People with Brain Injury

A Joint Strategy for Health and Social Care Services for People with Brain Injury Leicester, Leicestershire & Rutland 2004 2010 wp/brain injury group/bi strat Nov 04 final version

What is it like to have a brain injury? - Visit the Leicester, Leicestershire and Rutland Headway web site at www.headwayleicester.org.uk for examples of peoples personal experience of what its like to have a Brain Injury. Are you affected by brain injury? If you need advice, information about brain injury or services contact Headway helpline during office hours telephone 0116 2739763. Brain Injury Strategy Group membership Alison Nield Carol Marsdon Carol Wileman Chris Spreadbury Deborah Perry Dr Heather Dipple Dr Peter Critchley Dr Uditha Jayatunga Mark Goddin Jean Billington Liz Rowbotham Mark Darlow Nitin Shulka Sarah Monk Sylvia Davis Wallace Pointon, Chairman Head of Strategy and Planning, ELPCT Head of PCT Hosted Therapy Services, Charnwood and North West Leicestershire (C&NWL) PCT Locality Manager, C&NWL PCT. Neuro Clinical Psychologist, UHL. Social Service Manager, Promoting Independence Unit, Leicester City Council. Consultant Rehabilitation Psychiatry, Leicestershire Partnership Trust. Consultant Neurologist and Brian Injury, UHL. Consultant Rehabilitation Medicine, UHL. Social Service Manager, Leicestershire County Council. Social Service Manager, Rutland County Council. Director Clinical Support Services, UHL. Director of Specialist Commissioning (LNR), Eastern Leicester PCT. Clinical Services Manager, Leicester City West PCT. Core Brain Injury Team Manager, University Hospitals of Leicester (UHL). Manager, Headway Leicester, Leicestershire & Rutland Strategic Development Manager Long Term Conditions. Melton, Rutland and Harborough PCT. wp/brain injury group/bi strat Nov 04 final version

CONTENTS Section Page INTRODUCTION 1 4 STRATEGIC PRINCIPLES 2 5 AIMS 3 5 SERVICE MODEL 4 6 OBJECTIVES, GAPS AND ACTION PLAN BY SERVICE AREA 5 7 RECOMMENDATIONS 6 7 STRATEGIC OBJECTIVES AND ACTION PLAN BY SERVICE AREA Table 1 8 2004/05-2005/06 COSTED PRIORITIES Table 2 15 APPENDIX WHOLE SYSTEM SERVICE USE 1 16 BIBLIOGRAPHY and GLOSSARY 2 18 PROGRAMME BOARD STRUCTURE FOR LONG TERM CONDITIONS 3 21 wp/brain injury group/bi strat Nov 04 final version

1. INTRODUCTION This strategy is the first whole systems approach to services for adults with acquired brain injury to be commissioned by the Physical and Sensory Disability Programme Board. The strategy sets out a direction for the modernisation and improvement of services for people with brain injury and their carers over the next Six years. The strategy is relevant to the four stages of care for people with Long Term Conditions covering diagnosis and initial management, maintenance care, complex care and palliative care (9). The strategy does not cover critical care or neurosurgery though links are made with these services. Whilst focusing on people with brain Injury many aspects of the strategy should improve services for people with other neurological long term conditions. There is recognition that, with the exception of stroke (for which a separate strategy has been developed), acquired brain injury and complex disability usually affects people of working age who may need different services to older people. The strategy takes into account Department of Health guidance on planning priorities (2) including developing local targets and case management. Local consultation (3) with people with a neurological condition, carers and voluntary support groups on care pathways Gap analysis against DOH guidance that will inform the National Service Framework (NSF) for people with Long Term Conditions (4, 5, 6, 7). Acquired brain injury may be defined as any insult to the brain, which may arise from a blow to the head (Traumatic Brain Injury), a consequence of an infection in the brain or lack of oxygen reaching the brain. Brain injury (BI) can significantly affect many cognitive, physical, and psychological skills. The majority of people following brain injury will make a good recovery, but some will have a severe complex disability requiring specialised rehabilitation followed by support in the community. Those less severely injured may make a partial recovery returning home, but requiring information or support to adjust and live with their disability. A larger group (numbers not known) suffer apparently minor injury, but subsequently have high-level cognitive deficits such as memory and/or attention problems or altered personality. Brain injury can happen to anyone, and the consequences can be devastating and long lasting (8). The long term effect of brain injury effects one family in every 300 with a prevalence rate of 100-150 disabled survivors per 100,000 population. In the 1970s 90 per cent of all severe brain-injured patients died, now the majority survive. 0.37per 100,000 population a year is likely to require long term 24-hour support following a brain injury (9) (LLR est. 3 to 4). Victims of traumatic brain injury tend to be at a young age between 20-35 and Males are two or three times more likely to have a traumatic brain Page 4 of 22

