Clinical Strategy and Programmes Division. Rehabilitation Medicine Programme. Model of Care

Transcription

1 Clinical Strategy and Programmes Division Rehabilitation Medicine Programme Model of Care For the Provision of Specialist Rehabilitation Services in Ireland Version

2 DOCUMENT MANAGEMENT Document Info Document Number: Created By: RMP001 National Clinical Programme in Rehabilitation Medicine Version Number: 0.18 Last Saved On: 24 th November 2014 Document Status Date Effective: 2 nd substantive draft To be confirmed Approval Date: Approved By: RMP Working Group RMP Consultants Clinical Advisory Group Responsible for Implementation: Responsible for Audit and Monitoring: Revision Date: Associated Documents: 2

3 VERSION CONTROL Version 0.01 Version 0.02 Version 0.03 Version 0.04 Version 0.05 Version 0.06 Version 0.1 Version 0.12 Version 0.13 Version 0.14 Version 0.15 Version 0.16 Version 0.17 Version th November 2011: first draft by AC, VT and DD for first MOC work-stream meeting th May 2012: MOC work stream 13 th June 2012: MOC work stream 11 th July 2012: MOC work steam for review by AC 31 st July 2012: Additions by AC 10 th January 2013: additions / changes made by VT, DD and WG members 5 th April 2013: 1 st substantive draft- incorporating additions from DD and working group. For review by RM CAG 1 st May 2014: alterations by EO D 4 th May 2014: alterations by EOD after WG meeting June 2014: alterations by EO D after WG feedback July and August 2014: redraft by JM and EO D 22 nd August 2014: amendments after WG meeting 15th October 2014: beginning of final edit for second substantive draft by JM and EO D 24 th November 2014: sent for wider consultation 3

4 TABLE OF CONTENTS DOCUMENT MANAGEMENT... 2 VERSION CONTROL... 3 TABLE OF CONTENTS... 4 GLOSSARY EXECUTIVE SUMMARY INTRODUCTION WHAT IS REHABILITATION? INTERNATIONAL CLASSIFICATION OF FUNCTIONING (ICF) WHAT IS SPECIALIST REHABILITATION? ICF AND SPECIALIST REHABILITATION THE REHABILITATION PRESCRIPTION LINKS WITH OTHER NATIONAL CLINICAL PROGRAMMES BACKGROUND AND MODEL OF CARE CONTEXT EPIDEMIOLOGY OF DISABILITY GUIDING POLICY DOCUMENTS IN IRELAND RATIONALE FOR THE RMP EFFECTIVENESS AND COST BENEFIT OF REHABILITATION OVERVIEW OF CURRENT SERVICE GAPS AIMS AND OBJECTIVES OF THE RMP...28 INTRODUCTION QUALITY ACCESS COST THE SCOPE OF THE RMP SUDDEN ONSET NEUROLOGICAL CONDITIONS PROGRESSIVE OR INTERMITTENT CONDITIONS LIMB ABSENCE CONDITIONS CORE VALUES AND PRINCIPLES UNDERPINNING SERVICE DELIVERY EMPOWER AND INFORM PATIENTS DEVELOP AND STREAMLINE INFRASTRUCTURE SUPPORT DEVELOPMENT OF EXPERT STAFF BEST PRACTICE IN SPECIALIST REHABILITATION GUIDELINES AND CARE PATHWAYS INTERDISCIPLINARY TEAM WORKING Case management Key worker model Self management Health promotion and prevention

5 9. EVOLUTION AND FUNCTION OF THE SERVICE SERVICE CHALLENGES FOR SPECIALIST REHABILITATION SERVICES Service configuration Population and societal factors Integration and coordination of services HSE PROSTHETICS AND ORTHOTICS REVIEW KEY FEATURES OF THE MODEL OF CARE INTRODUCTION KEY COMPONENTS OF THE RMP MODEL OF CARE ASSESSMENT AND INTERVENTION RECOMMENDATIONS MANAGED CLINICAL REHABILITATION NETWORKS (MCRN) Structure of a Managed Clinical Network...52 MCRN Governance Core Principles and elements of Managed Clinical Networks PATIENT JOURNEY THROUGH THE SERVICE ACUTE REHABILITATION POST-ACUTE SPECIALIST SERVICES COMMUNITY BASED SPECIALIST SERVICES VOLUNTARY ORGANISATIONS AND SPECIALIST REHABILITATION VOCATIONAL ASSESSMENT AND REHABILITATION SPECIALIST REHABILITATION SERVICES FOR CHILDREN NON-SPECIALIST REHABILITATION SERVICES PRIMARY CARE REQUIREMENTS FOR SERVICE DELIVERY IMPLEMENTATION OF THE NEUROREHABILITATION STRATEGY PERSONNEL AND WORKFORCE PLANNING Medical rehabilitation medicine Nursing Health & Social Care Professions TECHNOLOGY GOVERNANCE CLINICAL GOVERNANCE WITHIN THE CSPD PROGRAMME GOVERNANCE STRUCTURE EDUCATION, TRAINING AND RESEARCH PROFESSIONAL VOCATIONAL TRAINING Medical education Health and Social Care Professions Nursing education RESEARCH PROGRAMME METRICS AND EVALUATION...95 REVIEW AND EVALUATION PROCESS FOR THE PROGRAMME OUTCOME MEASURES DATA COLLECTION AND KEY PERFORMANCE INDICATORS

6 PERFORMANCE MANAGEMENT COMMUNICATIONS CONSULTATION AND INVOLVEMENT OF SERVICE USERS REVIEW EVALUATION APPENDICES CLINICAL CARE PATHWAYS Appendix 1 POLAR patient pathway Appendix 2 Spinal patient pathway Appendix 3 ABI patient pathways Appendix 4 Transition checklist (Paediatric to Adult) REFERENCES

