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 disability in the United Kingdom (UK)1. It is a chronic condition, with ‘hidden’ disabilities and life-long consequences. The prevalence is difficult to quantify due to inconsistencies in definitions and classifications, data collection discrepancies and inadequate reporting. Table 1 presents key UK (which also includes Wales) and Wales-specific statistics, and Table 2 includes the ABI admissions across the seven Health Boards in Wales. However, the number of individuals in Wales living with the effects of ABI is unknown, and a review of the incidence of brain injury in children, young people, and adults in Wales is needed.

Table 1: Key UK (England and Wales) facts WALES (DATA OBTAINED FROM HEALTH BOARDS) • 16,872 ABI hospital admissions in Wales (2016-2017) = 46 admissions a day / 1.9 per hour • 6,937 Admissions with head injury in Wales (2016-2017) • 84,374 ABI admissions in Wales in 5 years (2012-2017) • Most ABI admissions were to Betsi Cadwaladr University Health Board (20,187 in 5 years) • Men were 1.4 times more likely to be admitted for a head injury than women in Wales (2016-2017)

UK1,2 • 1.3 million people are living with Traumatic Brain Injury (TBI) related disabilities in the UK • 348,934 admissions to hospital with an ABI in the UK (2013-2014) • Incidence of female head injury has increased by 24% since 2005-2006 • Estimated cost of TBI in the UK is £15 billion (based on premature death, health and social care, lost work contributions and continuing disability), equivalent to approximately 10% of total annual NHS budget

Table 2: ABI admissions across Health Boards in Wales Year 2012-2013 2013-2014 2014-2015 2015-2016 2016-2017 Total number of ABI admissions 16,406 17,152 16,945 16,999 16,872

BRAIN INJURY IN WALES Wales has a population of 3.1 million; almost 2.3 million Individuals from lower socio-economic backgrounds people live in South Wales and there are large, rural, are more likely to suffer an ABI and experience poorer sparsely populated areas. The country comprises outcomes3. Rurality is associated with poor general 1909 small areas, with a number of relatively deprived health outcomes4, and geographical challenges in locations (see Figure 1). The Welsh language has equal accessing ongoing rehabilitation services. Currently, language status with English (The Welsh Language Act many individuals with ABI access inpatient rehabilitation 1993). Nearly 28% of the population, and 75% of adults services in England which impacts on the opportunity in Gwynedd, can speak Welsh. The geographical nature for bilingual service provision. and language status have a number of implications for ABI and neurorehabilitation in Wales.

6 TIME FOR CHANGE IN WALES REPORT 2021 Figure 1: WELSH INDEX OF MULTIPLE DEPRIVATION (WIMD, 2019) Indicates areas of relative deprivation.

BY LOWER LEVEL SUPER OUTPUT AREA RANK 1 – 191 10% Most Deprived 192 – 382 10-20% Most Deprived 383 – 573 20-30% Most Deprived 574 – 955 30-50% Most Deprived 956 – 1909 50% Least Deprived Local Authority

Map from https://gov.wales/welsh-index-multiple-deprivation-full-index-update-ranks-2019

THE CONSEQUENCES OF AN ABI physical, cognitive, academic, emotional, and psychosocial The consequences of an ABI depend on which part of effects; they may be temporary or permanent, but an the brain is affected (see Figure 2). An ABI can cause individual will often have life-long disabilities.

Figure 2: Functional areas of the brain BRAIN INJURY LOCATION – FUNCTIONS AFFECTED FRONTAL Frontal lobe: Movement, short-term LOBE 1 PARIETAL LOBE memory, planning, reasoning, speed of 2 processing, personality, behaviour and judgement, language production

4 Parietal lobe: Perception and interpretation 3 of touch, position, vibration; integrating sensory information OCCIPITAL LOBE Occipital lobe: Perceiving and processing vision TEMPORAL LOBE CEREBELLUM Temporal lobe: Sound perception and language comprehension; long-term memory BRAINSTEM Cerebellum: Balance and coordination and LOBES OF THE BRAIN AND LOCATION OF some cognitive functions SOME SPECIALISED BRAIN FUNCTIONS: 1 Primary motor area – movement of opposite side of body Brain stem: Connections from brain 2 Primary sensory area – touch, vibration, body position of to spinal cord; control of movement opposite side of body of eye, face, swallowing, vocalisation; 3 Regions involved in language production control of breathing and heart rate; 4 Region involved in language comprehension modulating consciousness

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 7 Brain injury is associated with greater mental health physical disabilities are more easily apparent, a difficulties2, higher rates of depression or mood large majority of individuals with ABI have ‘hidden’ disorders5, and/or childhood developmental disorders disabilities (See Table 3). ABI affects the entire family, including disruptive behaviour difficulties6. While and appropriate support is required for all.

Table 3: Long-term effects of ABI • Impaired memory • Poor impulse control • Reduced concentration and attention • Decreased awareness of one’s own or others • Poor initiation and planning emotional state • Lack of self-monitoring • Sleep disturbances • Poor judgement • Mental health problems • Impaired social skills • Impaired communication skills • Other medical conditions e.g. post-traumatic epilepsy • Motor and sensory impairments

BEHAVIOURAL AND EMOTIONAL DIFFICULTIES CONDUCT DISORDER ATTENTION PROBLEMS INCREASED AGGRESSION IMPULSE CONTROL PROBLEMS COGNITIVE PROBLEMS EDUCATIONAL UNDERACHIEVEMENT SOCIAL/RELATIONSHIP DIFFICULTIES

ABI MAY PREDISPOSE TO LATE diseases such as Alzheimer’s disease and Parkinson’s NEURODEGENERATIVE DISEASE disease later in life7. Repeated brain trauma, including In addition to the disabilities directly attributable to all repetitive exposure to sub-concussive trauma may also types of ABI, there is increasing evidence that moderate result in a particular form of neurodegenerative disease and severe TBI may be a risk factor for neurodegenerative – Chronic Traumatic Encephalopathy (CTE).

REFERENCES 1. Acquired Brain Injury: the numbers behind the hidden disability. Headway 2015. 2. Traumatic brain injury and offending: an economic analysis. Parsonage M. Centre for Mental Health. 12 July 2016 https://www. centreformentalhealth.org.uk/publications/traumatic-brain-injury-and-offending (accessed April 2020) 3. Humphries TJ, Ingram S, Sinha S et al. The effect of socioeconomic deprivation on 12 month Traumatic Brain Injury (TBI) outcome. Brain Injury 2020;1-7. DOI: https://doi.org/10.1080/02699052.2020.1715481 4. Jones J, Curtin M. Traumatic brain injury, participation, and rural identity. Qualitative Health Research 2010 Jul;20(7):942- 951. DOI: https://doi.org/10.1177/1049732310365501 5. Hesdorffer DC, Rauch SL, Tamminga CA. Long-term psychiatric outcomes following traumatic brain injury: a review of the literature. The Journal of Head Trauma Rehabilitation 2009;24(6):452-9. DOI: 10.1097/HTR.0b013e3181c133fd 6. Max JE. Neuropsychiatry of Pediatric Traumatic Brain Injury. Psychiatric Clinics 2014;37(1):125-40. DOI: 10.1016/j. psc.2013.11.003 7. Wilson L, Stewart W, Dams-O’Connor K et al. The chronic and evolving neurological consequences of traumatic brain injury. The Lancet Neurology 2017;16(10):813-25. DOI: 10.1016/S1474-4422(17)30279-X.

8 TIME FOR CHANGE IN WALES REPORT 2021 NEUROREHABILITATION

KEY ISSUES • Early access to neurorehabilitation for children, young people, and adults with Acquired Brain Injury in Wales is crucial to optimise their recovery and maximise their potential • There are currently few specialist neurorehabilitation services in Wales, and even fewer paediatric services. For the people of North Wales there is no inpatient unit and no specialised paediatric service • Rehabilitation Prescriptions are not made available to all individuals with an Acquired Brain Injury, and General Practitioners do not always receive a copy, so cannot facilitate access to neurorehabilitation services post-discharge

RECOMMENDATIONS • There is an urgent need in Wales to review the incidence of Acquired Brain Injury and ensure existing neurorehabilitation services are adequate and ‘fit for purpose’ for children, young people, and adults, with new services implemented as required • Children, young people, and adults with Acquired Brain Injury in Wales should have access to high quality inpatient and community-based neurorehabilitation. Their neurorehabilitation needs should be assessed shortly after admittance to hospital, delivered during the inpatient phase, and continued, if required, in the local community • There is a need for cooperation between Health, Social Care, and Education departments, and funding for in- patient and community neurorehabilitation services needs to be reviewed • Neurorehabilitation must be a key consideration in the new Major Trauma Network for South and West Wales and South Powys, with a clear pathway to appropriate services • It should be mandatory for the Rehabilitation Prescription to be given to all individuals with an Acquired Brain Injury, not just those who have been in a Major Trauma Centre, on discharge from hospital. Copies should also be sent to their General Practitioner and given to the patient and family

OVERVIEW

WHAT IS NEUROREHABILITATION? Neurorehabilitation is a process of assessment, treatment and management by which individuals with a brain injury, and their family and carers, are supported to achieve their maximum potential for physical, social, and psychological function, and promoting quality of living.

Neurorehabilitation is delivered by a multidisciplinary team (MDT) with specialist training. An MDT commonly includes a Rehabilitation Consultant (trained and accredited), Rehabilitation Nurse, Neuropsychologist, Speech and Language Therapist, Physiotherapist, and Occupational Therapist.

