Meeting the Health Care Needs of the UK Travelling Population

1. Meeting the Health Care Needs of the UK Travelling Population Margaret Greenfields - Research Director IDRICS, Buckinghamshire New University m.greenfields@bucks.ac.uk

2. Background information • Romany (English/Welsh) Gypsies recognised as ethnic minorities in 1989; Irish Travellers (2000) Scottish Gypsy-Travellers (2008). Roma also subsumed into the categories of protected communities under the ruling in the 1989 case. • At least 300,000 Gypsies and Travellers resident in Britain (CRE, 2004). Some estimates (controversially) suggest in excess of one million Roma have become are resident in the UK in the 1990s-2000s although best estimates tend to assume around 500,000 people from diverse EU countries (see Craig, 2011). • Approximately 2/3 believed in reside in housing (Cemlyn et. al., 2009) • As of 2011 approximately 20% of Gypsy/Traveller caravans are stationed ‘unlawfully’ rendering the occupants technically homeless. • Evidence from GTAAs suggests that Romany Gypsy women have an average of 3.5 and Irish Traveller women 5.9 children. Limited information to date on Roma family size in the UK.

3. Disadvantage and Social Exclusion • Stonewall ‘Profiles of Prejudice’ Survey 2001 – 35% of survey population prejudiced against Gypsies & Travellers • Scottish Social Attitudes (Bromley et. al. 2007) 37% respondents would be very unhappy if a relative married a Traveller-Gypsy • CRE – discrimination against Gypsies and Travellers the last ‘respectable’ form of racism (2005) • In excess of 90% of Gypsies and Travellers interviewed for GTAAs (all forms of accommodation) report experiences of enacted racism

4. Accommodation Issues Shortage of Sites/ some extremely poor quality/limited spend on upgrade and repair 20% caravan dwelling G&T households are ‘homeless’ Discrimination in the Planning Process (90% first applications fail – 2003) Increase in retrospective permissions 2003-2007 GTAAs were offering glimmers of hope however changes to planning regime and localism likely to have a severe and negative impact on outcomes of planning applications. TAT review (2011) and Ryder et. al. (2012) critique of Government policy, indicates most professionals are concerned that new policy initiatives and cuts will worsen the situation cf: Dale Farm Autumn 2011 Experiences of Housed Gypsies and Travellers Racism and Discrimination/Anxiety and Depression Roma migrants largely overcrowded and in poor accommodation – however anecdotally significant improvement on many former housing conditions – reports of ‘passing’ as Asian/Middle Eastern minimising discrimination….

5. High rates of tension and racism around sites/unauthorised encampments – physical abuse and threats common

6. Unauthorised Encampment

7. Educational Issues • Widespread adult illiteracy (estimated 35-40% of the whole population) TLRU 2001 • lack of access to schools • high mobility • experiences of bullying • early age of starting work • low cultural expectations of education 50%+ of sample in BNU/ARU research (2006) could not undertake basic tasks ‘easily’ or ‘feel comfortable’ when reading, writing or completing a simple form. • Roma Migrant adults have frequently experienced poor quality, segregated and abruptly terminated educational experienced. Young people in contrast as achieving relatively well in the UK system often outperforming Gypsy and Traveller pupils (see Ryder et. Al., 2011) • Gypsy/Traveller pupils as “the group most at risk in the education system today” – Ofsted 1999/2003

8. Decline in attendance at secondary level (1/3 of children registered on school roll as Gypsy/Roma/Traveller when start school still in school at Key Stage 4) DfES 2005/ TAT Review 2011 • >85% of children experiencing racist bullying (GTAA evidence) • 25% of self-identified GRT pupils met ‘national expectations’ in terms of 5 GCSEs and of these 12% v 58.2% of all pupils attained 5+ A*-C grade (2011 DFS data/TAT panel review). • Bullying frequently cited as a reason for early school leaving as well as cultural concerns over curriculum (sex education, exposure to substance abuse, mixed- gender schools, etc)

