1. Making Headway for Children with Acquired
Brain Injury in Northern Ireland; The Past Present & Future for Services
Naomi Brown, Regional Clinical Specialist Occupational Therapist
Introduction
Approximately 200,000 children a year in the United Kingdom, experience an acquired brain injury (ABI) [1]. Northern Ireland has a relatively small population of approximately 1.8 million people with roughly 378,000 of these people under the age of 16 [2]. A local audit of severe traumatic brain injuries identified 871 admissions (aged 14 or younger) regionally, in a single year. The research also acknowledged issues with coding for mild/ moderate admissions and reported this number is likely to be an underestimation of the actual figure [3].
Advancements in medical treatments have undoubtedly contributed to a rise in ABI survival rates, with long-term associated difficulties becoming more prevalent [4]. Childhood ABI can lead to complex and lifelong cognitive, mental, social, language and physical issues, all of which can have a significant impact of a child’s functional performance.
The Present
A 4 year review was completed to highlight the volume of work undertaken by the CABCS. Services were provided to a range of professionals including those employed in health, education and the voluntary sector. Support was provided on the full range of biopsychosocial difficulties associated with ABI. CABCS assisted in addressing issues effecting participation in all areas of occupational performance including activities of daily living, education and socio-recreational pursuits.
CABCS offered signposting services to ensure staff met the full occupational performance needs of their service users, including family supports, leisure activities, health and educational services. This role became a more predominant for the team in the last review year. This is thought to be related to the success of the consultation and training services. As the knowledge and skills of practitioners has increased, their confidence and competence in managing childhood ABI issues without additional support, has improved.
Introductory ABI training was provided to 661 trainees in the CABCS’s first year, with 1378 people receiving training over the 4 year period. In the final year only 188 training places were offered given the quantity of regional staff already trained. Training is multidisciplinary but maintains a very functional focus for staff. It aims to increase awareness of the importance of ABI history, biopsychosoical issues associated with ABI, functional management strategies, regional support services and treatment planning.
The Past
In 2011, a regional review document was published outlining the proposed care pathways for individuals with ABI, in Northern Ireland. At the time of publication there were well established, regional multidisciplinary, adult community ABI teams. However, it was noted that comparable services did not exist for children. As a result of the pathway documents [5], the Children’s Acquired Brain Injury Consultation Service (CABCS) was established. The CABCS was not intended to replicate the adult provisions, but was instead tasked with upskilling the paediatric workforce who were already treating these children in Trust community settings e.g. CAMHS or learning disability services. A ‘service-facing-service’ was proposed, meaning CABCS would offer support to staff but no direct clinical contact with the children or their carers. A multidisciplinary team was recruited in with a 1.0WTE staff cohort for the province, with only 0.3WTE Occupational Therapy provision. CABCS was tasked with providing 3 strands of regional support services for staff including-
Increased regional staff upskilling due to the vast number of consultations completed in the early stages of the service development, have allowed for a significant drop in the requirement of 1:1 consultations. Almost twice as many referrals can be dealt with via signposting than 1:1 consultation at this stage due to the greater baseline knowledge of service providers.
The Future
The CABCS plans to continue to support staff to manage the functional needs of children who have experienced an ABI. It is anticipated that increased use of the signposting service will facilitate CABCS availability to provide regional, multidisciplinary consultation for the most complex childhood ABI cases in Northern Ireland.
In terms of training, the introductory programme will continue to run but with less frequency. In the forthcoming year CABCS endeavor to provide advanced specialist ABI training for allied health professionals, to further develop the skills of our Northern Irish clinicians.
Consultations are the most time consuming element of the CABCS role. They involve the multidisciplinary team providing expert advice to staff in relation to prognosis, treatment planning, assessment needs and the holistic impact of childhood ABI. Over the 4 years, 149 staff received consultations, which were provided as a regional service (i.e. CABCS staff travelled to their location). Staff that have received consultations (and often also training) have been able to apply newly acquired knowledge and skills to future ABI cases and have become more proficient in identify previously unrecognised ABI issues.
References
[1] Neurological Alliance, Neuro numbers, a brief review of the numbers of people living in the UK with a neurological condition London: the Neurological Alliance
[2] Northern Ireland Statistics and Research Agency (2011) Census 2011: Key Statistics for Northern Ireland viewed 3rd May 2018
[3] Cooke, S., George, J., McCloskey, B., O’Neill, S., McGriskin, A., Caldwell, J. (2003). Audit of the Management of Patients with Severe Traumatic Brain Injury in Northern Ireland Report.
[4] Jordan J & Linden M.A. (2013) “It’s like a problem that doesn’t exist”: The emotional well-being of mothers caring for a child with brain injury. Brain Injury, 27(9),
[5] Public Health Agency, Regional Acquired Brain Injury Implementation Group (RABIIG); Acquired Brain Injury Pathway for Children & Young People (2011)