Neurorehabilitation has a key role in the management of individuals with ABI. The extent of the neurorehabilitation required will depend on the nature and severity of the brain injury, and the programme should be tailored according to the individual’s needs. Each individual’s care pathway should be clearly defined, and a referral made at the earliest opportunity to a local specialist rehabilitation service.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 9 NEUROREHABILITATION HAS A CRUCIAL ROLE IN THE ABI CARE PATHWAY

Table 1: Key roles of neurorehabilitation • For individuals admitted to hospital with an ABI who have complex rehabilitation needs • Implemented after the individual’s immediate medical and/or surgical needs have been met • Improves physical, cognitive, behavioural, and emotional outcomes • Has a major role in relieving the pressure on beds in the acute services • Supports the safe transition of the individual back into the community

Reduced length of hospital stays, and associated reductions in staffing costs Decreased requirement for residential and nursing care Improved functional independence Reduced carer burden Avoids and/or minimises disability Improves return to work Optimises recovery

Enables individuals to reach their maximum potential post-injury

DIFFERENT LEVELS OF referred to the relevant neurorehabilitation service, NEUROREHABILITATION SERVICES ranging from Level 1 to Level 3 units. Level 1 units ARE REQUIRED represent high cost/low volume services for Category Individuals with an ABI requiring neurorehabilitation A individuals. Level 2 units mainly provide services for are categorised as A, B, C or D, depending on the Category B individuals, and Level 3 units mainly serve severity of their condition (A = most severe), and Category C and D individuals (see Figure 1).

Figure 1: Care pathway for individuals with an ABI

Patients with Complex Rehabilitation Immediate Care Specialist Rehabilitation Prescription needs Specialist Level 1 and 2 services

Acute Care ITU Neurosurgical / Trauma Centre Hyper-acute Acute Stroke Unit Rehabilitation Level 2 Secondary Category B needs

Level 3 Rehabilitation services Level 3-inpatient services HOSPITAL HOME Specialist Community Rehabilitation Supported Discharge Multidisciplinary rehabilitation Hospital at home Specialist vocational rehabilitation Early community rehabilitation Slow stream residential rehabilitation

Community Reintegration Enhanced participation DEA – supported return to work

Integrated Care Planning Long term support Single point of contact Join health and social service planning SEVERE DISABLING ILLNESS OR INJURY Multi-agency care

10 TIME FOR CHANGE IN WALES REPORT 2021 NEUROREHABILITATION IS EFFECTIVE Currently, Level 1 neurorehabilitation services AND SAVES MONEY are provided across South Wales from University There is a great deal of robust evidence to support the Hospital Llandough near Cardiff and in West Wales at clinical and cost-effectiveness of neurorehabilitation1-6. Neath Port Talbot Hospital. It is one of most cost-effective interventions that the National Health Service (NHS) provides, and one of The new rehabilitation unit opened at University the few services in medicine that results in a long-term Hospital Llandough (UHL) in June 2021 and replaced decreased cost to the economy. The front-loaded the unit at Rookwood Hospital. There are 22 cost of providing early neurorehabilitation is rapidly neurorehabilitation beds and 26 spinal beds and the offset by longer-term savings in the cost of community unit also benefits from out-of-hours medical support care, making it highly cost-efficient7,8. These savings being co-located with Radiology services at the UHL are substantial, and have been estimated at £500 per site. The new facilities include a dedicated SMART week for each ABI survivor that requires specialist assessment room, a self-contained bungalow providing neurorehabilitation. The cost savings are accompanied patients the opportunity to practice independent by better physical, cognitive, behavioural, and living skills and to stay overnight, a hydrotherapy pool, emotional outcomes. Where recovery is incomplete, gymnasium and consultation rooms. New therapy neurorehabilitation improves functional independence garden spaces will also be established for patients. and reduces the burden on carers. Where outcomes are better, neurorehabilitation improves the rates of Neath Port Talbot Hospital has 13 beds for complex return to work and productivity9,10. These benefits are neurological cases. amplified when neurorehabilitation is followed through into the community11. There is an established weekly in-reach service to UHW for spinal injury, TBI, and amputee patients. CURRENT STATUS OF ADULT Rehabilitation triage, assessment, intervention, and NEUROREHABILITATION SERVICES support is provided across Mid and South Wales, and IN WALES appropriate transfer to is made to rehabilitation units. Neurorehabilitation was largely overlooked when the Major Trauma Networks (MTNs) were established Community neurorehabilitation services are also in England, following the 2010 NHS Clinical Advisory provided by Health Boards across Wales: Group for Major Trauma recommendation that • The Community Brain Injury Team (Cardiff & Vale MTNs provide coordinated care pathways. With UHB) the establishment of the MTN in Wales, there is an • The Community Neuro-rehab Service (Cwm Taf opportunity to ensure this mistake is avoided. Morgannwg UHB) • The Community Neuro Services (Powys THB) North Wales • Community Neurorehabilitation Service (Stroke) The Betsi Cadwaladr University Health Board (BCUHB) (Aneurin Bevan UHB) is part of the West Midlands MTN, that supports the • The Regional Clinical Neuropsychology Major Trauma Centre (MTC) in North Staffordshire. Service, including the Community Brain Injury BCUHB sends individuals with major trauma to the Rehabilitation Service (Swansea Bay UHB), and the Royal Stoke University Hospital (RSUH). Residents of Brain Injury and Complex Neuro Service (Hywel North Powys also feed into the West Midlands MTN, Dda UHB) and the Birmingham, Black County, Hereford, and Worcester MTN. LIMITED NEUROREHABILITATION SERVICES FOR CHILDREN AND The North Wales Brain Injury Service (NWBIS), YOUNG PEOPLE developed in 1998, is a community-based multi Neurorehabilitation services for children in Wales disciplinary team (MDT), providing outpatient are limited. From April 2010, neurorehabilitation rehabilitation for individuals with ABI. Assessment for children with ABI was transferred to the seven and longer-term low intensity rehabilitation and Health Boards, and planning undertaken through review are provided within the community. Individuals a joint committee, the Welsh Health Specialised in North Wales cross the border into England for Services Committee (WHSSC). Individuals who inpatient neurorehabilitation. meet the criteria for specialist inpatient paediatric neurorehabilitation under the WHSSC policy are South Wales referred to Alder Hey Children’s Hospital, Liverpool The MTN for South and West Wales and South Powys (North Wales) or Noah’s Ark Children’s Hospital for is currently being established and UHW has become a Wales (NACHfW) in Cardiff (South Wales). MTC. The Morriston Hospital, Swansea is a Trauma Unit (TU) with specialist services. There will be a further The Noah’s Ark Children’s Hospital for Wales four TUs, and two rural trauma facilities. The NACHfW, situated at UHW, provides secondary

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 11 and tertiary services for children and young people There are currently no dedicated or commissioned (from birth to sixteen years), in areas specifically mental health/neuropsychiatry services for ABI relevant to trauma care. This is a consultant-led MDT survivors within secondary care mental health services service, and includes a specialist inpatient paediatric or Community Mental Health Teams (CMHTs) in neurorehabilitation unit with capacity for four Wales. This often leads to barriers in stepping children and young people with ABI. Outpatient care patients down and managing their often lifelong and is provided for up to one year, linking with general burdensome mental health and neuropsychiatric paediatric services. sequelae of ABI in the community. Some patients may/ have been accepted and managed with CMHTs but this There are no other specialist NHS paediatric is dependent on the clinical enthusiasm, experience and neurorehabilitation services in Wales, either inpatient expertise of the lead psychiatrist within that team. or long-term in the community. Community mental health services for ABI survivors ADULT NEUROPSYCHIATRY SERVICES therefore can be variable and inconsistent and The high prevalence of mental health problems in inequitable – a problem which is exacerbated by the survivors of brain injury is well known, however this geography of Wales. does not translate into commissioning of targeted mental health services. REHABILITATION PRESCRIPTIONS GUIDE ACCESS TO SERVICES The Welsh Neuropsychiatry Service is an All- The Rehabilitation Prescription (RP) is a valuable tool Wales tertiary neuropsychiatry service based at that comprehensively documents the rehabilitation the University Hospital Llandough, Cardiff and Vale needs of the individual with ABI. It identifies how these University Health Board. The service is commissioned needs will be addressed in the longer term (see Table and funded by the Welsh Health Specialised Services 2). An effective RP improves communication along Committee (WHSSC). the care pathway and optimises access to individual services. Its remit is primarily for tertiary and specialised neurobehavioural and neuropsychiatric assessment and A ‘best practice’ tariff-based RP system was introduced neurorehabilitation. The service is for the assessment, to NHS England in 2019. RPs must be completed for management and care of patients with non-progressive all major trauma patients seen at an MTC in England, and non-degenerative acquired brain injury who including individuals from North Wales seen at the present with mental health, neurobehavioural and West Midlands MTC . Copies of the RP should neuropsychiatric presentations that are difficult be given to the General Practitioner (GP) and the for other services to manage. Patients may be individual with ABI and their family. Individuals with an accepted into the service for Inpatient, Outpatient, ABI treated outside an MTC are still unlikely to receive Community or Day Rehabilitation treatment and/ a RP. The Clinical Reference Group for Major Trauma or neurorehabilitation. The service has funding for 10 is currently reviewing the use of MTC RPs, to see if inpatient beds and covers the whole of Wales. they should be rolled out to all TUs and how this might be implemented. The service has close working relationships with the regional adult neurorehabilitation services and the For people with ABI seen at the new South and West community neurorehabilitation services in Mid and Wales and South Powys MTN, RPs are required for South Wales. all individuals seen at the MTC, using the ‘Patient Knows Best’ platform, which is accessible to all health The service can provide specialist neuropsychiatry professionals, the individual, and their family. People liaison assessment and advice to: the regional Level 1 seen at all the TUs will also have RPs on the ‘Patient specialist neurorehabilitation services (based at Knows Best’ platform. LLandough and Neath Port Talbot Hospitals); to the Major Trauma Centre and neurosciences services at RPs should be made available to all individuals with ABI, University Hospital Wales; and to the general and treated outside an MTN, on discharge from hospital. district hospitals within the region - but only after If the individual and GP do not receive a copy of a an initial liaison psychiatry assessment has been RP, they do not know what rehabilitation is required, completed, and the patient is deemed to require and access to neurorehabilitation services cannot be additional neuropsychiatry input. effectively planned and implemented.