7 GLOSSARY Acronyms ABI ANP CRT CSPD CSRS CNM CNS DRS DML DNE DoH GCS HSCPs HIQA HSE ICF ISA LHO MCRN NCPOP NDA NHO NRH PCT POLAR PTA RCS RMP RTA SRS VFM VFMPR WHO WTE Acquired Brain Injury Advanced Nurse Practitioner Community Rehabilitation Team Clinical Strategy and Programmes Division (HSE) Complex Specialist Rehabilitation Service Clinical Nurse Manager Clinical Nurse Specialist Disability Rating Scale Dublin Mid-Leinster Dublin North-East Department of Health Glasgow Coma Scale Health and Social Care Professionals Health Information and Quality Authority Health Service Executive International Classification of Function Integrated Service Area Local Health Office Managed Clinical Rehabilitation Network National Clinical Programme for Older People National Disability Authority National Hospitals Office National Rehabilitation Hospital Primary Care Team Prosthetic, Orthotic & Limb Absence Rehabilitation Post Traumatic Amnesia Rehabilitation Complexity Scale Rehabilitation Medicine Programme Road Traffic Accident Specialist Rehabilitation Service Value for Money Value for Money and Policy Review World Health Organisation Whole Time Equivalent 7

8 Terms ABI: An Acquired Brain Injury (ABI) is a term given to any injury to the brain sustained during a person s lifetime occurring as a result of traumatic brain injury, stroke, brain haemorrhage, brain tumour or infection. Crucially, each person who suffers an injury will have his or her own unique characteristics, difficulties or symptoms that can vary in severity from mild to severe. Health & Social Care Professions (H&SCPs) The HSCP Act 2005 has given statutory basis to the regulation of 12 professions listed below. Any other health and social care profession deemed appropriate by the Minister for Health may be added in the future. Clinical Biochemists Dietitians Medical Scientists Occupational Therapists Orthoptists Podiatrists Physiotherapists Psychologists Radiographers Social Care Workers Social Workers Speech and Language Therapists Managed Clinical Networks are linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a coordinated manner, unconstrained by professional and health board boundaries, to ensure equitable provision of high-quality, clinically effective services. National Policy: The National Policy and Strategy for the Provision of Neurorehabilitation Services in Ireland is an overarching Government policy for people with specialist neurorehabilitation needs. Performance Indicators are data points used to measure inputs, activities, outputs or outcomes, and are used to monitor the progress of the programme being reviewed. Voluntary Agency is an autonomous non-profit and non-statutory organisation providing a social or community service. In the context of the Programme, a voluntary agency is a specialist non-profit provider of neurological or disability services or supports. Voluntary Sector is the collective name for organisations with social, charitable or philanthropic function that are not established by statute and who do not generate profits or distribute dividends. Team-working Interdisciplinary: The interdisciplinary model uses a holistic, collaborative and patient focused approach. Effective joint goal-setting and review is the cornerstone of the IDT s process Multidisciplinary: Traditional multidisciplinary team (MDT) approaches involve professionals working independently in order to achieve discipline specific goals. Individual team members may not communicate directly with all other team members in care planning Whole-Time Equivalent is the equivalent number of combined part-time and fulltime staff resources operating on a full-time basis, e.g. two staff members both working half-time are equivalent to one whole-time post. 8

9 1. EXECUTIVE SUMMARY Since its establishment in 2010 the Rehabilitation Medicine Programme (RMP) has been concerned with shaping current and future specialist rehabilitation services for adults with disability resulting from neurological injury and limb absence across acute, post-acute and primary care settings. There is a significant body of international evidence to support the benefit and cost effectiveness of specialist rehabilitation services within a modern health service. In Ireland there are significant gaps identified within current services for neurological and limb absence specialist rehabilitation. This has resulted from chronic underinvestment in such services and the lack, until recently, of a coherent national strategy to guide the development of these services 1. i The programme s overall objective is to extend access to specialist rehabilitation services for people with acquired disability so that their ability can be maximized, dependency reduced and societal participation increased. The RMP has aligned its objectives with several other HSE Clinical Strategy and Programmes Division (CSPD) programmes including Neurology, Stroke, Older Peoples, Psychiatry and Rheumatology. Liaison with the Paediatric Programme is also underway to enable the continuance and development of specialist rehabilitation services for children. There is an overwhelming demand for specialist rehabilitation services particularly for people who have sustained severe brain injuries. Emergency trauma and medical care is now more responsive and protocolised, and more people are surviving catastrophic injuries with complex, life-changing neurological, vascular and orthopaedic sequelae. Fortunately those who are developing the framework for managing trauma in Ireland 2 have recognised the crucial role of rehabilitation services in ensuring the best functional outcome for all severely injured patient. It is vital to ensure rapid access to specialist rehabilitation in all hospitals admitting patients after major trauma and neurological injury. This involves patients having access to a centre equipped to treat patients with complex rehabilitation needs, developing regional specialist inpatient and outpatient rehabilitation units, and reconfiguring community based rehabilitation services. The desired outcomes are reduced length of stay, prevention of unnecessary re-admissions and successful, sustained discharge to home. The rehabilitation medicine programme proposes a model of care which is based primarily on national strategy and policy 3. The proposed model defines this framework and outlines how specialist rehabilitation services should be designed for the evolving care needs, across three levels of complexity, of those patients who 1 National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland (DoHC 2011) accessed 20 th November NOCA Major Trauma Audit and Governance Committee 3 Ibid 1 9

10 present with residual disability after significant injury 4. ii A hub and spoke model consisting of a national centre (National Rehabilitation Hospital) with six regional inpatient units that will be coterminous with the catchment area of the new hospital groups will provide coordinated care for patients across the levels of complexity. These units will in turn work with voluntary agencies and community rehabilitation clinicians in their recently-described local Community Health Organisations 5. The RMP is advocating a model of care where patients are managed by specialist rehabilitation clinicians who are connected and supported by the governance structures of a managed clinical rehabilitation network (MCRN). The National Rehabilitation Hospital has been the national hub for specialist rehabilitation for many years and will link formally with new rehabilitation teams in regional centres within each hospital group area. The boundaries of the new community healthcare organisations (CHOs) require further scrutiny to determine how rehabilitation voluntary agencies can continue to deliver and expand their existing services within those new structures. This model of care delivers, in line with the National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland (DoHC 2012) 6, a blueprint for future provision of specialist rehabilitation services in Ireland. The illness management models and pathways contained within the document have been developed taking note of existing best practice within Ireland and beyond after an extensive collaborative process involving interdisciplinary working groups. It is hoped that uniform standards of service delivery can be realised in due course across the national, regional and community components of the network. Development of clear referral protocols and pathways at the interface between specialist and non-specialist rehabilitation services, and community disability services will ensue. It is important that statutory and non-statutory services should work collaboratively to improve outcomes and experience for service users. Many community residential options for severely disabled people under the age of 65 do not meet their unique needs where continuing slow functional recovery is possible over several years after their injury. In this context the RMP supports development of more structured community based rehabilitation teams that could support people during gradual step-down from tertiary centres and regional units so that they can be supported in reintegrating within their local communities. The Programme is engaged in a number of important workstreams including (i) the publication of Standards and Guidelines for the Procurement of Prosthetics, Orthotics and Specialist Footwear (2012), (ii) liaison with the National Disability Unit in developing an implementation plan for the 2011 Neurorehabilitation Strategy and 4 %20in%20Ireland.pdf p.33, accessed 19 th November accessed 19th November referred to as the 2011 Neurorehabilitation Strategy in the remainder of this Model of Care 10

