to help me • Get muddled by choices and they ask questions so quick and if you do not answer cut you off • Have been like this for four years with no one to turn to, would you help?

• Didn’t get much help at middle school, don’t think new school knows I have difficulties, don’t know • Want to do well and want extra support • They keep sending me round in circles and I get nowhere - no one will listen to me or help.

• My memory and being unable to read or write makes life difficult - everything takes that much longer and things get forgotten.

• Need help to access right service • Job Centre Plus would not have helped me if you had not spoken to them they had written me off

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Appendix 12 Barriers Seen by Professionals Financial

94

Homeless

• Lack of temporary stopping places for homeless Travelling families needing help.

• Private sites not available for those on benefit • Private site owners want cash in hand not housing benefit.

• Housing benefit only provides for ground rent on private site – does not cover total rent • Many cannot afford private sites • Roadside travel 3 and Movement on4 • Inability to access emergency services with no address • Unable to attend school as moved on • Access to antenatal care pure luck2 • Routine health follow up and primary/secondary referral not always possible in time allowed 5 • Agencies require an address to take on or visit clients • Further temporary planning permission granted but difficulties remain - must spend large amounts of money for sanitation with no guarantees they can remain

Transport

• Isolated position4 • Relies on aunt for transport but this leaves the aunt's children alone • Public transport expensive4 • Services can be up to twelve miles away3

Telephone

• Establishing identity beyond the scope of mobile phone holder on benefits – took professional 3 months and many callsto obtain birth certificates.

• Cannot get baby and daughter safely to nearest telephone box.

• No credit for long calls to agencies • Messages can cost to retrieve and may not have telephone credit.

• Hard to get through to the right people on the phone • Automated systems cost service

Appendix 12: Barriers Seen by Professionals

Lack of Client knowledge about services/access criteria

• Family concerns re. behaviour but family do not know how to address those concerns or who to go to2 • Lack of knowledge about what developmental traits may be wrong2 • Lack of knowledge about service provision6 • Lack of knowledge about service position4 • Lack of knowledge about travel entitlements2.

• Lack of knowledge about benefit entitlements. No way of finding out • Do not know how to access identity certificates7 • Don’t know what they don’t know

Lack of self esteem/ confidence

• Reasons for having problems are ongoing illiteracy, poor memory, low confidence and low self-esteem – requiring access to a constant source of advice, advocacy and support • Lack of assertiveness - assumes professionals are in control and almost abdicates responsibility.

• Low self-esteem2.

• Needed support for own opinion before acting.

• Low confidence3 • Children do not necessarily have the confidence to ask teachers for extra help. Parent did not know how to do so

Learned helplessness4

• Apathy born of disillusionment • Wants others to sort out problems because when she/he attempts it she/he fails or only does half of what is needed – perceived as personal failure and reduces self esteem further • If result is not desired outcome moves on to next professional • Easiest course is to ‘bury head in the sand’ but only makes matters worse.

• Afraid to complain – fear things will get worse • Useless to complain – no one listens anyway • Given up on improving skills – never was much good

95

Appendix 12: Barriers Seen by Professionals Discrimination Difficulties • Adult fears sending child to upper school with behaviour out of the ordinary. History of child being bullied and or singled out for negative attention • Travellers with children who would be in priority need for housing and accepted as homeless have no temporary accommodation suitable to their cultural need for hard standing • Expectations of professionals [housing] at a far higher level than client can perform3

96

Consequences • Would rather child did nothing than experience bullying.

• Priority need for accommodation is not met • Client is barred from accessing service

Appendix 12: Barriers Seen by Professionals Lack of Client Understanding Difficulties Changes mind continually so cannot pin down to a decision or action.

Difficulty understanding automatic telephone prompts3 Difficulty understanding people on the phone and formulating answers.

Look to other members of community to help but they are just as confused.

Relies on family to read things but some of them do not read well.

Lack of understanding about how health systems work, how to access them or how to get information2 Lack of understanding about how planning and site provision works2 Lack of understanding of problem. Thought insurance was insurance without realising there were sub-categories Not understanding the need for housing benefit to be paid on rented caravan and plot 4 Giving the wrong details by phone to pass security3 Poor memory3 and timekeeping4 Reluctance to engage with education services2.

Children never went to school although places found (5 children).

Lack of understanding among professionals re. impact of illiteracy and poor memory.

Lack of understanding of social service roles5 Misunderstanding about what midwives do and when and where they see patients3.