12 TIME FOR CHANGE IN WALES REPORT 2021 Table 2: Key criteria for a Rehabilitation Prescription12 • Patient held, electronic/updatable, and • Accessible/forwarded to General Practitioner accessible to all • Clearly document neurorehabilitation plan • Commence 24-48 hours after admission, • Clearly document future arrangements and reviewed weekly till discharge responsibilities (who/when/where) • Evolving document with input from • Provide key contacts (Major Trauma Centre/ multidisciplinary team support agencies) • Completion by transfer of care/discharge • Signpost information and expectations • Consider psychological/emotional needs • Can be used for audit and service improvement

CASE STUDY: JOSH Table 3 shows that although the NHS spent a Josh, from North Wales, was 18 considerable amount on Josh’s neurorehabilitation, the years of age when he was in the costs were offset within 27 months (inpatient) and six front seat of a car involved in months (community), due to the reduced amount of road traffic accident. He was care that he would have otherwise have needed, and taken to a Major Trauma Centre the state would have had to fund. Assuming Josh has with a severe brain injury and a life expectancy of 52 years, then the lifetime savings other serious trauma. As soon without community rehabilitation are £3 million and as Josh’s injuries were stabilised, further savings with community rehabilitation would be he commenced intensive rehabilitation which continued £2.2 million. on an inpatient basis for 12 months, and on discharge he was able to walk, albeit with the use of a Zimmer frame. He now lives with his parents and brother in the family home. He has no care input, but does have 2.5 hours of physiotherapy and occupational therapy each week in the community brain injury service. He has outpatient neuropsychology reviews at 3-6 month intervals and has been discharged from speech and language therapy with exercises and advice. Josh has made huge progress and regained some independence as a result of the neurorehabilitation he received and his reliance on carers is now much reduced. The time to offset the costs of Josh’s treatment has been calculated (see Table 3).

Table 3: Cost of Josh’s neurorehabilitation In-patient Community Length of stay 40 weeks 50 weeks Episode cost £127,224 £21,150 Admission date Discharge date Follow-up date 03/05/2016 06/02/2017 01/2018 Northwick Park Nursing 64 16 3 Dependency tool Care hours/week 66.5 35 14 Care cost/week £2,768 £1,612 £800 Reduction in care costs £1,156 £812 Time to offset costs 27 months 6 months

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 13 CASE STUDY: KYLE Kyle defied all the odds and slowly regained In 2009 Kyle Beere from South consciousness, but was unable to talk or move his Wales was a typical healthy, head and limbs. He needed urgent neurorehabilitation intelligent, active 12-year old. but there was no paediatric rehabilitation service in In November that year he had Wales and so Kyle had to travel 160 miles to Tadworth a massive brain haemorrhage in Surrey for treatment. He is now 23 years old and which left him fighting for his life. lives at home with his mum. Kyle has 2 to 1 care, 24 This was subsequently found to hours a day, and requires ongoing community-based be the result of a rare condition rehabilitation such as hydrotherapy and physiotherapy called arteriovenous malformation (AVM), where there which are difficult to access. These therapies are is a tangle of abnormal blood vessels connecting arteries extremely important as they enable Kyle to be as and veins in the brain. Kyle was taken to the Accident comfortable as possible. and Emergency unit at the University Hospital of Wales and over the following weeks he was in a coma and on life support following several operations to remove the AVM and associated blood clots.

14 TIME FOR CHANGE IN WALES REPORT 2021 REFERENCES 1. Turner L. Stokes L, Pick A, Nair A et al. Multi-disciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database of Systematic Reviews 2015(12). DOI: https://doi.org/10.1002/14651858.CD004170.pub3 2. Turner-Stokes L. Evidence for the effectiveness of multi-disciplinary rehabilitation following acquired brain injury: a synthesis of two systematic approaches. Journal of Rehabilitation Medicine 2008;40(9):691-701.DOI: https://doi.org/10.2340/16501977- 0265 3. Semlyen JK, Summers SJ, Barnes MP. Traumatic brain injury: efficacy of multidisciplinary rehabilitation. Archives of Physical Medicine and Rehabilitation 1998;79(6):678-783. DOI: https://doi.org/10.1016/S0003-9993(98)90044-2 4. Powell J, Heslin J, Greenwood R. Community based rehabilitation after severe traumatic brain injury: a randomised controlled trial. J Neurol Neurosurg Psychiatry 2002;72(2):193-202. DOI: http://dx.doi.org/10.1136/jnnp.72.2.193 5. Turner-Stokes L. The evidence for the cost-effectiveness of rehabilitation following acquired brain injury. Clinical Medicine 2004;4(1):10-12. DOI: 10.7861/clinmedicine.4-1-10 6. Aronow H. Rehabilitation effectiveness with severe brain injury: translating research into policy. Journal of Head Trauma Rehabilitation 1987;2:24-36. DOI: https://doi.org/10.1097/00001199-198709000-00005 7. Turner-Stokes L, Paul S, Williams H. Efficiency of specialist rehabilitation in reducing dependency and costs of continuing care for adults with complex acquired brain injuries. Journal of Neurology, Neurosurgery & Psychiatry 2006;77(5):634-639. DOI: http://dx.doi.org/10.1136/jnnp.2005.073411 8. Turner-Stokes L. Cost-efficiency of longer-stay rehabilitation programmes: can they provide value for money?. Brain injury 2007;21(10):1015-1021. DOI: https://doi.org/10.1080/02699050701591445 9. Turner-Stokes L, Pick A, Nair A et al. Rehabilitation for adults of working age who have a brain injury. 2015. Cochrane Review. http://www.cochrane.org/CD004170/INJ_rehabilitation-adults- working-age-who-have-brain-injury (accessed May 2018). 10. Turner-Stokes L. Evidence for the effectiveness of multi-disciplinary rehabilitation following acquired brain injury: a synthesis of two systematic approaches. J Rehabil Med 2008;40:691-701. 11. Turner-Stokes L, Williams H, Bill A et al. Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: a multicentre cohort analysis of a national clinical data set. BMJ Open 2016;6:e010238 doi:10.1136/bmjopen-2015-010238. 12. The National Clinical Audit of Specialist Rehabilitation following Major Injury (NCASRI). October 2016. https://www.kcl. ac.uk/ nursing/departments/cicelysaunders/about/rehabilitation/ NCASRI-Audit-Report.pdf (Accessed May 2020)

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 15 POLITICAL ASPIRATIONS Improvements in the quality of neurorehabilitation are Though these recommendations are for the UK in a long-standing aspiration, however its implementation general, they are still highly relevant for Wales. Whilst has been neglected across the UK over the last many of the recommendations relating to acute care two decades. In 2001 the parliamentary Health have been implemented to some extent, the last 19 years Select Committee published a report ‘Head injury: have not seen any substantial implementation of the rehabilitation’ containing over 20 recommendations. recommendations for neurorehabilitation (see Table 1).

Table 1: Abbreviated recommendations: 2001 Health Select Committee Report: ‘Head injury: rehabilitation’, classified according to progress made since publication

SUBSTANTIAL PROGRESS 1. Acute assessment and management by specialist staff appropriate to injury severity 2. Explicit allocation of responsibility for planning different levels of rehabilitation

PARTIAL PROGRESS 1. Improved data collection on epidemiology and consequences of TBI: acute incidence and severity data available but no reliable data on prevalence and disability 2. Involvement of families in recovery, rehabilitation and support services 3. Timely post-acute rehabilitation in appropriately resourced services - remains a target, but with incomplete and variable implementation 4. Acute sector to take responsibility for planning onward care journey – variable implementation 5. Clear plans for care pathways, including tertiary services - achieved in acute stage, but skilled assessment and delivery of specialist neurorehabilitation remains inconsistent 6. Each individual to have a clear care plan for rehabilitation post-discharge from hospital - Implementation incomplete, especially outside Major Trauma Centres 7. Improved provision of information on head injury to patients and families from hospitals and GP, with inclusion of information provided by Headway 8. Targeted mental health services for TBI - variable implementation 9. Trusts, Health Authorities and Local Authorities to have a case management system to help guide carers and patients through whole care pathway 10. Every NHS Trust should have a named manager for head injury rehabilitation who can liaise with patients, carers, and services; and is responsible for coordinating care 11. Recognition of contributions by independent sector, and collaboration with the statutory sector

LITTLE OR NO PROGRESS 1. Greater allocation of Department of Health (DoH) research budget to TBI rehabilitation 2. Learning lessons of vocational rehabilitation from other complex neurological disorders 3. Assessment for disability living should be by individuals who have specialist skills and understanding of head injury, with input of a patient advocate 4. DoH should take responsibility for providing community rehabilitation for both physical and cognitive disability, with service design in consultation with rehabilitation professionals 5. Social Service departments should have an additional classification of user group in planning services for complex neurological conditions including TBI, included in the Community Care Plan 6. DoH should help charitable organisations which provide core services 7. There should be allocation of rehabilitation responsibilities between health and social services, with identified managers, clear responsibilities and close collaboration 8. There should be a Government subsidised publication which provides an inventory of resources available for people with head injury, for circulation to health authorities 9. Health Improvement Plans and Community Care Plans should include a section on planning rehabilitation for complex neurological conditions (including head injury) 10. Clear plans to improve rehabilitation services for head injury, with implementation before 2005 11. Urgent formulation of policy for long term rehabilitation of head-injured people; Intermediate Care, National Institute for Health and Care Excellence guidelines, and National Service Framework on long term conditions do not provide a satisfactory solution

16 TIME FOR CHANGE IN WALES REPORT 2021 In 2010 the NHS Clinical Advisory Group for Major Care Excellence, have made recommendations for Trauma reported to the Department of Health (DoH) improving the consistency and quality of care for and recommended the establishment of services brain injury survivors. However, without fundamental in MTCs to provide coordinated pathways of care. changes in the provision of neurorehabilitation Subsequently 22 MTCs were established for adults services these documents are redundant. following major trauma across the UK. As a result of this reorganisation and advances in emergency and PROGRESS IN WALES acute medicine, survival for individuals with an ABI has The Welsh Government’s updated ‘Neurological increased by approximately 50% or 500 individuals per Conditions Delivery Plan 2017’ sets out a vision for year. While many of these individuals experience good improving neurological services across Wales1. It outcomes, the number of survivors with significant focuses on seven themes, abbreviated versions of disability or catastrophic brain injury has also which can be seen in Table 2, and key actions for increased, with long-term consequences. the vision of a high standard of care for people with neurological conditions in Wales. It does not National guidelines and standards documents, focus exclusively on ABI. In March 2018 the report including those from the DoH, the British Society ‘Neurological Conditions: Annual Statement of of Rehabilitation Medicine, the Royal College of Progress’ was published, highlighting key achievements Physicians, and the National Institute for Health and and areas which need further development2.