injury than females. In the age range 15-29, males are five times more likely to do so (8). A high proportion of the causes of traumatic brain injury in young people are associated with alcohol consumption. The numbers of people receiving services through the health and social care pathway is set out in appendix 1. 2. STRATEGIC PRINCIPLES The principles underpinning the model for future service provision are to: Involve service users and carers in planning and delivery of services. Promote healthy lifestyles to prevent brain injury and promote the health of people with brain injury. Provide high quality treatment and care which is known to be effective. Promote social inclusion and reduce discrimination for brain-injured people in society. Provide services close to home and offer choices that promote independence. Be suited to those who use them and non-discriminatory. Be accessible so that help can be obtained when it is needed. Be well co-ordinated between staff and agencies and integrated where appropriate. Deliver continuity of care for as long as this is needed. Empower and support staff across agencies and disciplines to have appropriate skills and competencies. 3. AIMS The aim is to have a comprehensive specialist health and social care service for people with brain injury and complex disability who support and are supported by a network of services in acute and specialist/specialised inpatient and community settings. The overall aim is to ¾prevent brain injury, ¾promote the health and social well being of people with brain injury, ¾deliver effective integrated services in which the person with brain injury and their carers play a role, ¾to assist people in maximising their independence and control over their lives and their quality of life and inclusion in society. Local Authorities and PCTs support the belief that where brain injury results in an impairment for a person this may become disabling for them because of social and physical barriers that the individual encounters in daily life Page 5 of 22

4. SERVICE MODEL A proposed hub and spoke service model builds on the UHL Pathway model in which there is close partnership working between specialist brain injury services, specialist equipment services, and community services with a specialist interest in neurological disability working in conjunction with primary care and main stream social care services. The specialist services provide advice, skills, techniques, equipment, and case management for people with complex needs and treatment facilities as well as support for training and research. Close working links are maintained with all services by sharing/rotating, guidance on care pathways, training programmes and sharing bases where appropriate. Hub and spoke model Community specialist neurological services with linked SSD disability workers, input from community neuropsychiatry and UHL specialist services when required. Acute/post acute Inpatient care Day care, care packages, supported housing, residential care, vocational support, leisure PCT/Hosp specialist outpatient rehabilitation HUB Specialist Services Specialised Disability Equipment Services single point of contact wheelchairs, electronic assistive technology, prosthetics / orthotics, environmental controls, electronic communication aids Specialist/specialised inpatient rehabilitation, including neuropsychiatry Specialist clinics e.g. pain, spasticity, management, rehabilitation medicine, neuro psychology Page 6 of 22

The model anticipates that following acute and post acute hospital treatment: The majority of people will be discharged from hospital needing information and advice and those with persistent problems will need follow up from their General Practitioner. Some people with persistent problems after discharge may also require support from community health and social services with advice or referral to specialist community services in neurological conditions and if necessary referral on to secondary care specialist services. People with a complex disability will be transferred from acute or post acute brain injury care to specialist/specialised inpatient rehabilitation and on discharge from hospital will be followed up by specialist services. People with NHS continuing care or joint continuing health and social care needs would receive case management and rehabilitation from community specialist neurological services and SSD linked disability workers supported by primary care services. 5. OBJECTIVES, GAPS AND ACTION PLAN. Table 1 (page 8) sets out the gaps in the whole system, objectives, action to modernise services, time scales and lead arrangements for taking the actions forward. Proposed costed development priorities for 2005/06 are identified in table 2 (page 15). The strategy would be implemented and monitored through the Physical and Sensory Disability Programme Boards proposed structure for the NSF for Long Term Conditions (appendix 3). 6. STATUS This strategy was endorsed by PCTs, NHS Trusts and Social Services in Leicester, Leicestershire and Rutland at the meeting of the Leicestershire Executive Group on 1 November 2004. Wallace Pointon Strategic Development Manager (Disability and Long Term Conditions) On behalf of the Disability Programme Board Page 7 of 22