11 (iii) development of standards of care for specialist in-patient and community rehabilitation services. Effective and realistic goal setting, with patient and family engagement, and across the continuum of recovery and service delivery, is the cornerstone of the rehabilitation process. Ongoing education of healthcare professionals within the rehabilitation clinical community is important and, more broadly, among clinicians and voluntary agencies who interface with those specialist services. This MoC describes the generic and specialist competencies for staff working in rehabilitative care spanning acute, post-acute and community settings. 11

12 2. INTRODUCTION WHAT IS REHABILITATION? Rehabilitation is a dynamic and critical component of the therapeutic continuum and one that is essential if patients are to regain their life roles, status and quality of life after serious illness or injury. Rehabilitation can improve health outcomes, reduce costs by shortening hospital stays, reduce disability and improve quality of life 7. iii Families and carers are a vital part of the rehabilitation team and require support and services in their own right. The process is a goal directed one and involves assessment and treatment by which the individual is supported in achieving their maximum potential in all functional domains. Therefore rehabilitation resources should be provided along a continuum of care ranging from acute hospital care to rehabilitation in the community. The process of rehabilitation is defined in a number of ways. This person-centred definition is synthesised from several sources: Rehabilitation is an iterative, problem-solving process in which the person who experiences loss of function acquires the knowledge, skills and supports needed to achieve their optimal physical, psychological, social and economic status. The World Health Organisation (WHO) recommends that priority is given to ensure access, for those in need, to appropriate, timely, affordable and high-quality rehabilitation interventions consistent with the Article 26 of the UN Convention on the Rights of Persons with Disabilities 8. The service-based WHO definition can be viewed on its website 9. INTERNATIONAL CLASSIFICATION OF FUNCTIONING (ICF) The World Health Organisation (WHO) model of illness has evolved over the past thirty years (WHO-ICF 2001) 10 and charts the transmission of the impact of the disease pathology through to its effect on the person s ability to perform day to day activities and consequently their ability to participate in their societal roles. ICF belongs to the WHO family of classifications and presents taxonomies of functioning and disability associated with health conditions. 7 Cheville AJ, Basford JR. Post-acute care: reasons for its growth and a proposal for its control through the early detection, treatment and prevention of hospital-acquired disability. APMR, Vol 95, Issue 11, pp , Nov accessed 19 th November WHO definition accessed 18 th November World Health Organisation International Classification of Functioning (WHO-ICF) 2001, is a more complex version of the first edition published in

13 Health Condition (Disorder or disease) Body Functions & Structure Activity Participation Environmental factors Personal factors FIGURE 1 PROVIDES A VISUAL REPRESENTATION OF THE MODEL OF DISABILITY THAT IS THE BASIS FOR ICF ICF is so named because of its emphasis on health and functioning, rather than disability. Previously, disability began where health ended. Diagnosis alone does not predict service needs, length of hospitalization, care requirements or functional outcomes. Nor is the presence of a specific disease or disorder an accurate predictor of level of impairment or activity limitations. The ICF provides a more comprehensive model of disability than medical or social models in isolation. It recognizes that disability is an interaction between the features of the person and elements of the overall context in which the person lives.as the diagram indicates disability and functioning are viewed as outcomes of interactions between health conditions and contextual factors in the ICF framework. WHAT IS SPECIALIST REHABILITATION? Specialist rehabilitation services are required for people with more complex disabilities. A BSRM position paper in 2010 defines specialist rehabilitation (SR): SR is the total active care of patients with a disabling condition, and their families, by a multi-professional team who have undergone recognised specialist training in rehabilitation, led /supported by a consultant trained and accredited in rehabilitation medicine (RM) 11. iv Patients with complex needs typically present with a combination of medical, physical, sensory, cognitive, communicative, behavioural and social problems that 11 Turner-Stokes, L. Specialist neuro-rehabilitation services: providing for patients with complex rehabilitation needs. In: Levels of specialisation in rehabilitation services, BSRM website accessed 20th December

14 require specialist input from a wide range of rehabilitation disciplines 12 as well as specialist medical input from consultants trained in rehabilitation medicine. The three-tier model of complexity-of-need has formed the basis for the commissioning of specialist rehabilitation services in the UK since the designation of Brain Injury and Complex Rehabilitation as definition number 7 of the Specialised Services National Definition Set (SSNDS) 13. The model is derived from the Kaiser Permanente illness triangle 14 and was used extensively in the UK in the early years of implementation of the NHS Plan (2000) to convey the conceptual basis for the paradigm shift required to move chronic disease management from hospitals into primary care. 15 v FIGURE 2: LEVELS OF LONG TERM CONDITIONS MANAGEMENT (DEPARTMENT OF HEALTH ENGLAND & WALES 2002) It is a model that translates well to the Irish rehabilitation context. 12 Rehabilitation nurses, physiotherapists, occupational therapists, speech and language therapists, psychologists, dietetics, orthotics and social work 13 Archived web content on the 3 rd edition of the SSNDS 2010; accessed 20 th November ssioning/commissioningspecialisedservices/specialisedservicesdefinition/index.htm 14 DH_ Archived NHS reference to the KP Triangle accessed 21st November Wilson T, Buck D, Ham C. Rising to the challenge: will the NHS support people with long-term conditions? BMJ Mar 19, 2005; 330(7492):