9. Travellers’ Health I • Data in UK largely predicated on Gypsy and Traveller health studies. Roma to date largely unresearched. • High rate of heart disease; diabetes: premature morbidity and mortality (Parry et, al., 2004; Matthews, 2008; Cemlyn et. al., 2009) • Decreased life expectancy – by 12 years women 10 years for men (Crawley, 2003) Leeds Baseline Census, (2005) indicates only 2.3% Gypsies and Travellers aged 60+ • Greatly increased levels of perinatal mortality and stillbirth (Hajioff and McKee, 2000; Sheffield Health Study, 2004; Matthews, 2008) • High childhood accident rate (Beach, 1999) and death from preventable diseases (Measles outbreak 2007) • 18% of G&T women have experienced the death of a child (Parry et. al., 2004) • Dramatic decline in health status over the age of 50 – GTAA evidence and see further Cemlyn et. al. 2009.

10. Travellers’ Health II • Environmental health issues – contaminated land, roadside encampments, etc (Clarke, 1998; Home and Greenfields, 2006; etc.) • “one young girl died from cancer, she didn’t even know she had cancer in the womb and had been on the site for 9 months and that’s one of the sites that are on a sewer bed or rubbish tips and children are picking up meningitis and kidney infections” (Richardson et al 2007). • Lowered rates of childhood immunisation for children where specialist Traveller Health Visitors are not available (Davis & Hoult, 2000; Parry et al, 2004; Matthews, 2008)

11. Disused Pitch and Utility Block Local Authority Site

13. Culture Specific Impacts of Grief and Bereavement • Close-knit nature of Gypsy and Traveller culture, high birth rate and pattern of extended family residence means that the death of an individual is keenly felt as a loss by a large number of kin including significant number of children. • “X lost his little girl too. His wife has died too. She was only 31 when she died... two little children he’s got” • “I suppose with us when you lose your mother, your head of the family, you’ve lost your mentor so you’re having to fill a pair of shoes as well as grieve a pair of shoes. When you lose one of your children its worse. You can’t explain the pain or the hurt when you’ve lost a kid”. • “I’m 36, I’ve lost two brothers [road accidents] a sister [cancer], my Daddy [heart attack] and one of my children [congenital illness] are gone before” • Bereavement and grief leading to high rates of long-term untreated depression and anxiety can impact on family functioning (Van Cleemput, 2007; Goward, et. al., 2006) exacerbated by lack of access to services, limited cultural knowledge of surrounding sedentary communities and casual racism.

14. Impacts of frequent moving/insecure accommodation impacting on access to treatment, support and long-term care • “Its like X down there that lost his baby in a cot death they were on the land for about 2 weeks and were invaded by police for 2 weeks and social services and that pathetic lot. She’s never recovered and then of course no quicker than the little child was buried, the baby’s belongings and everything were burned in the caravan, the next day they were evicted and of course that woman wasn’t there to get any care. She needed care, she needed somebody, a woman doctor, to say its alright my baby, everything is alright”. (Richardson, et. al., 2007) • Mother discharged from hospital 2 days after late miscarriage – evicted from roadside site 48 hours later, given prescription for anti-depressants – still taking them 10 years after event – no review of medication known to have occurred. Eldest daughter 17 responsible for household functioning and care of siblings [MG case files] • “bereaved parents stated that GPs overwhelming failed to offer counselling after a death preferring to ‘fob them off with a handful of pills’ (Richardson, et. al., 2007)

15. Depression and Anxiety • Parry et. al. (2004) found that residence in housing is for many Gypsies and Travellers associated with high rates of anxiety and depression. Frequency of ‘Travelling’ appears to act as a protective factor. • Only one robust identified study on Roma health (East London) Tobi et. al, 2010 – found high levels of depression and anxiety associated with previous experiences of discrimination and housing stress. • Residence in housing is for many (although not all) Gypsies and Travellers associated with enforced settlement as a result of lack of sites (Cemlyn, et al., 2009) • For many individuals, not only lack of appropriate accommodation, but loss of contact with a close-knit family and experiences of racism and discrimination lead to failure of housing placement or mental ill-health (“nerves”) • Older or disabled Gypsies and Travellers may report transfer into housing as a result of lack of suitable adaptations to caravans. • Housing may be associated with greater comfort but can lead to people feeling “like a bird in a cage” (Greenfields and Smith, 2007)

