Gypsy, Roma and Travellers’ access

to and use of mental health services:

a nested case-control study

Hannah Walsh South London & Maudsley

Dr Eddie Chaplin South London & Maudsley

& London South Bank University

Acknowledgements

This project was carried out under the research mentor

scheme for nurses and allied health professionals

funded by the National Institute for Health Research

Maudsley Biomedical Research Centre and Dementia

Unit

The research mentor scheme initiative is designed to

enable frontline clinicians to develop their research skills

in carrying out small-scale projects

Overview

• Defining Gypsy, Roma, Travellers

• Background and context

• Aims and Objectives

• Methods

• Results

• Conclusions, limitations and recommendations

Background: History

Irish

Travellers

Roma Gypsy &

Romany

Celtic nomadic

Romanichals: India (Egypt); in Europe from 1400s

Richardson 2012; Travellers Aid Trust

Gypsy, Roma, Travellers

• History of nomadism, though many now live in

“settled” accommodation

• Close knit family life

• Self-employed

• Low literacy levels

• Mistrust of state institutions, state-sought

information

• Self-definition

• GRT – similarities and differences

Definitions for this study

•Irish Travellers: Originally from

Ireland

Gypsy, Romany: Born and brought

up in the UK

Roma: Born and brought up in Europe

NHS personal demographic service ethnic categories :

• White Irish Traveller

• White Traveller

• White Gypsy/Romany

2011 Census included

Gypsy/Romany, Irish Travellers for

first time

London population = 0.1%,

(8196); Southwark n= 263 ; UK

58000 (0.1%) (ONS)

“Hard to reach community” or “hard to reach services”? • Health outcomes worse than other minority groups

• Poor maternal health, high rate of infant mortality, lowered life

expectancy

• High levels of discrimination, low socio-economic status, loss of

nomadic lifestyle

• High rates of self-reported depression and anxiety, substance

misuse, problems in GP registration, high suicide rates (Ireland)

• Inverse relationship between use and need

• Poor ethnic monitoring –invisible in services

Carew 2013, Cemlyn 2009, Peters 2009, Richardson 2012, Van Cleemput 2007, 2012

Study aims and objectives

Aim: To explore GRT access to, and use of mental health services to identify differences in demography or service use in comparison to a control group

Objectives: • identify demographic characteristics of both case and

control groups • identify for both groups:

diagnoses services accessed use of Mental Health Act referral sources treatment outcomes

Method

Design:

Nested case-control design

Sample:

Case group: all Gypsy, Roma, Travellers accessing

services since 2007

Control group: equal number, other ethnicity

Analysis:

Descriptive statistics and odds ratios to highlight

differences between groups

Case Register Interactive Search: CRIS

• Anonymised database of former service user case notes;

all potentially identifying information is removed

• Requires ethical approval from CRIS committee

• Contains approximately 270,000 case notes, dated from

2007

• Produces information on what you’ve requested only –

no “fishing” is possible

Results: Case and control groups

•Case group n=275

• Coded ethnicity = 121 • Traveller = 23

• Gypsy/Romany = 56

• Irish Traveller = 41

• Free text reference = 203

• Duplicates removed = 49

• 155 male, 121 female

• 0.001% (0.1%) of SLaM population

Control group n=275

• 275 patients matched: by age within 6 months and gender

• Ethnicities unknown; not GRT

Age at first referral

Mean age: Case: 29.28 Control: 25.22

GP registration

GP registration: case

234

2417

Registered Unregistered Data missing

GP registration: control

249

1412

Registered Unregistered Data missing

OR of case being unregistered:

0.16

Inpatient & Mental Health Act use ever

Inpatient? Case Control

Yes 65 33

No 210 242

Odds ratio of being an inpatient if GRT = 2.21

MHA used? Case Control

Yes 41 16

No 24 17

Odds ratio of MHA use if GRT = 1.82

Diagnosis at first contact

0 5 10 15 20 25 30 35 40

F00 - 09 Organic

F10-19 Substance use

F 20-29 Schizophrenia/psychosis

F30-39 Mood disorders

F40-49 Neurotic/stress

F50-59 Physiological/physical

F60-69 Personality

F70-79 Learning disabilities

F80-89 Psychological development

F90-99 Childhood onset

Control Case

Missing data

Case: 128

(47%)

Control: 178

(65%)

OR of case

group

having an

SUD =

3.44

Conclusions

•Low rates of ethnic coding

•Roma not represented clearly

GP registration suggests little difference

Slightly older at first referral

Substance use disorder finding fits with previous research

Inpatient and MHA rates – more restrictive experience, or higher risk perceived?

Inverse relationship of service use and need

Further research required to explore use of services, including qualititative design

Limitations

•Method of identifying sample challenging

Unable to adequately stratify into Gypsy, Roma, Traveller; challenge of adequate classification of each

Unable to adjust for confounders with this design and database

Recording inaccuracies, bias, large number of missing data

Initial diagnosis gives only very limited picture

Next steps

Practice recommendations:

Address inadequate ethnic coding

Present findings to community group and Trust

Research recommendations:

In-depth research into service use

Qualitative design to elicit community views and

experiences

Consider potential for further discrimination

References

Carew AM, Cafferty S, Long J, Bellerose D, Lyons S (2013) Travellers

accessing addiction services of Ireland (2007-2010): Analysis of routine

surveillance data. Journal of Ethnicity in Substance Abuse, 12: 339-355.

Cemlyn S, Greenfields M, Burnett S, Matthews Z, Whitwell C. Inequalities

experienced by Gypsy and Traveller communities: a review. Equality and

Human Rights Commission.

Peters J, Parry G, Van Cleemput P, Moore J, Cooper CL, Walters SJ. (2009)

Health and use of health services: a comparison between Gypsies and

Travellers in other ethnic groups. Ethnicity and Health 14:4: 359-37

Richardson J, Ryder A. Setting the context: Gypsies and Travellers in British

society. In Richardson J, Ryder A, editors. Gypsies and Travellers:

Empowerment and inclusion in British society. Bristol: The Policy Press;

2012. pp3-21

Van Cleemput P, Parry G, Thomas K, Peters J, Cooper C (2007) Health-related

beliefs and experiences of Gypsies and Travellers: a qualitative study. J

Epidemiol Community Health. 61:205-210