Recent national service mapping studies have found wide variation in levels and nature of services for people with brain injury, with particularly poor services for those with hidden disabilities (cognitive and mental health problems). There is emerging evidence for specific rehabilitation interventions for some of these hidden disabilities, but there is no evidence regarding models of service design or delivery. Furthermore, the rehabilitation evidence base is applicable to those who have good motivation to engage in rehabilitation and reasonable self-awareness of difficulties. Those with the most complex hidden disabilities are likely to present many additional challenges for services. These areas are either neglected or very poorly covered in documents that guide practice. Novel conceptual frameworks and methodologies for studying complex and heterogeneous service users, and their interactions with teams and services, are required as a first step in the development of evidence-based guidelines to improve service provision.
This project aims to establish how the needs of people with complex ‘hidden disability’ might best be described, identified, responded to and met by services, in terms of both costs and outcomes. The project will lead to guidance and tools for improving service organisation and delivery for this small but costly clinical group.
This is a mixed-methods, multi-disciplinary and multi-components project. Applying an organisational case study approach, we seek to explore the interactions between service users with complex needs, healthcare professionals, interventions and service structures. The project focuses on a national specialised service, the Oliver Zangwill Centre for Neuropsychological Rehabilitation (OZC). The project comprises three interacting strands focusing in parallel on service user characteristics and experiences, service and team processes and design, and conceptual frameworks and tools for improving understanding of clinical and service complexity. Please click here for more information.
Specific studies include:
- Policy analysis of documents that guide practice (BSRM/RCP guidelines; NSF for Long Term Conditions, ; Traumatic Brain Injury Rehabilitation Guidelines, New Zealand.
- Referrals to the OZC – analysis of consecutive referrals to a national specialised centre for rehabilitation of complex ‘hidden disability’ with the aim of characterising clinical complexity.
- Service User Journey and Stakeholder Experiences – follows consecutive referrals to the OZC through their rehabilitation programmes, capturing clinical outcome and health economic data, interventions delivered, disruption and adaptation of the programme in response to clinical challenges.
- Service (re)design – focuses on the application of systems engineering principles and tools to the design of complex rehabilitation services.
To date our studies have identified the following:
- Those referred to and funded by the NHS to attend a national specialised rehabilitation centre have a combination of post-injury cognitive, emotional and communication problems in addition to pre-injury social and/or mental health (including substance misuse) difficulties. In a regional specialised brain injury service for children, over one third of accepted referrals had a pre-injury developmental problem such as ADHD or autistic spectrum disorder, and a further third had parents with mental health problems.
- UK documents that guide practice provide little guidance regarding neuropsychological aspects of care especially regarding complex hidden disability and engagement of people with brain injury in services or interventions.
- Service delivery models need to be complex (i.e. involve multiple professionals and/or agencies) but also adaptive (i.e. responsive to varying and unpredictable needs of service users). Systems modelling approaches may be able to support teams to have the structure necessary to facilitate interdisciplinary working and at the same time be sufficiently adaptable to meet service users’ unpredictable needs.
Local services have been influenced by this work:
- Cambridgeshire Youth Offending Service has sought collaboration to aid identification of service users who have histories of brain injury and how best to meet their specific needs.
- The Evelyn Community Head Injury Service has adopted a clinical data collection proforma from the START study to support their service evaluation.
Our main partners in this project are the Cambridgeshire Community Services NHS Trust (including the Evelyn Community Head Injury Service), the Cambridgeshire and Peterborough Foundation Trust (including a new paediatric brain injury rehabilitation service), the Engineering Design Centre, University of Cambridge, the MRC Cognition and Brain Sciences Unit, Headway Cambridgeshire and Cambridge University Hospitals NHS Foundation Trust. Service users from the Oliver Zangwill Centre have collaborated in the development of some of our studies via the service user group, as have team members.
We have tried to break down traditional barriers between academic researchers and clinical (NHS) and care management (local authority) practitioners by employing Practitioner Researchers, embedded in the service, to support the engagement in the research process of staff from different disciplines and backgrounds.
For more information contact Dr Isabel Clare, Department of Psychiatry, University of Cambridge, firstname.lastname@example.org or Dr Fergus Gracey, email@example.com