16. Learning Disabilities • No specific studies are known to exist in relation to the extent of learning disabilities and culturally specific needs of Gypsies, Travellers and Roma in the UK. • In part, given the acceptance of all forms of disability amongst GRT families, and a reluctance to seek specialist help (and qualitative/anecdotal data suggesting help may not be forthcoming when requested from local authority and health services) this is likely to relate to a lack of family identification of such needs other than in cases of profound disability. • Greenfields (2008) study of young Gypsies and Travellers attitudes to health and social care employment found relatively high levels of casual discussion amongst focus group participants on the learning disabilities of relatives and friends’ family members suggesting both a comfortableness with individuals with such disabilities and the commoness of the situation. • Anecdotally, and based on research experience, termination of pregancy arising from diagnosed Downs Syndrome or similar condition would be ‘unthinkable’. “you love whoever God sends you – how can people put someone away [terminate pregnancy, send for adoption, or place in a residential facility] because they are special”

17. Secondary analysis of GTAA evidence – on-going suggests that 39% of Gypsies and Travellers are caring for/supporting a family member with a long term disability which impacts on their daily life. This is notably higher than amongst surrounding populations which is estimated at 10% of the population, (Papworth Trust, 2011). • Whilst the existing data on GRT people and disabilities is not easily broken down into physical and learning disabilities, emergent data on the percentage of individuals living with a family member with epilepsy (often associated with learning disabilities) suggests a significantly higher prevalence rate than is found in ‘mainstream’ society (see further Richardson et. al., 2007). • Limited analysis of existing qualitative data suggests that GRT respondents experience of barriers to accessing services exacerbate the existent stresses and difficulties of caring for a family member with LD, although strong family support and ‘normalisation’ of home based care increases resilience. Where residence in caravans is desired by family members there are often significant delays in obtaining adaptations and GTAA evidence suggests that many households undertake adaptations themselves to their internal and external environment on sites (e.g. building ramps, etc) for people with LD and physical disabilities.

18. Women’s Health • Gypsy and Traveller societies are highly ‘gendered’. • Significant taboos exist on speaking of sexual health, gynaecological matters and pregnancy related issues before members of the opposite sex. • The relatively high birth rate and fairly high percentage of disabled family members reported in GTAA evidence can place significant caring responsibilities upon women. • Coupled with frequent moving, or residence in insecure accommodation, this can impact on women’s ability to access preventative health services – with women often minimising their own needs. • Low rates of cervical and breast screening have been found amongst these communities – with women expressing particular reluctance to attend clinics where no guarantee exists that female staff will be on duty. • Research evidence that in her 50s a Traveller woman may be the female head of her family with her older female relatives all having pre-deceased her. • Accordingly older women can be a a conduit of information and support for younger family members

19. Lack of ‘cultural awareness/competence’ amongst service providers • Health/Social care/Voluntary sector staff: failure to understand the importance of kin-group responsibilities (e.g family demands made by even quite distant relatives may be regarded as higher priority than professional expectations) – failure to attend appointments etc. • Literacy difficulties (and evictions, etc) as barrier to keeping appointments (Greenfields, 2008; Cemlyn et. al. 2009; Van Cleemput, 2010). See Tobi et. Al. (2010) for similar findings in relation to Roma migrants. • Support of family: gathering to support a person having medical treatment, (Lehti and Mattson, 2001) or following a bereavement – can lead to conflict with police/hospital and local authorities over numbers of visitors or caravans/vehicles parked at a specific location.