15 Complexity Level 1 Tertiary, complex specialist rehabilitation services Level 2 Regional specialist rehabilitation services Level 3 Community specialist rehabilitation services FIGURE 3: COMPLEXITY LEVELS IN IRISH REHABILITATION SERVICES Tertiary, complex specialist rehabilitation services (Level 1): These are high cost / low volume services that provide for a high proportion of patients with highly complex rehabilitation needs whose needs are not fully met by their local and regional specialist services. Level 1 services provide a higher level of specialist expertise, facilities and programme intensity to meet the needs of these patients. Patients attending tertiary specialist rehabilitation services typically require intensive, coordinated interdisciplinary intervention from four or more therapy disciplines. In the ICF context, rehabilitation services provided in Level 1 facilities may focus on addressing impairment by ameliorating the symptoms of the health condition where possible and reduce their impact on activity limitations. Regional specialist rehabilitation services (Level 2): These services serve a regional-level population and are led or supported by a consultant trained and accredited in Rehabilitation Medicine working in hospital and community settings. The specialist interdisciplinary team provides advice and support for local non-specialist rehabilitation teams. Patients treated in regional rehabilitation units will typically have moderate to severe physical, cognitive and/or communication difficulties. In the ICF context rehabilitation provided by Level 2 facilities will focus on reducing the impact of impairment, with significant focus on addressing activity limitations. Community specialist rehabilitation services (Level 3): Local specialist (community based) rehabilitation teams provide general multiprofessional rehabilitation and therapy support. The type of patients who require these services (community rehabilitation teams) would typically present with more 15

16 complex needs such as cognitive, communicative, perceptual, behavioural and social difficulties requiring coordinated input of an interdisciplinary team in order to manage and treat symptoms and to coordinate multi-agency referral and on-going care. Level 3 rehabilitation programmes focus generally on addressing activity limitations and likely participation restrictions. ICF AND SPECIALIST REHABILITATION Use of the ICF paradigm allows a deeper understanding of the horizontal effects of disease on patients and their family. Factors related to the person s life and living conditions, and contextual factors related to their environment, moderate the effects of the disease to a greater or lesser extent. This complex interplay is illustrated in figure 1. Figure 2 represents the sum of clinical manifestations, interventions and outcome measures employed by clinicians in each facet of an illness. Treatment of disability, in the case of the RMP neurological, traumatic and limb absence, encompasses a wide range of interventions, at all levels of disease. Different clinicians tend to concentrate their efforts in quite specific areas of the disease process, while working in clinical interdisciplinary teams. For instance, doctors are concerned primarily, by virtue of their training and experience, with body structure and function and rarely stray into activity and participation unless specifically trained to do so. Clearly, accurate diagnosis of a condition is an absolutely crucial component of management in terms of directing appropriate therapies, elucidating the disease prognosis and informing the timelines of those interventions, for the patient, their families and their treating professionals. As regards other clinicians and their roles, nurses use their expertise across the disease process whereas many allied health professionals focus their assessments and treatments on body function and activity. This is with the notable exception of occupational therapists, who are specifically concerned with the participative consequences of their interventions. Medical social workers concentrate on modifying environmental factors that affect the person s participation in their societal roles. 16

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18 THE REHABILITATION PRESCRIPTION **TO BE COMPLETED** LINKS WITH OTHER NATIONAL CLINICAL PROGRAMMES Cross Programme collaboration with related clinical programmes 16 within the CSPD and with Primary and Social Care Divisions is central to the design and delivery of a service which delivers patient focused, evidenced based rehabilitation. NEUROLOGY The RMP has liaised formally with the Neurology Clinical Programme particularly with reference to scope and synergies between the two programmes. The role of rehabilitation medicine in the management of patients with neurological conditions is wide ranging. Both programmes are advocating for managed clinical networks with national complex specialist services, regional specialist services and community or local services. Implementation of the models of care for both programme will be reliant on the development of adequately resourced local primary care teams to support service users who may not require complex specialist services. OLDER PERSONS There are many synergies between the RMP and National Clinical Programme for Older Persons (NCPOP) which published its model of care in The NCPOP has kindly shared its template for in-hospital data collection with the RMP for adaptation and this is presented in detail in chapter 16. PAEDIATRICS While paediatric specialist rehabilitation services are outside the scope of the RMP acknowledges that an equivalent hub and spoke model is required to address the needs of disabled children. To this end, the RMP continues to engage with the development board for the new National Paediatric Hospital, the National Rehabilitation Hospital which will continue to be the tertiary centre for complex specialist paediatric rehabilitation, and the Paediatric Clinical Programme. STROKE Patients with stroke who have complex specialist rehabilitation needs are considered within scope of the RMP. Links are being forged with the national Stroke Programme, particularly in relation to their TRASNA programme (Telemedicine rapid access for Stroke and Neurological Assessment). If expanded to include rehabilitation medicine facilities this would afford patients and treating clinicians the opportunity to conduct remote OPD clinics, offer clinical opinions on acute and complex cases and conduct interdisciplinary meetings across hospital sites. The use 16 Stroke, Older People, Neurology, Paediatrics and Rheumatology 18

19 of TRASNA could also enhance links, both clinical and educational, between hospitals within each clinical network. 19

