Overview/Challenge
Underserved groups are often hidden in routine data sources often through poor access to services or poor recording this perpetuates the development of management and services not configured for their needs. We are exploring innovative methodologies to address this long-standing issue and ensuring they are widely discoverable. We know that health outcomes among Gypsies and Travellers are poorer than in the general population. However, we know little about mental health in Gypsy and Traveller children and young people. We wanted to use routine health data in Wales, accessed via the DATAMIND Mental Health Data Research Hub, to look at the mental health of these children and young people. Until recently there was not a straightforward way to find these individuals in Welsh health data, so we needed to find a different solution.
Impact and outcomes
We identified approximately 800 children and young people who had spent time living in a Traveller site in Wales. We know from the 2011 census that around 75% of Gypsies and Travellers do not live on a Traveller site, so this is likely to be only a small proportion of the true Gypsy and Traveller population in Wales. We didn’t find any statistically significant differences between this group and the general population for rates of common mental disorder or self-harm, but this may be because our numbers were very small, meaning our estimates were imprecise. We did however find that our study group were significantly more likely to miss a follow-up outpatient appointment. This is important because these young people may not be receiving the care that they need. We know from other studies that Gypsies and Travellers are a particularly vulnerable group, and may face barriers such as discrimination when seeking health services.
We think that the difficulty of finding this group in routine health data is an important message from our study. In particular, it has been suggested that the paper-based census may be discontinued from 2031 onwards, with routine data from health and other services forming the primary source of data, with supplementary surveys used only where data gaps are identified.
What’s next?
Routine data sources are a key resource used to commission services and to assess need; if vulnerable groups are not visible in these data, or are significantly under-estimated, it is less likely that the services they need will be made available. An ethnic code designating Gypsy and Traveller ethnicity was introduced in Wales in 2017 and if fully implemented, will help to close this gap. Such a code is not yet available in English NHS data.