20. Men’s Health • Little research has been undertaken into men’s health amongst the Gypsy and Traveller communities. • Evidence exists of relatively high rates of smoking and drinking (Parry et al, 2004) and considerable anecdotal evidence, supported by small scale localised studies suggest excessive rates of cardio-vascular disease implicated in premature mortality. • Stress, a more sedentary lifestyle than in the past, and changing eating habits have been implicated in high rates of diabetes and associated ‘diseases of affluence’ • A culture of male stoicism and presumption of poor health from a relatively early age is associated with untreated medical conditions and preventable mortality or morbidity (see Van Cleemput et al, 2007; Matthews, 2008)

21. Barriers to Engaging with Services • Problematic of accessing GP and hospital appointments (Power, 2004; Parry et. al., 2004; Matthews, 2008) • Suspicion in relation to engaging with health staff,language barriers and lack of awareness of rights for Roma people (Poole and Anderson, 2008; Tobi et al. 2010) • Communication (and travel) difficulties when accessing medical/social care and voluntary sector agencies (Power, 2004; Parry et. al., 2004; Cemlyn et. al., 2009) • Lack of facilities for terminal care on Gypsy/Traveller sites means that death may occur in hospital rather than (as may be preferred) amongst family at home (Jesper et. al, 2008) .

22. Inequalities in registration with GPs – discrimination, mismatch in expectations, ‘expensive’ patients; lack of preventative health care, etc. (Hawes, 1997; Van Cleemput, 2000; Matthews, 2008; Cemlyn et. al., 2009) • Over-reliance on A&E departments (associated with GP registration problems/long delays and avoidance of ‘gate-keeping’ receptionists), and consistent anecdotal evidence of avoidable mortality resulting from lack of early health intervention (Cemlyn et.al, 2009) • Fast tracking of Gypsies and Travellers to preventative services as part of NHS Primary Care Framework protocol (2009) – in recognition of high level of unmet need and health inequalities. • 2012 inter-ministerial review – indications that Inclusion Health will be retained. • Projects with Gypsies and Travellers currently under development (FFT/LeedsGATE, NIHR Immunisation research etc.) See Van Cleemput (2012) review article on impact of Inclusion Health programmes.

23. Womens’ HealthProgramme: Aims & Content

24. Rationale for Project • Research suggests that community members would welcome advice & care provided by trained/qualified community members (Greenfields, 2008) • Culturally appropriate educational materials and use of trusted community members as health advocates (in line with work carried out with other BME communities) are anticipated to reduce negative health impacts of membership of GRT communities. • Proposal – to devise a training programme targeted at Gypsy and Traveller women to equip them to signpost services and provide health advocacy support to their peers.

25. Programme Aims & Content • The project was devised in partnership between One Voice 4 Travellers Ltd, Bucks New University, Buckinghamshire Primary Care Trust and Buckinghamshire Community Foundation (funders) • Key Aims: to undertake a culturally sensitive community health needs assessment of site residents [on-going] • utilise community advocate skills to provide training and delivery of advice and information on specific health needs (such as accessing screening for cardio-vascular health or promoting healthy eating) to site residents • Focus particularly on the health needs of older women and young mothers as a gateway to family health improvement • Topics include: delivery on sensitive topics such as emotional wellbeing (based on Mental Health First Aid); recognising impacts of DV on children/families and communities; substance misuse as well as ‘women’s health’

26. Headline Findings – Health Audit • 27 respondents - 65% female • Age range – 18-65+ (only 2.5% were pensioners) • 22 (81%) reported being registered with a GP – 17 (63%) of whom in Buckinghamshire • 16 (59%) reported being registered with a dentist – 11 (41%) of whom with an NHS dentist • 4 (15%) had seen or were registered with an optician • Generally respondents visit a GP/dentist only when they have a specific problem • Tendency for children to have more regular access than parents, and for men to have least access. There is frequent praise for children’s health care provision by GPs

27. 10 respondents (37%) reported problems registering – but 14 (52%) had experienced ease of registration/or made a point of going to surgeries familiar with enrolling Travellers • 14 (52%) reported dissatisfaction with dealing with Reception staff – • 18.5% reported respiratory problems in their household; • 22% of families had a resident with diabetes; • 15% cardiac problems+ 15% epilepsy • 7% stroke(s). • 34% had someone with mobility problems; • 26% reported someone with blindness/eyesight difficulties; • 11% deafness or hearing problems and 15% epilepsy. • In addition; • 18.5% of households had someone experiencing mental illness/depression. • Overall 60% of respondents felt they had access to appropriate and adequate healthcare.