Table 2: Abbreviated key areas of development for the Neurological Conditions Delivery Plan 20171, key achievements and areas for focus set out in the 2018 Annual Statement of Progress

SEVEN AREAS FOR DEVELOPMENT AND KEY ACTIONS OF NEUROLOGICAL CONDITIONS DELIVERY PLAN 2017 • Awareness of neurological conditions • Timely diagnosis of neurological conditions • Fast, effective, safe care and rehabilitation • Living with neurological condition • Children and young people • Targeting research

KEY ACHIEVEMENTS SET OUT IN 2018 ANNUAL STATEMENT OF PROGRESS • Total NHS expenditure for neurological conditions increased by 2% from 2011-2012 to 2015-2016 • Reduction in time spent in hospital, emergency admissions, and total emergency bed days • Increased focus on patient reported outcome and experience measures • Supporting Health Boards to develop effective neurorehabilitation services • The Neurological Conditions Implementation Group and Stroke Implementation Group jointly invested £1.2m for development of neurorehabilitation services across Wales (See Table 3)

AREAS OF FOCUS FROM 2018 ANNUAL STATEMENT OF PROGRESS • In 2016-2017 6,000 individuals waited longer than 26 weeks for a first outpatient appointment. There is a need to improve quick and easy access to a first appointment • There is a need to improve the pathway of care, to ensure that individuals are seen and treated within 26 weeks following referral. In 2016-2017 an average of 86% of patients waited less than 26 weeks from referral to start of treatment, the expected goal is 95% • There is a need to ensure appropriate referrals, and new models of care, so that individuals can be treated closer to home in community settings • Support for individuals with a brain tumour, and raising awareness of signs and symptoms • Ensure timely access to specialist palliative care

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 17 The Plan states that progress will be reviewed at least throughout the care pathway, and may not meet the once a year, £1m of annual funding will be allocated, requirement for the rehabilitation of people with ABI. monitored, and reported, and a national statement of There is a need for a further review, to ensure that achievement will be produced annually. The Statement individuals’ needs are being met and that the Plan is being highlights important improvement, especially in relation implemented. to emergency admissions, acute care, and developing rehabilitation across the wide range of neurological The Neurological Conditions Implementation Group and disorders. However, no update to the Statement has Stroke Implementation Group allocated £1.2m to Health been issued. Steps have been taken to improve Boards (see Table 3) to improve neurorehabilitation neurorehabilitation services for ABI. However the services. Nine bids were approved for recurrent funding3. funding allocated is for all neurological conditions The funding is relatively low to develop such services.

Table 3: Approved Health Board bids for neurorehabilitation investment Health Board Amount (£) Project Aneurin Bevan UHB £206,000 Community neurorehabilitation service (Stroke) Abertawe Bro Morgannwg UHB £152,000 Early supported neurology discharge team – or – (Swansea Bay UHB) Stratified community neurorehabilitation team Betsi Cadwaladr UHB £100,000 Support towards level 2 rehabilitation unit Cardiff & Vale UHB £174,000 Community neurorehabilitation service Cwm Taf UHB £117,000 Multidisciplinary community neurorehabilitation team Hywel Dda UHB £145,000 Integrated community neurostroke rehabilitation Powys THB £96,000 Community rehabilitation Neuro Muscular Network £60,000 Physiotherapy service for people with neuromuscular conditions Welsh Health Specialised £150,000 Paediatric neurorehabilitation service Services Committee

The Plan has set an ambitious and inspiring vision for their long-term needs. The Cross Party Group on Wales, and has laid a strong foundation, but there is still Neurological Conditions Survey4 (2018) concluded that much that needs to be done for ABI. This is especially people living with neurological conditions, including ABI, true for children, and young people with ABI, where there are missing out on vital services, highlighting that there is still limited specialist support. There is also work to be is currently not enough multidisciplinary and multi- done to ensure that adequate neurorehabilitation is agency collaboration, across health and social care accessible for all individuals with ABI in Wales, and fit for services, to meet rehabilitation needs.

REFERENCES 1. Welsh Government. Neurological Conditions Delivery Plan. High standard of care for everyone with a neurological condition. Welsh Government, Cardiff. The Neurological Conditions Implementation Group; 2017. Retrieved from https://gov.wales/ sites/default/files/publications/2019-02/neurological-conditions-delivery-plan-july-2017.pdf (accessed April 2020) 2. Welsh Government. Neurological Conditions: Annual Statement of Progress. Government, Cardiff; 2018. Retrieved from https://gov.wales/sites/default/files/publications/2019-03/neurological-conditions-annual-statement-of-progress-march-2018.pdf (accessed April 2020) 3. Wales Neurological Alliance. Annual Report 2016 and Financial Statement Cross-Party Group for Neurological Conditions; 2016 http://www.senedd.assembly.wales/documents/s68927/Annual%20Report%20and%20Financial%20Statement%20Final%20 2016.pdf (accessed April 2020) 4. National Assembly for Wales Cross Party Group on Neurological Conditions. People living with neurological conditions and the Social Services and Well-being (Wales) Act (2014); 2018. Retrieved from http://senedd.assembly.wales/documents/s83582/ People%20living%20with%20neurological%20conditions%20and%20the%20Social%20Services%20and%20Well-being%20 Wales%20Act%20Novemb.pdf (accessed April 2020)

18 TIME FOR CHANGE IN WALES REPORT 2021 EDUCATION

KEY ISSUES • There is limited knowledge about the incidence of children and young people with Acquired Brain Injury in the education system in Wales • There is lack of awareness and understanding amongst education professionals about Acquired Brain Injury, its consequences and its impact on learning • Education professionals have difficulty identifying what specific education support is required in terms of assessment tools, learning strategies and interventions • There is a lack of liaison, including information sharing regarding assessment and support, between health and education professionals, as well as a lack of involvement and communication with the family

RECOMMENDATIONS • There is a need to review the incidence of children and young people with Acquired Brain Injury in the education system in Wales • All education professionals should have a minimum level of awareness and understanding about Acquired Brain Injury and the educational requirements of children and young people with this condition (i.e. completion of a short online course for all school-based staff), with additional training for the named lead professional supporting the individual with an Acquired Brain Injury and Additional Learning Needs Coordinators • Many children and young people with Acquired Brain Injury require individually-tailored, collaborative and integrated support for the return to school, and throughout their education. • An agreed ‘return-to-school’ pathway plan is required, led and monitored by a named lead professional, to provide a consistent approach and support for the individual, their family, and teachers • There is a need to ensure that Statements of Special Educational Needs (and Individual Development Plans in future) have consistent input from neuropsychological services to ensure that provision is fit for the individual’s needs. The advice in the Statement should be specific, with no room for interpretation, to ensure that each individual is getting the appropriate support consistently

OVERVIEW

Despite pockets of good practice and awareness about ABI in the education system, too many children and young people with ABI, and their families, encounter difficulties. These failings prevent the delivery of the tailored education that children and young people with ABI need in order to maximise their potential. Potential solutions to these problems are complex, and education professionals are already stretched in many directions. However, the incidence and long-term consequences for children and young people with ABI in the education system in Wales warrant proactive measures.

The functional impact of the ABI, including the ‘hidden’ difficulties, are affected by the age and developmental stage at the time of the injury. ABI frequently disrupts the process of learning, and the consequences may not be obvious until years later. Dedicated neurorehabilitation services are rare, so most neurorehabilitation for children and young people occurs in schools,via services that are not specialised for ABI.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 19 BURDEN OF ABI IN THE EDUCATION admission, are less easily available, but approximate SYSTEM IS NOT WIDELY RECOGNISED figures are provided1. The true prevalence of ABI in Figure 1 shows the overall UK statistics for the annual children and young people is unknown, but likely to be incidence of TBI in children that results in hospital much higher. Table 1 shows Wales-specific statistics admission. The incidence figures for ABI from causes regarding children and young people admitted to other than TBI, or ABIs that do not result in hospital hospital across Health Boards.

Figure 1: UK annual incidence of ABI in children1

NON-TBI HOSPITAL ADMISSIONS 35,000 • Encephalopathy ~4000 Patients with ABI not admitted Total number of children • Brain tumour ~525 to hospital: Number unknown admitted to hospital for TBI • Stroke ~300

2,000 3,000 30,000 will have sustained severe TBI will have sustained moderate TBI will have sustained mild TBI

Table 1: The number of children and young people admitted to hospital with ABI across Health Boards for 2006-2011 and 2011-2016 Health Board Cases 2006-2011 Cases 2011-2016 % Increase Swansea Bay 192 2671 1291 Aneurin Bevan 345 225 -35 Betsi Cadwaladr 98 314 220 Cardiff & Vale 208 2564 1133 Cwm Taf 31 94 203 Hywel Dda 41 383 834 Powys (No Paediatric) 0 0 0 TOTAL 915 6251 583

ABI HAS LONG-TERM CONSEQUENCES However, the long-term effects may arise many months FOR LEARNING or even years later, when the injured part of the brain Children and young people may appear to make a good reaches a key stage of development (see Table 2). physical recovery after the acute phase of the ABI.

Table 2: Effects of Acquired Brain Injury that may Impact on Learning12 • Limb weakness and poor mobility • Difficulties processing information • Fatigue • Mental health problems e.g. anxiety and depression • Reduced concentration and attention • Difficulties understanding and using language • Changes in behaviour e.g. irritability, behaving • Difficulties with organisation and planning impulsively or inappropriately • Social difficulties, including a lack of empathy and • Impaired memory awareness about their own or other people’s • Visual and visuo-perceptual impairments emotional situation • Hearing difficulties

20 TIME FOR CHANGE IN WALES REPORT 2021 ‘Neurocognitive stall’ - a halting or slowing in later stages of cognition, social, or communication development – may occur beyond a year after brain injury2. The individual may plateau after initial improvement, and consequently not meet later developmental milestones, and struggle in class. Behaviour issues may bring the individual with ABI to a teacher’s attention (see Table 3). In school, these may be labelled as not learning, oppositional behaviour, poor self-control, disorganisation, or low motivation. Children and young people with ABI are more likely to be excluded from school, and those who are excluded are more likely to commit offences. If education professionals understand, recognise, and can support young people with an ABI, they can reduce the likelihood that the individual will enter the youth and criminal justice system.