Reasons Slow comprehension.

Cannot hear several options and remember the first 42 Lack of understanding/mental capacity 4 Poor ability to comprehend blocks of information Client has not understood what has been said16 Client picking up the wrong messages and is acting accordingly10.

Can only process a little information/ action at one time.24 Lack of literacy50 Literal thinking does not transfer to other situations10 Poor memory31 Disorganised7 Cannot remember date of birth5.

Telephone operatives not precise about question being asked.

They say 'what is your address?' rather than 'What was the address you were at before you moved? 6 Mind full of immediate priorities 10 Lack of clock, inability to tell time Parental apathy toward education and lack of aspiration for child 3

Professionals do not ask, simply assume6 Fear of children being taken or elderly being put in care 6 Unable to process all the information given

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Appendix 12: Barriers Seen by Professionals Assumptions Difficulties Health visitor unable to make contact with family since previous health visitor left over a year ago.

Results Professionals become weary of client.

Out of area birth not notified to health visiting team until saw doctor at 6 week check.

Failed contact stops further attempts to engage Administration failure adversely colours client’s view of serviceunlikely to attend

Routine behaviour management approaches difficult to administer in the confines of a caravan and are magnified by additional children and the limited space.

One method fits all (teaching behaviour) sets mobile Travellers up to fail

Difficulties expressing herself

Miscommunication with professionals Failure to check understanding sends mixed messages If seen by Great Ormond St do not need to attend development Failure to explain who does what and why or streamline/co-ordinate checks. If seen to in school do not need to attend CDC. necessary service contact means only the one perceived as most knowledgeable will be attended.

Clients rights not fully explained by housing with regard to payment Client accrues unnecessary benefit arrears of housing benefit.

Client breaks rules and is evicted Terms and conditions of tenancy agreement given in written form and not read out or offered in simple read format so illiterate people have little idea what they are signing.

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Client switches phone without communicating action

Client gets upset when no one phones

Client arrived for orthodontic appointment but said she had dental appointment and was directed elsewhere

Client can do things when guided and given precise information.

Asked to complete Citizen's Advice Bureau form in public waiting room when unable to read or write.

Expectation that client would undertake literary assessment with others when she had no skills was scary and embarrassing for client.

Some say they can read and write but may only do so to a basic level Client abdicates responsibility, expects professional to be immediately available and solve all problems2

Client does not use CAB again Client does not make use of adult education Client missed appointment unnecessarily Clients expectations not met and engagement ends2

Appendix 12: Barriers Seen by Professionals Cultural Traits Difficulties Living in the moment and unused/unable to plan

Consequences

Do not complete required tasks – something else has become a priority2 Do not anticipate problems Deal with things as they come Do not return calls – caught up in family matters Making immediate decisions without thinking them through Poor timekeeping. Failing to keep appointments Tries to manage with basic skills and gets into difficulty

Actions must be immediate or priority diminishes2 Crisis management the norm Needing help to fire fight consequences of actions Actions are too late Problem drags on.

Needs help and support to write necessary letters

Not good at following through actions2.

Consequences of decisions made not always positive

Problems are ignored until they have to be faced Problem drags on 3 Do not understand the importance of documents - Loses or burns them Do not understand how to retrieve personal documents5 Child benefit for sister took six months Child benefit for daughter took three months Client is telling the truth but cannot remember names and has nothing in writing Mum had very different concerns to school Mum did not know how to access help because she did not see the problem as school saw it Cultural expectation that family will do any caring needed regardless of issue.

Parents/carers hard to contact Illness, family issues take priority over everything4 4 Appointments not kept Caring duties override personal health need 2 Carers are stressed but are reluctant to accept help other than Carers can be overwhelmed but would not have it any other way nursing care Social services would not be acceptable as caring for elderly and those Help from agencies is refused but family can offer help. However female members can only go so far when a male is the recipient.2 with a disability are an expected task for women.

Nursing homes and Respite care may be unacceptable Culturally fatalistic attitude to health and life deeply felt.

Cultural resistance to inpatient treatment

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Appendix 12: Barriers Seen by Professionals Cultural Traits Difficulties Respect and personal privacy valued among community

Consequences

Respect not received from some professionals

Clients do not volunteer their problems with reading and writing – they need to be asked.

Reluctance to engage with services Accepted rules of settled society do not necessarily transfer across to Gypsy/Traveller community.

