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Amser Am Newid AMSER AM NEWID NEUROREHABILITATION EDUCATION CRIMINAL JUSTICE SPORT-RELATED TRAUMATIC BRAIN INJURY WELFARE BENEFITS SYSTEM July 2021 www.ukabif.org.uk This report is based on ‘Acquired Brain Injury and Neurorehabilitation – Time for Change’ published in October 2018 by the All-Party Parliamentary Group on Acquired Brain injury. The original version has been edited so it is specific for Wales. Thank you to all the contributors to the original version and to the following who have contributed to this version: • Educational Psychology Service Gwynedd and Môn • Neurological Conditions Implementation Group • Headway Regional Groups and Branches in Wales • Her Majesty’s Prison and Probation Service Wales • Noah’s Ark Children’s Hospital, • North Wales Brain Injury Service • South Wales Acquired Brain Injury Forum • South Wales Major Trauma Network • South Wales Police • Stroke and Neurological Conditions Implementation Group • Swansea University • Swansea Bay University Health Board • The Child Brain Injury Trust • University of East Anglia • University Hospital of Wales • Wales Neurological Alliance • Welsh Neuropsychiatry Service Special thanks to Dr Leanne Rowlands, Senior Lecturer and Researcher in Neuropsychology, Arden University and Bangor University, for researching and drafting this document. The production of this report was made possible with the support of Kyle’s Goal. 2 TIME FOR CHANGE IN WALES REPORT 2021 CONTENTS TIME FOR CHANGE IN WALES 4 07 SUMMARY OF KEY RECOMMENDATIONS 5 OVERVIEW OF ACQUIRED BRAIN INJURY 6 NEUROREHABILITATION 9 Key issues Recommendations Overview Case studies: Josh and Kyle Political aspirations EDUCATION 19 Key issues Recommendations Overview Case study: Sioned CRIMINAL JUSTICE 23 Key issues Recommendations Overview Case study: Lucinda SPORT-RELATED TRAUMATIC BRAIN INJURY 27 Key issues Recommendations Overview Case study: Lee WELFARE BENEFITS SYSTEM 33 Key issues 40 Recommendations Overview Case study: Euron TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 3 Amser am Newid In 2018 the All-Party Parliamentary Group (APPG) on Acquired Brain Injury (ABI), chaired by Chris Bryant MP for Rhondda, launched a report ‘Acquired Brain Injury and Neurorehabilitation – Time for Change’ to raise awareness of ABI, and to seek improvements in the support available for individuals that are directly affected by ABI, and for their families and carers1. Although much of the information in the original report is applicable to individuals with ABI in Wales, this document focuses on neurorehabilitation in Wales because: • With the establishment of a Major Trauma Network (MTN) for South Wales and Powys, it is timely to advise the members of the Senedd, Health Boards, Local Committees and health professionals of the crucial role of neurorehabilitation in optimising recovery from ABI, and ensuring that services are ‘fit for purpose’ • There are currently no inpatient rehabilitation services in North Wales, despite an identified need and efforts to improve this provision2 • Appropriate provision of support for people with ABI is necessary for a sustainable and healthy Wales, and for meeting the goals of the ‘Well-being of Future Generations (Wales) Act 2015’3 REFERENCES 1. Acquired Brain Injury and Neurorehabilitation - Time for Change. All-Party Parliamentary Group on Acquired Brain Injury Report. September 2018. https://cdn.ymaws.com/ukabif.org.uk/resource/resmgr/campaigns/appg-abi_report_time-for-cha.pdf (accessed April 2020) 2. Llandudno Hospital Project. Cycle Two Report for Rehabilitation Project Team: Identification of preferred Service Solution. Betsi Cadwaladr University Health Board. May 2010. Accessed April 2020 http://www.wales.nhs.uk/sitesplus/documents/861/ Cycle%202%20SBAR%20Rehabilitation.pdf (accessed April 2020) 3. Welsh Government. Well-being of Future Generations Act: The Essentials. Welsh Government, Cardiff; 2015. https://futuregenerations.wales/wp-content/uploads/2017/02/150623-guide-to-the-fg-act-en.pdf (accessed April 2020) 4 TIME FOR CHANGE IN WALES REPORT 2021 SUMMARY OF KEY RECOMMENDATIONS NEUROREHABILITATION CRIMINAL JUSTICE • There is an urgent need in Wales to review the • Criminal justice procedures, practices and incidence of Acquired Brain Injury and ensure existing processes need to be reformed to take into neurorehabilitation services are adequate and ‘fit for account the needs of individuals with Acquired purpose’ for children, young people and adults, with Brain Injury new services implemented as required • Training and information about Acquired Brain • Children, young people and adults with Acquired Brain Injury is required across all services including the Injury in Wales should have access to high quality police, probation, prison