Table 3: Common behavioural problems after ABI3,4 • Overactivity • Immature behaviour • Apathy • Social awkwardness • Demanding behaviour • Egocentrism, insensitivity, impaired social perception • Disinhibition and impulsivity • Unawareness of impact on others, gullibility • Sexual acting out • Reduced judgment and motivation • Irritability, lowered frustration tolerance, • Sleep disturbance and eating problems (over/under eating) reduced anger control • Depression, anxiety, increased emotionality, • Verbal and physical aggression social withdrawal • Rigidity or perseveration

ADDITIONAL LEARNING NEEDS However, EP numbers are limited, schools have variable TEAMS MAY IMPROVE CARE access to them, and they do not specialise in ABI. Children and young people who have disabilities, or significantly greater difficulty in learning, are described For children and young people who require more as having an Additional Learning Need (ALN) under support, a Statement of SEN is available (or Individual the Additional Learning Needs and Education Tribunal Development Plan under the new ALN system). The (Wales) Act 20185. Children and young people Statement of SEN is a legally binding document which is with ABI may have an ALN because they struggle to enforced and implemented by the LA. This sets out all process information, have difficulty remembering the educational and non-educational needs (e.g. health things, find it hard to concentrate, and/or have and social needs) of the child or young adult, and the sensory or physical difficulties. support which will be given to meet those needs, such as staff provision, equipment, changes in curriculum, Wales is currently in a transition period, transforming speech therapy and physiotherapy. Neuropsychological the previous Special Educational Needs (SEN) to services have a key role in providing neuropsychological the implementation of the ALN system, for learners assessments to better identify the individual’s needs in from 0 to 25 years with an ALN. This specifies that support of the Statement of SEN, however this is not all learners with an ALN are supported to reach always accessible to schools. their full potential. ALN Coordinators (ALNCos) are responsible for the organisation and operation of the The family can request a LA assessment if they think ALN/SEN policy within schools, including liaising with their child needs a Statement of SEN. Each local external agencies such as the Local Authority (LA), authority has its own criteria for assessment, and the and psychology services. Educational Psychologists child or young person would need to meet the criteria (EP) in Wales work with children and young people to to proceed with an assessment for a Statement of support development, wellbeing, resilience, learning, SEN. If guidelines for provision given in the Statements and achievement. They support those with difficulties are not specific there may be little consistency in the in learning, behaviour, mental health, or development. support that is provided.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 21 SUPPORT IS REQUIRED THROUGHOUT THE COURSE OF EDUCATION Education professionals do not routinely receive training on ABI, and may lack understanding of its consequences and the support required 6,7. Education professionals require information and awareness training about ABI, support from suitably trained and qualified ALNCos, and consistent input from external professionals to make effective use of appropriate assessment tools, learning strategies, and evidence- based interventions.

While some excellent support is available to aid the transition from hospital back to school, this can be limited, inconsistent, and sometimes has no formal pathway. LA involvement at hospital discharge can be sporadic. LA advisors are not always in the loop and potential funding needs may not have been identified, addressed or agreed. In addition, the individual’s CASE STUDY: SIONED condition at the point in time that they return to Sioned (pseudonym) had sepsis when she was four school may be very different from the assessment at years of age. She was extremely unwell and in hospital hospital discharge. for several months before returning home. Initially she seemed to be recovering well but then Sioned’s Many of these individuals require bespoke management, behaviour began to change. She was not developing regular monitoring, and review for the duration of academically as she should be, and her behaviour their education, and possibly with transition between became increasingly difficult to manage. The family primary, secondary, and further education. A ‘return to tried unsuccessfully to get help and support for school’ pathway plan e.g. the Sam White Pathway, from several years but Sioned’s behaviour was thought hospital back into education, and, crucially throughout to be due to attachment issues. Eventually it was their education is a ‘must-have’8. A key professional recognised that she had acquired a brain injury during is also required to provide consistent, face-to-face her period of ill-health. The family subsequently support and monitor the individual on their journey received support from the Childhood Brain Injury along the entire pathway. This would ensure that all the Trust and they arranged a meeting with the school, required support is in place, co-ordinated, collaborative where she was only attending for two hours each and pre-emptive. day, to see what needed to happen to get her into a full-time place. The family now have a better understanding of Sioned’s needs and how to manage them. Sioned has now been moved to the local specialist provision so she can attend full time with adequate support.

REFERENCES 1. NHS Standard Contract for paediatric neurosciences neurorehabilitation 2013/2014. https://www.england.nhs.uk/wp-content/ uploads/2013/06/e09-paedi-neurorehabilitation.pdf (accessed April 2020) 2. Chapman SB. Neurocognitive stall: A paradox in long-term recovery from pediatric brain injury. Brain Injury Professional 2006;3(4):10–13 3. Demellweek C, Rankin P, Baldwin T. Emotional, behavioural, psychiatric and social problems. In R.Appleton & T. Baldwin (Eds.), Management of brain injured children (second ed., pp. 170-222). Oxford University Press 2006 4. Ylvisaker M, Turkstra L, Coehlo C et al. Behavioural Interventions for Children and Adults with Behaviour Disorders after TBI: A Systematic Review of the Evidence. Brain Injury 2007;21:769-805 5. Welsh Government. Additional Learning Needs and Education Tribunal (Wales) Act. Welsh Government, Cardiff. 2018. Retrieved from https://gov.wales/sites/default/files/publications/2018-04/additional-learning-needs-and-education-tribunal-wales- act-2018-explanatory-memorandum.pdf (accessed April 2020) 6. Linden MA, Braiden H-J and Miller S. Educational professionals’ understanding of childhood traumatic brain injury. Brain Injury 2013;27(1):92-102 7. Kahn LG, Linden MA, McKinlay A et al. An international perspective on educators’ perceptions of children with Traumatic Brain Injury. Neurorehabilitation 2018;42:299-309 8. Hammill N, Bennett E and White P. Making a successful return to education supporting children and young people with Acquired Brain Injuries (ABI). 2016. Nottinghamshire County Council Educational Psychology Service. http://www.thesamwhitelegacy.org.uk/returning-to-education-support-and-advice/ (accessed April 2020)

22 TIME FOR CHANGE IN WALES REPORT 2021 CRIMINAL JUSTICE

KEY ISSUES • Individuals with Acquired Brain Injury are significantly over-represented in the criminal justice system, with major personal, social, and economic consequences. Addressing this over-representation can result in significant cost- savings and reduce reoffending rates • Individuals with Acquired Brain Injury are typically failed by the criminal justice system because of barriers to access justice, the lack of recognition of the impact of impairment on offending, and limited specialist service provision • Despite the strong recognition of the disproportionate prevalence in the youth justice system, young people who commit offences are not screened routinely for an Acquired Brain Injury before they enter a secure estate, by which time a cycle of re-offending may be triggered

RECOMMENDATIONS • Criminal justice procedures, practices and processes need to be reformed to take into account the needs of individuals with Acquired Brain Injury • Training and information about Acquired Brain Injury is required across all services including the police, probation, prison services, and the Courts • Brain injury screening for children, young people, and adults is required routinely, and at the earliest point of contact with the Criminal Justice System • If an Acquired Brain Injury is identified, neurorehabilitation is required with the appropriate interventions planned and implemented depending on injury severity. This could include Acquired Brain Injury Awareness training for current Criminal Justice System staff to adapt their practices. In the cases of more severe brain injury, they may require specialist intervention with trained professionals

OVERVIEW

HIGH INCIDENCE OF ABI AMONGST OFFENDERS ABI is over represented in prison populations1,2, with a prevalence amongst adult prisoners between 50% and 80%1. The largest UK-based study (613 male prisoners) showed that almost half (47%) reported a history of Traumatic Brain Injury (TBI) when screened on admission to Her Majesty’s Prison (HMP) Leeds3. The majority (70%) of offenders reported receiving their first injury prior to their first offence, consistent with studies suggesting that TBI may be a risk factor for offending4. Research at HMP/ Young Offender Institute (YOI) Drake Hall found similar high prevalence among women prisoners, with 64% of 173 women reporting a history indicative of ABI5.

The criminal justice system (CJS) does not routinely screen for ABI in the population, therefore there are no robust statistics specifically for Wales. However, a 2018 Brain Injury Linkworker ‘proof of concept’, by The Disabilities Trust, in HMP Cardiff and a National Probation Service (NPS) Approved Premise found a similar high prevalence (see Table 1)6.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 23 Table 1: Prevalence of TBI in the Linkworker ‘proof of concept’ at HMP Cardiff, and an Approved Premise in Wales (Male prisoners)6 • 63% of residents in the Welsh Approved Premise screened positive for a TBI (of which, 73% were moderate to severe) • Of 105 prisoners referred to the study in HMP Cardiff, 86% screened positive for TBI • Most frequent cause of TBI was an unprovoked attack (31%) and Road Traffic Accidents (25%) • 60% had an offence for a violent crime • 33% had been in custody 2-5 times before • 82% had a prior mental health diagnosis Despite the substantial number of shared factors, an ABI is not appropriately addressed in the CJS. The needs of an individual are often masked, or an ABI Evidence links ABI to offending in young people, with is unidentified, which means that the root cause of prevalence rates for TBI as high as 60% among young behaviour is not being tackled. There have been calls offenders1. People who have had Adverse Childhood to improve the mental health of offenders in Wales11, Experiences (ACEs) are at particular risk of ABI7 and and there is growing awareness of the impact of ACEs offending behaviour. Children and young people with throughout people’s lives. To address these issues ABI are more likely to develop behavioural problems, within the CJS, appropriate attention needs to be paid which are linked to an increased propensity to to ABI, to ensure effective rehabilitation. criminal offending. LIVING IN PRISON WITH COMPLEXITY OF NEED A BRAIN INJURY An ABI can double the risk of more serious forms of The behaviour of an individual with ABI in prison crimes8, likely due to an increased risk of impulsive can often be misinterpreted, resulting in ineffective aggression9. In the case of young people, the impact neurorehabilitation and management. It can also result of an ABI on brain development may have led to in an increased risk of rule breaking and violence, and impairment in managing behaviour and emotions. therefore additional penalties and adjudications (see Post-injury difficulties with memory, attention, and Table 2). Disruptive and/or aggressive behaviour, poor anger, are all factors relevant to a forensic population. memory and other cognitive problems that impact on Additionally, experiences of neurodisability might learning all require specialist management in prison. impact on the desistance process, meaning they are more likely to re-offend10. The needs of offenders with ABI are complex, with elevated rates of mental health problems, suicidality, and drug and alcohol abuse among prisoners with a history of TBII1. In women prisoners with TBI, 75% (of the sample of 100 women) had a prior mental health diagnosis, 67% reported historical sexual abuse, and 62% suffered from severe depression5. ACEs and pre-existing conditions, such as Attention Deficit Hyperactivity disorder (ADHD), may have predisposed young offenders to their ABI, which then increases the risk of developing other disorders, such as mental health problems1.