Ok to talk about personal gender related problems but in strict privacy and between same sex Telephones cannot be used for sensitive information Generic nurse rather than condition specific worker preferred so nobody can guess the reason for the visit Sexual health can be discussed one-to-one with a generic nurse Will only talk to a trusted person recommended by community3

Non interference in another community members lifestyle2 Help from the community in domestic violence must be discrete Strict moral code about gender related personal problems.

Frightened of officials/professionals and accustomed to being judged negatively (not usually by nurses) Gypsies and Travellers can share telephones and sim cards Would not go to Citizen's Advice Bureau – not trusted Pride and preserving their community Reluctance to go into temporary accommodation which is perceived to be dirty, not fit for purpose and containing no cultural support.

Child who does not conform to the expected Gypsy Way can be subject to negative attention.

Superstition, folklore and family are strong influencers Not keen to mix outside community

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Appendix 12: Barriers Seen by Professionals Care Pathway Information only useful if client able to follow through and nobody assessed whether he was able to do this Health professional perceives access to GP as being only problem requiring attention Problems in Assessment

No case worker/lead professional with responsibility for family assessment unless child under 5 years involved No co-ordinated assessment or care with the family unit in focus (rather than individual children)2 No ongoing support for parents with learning difficulties Accessing external agencies even GP, requires tremendous effort which usually is too much without support

Support and advocacy needs Told to go to Citizen's Advice Bureau without consideration given to support needed. Now does not phone social worker Following assisted visit, uses CAB routinely

Lack of Co-ordination and Continuity of care3

Counter-productive to keep changing GP No case worker/lead professional with responsibility for planning care pathway, monitoring and closure unless child under 5 years4.

Client stuck in the middle (domestic violence and mental health) while services pass responsibility to each other Many professionals concerned, referral made but no follow up so nothing progresses No co-ordination of care although various agencies involved.

Client seems to be responsible for co-ordination and not capable of this at this time Necessary help not received within good time because no-one taking charge and viewing problems holistically Do not get letters when roadside so no continuity of care2

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Appendix 13 Mind Maps Understanding Peoples Lives KNOWLEDGE

Good knowledge of personal culture

‘Handed down by mouth’ Learn the Gypsy way Family Histories

Values practical knowledge gained verbally or visually or by experience

Poor understanding of ways of settled community

Very literal understanding

Not transferable to another situation

Academic knowledge undervalued

Learn through observing, trying, assisted practice, feedback

Lack of knowledge about how to access

Systems Low self worth, low self esteem, low self confidence Services Low self worth, low self esteem, low self confidence

Lack of knowledge about how to move within

Systems Low self worth, low self esteem, low self confidence Services Low self worth, low self esteem, low self confidence

Disrupted schooling

Non attendance

Moving on or being moved on Boys coming of age at 13 years Parents condoning or colluding truancy Perceived dangers of girls aged 13 years mixing with boys

Lack of attainment

Gives up Low self esteem, confidence and self worth Low level literacy Low self esteem, confidence and self worth Developmental difficulties Low self esteem, confidence and self worth Learning difficulties

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Low self esteem, confidence and self worth

Appendix 13: Mind Maps - Understanding People’s Lives

BELIEFS

Rooted in past

Or what has been proved Rituals of cleanliness

Non Gypsies seen as unclean Hospitals unclean Temporary accommodation seen as unclean

Self reliance

Or trusted other

Religion

Catholicism Born again Christian

Health

I survived without intervention

So my children will too MMR causes autism

Won’t do any good

What will be will be

The importance of body privacy

Females prefer female doctors Males prefers male doctor

Fear of control agencies

Police

Discrimination, won’t help, unjustly blamed

Social services

Removing children

Bailiffs

Destroy our homes Steal out possessions

Sexuality

Education

Assimilation of children

Lack of personal control

Anger, fear, frustration

Accepted norm for 16 year old females to cohabit/marry Females fidelity demanded Males promiscuity accepted Homosexuals and Lesbians not acceptable Too much knowledge a bad thing

The settled society does not care about us

Knowledge encourages experimentation

Low self worth dealing with settled community Low self esteem when dealing with settled community Lack of confidence when dealing with settled community

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Appendix 13: Mind Maps - Understanding People’s Lives ATTITUDES

Fear of assimilation

Preserving the culture and way of life

Resistance to change Looks down on permissive society Reluctantly tolerates the demands of society If it does not get done today, tomorrow will do My word is my bond If in doubt take no action Want opportunity to choose type of home