TABLE 1 STRATEGIC OBJECTIVES AND ACTION PLAN BY SERVICE AREA Gaps Objective Action By when Lead 1. Health Promotion preventing traumatic brain injury 1.1 Health promotion plans Local Strategic Partnerships to prevent traumatic brain (LSPs) have considered how injury. their health promotion plans might help prevent traumatic head injury. PCT Public Health directorates raise LSPs awareness to the role of accident prevention and alcohol and substance misuse plans in helping reduce preventable traumatic brain injury, including the need to encourage the public to seek medical advice if they have a head injury. Mar 2005 Public Health Network 1.2 Staff awareness of their role in head injury management To ensure staff in primary, community health and health advice line services are familiar with NICE guidance on acute head injury PCTs and NHS Direct issue relevant sections of NICE guidance to GPs, Dentists, Community Health workers and minor injury units. Mar 2005 PCTs, NHS Direct. 2. Acute and Post Acute Acquired Brain Injury Care 1.3 Patient/carer To implement NICE guidance information for people with (5) on acute head injury brain injury management in UHL. UHL audit their position against NICE guidance for acute head injury requirements and develop improvement plans. Mar 2005 UHL 1.4 A&E Head injury management Impact of implementing NICE guidance (5) on CAT scans and discharge from A&E and emergency admissions is not known To evaluate the impact on hospital admissions of introducing CAT scans for some patients attending A&E with head injury Evaluate the impact on hospital admissions when implementing NICE guidance for CT scans for some patients with traumatic brain injury whilst in A&E and report the outcome to the emergency care programme board. Mar 2006 UHL reporting to, Emergency Care Programme Board Page 8 of 22

1.5 Post acute care No post acute (critical care) care team/facility for BI management in UHL Delays in transfer (repatriation) to UHL following neurosurgery. To establish a dedicated area in UHL for post acute care and rehabilitation To avoid delays in transfer (repatriation) from neurosurgical units. UHL to co-locate post acute beds for people with brain injury. UHL to review staffing levels on the post acute unit once open Develop a local referral/transfer and repatriation protocol for people with head injury agreed between UHL and Neuro-surgical centres, with the support of PCTs. Dec 2004 Dec 2005 Mar 2005 UHL, UHL UHL, C&NWLPCT 3. Specialist and Specialised Rehabilitation Inpatient Services 3.1 specialised inpatient rehabilitation services for Specialised inpatient care for people with complex disability BI and complex disability - should be provided in No local provision Leicestershire within the UHL Pathway development for specialised/specialist rehabilitation. This should include a safe environment and appropriate input from mental health services. Until the Pathway developments are complete PCTs should seek to commission services as close to Leicestershire as possible and develop service level agreements for specialised/specialist services. UHL confirm the time scale for the Pathway development for specialised/specialist rehabilitation facilities to be available in area (except low secure specialised care). PCTs to develop service level agreements for specialised/specialist inpatient rehabilitation and explore options for services closer to LLR. Dec 2004 Mar 2006 UHL ELPCT, MRHPCT 3.2 Staffing Appropriate staffing on the specialist neurorehabilitation unit (Young Disabled Unit) to provide care and rehabilitation To develop skills on the YDU to manage people with complex disabilities to enable earlier transfer from and reduced lengths of stay in out of area units. Develop a plan for transfer of care to YDU to reduce out of area lengths of stay. Sept 2005 UHL/ MRHPCT Page 9 of 22