services and the Courts inpatient and community-based neurorehabilitation. • Brain injury screening for children, young people Their neurorehabilitation needs should be assessed and adults is required routinely, and at the earliest shortly after admittance to hospital, delivered during point of contact with the Criminal Justice System the inpatient phase, and continued, if required, in the • If an Acquired Brain Injury is identified, local community neurorehabilitation is required with the • There is a need for cooperation between Health, appropriate interventions planned and Social, and Education departments, and funding for implemented depending on injury severity. This inpatient and community neurorehabilitation services could include Acquired Brain Injury Awareness needs to be reviewed training for current Criminal Justice System staff • Neurorehabilitation must be a key consideration in to adapt their practices. In the cases of more the new Major Trauma Network for South and West severe brain injury, they may require specialist Wales and South Powys, with a clear pathway to intervention with trained professionals appropriate services • It should be mandatory for the Rehabilitation SPORT-RELATED TRAUMATIC Prescription to be given to all individuals with an BRAIN INJURY Acquired Brain Injury, not just those who have • Funding for collaborative research is required been in a Major Trauma Centre, on discharge from to evaluate and improve assessment tools, hospital. Copies should also be sent to their General develop objective diagnostic markers, and better Practitioner and given to the patient and family understand the recovery process including post- concussion syndrome and potential long-term EDUCATION risks of sport-related brain injury • An education campaign is required in schools • There is a need to review the incidence of children and communities to improve awareness and and young people with Acquired Brain Injury in the understanding of sport-related brain injury. education system in Wales This should be effected with the support of • All education professionals should have a minimum government departments potentially including level of awareness and understanding about Acquired the Department for Education and Skills, Brain Injury and the educational requirements of Department of Health and Social Services, children and young people with this condition and Public Health Wales (i.e. completion of a short online course for all • Government should take the lead with clear school-based staff), with additional training for the sport-independent concussion guidance and named lead professional supporting the individual policies. Sport associations should work with an Acquired Brain Injury and Additional Learning collaboratively with government and professional Needs Coordinators clinical bodies to implement these policies and • Many children and young people with Acquired Brain to improve health professionals’ knowledge of Injury require individually-tailored, collaborative and concussion management integrated support for their return to school, and • The National Health Service should develop throughout their education better pipelines for the diagnosis and care of • An agreed ‘return-to-school’ pathway plan is required, sport-related brain injury, including post-injury led and monitored by a named lead professional, to follow-up for earlier detection of post-concussion provide a consistent approach and support for the syndrome individual, their family, and teachers • There is a need to ensure that Statements of Special WELFARE BENEFITS SYSTEM Educational Needs (and Individual Development • Training is required for all assessors involved Plans in future) have consistent input from with individuals who have Acquired Brain Injury neuropsychological services to ensure that provision • Re-assessment for welfare benefits should only is fit for the individual’s needs. The advice in the take place every five years Statement should be specific, with no room for • A brain injury expert should be on the consultation interpretation, to ensure that each individual is getting panel when changes to the welfare system the appropriate support consistently are proposed TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 5 OVERVIEW OF ACQUIRED BRAIN INJURY DEFINITION OF ACQUIRED BRAIN INJURY Acquired Brain Injury (ABI) is any injury to the brain which has occurred following birth. ABI includes: Traumatic Brain Injuries (TBIs) such as those caused by trauma (e.g. from a road traffic accident, fall or assault) and Non-Traumatic Brain Injuries (non-TBIs) related to illness or medical conditions (e.g. encephalitis, meningitis, stroke, substance abuse, brain tumour, and hypoxia). ABI is a leading cause of death and
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