Table 2: Misinterpretation of ABI related behavioural deficits in a prison setting Behaviour Misinterpretation in prison Underlying cause due to ABI Frequently misses appointments Avoidant and irresponsible Impaired memory functioning Talks about the same things repeatedly Trying to wind you up Slow information processing Makes inappropriate personal comments Rude and disrespectful Poor impulse control Say they will do something but Trying to manipulate the situation Diminished executive skills never get round to it

24 TIME FOR CHANGE IN WALES REPORT 2021 Table 3: Prison environment and neurorehabilitation • Provides a structured environment • Individual with an ABI knows what to • Rules and boundaries are clear do, when and where • Increased insight and awareness can motivate change • If they have an executive impairment • Increased understanding can reduce conflict and they often respond well lead to co-operation • Effective rehabilitation can result in • Lack of formal learning effective learning

When an ABI has not been recognised earlier in the ROUTINE SCREENING AND CJS, prison may provide an opportunity to identify ASSESSMENT ARE ESSENTIAL the underlying needs of the individual (see Table 3), Standardised screening and identification of ABI is and to then provide the required neurorehabilitation essential at the earliest point of contact with the CJS. if available. Screening could be carried out by a range of criminal justice professionals, such as police and probation ABI AND THE CJS officers, in order to identify the appropriate pathways The lack of understanding within the CJS about to prevent reoffending and associated socio-economic the ‘hidden’ disabilities of ABI results in barriers costs. Routine screening would allow Wales to be at to accessing justice. When encountering the CJS, the forefront of developing neurorehabilitation care individuals with ABI may have difficulty understanding pathways for forensic rehabilitation. Such an approach the terminology used, communication may be is likely to be more effective at reducing recidivism and/ challenging, and their behaviour misinterpreted. A lack or diversion from the CJS. Screening would also allow of recognition of ABI can result in the inappropriate for better understanding of the prevalence of ABI in use of standard CJS interventions that do not address the CJS in Wales, and thus better inform CJS policy and the causes of injury-related behaviour. The individual strategy around risk and sentence management. may have difficulty engaging with, and completing, court There are assessment tools that can be used in prison, orders, resulting in an increased risk of breach and probation, community and rehabilitation settings to further sentencing. The limited awareness and specialist establish whether an individual has an ABI, e.g. the service provision results in a failure to identify and Comprehensive Health Assessment Tool (CHAT) and appropriately support individuals with ABI, increasing the Brain Injury Screening Index (BISI©). CHAT was the risk of custody and reoffending. developed by the Offender Health Research Network for children and young people, and facilitates screening, identification of needs and improved care. The BISI was developed by the Disabilities Trust Foundation and is an 11-question screening tool which provides an indication of ABI severity, and whether full assessment by health professionals is warranted.

MANAGEMENT AND SUPPORT SERVICES ARE REQUIRED Given the large over-representation of people with an ABI in the CJS, there is a dire need to provide appropriate rehabilitation to manage the complex needs of this population holistically. Effective neurorehabilitation may then reduce the impact on other public service resources, and reduce the cost of recidivism.

Following a recent pilot of BISI, a Brain Injury Linkworker (BIL) Service was established for prisoners in HMP Leeds and young offenders in Wetherby and Hindley, to work with individuals with ABI and address their problems (see Figure 1). Early evaluation suggests positive results with this approach12. HMPPS funded a 12-month BIL service into HMP Swansea and HMP Cardiff, but do not have the funds to establish a whole system approach across Wales, to ensure parity and equitable services between all Welsh prisons.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 25 Figure 2: The Linkworker care pathway CASE STUDY: LUCINDA In May 2004 Lucinda attempted to take her own life after suffering with severe depression. She jumped off a bridge, and due to the severe impact, she suffered a brain injury. Consequently Lucinda had left-sided weakness, memory problems, changes in her speech, and difficulties with comprehension. Soon after the injury she was made homeless for a period of time, before moving to a flat in an area of high socio-economic deprivation. She was unable to look after herself and set fire to her flat resulting in an Imprisonment for Public Protection Indeterminate sentence. At the time she did not really understand the consequences of her actions and serving time was difficult for her. The The core BIL Team comprises a Linkworker, Clinical police and prison officers were not fully aware of her Psychologist, Behavioural Scientist, and Project complex needs and she stayed in a safe cell for a month. Manager. Behavioural management plans are developed Things improved when she was later transferred to a with individuals and support provided for emotional private unit in England which specialised in neurological regulation. BILs also deliver staff training to raise disorders and their psychological comorbidities. awareness of ABI, and to support service delivery. Interventions can be adapted to prepare individuals Since returning home Lucinda has experienced barriers for release, and a plan produced for maintaining in terms of poor understanding of her ABI and a lack of improvements. This service aims to contribute towards support. She attends her local Headway and she finds decreasing reoffending, and work is underway to assess the group helpful. reoffending rates of BIL service users.

The CJS is the only public sector body not devolved to the Welsh Government, which means as an organisation they need to work differently with other key partners that are devolved across the Wales landscape (i.e. Health and Education). This presents its own complexities, and highlights the need for collaboration, a clear pathway for referral with key sectors, and a framework of treatment (such as the BIL care pathway).

REFERENCES 1. Williams H. Repairing shattered lives. Brain Injury and Its Implications for Criminal Justice. 2012: Retrieved from https://www. barrowcadbury.org.uk/wp-content/uploads/2012/11/Repairing-Shattered-Lives_Report.pdf (accessed April 2020) 2. Parsonage M. Traumatic Brain Injury and Offending. An Economic Analysis. Centre for Mental Health. 2016. Retrieved from https://www.centreformentalhealth.org.uk/sites/default/files/2018-09/Traumatic_brain_injury_and_offending.pdf (accessed April 2020) 3. Pitman I, Haddesley C, Ramos SD et al. The association between neuropsychological performance and self-reported traumatic brain injury in a sample of adult male prisoners in the UK. Neuropsych Rehab 2015;25(5):763-779. DOI: https://doi.org/10.10 80/09602011.2014.973887 4. Farrer TJ, Hedges DW. Prevalence of traumatic brain injury in incarcerated groups compared to the general population: a meta-analysis. Progress in Neuro-Psychopharmacology and Biological Psychiatry 2011;35(2):390-394. DOI: https://doi. org/10.1016/j.pnpbp.2011.01.007 5. The Disabilities Trust. Making the Link. Female Offending and Brain Injury. 2016-2018. Retrieved from https://www. thedtgroup.org/media/163444/making-the-link-female-offending-and-brain-injury.pdf (accessed April 2020) 6. McNulty R. Service Evaluation of the Brain Injury Linkworker (BIL) Service: Ministry of Justice (MOJ) Pilot Project. 2018 [Unpublished] 7. Ma Z, Bayley MT, Perrier L et al. The association between adverse childhood experiences and adult traumatic brain injury/ concussion: a scoping review. Disability and Rehabilitation 2019;41(11):1360-1366. DOI: https://doi.org/10.1080/09638288.201 8.1424957 8. Fazel S, Lichtenstein P, Grann M et al. Risk of violent crime in individuals with epilepsy and traumatic brain injury: a 35-year Swedish population study. PLoS Medicine 2011;8(12). DOI: 10.1371/journal.pmed.1001150 9. Brower MC, Price BH. Neuropsychiatry of frontal lobe dysfunction in violent and criminal behaviour: a critical review. Journal of Neurology, Neurosurgery & Psychiatry 2001;71(6):720-726. DOI: http://dx.doi.org/10.1136/jnnp.71.6.720 10. Hughes N, Williams, H, Chitsabesan, T et al. Nobody Made the Connection: The prevalence of neurodisability in young people who offend. Children’s Commissioner. 2012.

26 TIME FOR CHANGE IN WALES REPORT 2021 SPORT–RELATED TRAUMATIC BRAIN INJURY

KEY ISSUES • The underlying mechanisms, assessment, diagnosis, recovery, and long-term risks associated with sport-related traumatic brain injury is not well-understood • There is generally poor awareness of the management of sport-related concussion in schools, colleges and universities. Most health professionals are not trained in the management of sport-related traumatic brain injury • There is poor coordination between and within sports associations with respect to policy setting and management of the injured athlete • Current National Health Service provision is insufficient to address the clinical needs of individuals with sport- related brain injury

RECOMMENDATIONS • Funding for collaborative research is required to evaluate and improve assessment tools, develop objective diagnostic markers, and better understand the recovery process including post-concussion syndrome and potential long-term risks of sport-related brain injury • An education campaign is required in schools and communities to improve awareness and understanding of sport- related brain injury. This should be effected with the support of government departments potentially including the Department for Education and Skills, Department of Health and Social Services, and Public Health Wales • Government should take the lead with clear sport-independent concussion guidance and policies. Sport associations should work collaboratively with government and professional clinical bodies to implement these policies and to improve health professionals’ knowledge of concussion management • The National Health Service should develop better pipelines for the diagnosis and care of sport-related brain injury, including post-injury follow-up for earlier detection of post-concussion syndrome

OVERVIEW

DEFINITION OF CONCUSSION Concussion is a biomechanically induced, usually transient, disturbance of brain function that involves complex pathophysiological processes.