locally for people across a range of complex disabilities and Lack of skilled staff to provide local services in Pathway developments. 3.3 Neuro-psychiatry Lack of local inpatient neuro-psychiatry provision Leicester, Leicestershire and Rutland To develop a plan to ensure the staff skills are available in preparation for the Pathway development. Reduce out of area specialist inpatient placements 4. Specialist Community Health and Social Care Physical Disability Services 4.1 Day Care Ensure people with physical Headway house not disability can access Headway accessible to wheel House accessible to wheelchair users 4.2 Community specialist services in neurological conditions with a special interest in BI and complex physical and cognitive disability Lack of community services with a specialist interest in people with BI and neurological disabilities Duplication in case management Lack of integrated services for people with health and social care needs. Delays in assessment and provision of health and To ensure that people with a severe BI complex physical disability have access to community health and social workers with an appropriate specialist interest to provide case management and rehabilitation and that these services are integrated where appropriate Ensure that people needing health and social services receive care promptly and efficiently within the DOH performance assessment framework. Develop a workforce development plan in preparation for Pathway provision of local specialist services. Develop a commissioning plan and service level agreement with LPT to provide specialist inpatient care, making better use of ECR expenditure. Headway pursues plans to make Headway House accessible to wheelchair users. Review joint commissioning arrangements for people with a BI and complex disability that need continuing health and social care. Establish monitoring systems for joint complex care packages and set performance targets in line with DOH standards for social service assessments and initiation of care. Review the service model, need for, commissioning and hosting arrangements for community services with a specialist interest in neurological conditions/rehabilitation, including GPwSI, community therapy, nursing services, and the Core Brain Injury Team providing case management. Local authorities and PCTs review and develop plans for integrated community specialist neurological services and linked social care services for people with a severe complex March 2006 Mar 2005 Sept 2004 Mar 2006 Oct 2005 March 2006 Rehab models of care programme board MRHPCT Headway MRHPCT/ C&NWL PCT See collaborative commissioning strategy Sept 04 Long Term Conditions PCT Leads Group City and Counties P&SD Planning Groups Page 10 of 22

social care packages physical disability and in the interim. Local authorities establish designated social worker links with the CBIT to reduce duplication/delays. March 2005 City and Counties P&SD Planning Groups 4.3 Community neuro psychology and neuropsychiatry Inequity in access to Neuro-psychology for people with complex neurological disabilities. Lack of local provision of community neuropsychiatry to support people with complex disability who receive case management. People placed out of area Ensure equity of access to neuro-psychology for people with continuing care needs Ensure access to local specialist neuro-psychiatry for shared care with community physical disability health and social services See 5.1 for pathways to specialist services See 6.1 staff development Develop an SLA for neuro-psychology for continuing care making better use of existing resources. Develop a commissioning plan and service level agreement with LPT to provide specialist community services, making better use of ECR expenditure Nov 2004 Nov 2004. MRH PCT MRH PCT 4.4 Disability Equipment Long waits for specialist disability equipment - wheelchair special seating, environmental control aids and electronic speech communication aid services. Specialist disability equipment services not integrated. Staff not aware of care pathways to access To develop local waiting time targets and pathways for integrated specialist disability equipment services. Ensure staff To develop care pathways for community equipment special seating UHL incorporate electronic speech communication aid services in the pathway development for specialised disability equipment services on the planned care site. Develop and monitor SLAs and waiting times for specialist NHS equipment services (District Audit 2000). Develop local targets for specialist equipment and an implementation plan to inform the SDDP for 2005/06 to 2008/09. Develop care pathways for specialist NHS equipment. Develop care pathways for community Sept 2003 Mar 2005 Mar 2005 Mar 2006 Dec 2004, UHL LEG to confirm lead Long Term Conditions PCTs Leads Group Equipment Board Page 11 of 22

integrated community equipment special seating services and NHS specialist equipment services. equipment special seating. Incorporate equipment care pathways in appropriate staff guidance. Dec 2005 Equipment Board 4.5 Housing, education work, leisure, social care Delay in arranging community care packages that require housing Health and social care workers lack knowledge and a co-ordinated approach to help people with severe disability to enter education, prepare for or return to work or participate in leisure activities. Increase accommodation choices for people to reduce delays in initiating community care packages To ensure that people with brain injury have access to Direct Payments, Independent Living Funding and a range of local services including welfare to work, leisure and education opportunities to meet their needs 5. Community and Primary Care Services 5.1 Awareness of services To ensure GPs have Lack of information for information on services for Primary care on services for people with BI and complex disability. Lack of information for patients/carers on when to contact services people with BI and complex disability who have persistent problems following brain injury (NICE BI) or a change in their circumstances/condition (NICE MS), particularly cognitive and Explore plans to address local accommodation deficits and provide more choice for people with a severe disability Assess the needs of people with a severe disability for welfare to work, leisure and education to help inform the development of multi agency plans. Develop interagency care pathways for education, work and leisure for people with severe physical and cognitive disability e.g. between the Leicestershire Breaking The Barriers Team, Rutland s Employment coordinator and health occupational therapists Review the need for health specialists in vocational rehabilitation (DOH policy due March 2005) for people with Long Term Conditions. Develop information for Primary Care Teams on services available for people with BI or neurological disability Develop PCT care pathways and information on referral to community specialist neurological services and onward referral to secondary care services if required. (NICE MS). See LA plans See LA plans Sept 2005 Sept 2005 Dec 2006 Dec 2006 City and Counties Disability Planning Groups/Supported Housing Groups City and Counties Disability Planning Groups/Supported Housing Groups Long Term Conditions PCT Leads Group/ Rehabilitation Models of Care Board. Long Term Conditions PCT Leads Group Community specialists with LTC PCT leads support Page 12 of 22

