New research calls for action over lack of mental health care for Gypsy, Roma, and Traveller Communities

Gypsy, Roma and Traveller communities face some of the most stark inequalities in access to healthcare in England and remain subject to dire mental health outcomes.

New research out today commissioned by the NHS Race and Health Observatory, and led by The University of Worcester, addresses the lack of mental health care provision, despite the significant need, and captures first hand insight and good practice examples from six effective services. These services are mainly run by voluntary Gypsy, Roma, and Traveller organisations for members of these communities.

Factors, both structural and systemic, mean considerable shame and stigma is still associated around the term mental health with some communities preferring to use terms such as ‘bad nerves’. Whilst shame, stigma and structural barriers contribute to a number of areas in which Gypsy, Roma, and Traveller communities experience health inequalities, this is worsened by a lack of granular data and tailored health services, as well as healthcare professionals who do not understand the communities’ needs or lifestyles. Mental health services are especially poor for these groups, and data shows a high number of suicides.

It is estimated the suicide rate of this group is up to seven times higher than for all other communities, and that they have a life expectancy of up to 10 years less than the national population average. Lack of access to digital services, low literacy levels, shortage of local and national data collection, and limited financial investment all significantly hamper access to local health services and prevent customised services.

These and more findings will be presented at an online report launch of Inequalities in Mental Health Care for Gypsy, Roma, and Traveller Communities, Identifying Best Practice https://events.teams.microsoft.com/event/db645204-11fd-47ac-8f40-e1561af20c6f@b85e4127-ddf3-45f9-bf62-f1ea78c25bf7 taking place on Thursday September 28, between 3.30 – 5pm.

Speaking ahead of the launch, Dr Habib Naqvi, Chief Executive of the NHS Race and Health Observatory said:

“We know that Gypsy, Roma, and Traveller communities face stark challenges in accessing psychological therapies and other mental health services. This report lays bare the mental health issues and stigma faced by these communities first hand. We are pleased to have co-produced with these communities, a clear set of practical, tangible actions and recommendations for more equitable mental healthcare provision.”

The launch will include a presentation of the research around the significant mental health needs of these communities; first-hand experience and insight from those involved in the case study sites; a Q&A and practical recommendations for health and mental health providers to action around the country.

Expert panellists include representatives of the Observatory’s Mental Health working group, the Gypsy, Roma and Traveller Social Work Association and the University of Worcester.  Insight gathered over 12 months of research was undertaken in collaboration with research co-authors, Gypsy and Traveller Empowerment Hertfordshire UK (GATE Herts), and the Gypsy, Roma, Traveller Social Work Association (GRTSWA) and involved 70 community and 21 staff members.

Dr Peter Unwin, Principal Lecturer in Social Work, University of Worcester, said:

“It has been a pleasure to carry out this research in co- production with community members and to have met so many inspiring people who have developed mental health services against the odds. We should all now work together to ensure that this report on the health inequalities in Gypsy, Roma and Traveller communities leads to real change and equality of opportunity.”

Despite the lack of national investment in national mental health care provision, there are many examples of locally organised services doing targeted work with these communities.  Researchers visited effective services run in Hertfordshire, Leeds, Lincolnshire, York, Cambridgeshire, and Ireland (the latter due to its provision for young people). Each site represents an example of novel, progressive initiatives which have broken down barriers for Gypsy, Roma, and Traveller communities in need of mental health support.

Data was difficult to fully assess regarding the uptake and impact of services, due in part to the organisations studied not having the resources to collect and analyse such data and also to non-reporting of ethnicity (for fear of discrimination).

Professionals’ lack of expertise and knowledge about Gypsy, Roma, and Traveller cultures was further identified as a significant deterrent to take-up of mainstream services.  In 2022, Friends, Families and Travellers noted that out of 89 suicide prevention plans in England, only five mentioned Gypsy, Roma, and Traveller communities and only two listed any action plan strategy.

This month’s England Suicide Strategy (2023-2028) gives two mentions to Gypsies, Roma and Travellers but does not afford these communities priority status nor mention them in its associated Action Plan.

