HEAD INJURY; THE REHABILITATION PATHWAY. Professor Graham Powell. Professor of Clinical and Neuropsychology

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1 HEAD INJURY; THE REHABILITATION PATHWAY by Professor Graham Powell Professor of Clinical and Neuropsychology The management of head injury will broadly flow along a pathway from Accident and Emergency to acute brain injury services, then to regional rehabilitation units and transitional units, and finally to community reintegration and maintenance. Each individual s experience will be different depending on the precise injuries, the organisation of the local resources and services, the individual s own pattern of recovery over time, and the preferences and choices of the person and their family. Accident and Emergency In A&E they will determine whether the head injury is superficial (eg lacerations or swellings to the scalp); to the skull (eg skull fractures and whether they are depressed or not); to the outer coverings of the brain (eg subdural or extradural bleeds/haematomas, which may eventually affect the brain if the collection of blood increases in size); or to the brain itself, ie a traumatic brain injury, TBI (eg contusions/bruises to different parts of the brain or small bleeds scattered throughout the brain, often referred to as diffuse axonal injury). If the situation seems stable then the person can be allowed home with Head Injury Instructions setting out what signs to look for that suggest the person should be brought back to A&E. For example, deterioration in level of consciousness or confusion could suggest that there is ongoing bleeding. If, on the other hand, there is cause for concern or a clear or potential need for treatment the person will be admitted for neurological observation and monitoring and for further investigations and clinical decision-making. If the person stabilises and there are no immediate treatment needs then the person may go home after a few days with a follow-up appointment and instructions to return if there seems to be any form of deterioration. Acute brain injury services

2 Severe TBI cases may need a range of treatment, often delivered in a specialist neurological or neurosurgical intensive care unit. Treatment can include the insertion of a monitor to measure pressure inside the brain (intracranial pressure) because if pressure rises there may be brain swelling or bleeding; the administration of drugs to reduce brain swelling or to keep the person sedated; surgical operations, eg to drain a blot clot, to stop bleeding, to repair the skull, to lift up a depressed fracture that is pressing on the brain. Once through the initial emergency and once clinically stable the person will be moved to a ward where a decision will be made as to whether a person can go home with a community package of some nature (eg follow-up appointments, out-patient appointments with therapists, input from social services if there are care needs) or whether they will need to go for rehabilitation first. Rehabilitation units There are NHS rehabilitation services throughout the country. They come under slightly different names but can usually be found by an internet search for regional rehabilitation units and adding the name of the town or region. For example in Bristol there is the Frenchay Brain Injury Rehabilitation Centre, in Oxford the Oxford Centre for Enablement, in North London the Regional Rehabilitation Unit at Northwick Park, in East London the Regional Neurological Rehabilitation Unit at Homerton Hospital, in Birmingham the West Midlands Rehabilitation Centre, in Newcastle the Hunters Moor Regional Rehabilitation Centre. There are also private units. For example the Brain Injury Rehabilitation Trust (BIRT) have units in many areas of the country including Devon, the South Coast, Milton Keynes, Birmingham, Leeds, Liverpool, York, Northumbria and Glasgow. Some units are primarily for the Forces, such as the Defence Medical Rehabilitation Centre, Headley Court. Some units have special expertise in cognitive rehabilitation, such as the Oliver Zangwill Centre in Ely. Other centres have special expertise in challenging behaviour problems, such as the National Brain Injury Centre at St Andrew s Hospital in Northampton or the Transitional Rehabilitation Unit in Haydock. Some units have specialised in low awareness states, such as the Royal Hospital for Neuro-Disability in Putney.