5.2 Residential care Lack of local continuing health and social care provision for people with severe cognitive problems behaviour problems. Develop commissioning plans to provide local joint care packages for people with continuing health and social care needs and severe cognitive problems. Develop a commissioning plan for more cost effective and local residential care for people with severe cognitive problems in line with the collaborative commissioning plan for continuing care (4.2) for people with physical and sensory disabilities. March 2005 Collaborative commissioning group with plans taken forward by the Collaborative contracts group(s) 6. General 6.1 Staff Development Professionals and support staff skilled in the management and care of people with long term conditions and physical and cognitive problems To ensure that staff have the appropriate skills to meet the needs of people with a brain injury. To ensure a learning/education network is established to support training of staff with a specialist interest in BI and neurological conditions/rehabilitation SLA for local community neuro-psychiatry and psychology for people with continuing care should provide support/advice to primary and community care services. Develop a training and skills development network and programme for community staff with a specialist interest in BI and neurological conditions.. Nov 2004 Mar 2006 MRHPCT Rehab models of care programme board and WDC in collaboration with the Long Term Conditions PCTs Leads Group 6.2 User Involvement Carer support/involvement Programme board plan for user consultation 6.3 Information Service A co-ordinated approach to the provision of information on local health and social services for people with brain injury Ensure that people with brain injury and complex neurological disabilities are involved in planning their care and service provision appropriate to their needs. Ensure that people with brain injury have information about brain injury and services and how to access them Establish a BI carer support group July 2004 CBIT To develop co-ordinated SLA for information services. Mar 2004 LA and PCT commissioning leads for Disability services Page 13 of 22

and severe disability. 6.3 Management information Under developed information management systems to help assess service use including people from an ethnic minority community Ensure that service provision across the Leicestershire health community is equitable related to population need and is culturally sensitive. To provide PCTs with data on the number of people who have a brain injury and a complex disability (neurological conditions) Develop a data base on BI and complex disability continuing health and social care to inform future planning and to monitor costs and service use including people from minority groups. See collaborative commissioning plan Collaborative Contracts group(s) 6.4 Needs data Lack of epidemiological data on the long-term needs of people with acquired brain injury. To establish a public health register to assess the long-term effect (outcome) of brain injury, case complexity, population need and gaps in service provision e.g. specialised out patients, social care accommodation in the area, and people s goals and support needs for work. Explore options for a public health epidemiology register of people with brain injury to assess the long-term effects, service use and gaps, in line with the recommendations of the House of Commons Select Committee on brain injury (10). Give consideration to the register including other people with neurological conditions. Nov 2004 Public Health Network in conjunction with the Long Term Conditions PCT leads group. Page 14 of 22