Sport-related concussion (SRC) is a complex, emotive subject with a rapidly evolving knowledge base. Concussion is the most common form of sport-related brain injury, yet the underlying mechanisms and pathology remain elusive. Concussion is used to describe a distinct pathophysiological occurrence with its own diagnostic implications; and to describe the symptoms that arise after a mild traumatic brain injury (mTBI). There is general agreement that SRC is a spontaneously resolving condition of impaired neurological function resolving spontaneously with time – usually within 7–10 days1. However, in some cases symptoms may persist for many months, a phenomenon known as post-concussion syndrome (see Tables 1 and 2).

SRC can occur in both contact and non-contact sports and is among the most frequently reported sport and recreation related injury. Improved understanding of the risks associated with SRC is essential to balance the risk against the clear health and social benefits of sport participation.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 27 Table 1: Common features of sport-related concussion2 • Direct blow to the head, face, neck or elsewhere • Acute clinical signs and symptoms are not on the body with an impulsive force transmitted associated with structural brain abnormality to the head on structural neuroimaging scans • Rapid onset of usually short-lived impairment of • Range of clinical signs and symptoms that may neurological function that resolves spontaneously or may not involve loss of consciousness • Signs and symptoms may evolve over • Clinical and cognitive features may follow a minutes/hours sequential course • Neuropathological changes occur reflecting • Symptoms can be prolonged in some cases functional disturbances

Table 2: Common symptoms associated with concussion Somatic Cognitive Emotional Sleep disturbances Headache or pressure Confusion/disorientation More emotional Drowsiness Sensitivity to sound Poor information processing Irritability Difficulty falling asleep Dizziness Executive function difficulties Nervous or anxious Nausea Memory difficulties Emotional lability Weakness Neck pain Blurred vison Balance impairment Feeling as though ‘in a fog’ Fatigue or low energy

28 TIME FOR CHANGE IN WALES REPORT 2021 INCIDENCE BURDEN 25 350

300 20 250

15 200

10 150 100 5 50

0 0 2012-13 2013-14 2014-15 2015-16 2012-13 2013-14 2014-15 2015-16

Concussion Anterior thigh haematoma Concussion Anterior thigh haematoma

Figure 1: Match injury incidence (injuries per 1000 match hours) and burden (days lost per 1000 match hours) of SRC compared to thigh haematoma, across four seasons.

INCIDENCE FIGURES SRC is also prevalent in children, who are more likely ARE PROBLEMATIC to suffer a concussion, and take longer to recover from SRC incidence statistics are problematic because the effects, compared to adults. Sport related injuries concussion is not reported reliably in hospital, and make up 13.7% of hospital admissions in children for neither its terminology nor reporting methods head injuries4. As a result, with the recommendations are standardised. The incidence of SRC, typically for increased physical activity and physical literacy of reported per 1000 hours of exposure, is high among children and young people in Wales, there is clear need equestrian sports, rugby, boxing, ice hockey, football, for awareness, training, monitoring, and appropriate and American football. protocols for SRC in schools and clubs.

An analysis of data from the Welsh Rugby Union Most people who experience SRC recover quickly; Injury Surveillance Programme for the first team however, many people (estimated between 5% and squad across four seasons (2012 – 2016) showed 43%)1 experience post-concussion symptoms (PCS) head injuries among the highest incidence, increasing that can persist months and sometimes years after the from 12.4 head injuries per 1000 match hours in injury. Because PCS is typically not diagnosed until 2012-2013 to 22.6 head injuries per match hours three months after injury, most people with PCS do in 2015-20163. The vast majority (80-95%) of head not receive specialist care, and those who are referred injuries reported each year were concussions. In are not seen for several months after injury, thus miss addition, the injury burden of SRC (days of play lost a window of opportunity when treatment would be per 1000 match hours) was 50-60% higher than any most beneficial. For school-age children this delay has other specific injury. For comparison, the incidence significant impact on learning progression, and for adults and burden of SRC and thigh haematoma (the the delay has socioeconomic impact with respect to second highest incidence of specific injury) is shown delayed return to work5. in Figure 1. These data are similar to other reports where mTBI incidence has been compared with musculoskeletal injury.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 29 30 TIME FOR CHANGE IN WALES REPORT 2021 LONG TERM RISK FROM healthcare providers involved in athlete care at the REPETITIVE TRAUMA recreational, elite, or professional level8. They produced Repetitive exposure to sub-concussive trauma is the Sideline Assessment Concussion Tool (SCAT5) as a associated with the long-term risk of neurodegeneration standardised tool for the clinical assessment of SRC9. including early-onset dementia6. A 2017 study of 202 As the science of SRC evolves, individual management deceased former American football players showed a high and return to play decisions remain in the realm of proportion with neuropathological features of Chronic clinical judgement, and the consensus document will be Traumatic Encephalopathy (CTE)7. Subsequently, it has modified as the knowledge base develops. If a more been demonstrated that the risk of neurodegenerative serious head injury is diagnosed then the National disease is much higher in former professional football Institute for Health and Care Excellence guidelines players compared to the general population8. The are relevant. In addition, evolving and delayed-onset prevalence, risk, and mechanisms by which long-term symptoms mean that follow-up evaluation should be neurodegenerative conditions are related to SRC are considered after a suspected SRC, regardless of a still unclear, and further research is required. negative side-line screening test, and that parents and teachers are aware of the symptoms. KNOWLEDGE IS POOR There are considerable risks in returning to the field of Much progress has been made in raising awareness play too early with SRC, particularly with children. If an of SRC, particularly in rugby, and within professional individual sustains another blow to the head before the sport. However, there are concerns that key messages brain recovers, the damage can be exacerbated to the and knowledge regarding concussion risk and clinical point that it can be fatal. This is known as the Second guidelines have not reached community coaches and Impact Syndrome. sports trainers. In university-level sport, coaches’ knowledge has been identified as insufficient in For this reason, early recognition and management of identifying concussion and knowing when return to SRC is crucial. If SRC is suspected, the person should play is safe10. There also remains a lack of awareness be removed from the action, monitored, and if necessary, and understanding amongst many health and education referred to an Accident and Emergency department. professionals of the potential seriousness of SRC and its The ‘if in doubt, sit them out’ policy should be ubiquitous management. Awareness is poor about the importance across all sport. After 24-48 hours of rest, graduated of RTL before RTP, and the need to make adjustments return to play (RTP) and return to learn (RTL) protocols for the student with SRC in the classroom. should be implemented. This involves a gradual resumption of cognitive and physical activity. If symptoms GUIDANCE IS AVAILABLE AND lasts more than three weeks, the individual should be IMPLEMENTATION IS ESSENTIAL referred to specialist services for clinical assessment. RTP and RTL guidelines provide clear step-by-step information to guide the individual’s gradual return to SRC assessment can be difficult because of the sporting sport and the classroom. However, these guidelines environment, diverse nature of symptoms and reliance have been poorly advertised, implemented, and on self-reporting. As a result the appropriate training in monitored. Specific formalised RTP protocols do exist SRC awareness and use of assessment tools is necessary. for some sports, but many sports do not have clear A 2017 expert-consensus panel provided an approach guidelines, a requirement for concussion education to guide clinical practice, developed for physicians and or a mechanism for follow-up.

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 31 A personalised approach is essential, based on the CASE STUDY: LEE player, as well as access to knowledgeable medical In 2017 Lee suffered a head professionals and the rules and practicalities of the injury whilst playing rugby with sport. The key is to ‘recognise, remove, recover, his local team. He did not lose and return’, following graduated RTP guidelines. consciousness but his vision Guidelines should explicitly recommend that went completely white, he had individuals suspected of having SRC should not return a thundering headache, he was to play until symptoms resolve and medical clearance sick and could not tell anybody has been obtained. the date, day, or where he was. He was not examined by a medical professional The Scottish Sports Concussion Guidance is a good and was not advised to go to Accident and Emergency exemplar of a cross-sport national approach to (A&E) by the coaches. Instead, a friend took him to standardising SRC advice and management11. This the local A&E department, where he received medical guidance provides information on SRC identification attention and an information leaflet about concussion. and management for the general public and the He felt mentally slower and physically weak for seven ‘grassroots’ game, where specialists are not present. days. He struggled with his university assignments and In acknowledgement of the seriousness of SRC, the was very distracted. At work, he was slower, made Welsh Government guidance for under-19s in school frequent mistakes, and was easily angered. Lee felt that and community sport also supports the identification, his work manager did not seem to understand or care management, and gradual return to sport12. This tool how the concussion was affecting him. Lee describes a is appropriate for community and school games, and common attitude of ‘put your body on the line for your could be used by coaches and teachers. teammates’ in rugby, and does not think it is helpful for the safety of players. He has seen players lose There is a legal requirement for professional consciousness during games, return to the pitch, and sport to manage the risk of all injuries including sometimes get knocked out again. SRC. However, if the sport is voluntary, this legal requirement does not apply. Clearly, more needs to be done to ensure appropriate awareness, identification and management of the injured athlete in the community game and in schools.