3 All regional units will in general terms take a holistic and client centred approach and deal with a broad range of problems that may be cognitive (eg reasoning, memory, language), emotional (eg, anxiety, self esteem, confidence, depression, mood swings), behavioural (eg anger, irritability, fatigue, impulsivity) or physical (eg use of mobility aids, hemiparesis, reduced co-ordination). Units will be multidisciplinary and will include, for example, occupational therapists, speech and language therapists, psychologists, psychiatrists, physiotherapists, dieticians, podiatrists, therapy assistants, nursing staff, care staff. Not all units can take all types of patients; for example some units cannot take people who have tracheostomies. Good practice in the rehabilitation programmes will include: clear, concrete goals; specific goals that are capable of being defined and measured, measures of each goal put in place and a record kept of his progress towards meeting each goal; feedback on progress regularly made available to the person and the family, feedback being an important part of the learning process; steps taken towards achieving goals that are graded and hierarchical in nature, eg starting with steps that are less challenging, least stressful, most manageable, working gradually upwards to more challenging activities; as each step up the hierarchy of difficulty is made, the person should feel comfortable before taking the next step; as each step is taken, any difficulties should be noted and explicitly addressed, eg coping with specific anxieties that might arise, or training in some specific skills that the person might be seen to lack; a choice of goals that is made collaboratively with the person, who should feel a partner in the enterprise and should feel a sense of ownership, which will help ensure commitment and motivation and the relevance of the programme; a proportionate reduction of input as progress in independence is made. The extent and nature of progress made in rehabilitation will determine the nature of the community reintegration package, which will be decided in a detailed Discharge Planning Meeting. In order to help discharge planning the unit sometimes has a Transitional Living Unit, eg a flat in the unit or in the grounds where the person can test out their skills of independent living and where a support regime can be trialled to make sure it is appropriate and adequate.

4 Community reintegration and maintenance The aims of community reintegration and rehabilitation will be to build on the gains made so far in treatment, to translate gains into the real life setting, to tackle problems that are unique to the community setting which cannot be tackled as an in-patient, to improve confidence and ability in all activities of daily living, to improve decision making in both domestic and social contexts, and to develop a structured social routine that includes leisure and appropriate occupation or work activities. Such work may be voluntary in nature or supported in some way, or in the normal employment market including previous occupation. There may be specific vocational advice and courses available, for example from the Papworth Trust, or Work Choice through the Shaw Trust. Sometimes local services have specific programmes such as the Working Out Programme in Aylesbury, part of their Community Head Injury Service. Sometimes community reintegration is managed by an Outreach team from the rehabilitation unit, such as the Homerton Specialist Acquired Brain Injury Outreach Team. Sometimes there is a community brain injury service, such as the Traumatic Brain Injury Service at Morriston Hospital in Swansea or the Sheffield Community Brain Injury Rehabilitation Team. The community rehabilitation package may also be a private one that will be organised by a case manager (see British Association of Brain Injury Case Managers for example) with bespoke input from the range of professionals required, eg psychologists, occupational therapists, psychiatric monitoring and so on. There will often be a support worker and/or rehabilitation assistant to progress on a daily basis the advice from the specific professionals, and also to ensure the person s well-being and safety. The rehabilitation package will be guided by an explicit risk assessment and there will be an overarching Rehabilitation and Support Plan to ensure that treatment is properly coordinated, focussed and prioritised. There will be regular team meetings to monitor progress and maintain momentum. As the period of active rehabilitation draws to an end, which may well be a number of years, so the programme merges into one of maintenance. A good, thorough maintenance

5 programme is crucial, to prevent deterioration, maintain treatment gains, encourage further slow progress, ensure the training and standards of the support team, maintain quality of life, monitor status, respond to crises and emergencies, to ensure a continuing match to the person s needs as they move through their life span. Further information A range of readable books and pamphlets can be obtained through Headway, the national charity for supporting people affected by brain injury. Detailed information can be found in the Handbook of Rehabilitation, second edition, edited by Richard Greenwood and colleagues (Psychology Press, 2003) and in Clinical Neuropsychology: a practical guide to assessment and management for clinicians, second edition, edited by Laura Goldstein and Jane McNeil (Wiley-Blackwell, 2013). Professor Graham Powell Professor of Clinical and Neuropsychology 2012