Mistrust of settled society

Professional agencies

Healthcare Social services Local authority Police Voluntary agencies

Formal education

Children remain with parents until 5 years Low expectations Within family Within society

Suspicious of professionals

Why bother Failure expected norm

Suspicious of motives Tired of being done unto

Sex education

Tired of short lived projects Tired of lack of cultural awareness

Promotes experimentation

Tired of lack of respect shown Once trust gained, professional seen as friend Want respect for culture and themselves

From settled society Gender specific interaction Values privacy Want personal respect

Some unrealistic expectations of professional helpers Risk of dependency Can get things done Role model Empowerment possible

Want to be treated with dignity Expectation of prejudice and discrimination

Defensive attitude Discrimination accepted as the norm and no longer challenged

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Understanding Peoples Lives

Appendix 13: Mind Maps - Understanding People’s Lives SOCIAL CONTEXT OF LIFE (ADULTS)

Traditions and values

Family focused

Children cared for by family members Non interference in other family’s problems Domestic Violence

No one interferes

Do not bring family or culture into disrepute Domestic Violence

Respect for elders Extended family gathering when family member ill Respect for the dead

Community Based

Private family issue Family secret

Relatives cared for within family Unlikely to use respite or care homes Additional stress Deeply affects extended family Family wake Large elaborate funerals Children kept off school Burn deceased belongings Daily visits to grave

People more important than time Friends highly valued Do not live 9-5 lives

Substance abuse

Alcohol Drugs Tobacco

Discrimination from settled community

Socially unaccepted by settled community

Not in my back yard Continual eviction fragments any attempt to be socially included Avoidance of settled society Mental health problems

Identity and ethnicity important

Often hidden when deemed necessary Fear, frustration, anger Lack of Human Rights Frustration, anger, anti-social behaviour

Social Exclusion

Frustration, fear, anger, anti-social behaviour, why bother Difficulties accessing services

Frustration, anger, fear Possible anti-social behaviour

Education Health Care Accommodation Employment Recreation Health inequalities High infant mortality Shorter life expectancy Fear of being “put down”

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Appendix 13: Mind Maps - Understanding People’s Lives SOCIAL CONTEXT OF LIFE (CHILDREN)

Family and community

Prime focus Must preserve the culture

Learn the Gypsy way

Animals

Horses

Status symbol Buying and selling Breeding

Dogs

Racing / sport

Guarding

Expectation for boys to come of age at 13years

Considered clean

Breeding Sport

Expectation to marry/co-habit within the community

Considered unclean

Parental expectations different to settled community

Children given greater freedom Normal behaviour has wider boundaries

Unidentified developmental issues

Show respect to the community Behaviour problems

ADHD Social skills disorder Autistic spectrum

Learning difficulties

Difficulties in school

Always one step behind other children

Always catching up

Aspirations must fit parental role and attitude/beliefs

Low parental expectations

Low motivation / why bother Leave school no qualifications Low motivation / why bother Leave school no qualifications

Schooling not always seen as important

Low motivation / why bother Leave school no qualifications

Secondary school does not fit practical aspirations

Lack of positive Traveller role model for boys

Bullying

The bullied

Low motivation / why bother Leave school no qualifications

Low motivation Fear

Why bother Leave school no qualifications

Frustration The bully

Anger

Fear

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Frustration Anger

Mel Hamilton-Perry. Ormiston 2010

Appendix 13: Mind Maps - Understanding People’s Lives SOCIAL CONTEXT OF WORK

Self employed where possible

Travel anywhere to work Buying and selling Fairs Scrap dealing Farm work Garden / tree work Manual jobs Cash in hand Most pay taxes – same as settled community Handshake seals a deal

Loss of traditional work

Migrants work for less money Loss of traditional stopping places Locations forbidding cold calling

Reduced opportunities for peddling goods Possible problems with police Complaints from residents Reinforces prejudice

Market forces

Discrimination

Low level or no literacy

High unemployment

Benefit dependency

No one gives us a chance

Anger, resentment, frustration

Hopelessness

Employers do not want to employ us

Why bother

Hopelessness

Rejected job applications due to site address

Why bother

Hopelessness

Difficulty completing job applications Difficulty understanding job description Lack of job centre support Diminished access to employment information Lack of IT skills

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Appendix 13: Mind Maps - Understanding People’s Lives INFLUENCES ON BEHAVIOUR