TABLE 2 2004/05-2005/06 STRATEGIC ACTION COSTED PRIORITIES COSTED PRIORITIES 2004/05-2005/06 Funding source 2005/06 2. Acute 2.4 A&E head injury management CAT scans 2.5 Post acute care ward 3. Specialist inpatient rehabilitation 3.3 local in patient neuro-psychiatry 4. Specialist Community Health and Social Care 4.2 Continuing Health and Social Care packages for people with BI 4.3 Community Neuro psychology for continuing care and Community Neuro-psychiatry for continuing care 4.5 Housing, education work, leisure, social care 5 Primary and community care 5.2 Local residential care for people with severe cognitive problems Costs Included in 2003/05 LDP for UHL Radiology Business Plan UHL Emergency Business plan costs 265,765 UHLRadiology plan UHL Emerg plan Existing ECR funding (cost neutral). Separate plan available. 0 Leicester SSD growth (based on anticipated growth of 3 users) Leicestershire SSD residential care budget (based on anticipated growth of 5 cases) Rutland SSD growth (risk manage, includes social care) PCTs.LDP Joint funded care (based on average 6 new cases, 50% of the average cost of registered care home placements less reduced cost of 2 cognitive residential placements) PCT LDP 100% NHS Care (based on 2004/05 average cost of 2.5 occupied beds) PCT existing ECR expenditure in independent sector (cost neutral) PCT savings on ECR costs per case - savings on reduced costs of continuing care placements by commissioning specialist support separate from residential health and social care placements and where possible commissioning residential care in area. Leicester SSD growth (anticipate 8 new users) Leicestershire SSD growth (anticipate15 new users) Rutland SSD growth (see Rutland joint care above) Included in 4.2 above but dependant on 4.3 above. If 4.3 not implement 4.2 will cost an additional 51,951. 80,000 112,500 50,000 175,687 172,250 (30,000) (51.951) 12,000 25,000 Included in 4.2 and 4.3 6. General 6.4 Commission an Epidemiology public health register PCTs LDP 41,149 Additional worker If Leicestershire SSD is not able to link a social worker to the Core Brain Injury Team to reduce duplication and work load pressures 18,000 Page 15 of 22

WHOLE SYSTEM SERVICE USE Appendix 1 The lack of a system to describe the effect (outcome) that brain injury has on a person makes it difficult to assess case mix or complexity, and limits agencies ability to describe different programmes of care/rehabilitation and population need. In the absence of such a system, information on local service use through the care pathway has been used as a proxy of severity, dependency and need. However the numbers are small and with marked year on year and locality variation it is difficult to predict future need and plan services for populations of less than 250,000 to 500,000. Traumatic Brain Injury. Traumatic head injury is the largest cause of brain injury in young people and represents 20% of attendances at Accident and emergency departments. 80% to 90% of people attending Accident and Emergency for head injury are discharged home. 2400 a year were admitted to hospital (2000 to 2003 average) for head injury with 40 transferred to a specialist neuro-surgery unit (source code S00 and A40 & A41) out of area. Post acute inpatient rehabilitation (census data) 23 patients with brain injury (all causes excluding stroke) needed rehabilitation post critical care, and occupied hospital beds across a range of specialties including medical (11), Orthopaedic (2), surgical (4) community hospital (3) Neuro-surgical (3) and out of county (2) beds (UHL census Oct 2002). Specialist inpatient rehabilitation 4 beds were occupied on the UHL specialist young disabled unit for neuro-rehabilitation (UHL census 2002). Specialised Intensive inpatient rehabilitation between 9 to 13 out of area rehabilitation beds were occupied in a year with between 5 to 7 new admissions a year (1997-2003 range, ECR and OAT data), the majority being for neuro-psychiatry rehabilitation. In 2003/04 there where 3 admissions to rehabilitation psychiatry beds in Leicestershire. Specialised Low Secure Units 1 bed has been occupied by a person detained under the Mental Health Act since 1998 in low secure accommodation out of area (exception 2 beds for 1 month in 1999). NHS Continuing Care In August 2003 there were 17 patients needing NHS continuing care. The average number of new cases was 3 (0.32 per 100,000) a year (since 1997to 2003), the rate of growth in new patients being greater than the rate of growth in beds occupied as some patients progress or move on. Between 3 to 5 of the beds were occupied by patients with severe cognitive problems with 1 to 2 new users a year. Joint Funded Health and Social Care In August 2003 there were 23 patients with a joint funded health and social care package, the number increasing by an average of 6 a year (0.6 per 100,000 population) since 1999, many needing 12 hours of care/supervision a day. Page 16 of 22