20 3. BACKGROUND AND MODEL OF CARE CONTEXT EPIDEMIOLOGY OF DISABILITY Accurate information on incidence 17 and prevalence 18 of a disease, and the numbers disabled by it, is essential in planning services particularly around workforce skill mix and numbers, and the geographical location of those services. For instance, there are more than 30,000 people living in Ireland with the effects of an acquired brain injury whereas there are fewer than 250 individuals with Motor Neurone Disease 19. In addition, not all patients are disabled by their condition at all times and accurate information indicating the numbers that are, can be difficult to ascertain. Good estimates of the numbers of individuals living with and disabled by a neurological illness are presented in the same paper extrapolated from the UK Neuro Numbers report from 2003, also from the UK Neurological Alliance 20. At any one time, 17% of the Irish population (726,000) is living with a neurological illness and 85,000 (2%) are disabled by the condition defined as needing the help of another person to perform most of their activities of daily living, including personal care, meal preparation, housework and shopping. Many factors have contributed to this substantial and enlarging number of disabled individuals: certainly, diagnostic accuracy and disease registration systems have improved however imperfect they may still appear to be. In addition, over the past 20 years, sustained improvements in retrieval and intensive care management of those who have sustained severe brain injuries have yielded a group of patients, mostly of working age, who demonstrate slow and incomplete recoveries. Improved immunological therapies and other high-cost and sophisticated remedies have ensured the survival of many patients who would in the past have succumbed to their diseases. Potentially the process of rehabilitation after such injuries and illnesses, given the degree of nervous system damage, can be of indefinite duration. In many cases, recovery results in limited functional gains both for the injured individuals and wider society, in terms of the patients ability to re-engage in their former life roles. In addition, their care needs impact hugely on the lives of their carers and families, many of whom are forced to abandon their own educational and work activities. Assessing the level of need for specialist rehabilitation services is constrained by absence of epidemiological research and the lack of a single comprehensive data source for recording and monitoring this information within the health services. This section outlines an estimate of the need based on consideration of the data sources 17 Incidence refers to the number of new cases of a disease occurring annually in a given population. 18 Prevalence refers to the total number of individuals living with a disease in a given population, at a given time. 19 Hardiman O (2010). Neurological conditions: a challenge for the Irish Health system, in Neurological Alliance of Ireland position document UK Neuro Numbers (2003), Neurological Alliance 20

21 that are available. The need for a single comprehensive database is outlined in the Model of Care in Section four of this document. It is estimated that over 700,000 people in Ireland live with a neurological condition, representing approximately 17 per cent of the total population. These conditions include acquired brain injury, epilepsy, multiple sclerosis, stroke, Parkinson s disease, dementia, and other progressive, intermittent or disabling conditions of the brain or spinal cord. Neurological conditions can impact the physical, intellectual, emotional, social and economic life of the person and their family 21. FIGURE 3: DEMAND, CAPACITY AND GAPS IN THE DELIVERY OF IN-PATIENT REHABILITATION LEVEL 1 = COMPLEX SPECIALIST; LEVEL 2= REGIONAL SPECIALIST; LEVEL 3= COMMUNITY SPECIALIST 21 The Future for Neurological Conditions in Ireland Neurological Alliance of Ireland (2010) accessed 18th November

22 Figure 3 above presents a visual summary of the estimated demand, capacity and gaps in the provision of specialist rehabilitation services in Ireland, based on consideration of the information sources outlined in this chapter. There is an approximate prevalence of 4,000 people with limb absence and prosthetic requirements in Ireland, and an incidence of 500 people with primary major limb loss. The incidence of new SCI (traumatic and non-traumatic) is estimated to be approximately 120 per annum 22. vi According to Hospital Inpatient Enquiry Scheme (HIPE) data from 2010 more than 30,000 individuals were discharged from an acute hospital in Ireland with a neurological condition or amputation. Based on international comparisons about 50% will require access to specialist rehabilitation services to reduce complications. They require assessment and triage towards appropriate services in hospital or community settings. There are significant gaps in provision of specialist rehabilitation across all levels of complexity (1-3). The estimated gap in level three services has been identified through service mapping performed for the 2011 Neurorehabilitation Strategy. With an ageing population and increased survival from acute illness and trauma the demand for specialist rehabilitation is steadily increasing. GUIDING POLICY DOCUMENTS IN IRELAND The RMP recognizes the need for a collaborative approach to service enhancement and delivery across agencies, programmes and sectors. The development of the RM model of care draws from key policy developments and reforms within the Irish health services with detailed consideration of the following: National Policy and Strategy for the Provision of Neuro-rehabilitation Services in Ireland published in This strategy outlined the significant issues in relation to services in Ireland including resource issues, fragmented service delivery and overall lack of access to specialist neurological rehabilitation for the majority of those needing it. Implementation is being led by HSE disability services Department of Health and Children s Value for Money Review of Disability Services, vii has resulted in significant restructuring of disability services following the recommendations of the review. There are also recommendations for further restructuring and policy development in the areas of reconfiguration of therapy services (recommendation 5.10), formal 22 BSRM Standards for Rehabilitation Services mapped on to the National Service Framework for Long-term Conditions, BSRM, Neurorehabilitation Strategy 24 Value for Money Review of Disability Services, Department of Health and Children, accessed 12th November

23 outcome measurement based on the assessment of person-centred plans (recommendation 6.6); establishment of a primary care network (recommendation 7.12) and cross-sectoral working (recommendation 7.17). Health (Amendment) Act ; Disability act HSE Procurement Policy 27 : this policy refers to the purchasing of supplies, works and services and is governed by core values which include; patient focus, dealing with quality suppliers who comply with all relevant legislation and government guidelines and managing risk. Considering the needs of patients requiring specialist rehabilitation and their requirements for aids/appliances/prosthetics, this policy will guide development of any national guidelines with respect to aids & appliances. National Standards for Safer Better Healthcare : by incorporating national and international best available evidence, these standards from the Health and Information Quality Agency (HIQA) promote healthcare that is up to date, effective and consistent. The standards provide a sound basis for anyone planning, funding or providing healthcare services to work towards achieving and maintaining high quality, safe and reliable care. They also determine the characteristics of high quality and safe healthcare and what patients and clinicians should expect from a well-run service. National Healthcare Charter, National Advocacy Unit, Quality and Patient Safety Directorate 29, HSE This charter, developed by service users, patient advocacy organisations and the HSE QPSD 31, is designed to involve service users in influencing the quality of healthcare in Ireland. It is used to support the implementation of the National Standards for Safer Better Healthcare. Key policies on prevention and public awareness campaigns e.g. Road safety Authority (RSA) and smoking cessation The Establishment of Hospital Groups as a transition to Independent Hospital trusts - in November 2012 the Department of Health launched the policy document Future Health: A Strategic Framework for Reform of the Health Service providing the overarching policy framework for the establishment of hospital groups. At the time of writing the six hospital Group CEOs had just been appointed accessed 19th November accessed 20th November accessed 20 th November accessed 20th November Now the Quality and Patient Safety Division 30 accessed 20 th November HSE Quality and Patient Safety Division 32 accessed 20 th November