Discrimination

Institutional racism Negative media report Lack of cultural awareness Expectation of negative response

Retreat into family and friends Cultural norms observed rather than outside advice

Accommodation

Negative emotions

Anger fear, frustration with settled society

Government planning policies and Acts

1944 Highways Act Town and Country Planning Act 1948 (amended 1990) Caravan Sites Act 1965 and Control of Development Act 1960 The mobile home Act 1983 The Housing Act 1985, 1997 Planning and Compulsory Purchase Act 1991 The Criminal Justice and Public Order Act 1994 The Homeless Act 2002 The Anti-Social Behaviour Act 2004

Institutional racism Emotions Culture

Anger fear and frustration with settled society

Dialect English as a second language

Lack of understanding

Family

Gender Age Position within family and community

Religion Lack of education

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Low level literacy Poor communication skills

Who shouts the loudest gets heard

Emotions

Anger, fear and frustration

Appendix 13: Mind Maps - Understanding People’s Lives UNDERSTANDING EXISTING BEHAVIOUR

Education

Disrupted schooling

Mel Hamilton-Perry. Ormiston 2010

Non attendance

Syllabus not pertinent / one size fits all

Bunking off

Bullying and / or learning disability

Non attendance

Accommodation

Discrimination

Social exclusion

Gender roles

Patriarchal society

Domestic violence

Division of labour

Females

Apathy Depression Anti-social behaviour Retaliation Take back control Actions speak louder than words

Non interference

Males Different Values

Live for the moment

Caring role

Benefit dependency

Providing role

Reluctant benefit dependency

Want immediate service

Crisis management Chaotic lifestyle Avoidance of preventative healthcare Avoidance of society in general Culture and Tradition

Rituals of cleanliness Resistance to change Learned behaviours

Helplessness Give up at first hurdle

Struggle on

Easily frustrated / short fuse Negative Behaviour

Positive Behaviour

Recurring thoughts

Poor communication skills with settled society Low expectations from society and self

Failure to comply

Low motivation

Failure to comply

Low self esteem

Failure to comply

Low self confidence

Failure to comply

Low self worth

Failure to comply

Recurring emotions

Anger, fear, frustrations Aggressive, argumentative, anti-social, confrontational

Community values

Working together with their community Respecting community, culture and individual role Responding to community needs

Understanding Peoples Lives

Caring for the ill Needs of others before self

Sharing resources Borrow money and pay back Communal caring Adults and children Reluctance to use respite, elderly care, nurseries

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Appendix 14 Case Studies AB – Case study When AB was referred to the Senior Practitioner - Advocacy at Ormiston Travellers Initiative by NHS Bedfordshire, she was staying in temporary accommodation in a built up deprived area with her children. AB is an Irish Traveller, who had never lived in a house before. She said that she felt forced into attempting to live within the settled community due to her son’s failing physical health and the increased level of domestic violence she was suffering. the domestic violence, in her opinion, resulted from the stress that the refusal of her planning application placed upon herself and her husband.

The eldest son has complex health problems, and a serious medical condition which causes significant motor difficulty.

His condition is deteriorating and he needs regular treatments from multi-disciplinary teams. It is recognised that it would be beneficial for him to remain in one place.

When AB’s son took an overdose because he was so distressed and unhappy living in the temporary accommodation, the family decided to return to their land and try to fight for the right to live on there legally.

AB’s requests for an electricity supply have been refused because the site has no planning licence. This leaves the family dependent on generators, which is problematic due to the possible perceived noise pollution.

AB and her estranged husband owned a piece of land which bordered two counties. Planning permission to develop the land into a small family Traveller site for themselves and their six children had been refused. It appeared that AB was given incorrect advice when she submitted the planning application.

Local residents were against the development and fought against planning permission being awarded.

AB has put in a planning application for a stable block for her eldest son’s horse. If planning permission is granted as expected, the electricity supplier will install an electricity supply to the stable block. Understandably AB is angry that EDF will supply electricity for an animals stable, but not for a sick child’s home.

AB appealed under section 174 of the Town and Country Planning Act 1990 as amended by the Planning and

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Compensation Act 1991. The appeal was dismissed and the enforcement notice was upheld, although altered. An 18 month period of compliance was set. The family have to vacate their land and their mobile homes in September 2010. At the time of writing the family have no where else to go. The Council which is responsible for the area where AB lives have not provided an alternative site.

The lack of facilities is negatively impacting on the families lives.