REFERENCES 1. Voormolen DC, Haagsma JA, Polinder S et al. Post-Concussion Symptoms in Complicated vs. Uncomplicated Mild Traumatic Brain Injury Patients at Three and Six Months Post-Injury: Results from the CENTER-TBI Study. J Clin Med 2019;8(11):1921. 2019 Nov 8. DOI:10.3390/jcm8111921 2. McCory P, Meeuwisse W, Dvorak J et al. Consensus statement on concussion in sport—the 5th international conference on concussion in sport held in Berlin, October 2016 BJSM Online First, published on April 26, 2017 as 10.1136/ bjsports-2017-097699. 3. Bitchell CL, Mathema P, Moore IS. Four-year match injury surveillance in male Welsh professional Rugby Union teams. Physical Therapy in Sport 2020;42:26-32. DOI: https://doi.org/10.1016/j.ptsp.2019.12.001 4. Trefan L, Houston R, Pearson G et al. Epidemiology of children with head injury: a national overview. Archives of Disease in Childhood 2016;101(6):527-532. DOI: http://dx.doi.org/10.1136/archdischild-2015-308424 5. Daneshvar DH, Riley DO, Nowinski CJ et al. Long-term consequences: effects on normal development profile after concussion. Phys Med Rehabil Clin N Am 2011;22(4):683-ix.DOI: doi:10.1016/j.pmr.2011.08.009 6. Manley G, Gardner AJ, Schneider KJ et al. A systematic review of potential long-term effects of sport-related concussion. Br J Sports Med 2017;51(12):969-977. DOI: ttp://dx.doi.org/10.1136/bjsports-2017-097791 7. Mez J, Daneshvar DH, Kiernan PT et al. Clinicopathological evaluation of chronic traumatic encephalopathy in players of American football. Jama 2017;318(4):360-370. DOI:10.1001/jama.2017.8334 8. Pupillo E, Bianchi E, Vanacore N et al. Increased risk and early onset of ALS in professional players from Italian Soccer Teams. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2020:1-7.DOI: 10.1080/21678421.2020.1752250 9. Sport Concussion Assessment Tool – 5th Edition. http://bjsm.bmj.com/content/bjsports/early/2017/04/26/bjsports-2017- 097506SCAT5.full.pdf 10. Kirk B, Pugh JN, Cousins R, Phillips SM. Concussion in university level sport: knowledge and awareness of athletes and coaches. Sports 2018;6(4):102. DOI: https://doi.org/10.3390/sports6040102 11. Scottish Sports Concussion Guidance https://sportscotland.org.uk/clubs/scottish-sports-concussion-guidance/ (accessed April 2020) 12. Welsh Government. Concussion is Dangerous. Welsh Government Guidance on Concussion for School and Community Sport up to Age 19. Welsh Government, Cardiff; 2018. https://gov.wales/sites/default/files/publications/2018-11/concussion-is- dangerous-welsh-government-guidance-on-concussion-for-school-and-community-sport-up-to-age-19.pdf (accessed April 2020)

32 TIME FOR CHANGE IN WALES REPORT 2021 WELFARE BENEFITS SYSTEM

KEY ISSUES • An individual with an Acquired Brain Injury may not be able to work in both the short and long-term, and the loss of income is likely to have an immediate impact on their quality of life, at a time when they are most vulnerable • The welfare system is complex, has detailed application processes and can be protracted with repeated and frequent re-assessment • Assessing mental capacity is fraught and a sound knowledge base and empathy about the consequences of Acquired Brain Injury is essential for assessors

RECOMMENDATIONS • Training is required for all assessors involved with individuals who have Acquired Brain Injury • Re-assessment for welfare benefits should only take place every five years • A brain injury expert should be on the consultation panel when changes in the welfare system are proposed

OVERVIEW

An individual with an ABI may not be able to work in both the short and long-term, and the loss of income is likely to have an immediate impact on their quality of life, at a time when they are most vulnerable. Some individuals may have workplace sickness schemes or insurance policies, but that does not apply to everyone. Even those who do have financial support from their employer, or receive compensation payouts, may still be entitled to welfare benefit payments from the Department of Work and Pensions (DWP). A brain injury survivor may also be entitled to benefits to assist with care and mobility. Welfare benefits, subject to qualifying criteria, are available to support those with ABI. However, the welfare benefits system is complex, with detailed application processes, and can be protracted. An individual with an ABI and their family need to apply as soon as possible in order to obtain a regular income that will meet living costs in the short and long-term, as well as care and mobility support. There are numerous benefits available (see Table 1).

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 33 Table 1: Wide range of benefits available to individuals with an Acquired Brain Injury Statutory Sick Pay Available for a limited period for those still employed but unable to work Employment and Support Allowances Main benefit for those unable to work through illness or disability Income Support Available in certain cases for those with substantial caring responsibilities or have young children Disability Living Allowance (DLA) For children who have mobility problems or extra requirements for care Attendance Allowance For those of state pension age who have care needs Personal Independence Payment (PIP) Replaces DLA for new claimants of working age. Qualifying criteria includes the effects of the condition, rather than the condition itself and is reviewed regularly. People of working age who currently receive DLA will be migrated to PIP; people over 65 years will continue to receive DLA/PIP as long as they qualify Carer’s Allowance For anyone who has substantial caring responsibilities for a person with a disability Housing and Council Tax Benefit Both are means-tested and contribute towards the cost of rent and Council Tax Child Tax Credit For those with dependent children up to a certain age Universal Credit Being phased in to provide one payment to cover a range of welfare benefits and is expected to replace Jobseekers Allowance, Housing Benefit, Working Tax Credit, Child Tax Credit, Employment and Support Allowance and Income Support by 2022

There may also be additional help for mortgage relief, local authority care, and certain National Health Table 2. Welfare system and Acquired Services. There is also support available for those Brain Injury: a first hand perspective1 who are working and on a low income in the form of • 93% of people found the benefits Working Tax Credit. The three key benefits are the assessment process difficult and/or Personal Independence Payment (PIP), Employment unsatisfactory and Support Allowance (ESA), and Universal Credit. • > 90% agreed that benefit assessors did PIP is paid to individuals who have difficulty with not have good insight into the challenges, everyday living and/or moving around, and ESA is paid symptoms and impact of ABI. Assessors had to people who have difficulty working due to illness or little knowledge of the issues disability. Universal Credit is paid to individuals who • 1 in 4 thought they/loved one were receiving have difficulty working due to illness or disability, and is adequate levels of welfare benefit to meet partially replacing ESA. their needs • > 90% agreed that benefit application forms NAVIGATING A COMPLEX SYSTEM IS A were not a good measure of an ABI individual’s DIFFICULT CHALLENGE needs and they focused on physical illness, Individuals with ABI frequently have cognitive problems neglecting cognitive issues which makes the application process extremely challenging, from understanding the information required through to communicating the answers. Often, the assessors have inadequate knowledge and Individuals with ABI found the welfare system difficult understanding of ABI, and lack empathy with both to understand and inadequate for their needs. The the individual and their family. In 2015, Thompsons assessors had a poor knowledge of ABI, and the Solicitors and Headway, the brain injury charity, applications forms were long, difficult to complete, and conducted a focus group with brain injury survivors, to much too complicated1. learn more about their experiences of navigating the welfare benefits system (see Table 2).

34 TIME FOR CHANGE IN WALES REPORT 2021 THE FRONTAL LOBE PARADOX AND CASE STUDY: EURON ITS IMPLICATIONS FOR MENTAL In 2013 Euron suffered a CAPACITY ASSESSMENT serious TBI when a friend on a The Mental Capacity Act (MCA) is designed to ride-on lawnmower ran over protect and empower individuals who may lack the a stone; it shot through the mental capacity to make their own decisions about air and shattered Euron’s skull. their care and treatment. It is a law that applies to As a result he has difficulties individuals aged 16 years and over. There is a group with communication, memory, of individuals with ABI that have prefrontal cortex concentration, sequencing, (PFC) damage who perform well in interview and fatigue and migraine, all of which have had an adverse test settings, despite marked impairments in everyday impact on his life. He described the Welfare Benefits life. This is known as the ‘frontal lobe paradox’ or the System as a ‘minefield’ because he was self-employed. ‘knowing doing dissociation2,3. Failure to take account He lived on basic sick pay and his own savings for over of this when conducting MCA assessments can result a year before he applied for the personal independent in disastrous consequences for individuals with ABI4 payment, and was awarded the higher rate of (see Table 3). payment. Two years later, and despite no changes in his circumstances, it was decided that Euron’s benefits would be reduced considerably. On appeal, and with a letter from the neurologist, the benefits were Table 3: Frontal lobe paradox re-instated. Euron found this process stressful and outcomes in formal assessment setting difficult; and thought it inconceivable that someone • Can perform tasks which are externally with little ABI knowledge in a 30 minute assessment prompted by an assessor, but lack ability to could make decisions that will have an enormous self-initiate those tasks effect on the claimant’s life. • Perform adequately in well-structured situation, but have difficulty with complex behavioural organisation in non-routine situations Opinions on how test performance is likely to • Lack insight into their impairment and so fail influence everyday behaviour should not be made to use compensatory strategies without carefully interviewing those with direct • Long-term ‘rule maintenance’ may go experience of the person’s real-world behaviour undetected as the testing process is short over a period of time5. The interview setting may • Testing may fail to highlight the effort required mask an individual’s care and support needs. A – they may perform normally but it is exhausting change to the MCA assessment process is required • Few demands on social cognition to ensure that information about patients’ adaptive behaviour is gathered as a matter of routine.

REFERENCES 1. Thompson Solicitors. Welfare Benefits and Acquired Brain Injury. Retrieved from https://www.thompsons.law/support/legal- guides-and-resources/welfare-benefits-and-acquired-brain-injury-infographic (accessed April 2020) 2. Walsh KW. Understanding Brain Damage: A Primer of Neuropsychological Evaluation. 1985. London: Longman Group Ltd 3. Teuber, HL. The Riddle of the Frontal Lobe Function in Man. In J.M. Warren and K. Akert (Eds.), The Frontal Granular Cortex and Behavior (pp. 410–58). 1964. New York: McGraw Hill 4. George MS, Gilbert S. Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist 2018;5(1):59-66. Retrieved from https://www.researchgate.net/publication/324899681_Mental_ Capacity_Act_2005_assessments_why_everyone_needs_to_know_about_the_frontal_lobe_paradox (accessed April 2020) 5. Wood LI, Bigler E. Problems assessing executive dysfunction in neurobehavioural disability. In T.M McMillan & R.L.I Wood. (Eds.) Neurobehavioural Disability and Social Handicap Following Traumatic Brain Injury (pp.88-100). 2017. Oxford: Routledge

TIME FOR CHANGE IN WALES REPORT 2021 TIME FOR CHANGE IN WALES REPORT 2021 35 Co-ordinated and produced by The United Kingdom Acquired Brain Injury Forum (UKABIF) with support from Kyle’s Goal

UKABIF is a registered charity number 1128284 and a company limited by guarantee registered in England and Wales Company Number: 6520608. Address of the Company’s Registered Office: Box 2539, Kemp House, 152-160 City Road, London, EC1V 2NX www.ukabif.org.uk 03456080788

@UKABIF Facebook/UKABIF

Images by Cottonbro, Skitterphoto, Pixabay, Patrick Case, Ashley Williams, Andrew Neel – from Pexels