24 HSE Chronic illness framework 2008: 33 the goal of this framework is to provide individuals, groups and carers with early diagnosis, education, optimum clinical and social care in the most appropriate setting and achieve stable control of their condition. Self-management support, avoidance of complications and improved outcomes are also addressed. HSE review of Neurology and Clinical Neurophysiology Services (Laffoy report, submitted December 2007 to the National Hospitals Office): 34 Dr Marie Laffoy carried out a strategic review of these services in 2007 and her recommendations were revisited at the request of the HSE in March 2009 by external experts Professors Charles Warlow and Jan Van Gijn. The report recommended that more resources be allocated to specialist personnel and facilities to improve access to diagnostic facilities for patients with neurological conditions accessed 20th November Report to the National Hospitals Office 2007; unpublished 24

25 4. RATIONALE FOR THE RMP EFFECTIVENESS AND COST BENEFIT OF REHABILITATION The RMP model of care will take into consideration the problems associated with current service provision and to outline solutions in line with wider reform and changes within the Irish health services. The cost saving that can be achieved requires attention when planning service development in terms of lessening the burden of need in the more highly dependent patients and Return to work/productivity for those with lower dependency. There are many difficulties in demonstrating the effectiveness of a series of interventions as diverse and all-inclusive as rehabilitation and until relatively recently, that body of evidence did not exist. There is now substantial proof that intensive rehabilitation in specialised environments, delivered by trained and committed staff, is both effective and cost-effective, in terms of reducing the burden and cost of onward care 35 viii. This has been demonstrated in a variety of settings, such as inpatient units and community teams, and in different diagnostic groups (traumatic brain injury 36 ix, stroke 37 x and multiple sclerosis 38 xi ). A recent study 39, xii examined spending in health services across Europe during recessionary times to determine its affordability. The study evaluated the economic effects of alternative types of government spending by estimating fiscal multipliers (the return on investment for each $1 dollar of government spending). A multiplier greater than 1 corresponds to a positive growth stimulus (returning more than $1 for each dollar invested). The fiscal multiplier for investment in health was determined as being 4.3 ( ). These findings could have important implications for policy as they suggest that investment in health, and this case, rehabilitation contribute to economic health in the long term by creating a healthier labour force. In the RCP / BSRM document Medical Rehabilitation in 2011 and beyond 40, xiii evidence is presented from randomised and unrandomised intervention trials for sudden onset neurological conditions, progressive or intermittent neurological conditions, and limb absence. The balance between benefits and risks, judged at the level of the individual and society, is assessed and recommendations are formulated 35 Turner-Stokes L (2004). The evidence for the cost-effectiveness of rehabilitation following acquired brain injury Clinical Medicine; 4[1]: Powell J, Heslin J, Greenwood R (2002) Community based rehabilitation after severe traumatic brain injury: a randomised controlled trial. JNNP 72: Patel A, Knapp M, Perez et al (2004). Cost-effectiveness and cost-utility analyses from a prospective randomized controlled trial Stroke 35: Thompson AJ (2000). The effectiveness of neurological rehabilitation in multiple sclerosis J Rehabil Res Devel; 37[4]: Reeves A, Basu S et al; Does investment in the health sector promote or inhibit economic growth? Globalization and health 2013, 9:43 doi: / accessed 15th October Medical Rehabilitation in 2011 and beyond; Report of a joint working party of the Royal College of Physicians and the British Society of Rehabilitation Medicine,

26 for clinical practice based on the balance between desirable and undesirable effects of an intervention. The economic benefits and cost-effectiveness of rehabilitation are evident from a small group of studies from the UK and US. One such example is a 6 year cohort 41 xiv study of patients with acquired brain injury admitted to a tertiary referral centre. All patients in each of the 3 graded categories of dependency (using the RCS) 42 showed significant reduction in dependency and on-going care costs. The main reduction in weekly cost of care was greatest in the high dependency group (at 639 per week); reduced mean costs for the medium-dependency group was about half this amount ( 323 per week), and about 111 per week for the low dependency group. Despite their longer length of stay and higher treatment costs the time taken to offset the initial cost of rehabilitation was only 16.3 months in the higher dependency group. Rehabilitation services have the opportunity to reshape service delivery and work more collaboratively with health care providers across the continuum. Through the development and implementation of this model of care, founded on good practice and innovation, rehabilitation services have the opportunity to improve service efficiencies and patient outcomes. OVERVIEW OF CURRENT SERVICE GAPS The key gaps and problems in relation to the provision of supports have been described in detail, most recently in the 2011 Neurorehabilitation Strategy. Similar deficits have been highlighted in POLAR services in the 2012 HSE Prosthetics and Orthotics review, considered in chapter 9. They can be summarized as: I. An extensive shortage of key specialists involved in the provision of neurological rehabilitation services including: Consultants in Rehabilitation Medicine Medical social workers, occupational therapists, speech and language therapists and physiotherapists, Neuropsychologists Specialist nursing staff i.e. clinical nurse specialists and advanced nurse practitioners II. Lack of appropriate community rehabilitation inpatient rehabilitation beds which means inappropriate use of acute hospital beds appropriate post-acute rehabilitation facilities for people discharged from hospital based specialist rehabilitation services sufficient data to facilitate adequate planning of needs and services rehabilitation services in many residential facilities and nursing homes 41 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 2006 JNNP; 77(5): Rehabilitation Complexity Scale: low 0 7; medium 8 11, high

27 Currently there are no pathways that signpost appropriate services, and referral and transition processes. Rehabilitation services within the community are often offered to patients with specific conditions rather than on the basis of need. Mapping and gapping in the 2011 Neurorehabilitation Strategy documented patchy access for patients to certain services determined by historical availability of that service in their area rather than the patients clinical need for that service. Lengthy delays in effecting necessary house adaptations and inadequate provision of essential aids, appliances and assistive technology present challenges to the effective provision of rehabilitation services. Solutions for these areas of need are outside of the scope of the RMP. 27