The lack of electricity means that the family do not have running hot water or heating. They go to the local swimming baths to use the showers. Social services have provided the family with

Appendix 14: Case Studies - AB Case Study Calor gas heaters, but AB refuses to use them because of the amount of condensation they produce.

Various social workers from teams within two counties have been involved with the family. AB feels, and it has been observered, that the teams do not appear to communicate and there is a lack of ‘Joined Up Services’. AB is fed up of having to continually tell and re-tell the family’s history to so many different workers. She is also fed up of the empty promises that the family are given by the various social workers.

the pilot project drew to a close, AB and her family had to be signposted to another organisation to provide on-going support. AB felt let down, because she would have to start again explaining her family history.

A Children’s Community Mental Health team engaged with the family, contacted Ormiston Traveller Initiative and requested cultural information so that they could support the family in a culturally appropriate way.

AB asked the Senior Practitioner, Ormiston to support her to work with the multi-agency professionals. The Senior Practitioner, took a proactive role co-ordinating the multi-agency professional interventions with the family, by linking the various multiagency workers together, and facilitating open communication pathways.

The Senior Practitioner actively listened and in her role as advocate ensured that AB’s thoughts and feeling were actually heard. This empowered AB to regain some control over her family’s lives.

Unfortunately the work that Ormiston had undertaken was part of a time limited Health Needs Assessment project. When

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Appendix 14: Case Studies - CD Ormiston Case Study

CD – Ormiston Case study When CD was referred to the Ormiston Travellers Initiative, by NHS Bedfordshire, she was living in her own touring caravan on an un-licenced plot in a local authority Traveller site. She had two young children under five and was eight months pregnant.

CD had lived on a family plot in a different area until she was forced to leave when her trailer was burnt down. She had suffering years of violence and intimidation from her extended family.

CD moved into the area with some of her family members because she was told that there was a plot for her on the local authority site. However on arrival CD discovered that there was not a legal plot available for her. She had no where else to go and no other option but to stay on the plot illegally. Some of her family members caused a few problems on the site so CD moved onto another empty plot to distance herself from them. CD was not directly involved in the problems, however some of the other site residents saw her as part of the anti-social family and treated her with hostility. She felt the local authority workers also presented as hostile and were, on occasions, intimidating.

A homeless application was made but duty to housed was discharged as housing enquiries apparently establised CD was intentionally homeless. CD continued to argue that she had fled violence and subsequent investigation, by the Specialist Health Visitor, NHS Bedfordshire, established written proof of her claims.

Her family members were directed to leave, under section 77 of the Criminal Justice and Public Order Act 1994. The

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local authority responded to their legal obligation to make humanitarian enquires about the health and welfare of the CD and the children and made special considerations regarding the children, their homelessness and their education by allowing them to stay on the plot until they could secure alternative suitable accommodation.

When Ormiston became involved, CD was an extremely timid, fearful young woman, who at first would not make eye contact.

She stated that she felt that she did not have the right to ask for help and that if she did ask for help no one would want to help her.

Ormiston worked intensively with CD. To begin with CD felt too disempowered to attempt to engage with any of the professionals who were there to help her, so Ormiston advocated on her behalf. CD stated ‘I can’t talk to them, I wouldn’t know what to say’, ‘they won’t listen to me’, ‘they look down on me cos I am a Gypsy’ and ‘they might as well be saying blah blah blah, I don’t understand what they are telling me’. With support and encouragement CD gained in confidence, Ormiston took a step back and CD found that she could talk to people and that most listened and helped.

Ormiston supported CD to apply for social housing, to place bids on properties, apply for the benefits that she was entitled to, apply for charity grants and social funding grants, to view and accept a property, sign the contract and get the keys to her first home of bricks and mortar. CD has spent the last two weeks cleaning and painting the property, ready to move in. She states that she ‘can’t wait to move in,,,and is so excited’.

Appendix 14: Case Studies - CD Ormiston Case Study Ormiston liaised with EMTAS, to arrange a school and a nursery places for the two older children. CD is intending to access adult education with the intention of gaining the skills needed to enter the workplace she is very interest in becoming a health champion.

With advocacy and support CD has been empowered to take control of her own and her children’s lifes. Securing accomodation has been central to this process, but totally beyond CD’s ability to secure, unaided.

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Š NHS Bedfordshire. This document may not be reproduced in part or full without the consent of NHS Bedfordshire. Document reference number: 1002004/G&T/HNA