Roma Health Needs - building bridges between voluntary sector organisations and public sector (NHS) HEAR conference 25.03.2015 Gabriela Smolinska-Poffley Roma Support & Engagement Programme Leader And RSG Deputy Co-ordinator

Roma Support Group – profile: The Roma Support Group (RSG) is a registered charity and community-led organisation, which has been working with East European asylum seekers, refugees and migrants since 1998. Last year we offered direct support to 2,220 Roma refugees and migrants in London through: General Advice & Advocacy, Older Roma Engagement Project, Education Support and Aspiration Projects, Social Inclusion Schemes: Sport and Art and Policy and Campaigning Project Furthermore, last year we provided indirect support to hundreds Roma refugees and migrants across the UK through our Roma Engagement and Support Programme by working with professionals through training, specialist advice; and dissemination of our publications.

Roma Support Group’s health projects: Between 2005 – 2012 the RSG has conducted many health projects which provide valuable data on Roma health: 2005 - 2008 – Roma Health Awareness and Advocacy Project (DoH, Opportunities for Volunteers) 2009 – 2010 - Pacesetters Programmes (DoH) in collaboration with Newham NHS and East London NHS Foundation Trust to reduce health inequalities amongst Roma in East London 2008 - 2012 - Roma Mental Health Advocacy Project (King’s Fund Partners for Health in London)

Roma Support Group’s health projects:

Findings from the RSG’s health projects: 60% of Roma beneficiaries (2005-12) had poor physical health (e.g.: cancer, diabetes, epilepsy, hepatitis B, cardiovascular and respiratory alignments, multiple sclerosis) 43% of Roma beneficiaries (2005-2012) of the above, were suffering from mental health problems (including depression, personality disorders, learning disabilities, suicidal tendencies, self-abuse, dependency/misuse of drugs) Many health professionals have a poor understanding of their Roma patients’ health needs and culture

How is health viewed in Roma communities? Health (in particular sexual health, mental health, substance misuse and disabilities) is taboo subject, often not to be discussed even among closest family members. Particular fear and stigma is associated with mental illnesses Fear of being isolated from the community when diagnosed Very little knowledge about health conditions No specific vocabulary in Romanes to explain certain terms, emotions, feelings and even some parts of the body

Barriers that Roma face in seeking support Lack of knowledge of where to go – many will approach only these organisations and professionals, whom they feel they can trust. Language/ communication barriers – communicating in second language and a necessity to explain certain concepts that are non-existent in their mother-tongue. Illiteracy & English Language Barriers: Not understanding appointment letters, diagnosis and treatment Inability to use administrative procedures to re-arrange appointments and consequently being taken off the waiting lists. Not knowing how to be re-referred. Lack of trust: questionnaires and questions – especially for older members of the community, who can be very suspicious of the questions. Their purpose needs to be carefully explained.

Overcoming the barriers – recommendations Communication: Events, which allow the communities and professionals to come together and learn from each other; Bi-lingual health advocates: employing health advocates, who have a good understanding about Roma culture, customs and health related taboos; who have a good understanding of Increasing cultural awareness of NHS staff about Roma communities and their needs through training, newsletters, leaflets, etc. Increasing awareness of mental health within the community.

About Newham Transient Community Most Diverse Borough Lack of Commissioned services for migrant communities Poor communication between Voluntary and Statutory sectors Newham has the third highest deprivation rate and is also the most diverse Borough in London. It has one of the highest population turnover rates in London with large numbers of people moving into the borough for very short periods every year. Along with Brent, Newham has the most diverse population in the UK, although the distribution of ethnic groups is uneven across the borough. In 2002, Newham Council estimated that 8% (approximately 19,500) of its residents were from refugee communities. Newham ranks 5th highest in its proportion of residents born in EU accession states – more specifically, it is 2nd highest in its proportion of residents born in Lithuania and 4th in Romania. 2011 stats. Suicide is a high level indicator of mental health need in a population, and Newham has the 10th highest rate in London. The prevalence of serious mental illness in Newham’s population remained at 0.9% in 2007/8 and 2008/9.The admission ratio for affective disorder (disorders of mood) and schizophrenia is consistently and significantly higher than London and England averages. Currently, in Newham there is a lack of availability of specialist services based around language, cultural, therapeutic and psychosocial support services. The Borough tends to provide limited support for those suffering from PTSD at a community psychiatric level or for those at high risk.  Changes in the way that services are being commissioned as a result of funding cuts affect the way that migrant communities access services and the range of services available. There is a lot of pressure on voluntary sector organisations offering specialist support with limited funding, usually sourced from other non-statutory funding streams to meet the shortfall. This impacts on continuity of service provision, whereby once the funding ends, provision for the service user also comes to end creating a climate of provision which is unpredictable and prone to changes. This ultimately has a negative and adverse affect on clients and their mental health. Lack of a strong Voluntary Sector Network means fewer opportunities for dialogue between specialist projects and commissioners/decision makers. This results in poor understanding from a commissioning perspective of the needs of migrant communities in relation to mental health, with decisions being made with little input from this group. Voluntary Sector organisations, with limited capacity, may not be aware of the range of services available or pathways for accessing mental health support for clients. For a long time the Mental Health Providers Forum which had been an opportunity for both the voluntary sector and commissioners to meet to discuss mental health in the borough ceased to be active. With no active mental health forum how can the two begin to develop good communication?

Partnership with CCG in Newham: Closure of bi-lingual health advocacy – March 2014 Roma refugee and migrant forum – making contact with strategic professionals - Patient and Public Engagement Manager Newham CCG Meetings with CCG Research and data to support Roma specific service

Partnership with Mind in Newham: Mind in Tower Hamlets and Newham (MITHN) has a strong presence in Newham and a proven track record of developing a partnership approach to service delivery. Some of the services and activities include: Advocacy, Mental health support, Campaign, awareness raising and mental health awareness sessions Vulnerable Migrant Project  - support for Roma community Training workshops for Roma community (delivered by Hestia – ASK project and MIND) Mental Health Strategy – consultation meeting with MH comissioner E-booklet

Partnership with public sector – Recommendations: Understand local context and NHS structure Identify and outreach strategic professionals Work in partnership with larger and national charities Research your own community and keep good records to support your case

Resources: www.romasupportgroup.org.uk Roma Mental Health Advocacy Project Evaluation Report, Roma Support Group, 2012 Pacesetters Programme, Gypsy, Roma and Traveller Core Strand – Evaluation Report, 2010 Health and Social Care Needs Assessment of Eastern Europeans (including Roma) individuals living in Barking and Dagenham, UEL, 2010 Children of Roma (Druglink, Vol 25, Issue 6, Nov/ Dec 2010