28 5. AIMS AND OBJECTIVES OF THE RMP INTRODUCTION The overarching aim of the RMP is to maximize ability and reduce disability by increasing access to specialist rehabilitation services. The RMP s objectives have been developed over the past 4 years and reflect the expressed aspirations and needs of current and former service users, and rehabilitation clinicians. QUALITY Reduction of inappropriate patient discharges to nursing homes Ensure provision of rehabilitation in the most appropriate care setting to meet patient needs Ensure provision of specialist rehabilitation provided by interdisciplinary teams Monitor and work towards reduction in adverse events such as transfer to the acute hospital, and falls Enable earlier transfer of care between rehabilitation settings i.e. acute to tertiary, tertiary to regional, regional to community Ensure equitable access to specialist rehabilitation services regardless of geography Work towards introduction of nationally agreed, defined and tracked outcome measures for specialist rehabilitation services ACCESS 80% access to early Specialist Rehabilitation assessment within 2 weeks of referral 80% access to admission to specialist inpatient rehabilitation beds within 60 days Reduction in the number of patients waiting to access complex specialist rehabilitation by 20% (through the introduction of appropriately resources regional rehabilitation units Reduction in delayed discharges from complex specialist rehabilitation to 8% COST Reduced length of stay (LOS) in acute hospitals by 5 days 28

29 Reduced length of stay (LOS) in complex specialist rehabilitation hospital beds by 5 days Reduction in the days lost to delayed discharge in specialist rehabilitation services 10% reduction in readmission and attendance at ED rate (readmission based on primary condition for which specialist rehabilitation services were required) Reduction in inappropriate discharge destinations Further narrative required 29

30 6. THE SCOPE OF THE RMP The RMP is concerned with the development of a framework for the delivery of specialist rehabilitation services for adult service users (over the age of 18) based on need rather than diagnosis. When considering patient and service needs it is helpful to consider disease characteristics in several dimensions. The longitudinal effect of disease over time, also referred to as the disease trajectory, varies considerably among injuries. Serious single injuries or illnesses and progressive neurological diseases will affect the individual, or their family, in one way or another for the rest of their life 43. Musculoskeletal conditions are not included within the scope of the RMP as the rehabilitation needs of this cohort of patients is managed through the musculoskeletal physiotherapy initiative which is a joint initiative of the Orthopaedic and Rheumatology National Clinical Programmes. SUDDEN ONSET NEUROLOGICAL CONDITIONS Under the remit of rehabilitation medicine four categories of conditions, adapted from UK NSF classification of long-term conditions 44 and excluding musculoskeletal conditions, are summarised in Table 1. Conditions Sudden onset conditions Intermittent conditions Progressive conditions Stable conditions Example Brain injury, spinal cord injury, limb absence Relapsing remitting Multiple sclerosis (MS) Parkinson s disease, secondary progressive MS Cerebral palsy, post-polio syndrome TABLE 1: TAXONOMY OF NEUROLOGICAL CONDITIONS The majority of the studies examining sudden onset conditions have been conducted in patients with acquired brain injury (ABI), predominantly stroke, and spinal cord injury (SCI). The strongest recommendations are for: Early intensive rehabilitation starting soon after onset of the medical condition Specialist programmes for all those with complex needs Specialist vocational programmes for those with potential to return to work As an example, recently in the NRH, an Early Access Rehabilitation Unit (EARU) was developed with monies from the 2012 DoH Frail Elderly Initiative (FEI). The aim of is unit is to offer early access to rehabilitation for patients with recent onset neurological injury of low to moderate dependency National Service Framework for Long Term Conditions, March 2005, chapter 1, para National Service Framework for long term conditions ng-termneurologicalconditionsnsf/dh_ accessed 20th November Internal communication, NRH Brain Injury Programme 30

31 The average length of stay in 2012 for patients admitted to the NRH s Brain Injury Programme was 68 days. The average LOS for patients in the EARU in 2013 was 34 days. 90% of patients were admitted to the EARU from acute hospitals, and 97% were discharged home. The average waiting time from referral to admission to this unit for 2013 was 13 days. ( would benefit from presentation in tabular form) This initiative has demonstrated efficiencies in use of bed days both at acute hospital level and indeed rehabilitation hospital without compromising quality or patient outcomes 46. PROGRESSIVE OR INTERMITTENT CONDITIONS The largest body of evidence for rehabilitation in progressive or intermittent conditions is observed in multiple sclerosis patients 47. The strongest recommendations are for Short term intensive inpatient rehabilitation programmes and Lower-intensity community-based programmes conducted over a longer period. Treatment by community based multidisciplinary teams can be cost saving. A review of effectiveness of one such community team 48 demonstrated that savings arising from reduced hospital bed usage and reduced out-patient visits with MDT involvement was equivalent to the cost of the team itself thereby rendering the team s work cost neutral. There is strong evidence from Cochrane and other systematic reviews that multidisciplinary rehabilitation can improve the experience of living with a long term neurological condition, both at the level of functional activity and societal participation 49 xv. LIMB ABSENCE CONDITIONS Patients with lower limb amputation account for 92% of those who undergo amputation. Those with upper limb amputations are a much smaller population and account for 5% of those with limb loss. People with congenital limb absence are the smallest group representing just over 2%. 46 Commentary required on process changes that have led to this reduction in LOS 47 Thompson AJ (2000). The effectiveness of neurological rehabilitation in multiple sclerosis J Rehabil Res Devel; 37[4]: Ward et al, Khan F, Turner Stokes L, Ng L, Kilpatrick T, Multidisciplinary rehabilitation for adults with multiple sclerosis Cochrane Database of Systemic reviews Apr 18 (2):CD

