Gaelan Komen
Policy and Research Manager, Policy Connect
Andrew Bateman
Professor, School of Health and Social Care, University of Essex
Government leadership can join up data, raise awareness and transform quality of care for the millions living with acquired brain injuries.
Acquired brain injuries (ABIs) are a shrouded spectre in public health. These ‘hidden’ disabilities affect the lives of millions of Britons, but the public and responsible professionals alike are broadly ignorant of their pervasiveness and effects. A drive to join up available information and address data gaps can shed light on the realities of living with ABI and bring better outcomes for all affected.
ABI realities: complex care needs and disjointed services
The conditions of people with ABI are typically complex and individualised. As well as a latent risk of complications, emotional regulation, behaviour, cognition and physical capabilities are varyingly affected.
Care models can be disjointed. Care requires the input of multiple specialities on top of a bedrock of social support, but providers can have limited visibility of one another’s work. Neurologists hold data from scans but can lack social workers’ information on behaviour or an occupational therapist’s data on recuperation.
Social services meanwhile often have poor understanding of ABI. These problems of impersonal, disintegrated and deficient ABI care lie in limited information.
Care requires the input of multiple
specialities on top of a bedrock of
social support, but providers can have
limited visibility of one another’s work.
A strategy to plug data gaps and streamline services
It would be reasonable for all people with ABI to have a community care plan that meets their needs. To deliver this, coordinated comprehensive action needs to be built into a new strategic goal that brings together the many systems involved.
There is a need and opportunity to build on the sustained work of the national charity UKABIF (United Kingdom Acquired Brain Injury Forum) and organisations linked with ABI to achieve this. The Heads Together project for example brought together academics and practitioners to develop a toolkit for social workers to better understand ABI following the 2019 tragedy. Building on such guidance can ensure the consistent delivery of services and collection of data.
Assistive technology and data-driven strategy
To best identify what works, when and for whom, services should also provide the latest technologies. Assistive technology (ATech) offers a window into the invisible effects of ABIs: cognitive aids, communication devices and smart wearables gather continuous data streams for key indicators such as sleep and activity levels. A technology prescription framework can ensure authorities collect critical daily data.
A data-driven strategy can unlock the insights of assistive technologies and the value of all services. To transform the lives of millions, the Government must ensure its sweeping upcoming NHS reforms lay the groundwork for concerted action on acquired brain injury.