28. Mean number of people living in each household – 4.17 (ranging from household size of 1 to 15) • 70% of households surveyed had children • 30% housed one generation, 52% housed 2, 9% 3 (including a mother with two children caring for a grandmother) and 4% housed 4 generations • 4 households included a woman who identified as being a carer for a household member and a further 3 households included a carer for someone living in a separate ‘unit’ or trailer – not always on the same site. • Aspiration ­– To experience continuity of care: A young female noted that: “It can be hard to talk to them and tell them things when you don’t know them”. An elderly man stated: “We would like to [ build a relationship with one service provider]. Would not have to keep explaining [ourselves/our lives]”

29. Project Outcomes • The six people currently working as health advocates in their community report confidence in sharing health information and offering advice to their peers and further afield (e.g. Activities at Gypsy horsefairs). • The training has helped to prepare them to be able to maintain confidentiality, has developed interview skills and empowered theme to help community members. • Feedback received from participants on the course tell us that they are actively passing on information to their husbands, parents and neighbours, e.g. first aid skills • The interactive delivery of drug awareness and education using a drug box containing commonly used imitation drugs, has proved to be a useful tool for engaging and facilitating group discussions between students and presenters. • Local health audit devised with the intent of informing local health care delivery (see headline data above).

30. Key success has been that cultural and language barriers have been overcome so that advocates and communities are exchanging terms such as ‘nerves’ for mental health to reflect the true meaning of both positive and negative aspects to wellbeing. Professionals who participated in the programme report higher levels of cultural awareness and better links into neighbourhood groups. • Smoking Cessation Intervention (follow-up one day training) completed May 2011 – access to funding has led to delays in continuing the programme but culturally appropriate smoking cessations materials are currently under development.

31. She said: “Due to my lifestyle this course and the practical tips I’ve received could potentially prove life-saving. For example, we visited the Uxbridge Campus and were given a class in resuscitation and how to place people in a recovery position.

32. Participant Feedback • “Due to my lifestyle this course and the practical tips I’ve received could potentially prove life-saving. For example, we visited the Uxbridge Campus and were given a class in resuscitation and how to place people in a recovery position”. • “The other women and I can now work as health advocates across all of the Traveller communities and use what we have learnt to benefit others. I have a much clearer, balanced picture now, and can actually help people by giving them proper advice and the truth.”

33. Key Resources on Traveller Health • Cemlyn, S., Greenfields, M., Burnett, S, Whitwell, C & Matthews, Z. (2009), Inequalities experienced by Gypsy and Traveller Communities: A Review, London: Equality and Human Rights Commission. • Clark C & Greenfields M (eds.) (2006) Here to Stay: The Gypsies and Travellers of Britain, Hatfield: University of Hertfordshire Press • Greenfields, M (2009) Reaching Gypsies and Travellers Primary Health Care 19(8) pp26-27 • Matthews, Z (2008) The health of Gypsiesand Travellers in the UK London: Race Equality Foundation • Parry G, Van Cleemput P, Peters J, Moore J, Walters S, Thomas K & Cooper C (2004) The Health Status of Gypsies and Travellers in England Sheffield: ScHARR • Ryder, A., Acton, T., Alexander, S., Cemlyn, S., Greenfields, M., Richardson, J., Smith, D. and Van Cleemput, P. (2011), A Big or Divided Society? Final Recommendations and Report of the Panel • Review into the Coalition Government Policy on Gypsies and Travellers, Travellers Aid Trust: Carmarthenshire. • Ryder et.al., (2012) A critique of UK Government policy on Gypsy, Traveller and Roma Communitieshttp://www.edf.org.uk/blog/wp-content/uploads/2012/06/Coalition-Paper-5th-June1.docx

34. Web Resources • Derbyshire Gypsy Liaison Group http://www.dglg.org/publications-health.php • Friends, Families and Travellers http://www.gypsy-traveller.org/health • Irish Traveller Movement (Britain) http://www.irishtraveller.org.uk/ • Leeds Gypsy and Traveller Exchange http://www.leedsgate.co.uk/ • Pavee Point http://www.paveepoint.ie/

35. Questions? Discussion Points? The Way Forward in Wales?