Josie O Driscoll, Chief Executive Officer, GATE Herts, said:

“GATE Herts as a community led organisation has a huge task ahead to try to normalise and destigmatise mental health issues within our communities if we are to begin to reduce deaths by suicide. Over 80% of Gypsies and Travellers surveyed by GATE Herts in 2018 had been personally affected by suicide and have been known to experience multiple bereavements by suicide, two to five family members on average.

“Despite all of this, Gypsy and Traveller communities are rarely considered in local policies and strategies and while we are delighted that we are recognised as an at risk group in the newly published Suicide Prevention Strategy, it doesn’t go far enough and a lot more needs to be done to tackle entrenched inequality and serious disparities faced  by Gypsy, Roma and Traveller communities.”

Across the six good practice case studies identified in research, the majority of funding was charitable and short term, reflecting the lack of investment from Government and NHS in potential lifesaving, mental health resource and suicide reduction services.

Co-chair of the All-Party Parliamentary Group for Gypsies, Traveller and Roma, Baroness Whitaker, said:

“The stark inequality in mental health outcomes in the Gypsy, Traveller and Roma communities, so well captured in this report, must now be addressed properly by state provision.  Implementing the excellent recommendations would go far to give a measure of fair treatment to these already disadvantaged  communities, who suffer so much prejudice and discrimination.”

Feedback from individuals obtained from focus group and individual interviews, provides a rich insight.  One participant said: “They understand the way we speak here, and don’t use that fancy language when they talk to us – other services often speak in a way we don’t understand.” Men, in some cases, were reluctant to acknowledge mental health problems because this is traditionally seen as sign of weakness. Another participant said: “I think it’s difficult for men to talk about. No one likes to admit that something’s going wrong for him. He has to be the big man.”

‘Drop-in’ services – not badged as ‘mental health’ services – were highly valued by community members and dealt with a wide range of problems spanning mental health issues to neighbour disputes and financial difficulties.

Several other interviewees mentioned how, in their past experiences, allocated time that should have been spent on their own therapy, was instead taken up by them explaining Gypsy, Roma, or Traveller culture. Reflecting on the worst thing about being a Traveller, a young girl pointed to the fact that people think Traveller girls have “no hopes or dreams, unlike most other young women from all other ethnicities.”

Key findings include:

• Widespread fear and mistrust of services among these communities towards public services, a structural barrier that needs to be removed.

• A lack of local and national data collection, preventing customised service provision, and slowing down investment.

• Waiting lists and digital forms of access do not fit with the needs of many Gypsy, Roma, and Traveller communities.

All aspects of engagement were co-produced with members of Gypsy, Roma, and Traveller  communities who validated and agreed the report’s recommendations, conclusions and outputs. Researchers are now calling for actions from the NHS, Local Authorities and mental health providers to address inequalities beyond health and consider broader structural issues.

Jackie Bolton, co-founder of the Gypsy Roma Traveller Social Work Association, said:

“I believe this report will benefit members of our communities who have suffered in silence for too long. As a Traveller myself I’ve seen how poor mental health and suicide impacts on individuals and families. From the perspective of a Social Worker I can see it’s a systemic issue with services just not knowing how to help us; this report will change that.”

A number of report recommendations, grouped under Policy, Research, Practice and Celebration, include:

• NHS England should publish standards to ensure that local data collection is improved across both statutory sectors and voluntary Gypsy, Roma, and Traveller organisations – without good data and understanding, investment in services is unlikely to happen.

• Research funders should recognise the need for research that addresses the particular sensitivities regarding the mental health issues of Gypsy, Roma, and Traveller peoples in the UK.

• The few men’s Gypsy, Roma, and Traveller groups in existence should be involved in research into their needs and experiences in order to establish what works in this neglected area of mental health.

• Events such as ‘Gypsy, Roma, and Traveller History Month’ should be celebrated within school, health, and social care services.

Researchers also note the gap in health and social care workers being taught about the cultures of Gypsies, Roma, and Travellers, the lack of diversity training programs that include these communities and the few role models of professionals and leaders from Gypsy, Roma, and Traveller backgrounds.