Voluntary sector care In 2002/03 Headway provided community care services to 95 people of which 45 (47%) acquired the brain injury that year and 23 (24%) acquired the brain injury 4 or more years before. The number in contact with the service by year of injury declines gradually e.g. of those in contact with the service in 2002/03 16 acquired their injury in 2001, 7 in 2000, 3 in 1999 and an average of 1 a year between 1983-1998 (longest 1965). Brain Injury users include people who also have a learning disability or mental health problem. As at November 2001, 306 County residents were known to Headway Outpatients and community health services there is no data available on the types and complexity of disabilities that different specialist outpatients, community and primary care services manage. Social Services (2003 census) Leicester City Social Service users comprised - day services 17, outreach services 14, supporting people programme 9 (Source Headway); direct payments 1 considered and no people received Independent Living Funding support or support for Welfare to Work. Active cases with the Promoting Independence Unit (a specialist team for people with a disability), which does not include active cases with other specialist teams e.g. Mental Health or Learning Disabilities where: 4 in registered care homes within the County, 9 out of county in registered care homes and 7 within the community with support packages. Leicestershire Social Service users under the care of adult teams comprise - day services 31, outreach services 36 and 4 on the supporting people programme. Earlier in 2003 there were approximately 45 active cases (7.5 per 100,000 population), including people with a learning disability or mental health problem. Of these: 1 person was placed in nursing care, 4 people were placed in residential care, 7 people were placed out of county (not necessarily Social Services Department funded), 24 people were living in the community supported by packages of care and 5 people received adaptations only. Rutland Social Service users under the care of specialist disability social workers - 4 active cases (13 per 100,000 population) of which 3 have care packages and 1 person has services from an occupational therapist only. Page 17 of 22

BIBLIOGRAPHY Appendix 2 1., Technical Document, MRHPCT 2. Department of Health. National Standards, Local Action: Health and Social Care Standards and Planning Framework 2005/06 2007/08. 21 July 2004. www.dh.gov.uk/assetroot/04/08/60/58/04086058.pdf 3. Leicestershire & Rutland Neurology Special Interest Group. Influencing the National and Local Agenda for Neurology Services. Summary Report of the Conference held on 15 May 2002. MRHPCT 4. Department of Health. Specialised Services National Definition Set: 7, Complex specialised rehabilitation for brain injury and complex disability (adult) 10th Dec 2002. www.dh.gov.uk/assetroot/04/01/96/18/04019618.pdf 5. NICE Guideline 4 - Head injury: Triage, assessment, investigation and early management of head injury in infants, children and adults www.nice.org.uk/pdf/cg4niceguideline.pdf 6. NICE Guideline 8 Multiple Sclerosis www.nice.org.uk/pdf/cg008guidance.pdf Multiple Sclerosis, May 2004 7. National Clinical Guidelines: Brain Injury Rehabilitation. British Society of Rehabilitation Medicine and the Royal College of Physicians. Dec 2003 8. Powell T. (2000) Head Injury: A Practical Guide. Headway National Injuries Association Limited: Nottingham. 9. DOH, Outline framework on common neurological conditions 01 Jan 2001. www.dh.gov.uk/assetroot/04/07/61/78/04076178.pdf 10. Department of Health (2001) Government response to the Health Select Committee: Inquiry into Head Injury Rehabilitation. htpp://www. doh.gov.uk/headinjuries. (Accessed on 5 th June 2003) GLOSSARY A&E BI CBIT C&NWL PCT CT Scan DOH ECR Accident and Emergency Brain Injury Core Brain Injury Team Charnwood and North West Leicestershire PCT A body scan used to provide pictures of the brain. Department of Health Extra Contractual Referral - services usually purchased on a case by case basis outside the NHS when required. Page 18 of 22

EL PCT Eastern Leicester PCT GP General Practitioner GPwSI General Practitioner with a Specialist Interest ILF Independent Living Funding LDP Local Delivery Plan - PCTs financial plan for delivery of national and local NHS targets. LEG Leicestershire Executive Group LPT Leicester Partnership Trust LLR Leicester, Leicestershire and Rutland Health and Social Care Community LSPs Local Strategic Partnerships Multi-agency forum lead by local authorities with responsibility for improving the health of communities. MRH PCT Melton Rutland and Harborough PCT MS Multiple Sclerosis NHS National Health Service NICE National Institute for Clinical Excellence The NHS Body that develops evidence based guidelines for health care NSF National Service Framework PCT Primary Care Trust P&SD Physical and Sensory Disability SHA Strategic Health Authority SLA Service Level Agreement SSD Social Service Department UHL University Hospitals of Leicester YDU Young Disabled Unit (rehabilitation) Case Management Responsibility for co-ordinate and reviewing the use of resources to meet the need of an individual with complex care needs. Care pathways The patients journey between services Long Term Conditions Neurological conditions such as brain injury. National Service Frame Work National standards for health and social care which the government anticipates will be implemented across the country over ten years Neuro- rehabilitation Rehabilitation for people with neurological conditions including brain injury. Pathway University Hospitals of Leicester plans to develop new facilities. Rehabilitation (also referred to as reablement or promoting independence) - There are many published definitions of rehabilitation most of which read along the following lines: Restoration of an individual to optimal physical, cognitive, psychological and social function following injury. Broadly, rehabilitation offers three main approaches including: Page 19 of 22

Restoration of damaged function for example, getting the patient up on their feet again. Compensation for lost function, using a variety of equipment, aids and adaptations Helping a person to take back control over their own lives, maximising activity and participation both on a functional and psychosocial level Severe/Complex Disability A person has a severe physical deficit as well as a range of communicative, cognitive and/or behavioural deficits. Numerically, the most significant cause of such deficits is brain injury due to any cause including trauma, sever cerebrovascular accident, infection/inflammation, post-surgery, and hypoxia. However, other causes of complex disabling conditions include Under certain circumstances, patients with neurological conditions such as multiple sclerosis or Guillain-Barre syndrome. Co-existing spinal and brain injury Multiple trauma Severe musculoskeletal (bone and tissue) or multi-organ disease (e.g. rheumatoid arthritis with neurological complications) Physical illness/injury complicated by psychiatric or behavioural manifestations Supported Housing - A government initiative providing support to people at home linked to housing schemes and replaces sheltered housing that used to be provided by local authority housing departments. The initiative is lead by social services. Whole Systems All Health and Social Care systems required for people with brain injury with different needs. Page 20 of 22

Physical & Sensory Disability Programme Board Long Term Conditions Planning and Implementation Structure Appendix 3 Leicestershire Executive Group Other Programme Boards Physical & Sensory Disability Programme Board Review NSF Long Term Conditions, plan priorities and work programmes reporting to LEG. Collate and report LLR performance on NSF to SHA, Service Improvement Programme Board Review progress and agree work programme priorities Continuing Care Steering Group Specification task groups (NHS Component) - BI &CPD - OP - LD - MH - Children H&SC Collaborative Contracts Group Community Equipment Board City and Counties P&SD Planning Groups/Forums - Integrated community health and social care services/case management - Housing/accommodation - Work - Education - Leisure - Information - Pathways for above - Independence matters - Direct payments - Link to LSPs - Sensory disability - Link to Supported Housing boards Long Term Conditions PCT Leads Group - NSF LTC - Related PCT commissioning issues - Pathway/plan for access to community professionals with special interest in neurology - Info for GPs/patients - Protocols sharing/transfer of responsibility/info - Specialist NHS disability equipment commissioning plans Rehabilitation Models of Care Board - Neurology/ disability secondary care protocols - NHS plan for vocational rehab - Training and skills development strategy (professionals with specialist interest in neurology) - R&D PCT Hosted Services Board SCG PCTs, LDP Key see next page wp/brain injury and complex disability/draft report 21 of 22

Long Term Conditions Implementation Planning Structure Key LINES OF REPORTING PLANNING LINKS PCT and JOINT COMMISSIONING LINKS and REPORTING KEY COLLABORATIVE PLANNING GROUPS FOR LONG TERM CONDITIONS ASSOCIATE PLANNING GROUP. This group also supports other programme boards. PCT and JOINT H&SC COMMISSIONING/CONTRACTING. These groups commission for a range of client groups and are not specific to Long Term Conditions. H&SC Contracting groups may also report to LEG. Commissioning City and Counties P&SD Planning Groups/Forums Long Term Conditions PCT Leads Group Rehabilitation Models of Care Board H&SC Collaborative Contracts Group Community Equipment Board Specialist Commissioning Group (SCG) PCT, LDP capacity and commissioning. wp/brain injury and complex disability/draft report 22 of 22