32 Epidemiology Lower limb amputation Upper limb amputation Congenital limb absence FIG 1 50 xvi AMPUTEE AND PROSTHETIC NUMBERS FROM BSRM It is recommended that Rehabilitation Services for those with limb loss should remain a specialist rehabilitation service (defined as interdisciplinary service having input from a consultant in rehabilitation medicine). While there is limited supporting evidence with respect to best practice in the area of limb absence rehabilitation expert opinion recommends: the development of hub and spoke models of service delivery, where groups of services (centres) establish formal affiliations with focused clinical leadership and further specialism coming from one tertiary referral centre. 51 Tertiary centre referral is indicated for upper limb, congenital and multiple limb loss conditions. Regional specialist centres can assess and treat lower limb amputees, non-complex upper limb amputees and some patients with congenital limb loss depending on local team expertise. Patients with complex presentations whose conditions are stable can also be treated in regional specialist rehabilitation centres. Specialist rehabilitation teams should include: (Table 2) Consultant in Rehabilitation Medicine Prosthetist Physiotherapist Occupational therapist Podiatrist Clinical Nurse Specialist and RGN Clinical psychologist Counselling services Medical Social Worker Dietitian 50 BSRM Amputee Rehabilitation: Recommended Standards & Guidelines, October from 2003; accessed 19th November

33 Prosthetic Rehabilitation enables patients to achieve maximum functional independence, taking into account their pre-amputation lifestyle, expectations and limitations. Amputee rehabilitation is multi-professional and interdisciplinary involving surgeons, rehabilitation staff as in table 2 and clinicians in community services. Units providing prosthetic rehabilitation should have access to a prosthetic workshop with facilities for the adjustment, repair and assembly of prostheses. Manufacture of prostheses can be located elsewhere assuming providers meet national standards. Three large studies to date that describe consistent patterns of improved survival, function and use of prosthesis, discharge to home, reduced redo or additional amputations and a reduction in co-morbidities. Chronological age appears not to be a barrier to using prostheses. The BSRM conclude that there is an active need for research into both high-tech developments as well as low-tech service changes, which apply to POLAR services. (refs required) The model of care is not prescriptive in terms of work practices but allows for guiding principles and standards of care to be developed nationally in a coordinated and consistent way. The model also allows flexibility in designing practices that meet local needs leaving room for innovation in service delivery. 33

34 7. CORE VALUES AND PRINCIPLES UNDERPINNING SERVICE DELIVERY Develop & Streamline Infrastructure Empower & Inform Patients Support Development of Expert Staff Core Values FIGURE 1: CORE VALUES UNDERPINNING SERVICE DELIVERY FOR THE RMP EMPOWER AND INFORM PATIENTS INTRODUCTION Many specialties within healthcare are organised to respond and treat acute illness, and are facing challenges in accommodating the care and treatment required to manage chronic disease. Chronic diseases are now the biggest cause of death and disability worldwide causing a fundamental shift in health systems and health care and, as a consequence, in roles and responsibilities of patients. 52 The practice of rehabilitation is innately patient centred. The International Association Patient Organisations (IAPO) Declaration on Patient-Centred Healthcare 53 outlines five key principles against which models of care can be measured to determine the degree to which they are patient-centred. The RMP s culture accepts that rehabilitation services and individual rehabilitative interventions are built on these principles. These are: 52 Patient Empowerment Living with Chronic Disease; the European Network on Patient Empowerment; Website accessed 1 st November accessed 15 th October

35 Respect Information Personcentred care Patient Involvement in Health Policy Access and Support FIGURE 2: Choice and Empowerment FIVE PRINCIPLES OF PATIENT-CENTREDNESS CENTREDNESS e, the rehabilitation cycle guides clinicians in this regard i.e. In clinical practice, Initial assessment Goal setting in collaboration with the patient Treatment plan Intervention Regular review of goals (evaluation) (evaluation Incorporating rporating the International Classification of Functioning Fun guides interventions as it requires consideration of the patients health and wellbeing and limits scope for clinicians to look only at impairment/disease in isolation. The RMP acknowledges the importance importance of communication between service providers and patients. ents. Patients Patient need to have easy and customized access to the most relevant and up-to-date date information to allow them to be active participants in their own health care management. management INFORMATION PROVISION The 2011 Neurorehabilitation Strategy s consultation exercise made frequent reference to the need for clear information for patients and families at each stage of the rehabilitation process in a clear format.. Levels of anxiety among family members and d cognitive issues among patients mean that information provided at one stage of the rehabilitation process will need to be repeated at further stages. The programme s information strategy strateg across all care settings will focus on: 35

36 Provision of accurate and accessible quality information to patients and families across each care setting Provision of information in a manner in which the patient and family are given the time to ask any questions and request any clarity Provision of information on the relevant patient support group or organization at the earliest stages Provision of information at frequent periods during the rehabilitation process DEVELOP AND STREAMLINE INFRASTRUCTURE The RMP wishes to propose development of a flexible service that facilitates seamless transitions across all levels of specialism and encourages joint working as a core value. Rehabilitation services should consist of an interdisciplinary team of people who: Work together towards common goals for each patient Involve and educate the patient and family Have relevant knowledge and skills Have competencies required to support their patients in terms of their rehabilitation goals There are a number of key principles that should underpin infrastructure development. Specialist services should: Be person and carer-centred Allow direct access where appropriate Be close to the individual s home environment when appropriate Develop interdisciplinary, multi-agency teams working together Have clear, transparent and mutually understood indicators for determining appropriate transition between levels of specialism Provide equitable access for all patients in need of those services Measure effectiveness and efficiency, in terms of cost and patient outcomes Demonstrate evidence of continuous quality improvement Record and monitor patient / service user satisfaction which is used in the generation of their quality improvement plans (QIPs) SUPPORT DEVELOPMENT OF EXPERT STAFF The expertise of staff delivering specialist rehabilitation service is central to the provision of effective rehabilitation services and education of patients and family. Maintaining and developing the expertise of staff across all sectors delivering rehabilitation services is essential to achieving the aims and objectives of the RMP. The RMP places emphasis on education and support of expert staff, and sub groups in the proposed managed clinical networks that focus on both education and clinical standards will play an integral role in developing rehabilitation specific competencies. 36

37 The National Rehabilitation Hospital, the identified national tertiary centre, has specific responsibilities related to education and training and will be supported by the RMP in fulfilling its role as the The RMP also acknowledges the scope for further development of clinical specialist roles with respect to nursing and HSCPs. Maintenance of CPD, membership of national discipline bodies as appropriate and further development of interdisciplinary team working across organisations is also considered essential in ensuring an expert workforce in rehabilitation. Not only will it support the seamless transition of patients between services, it will ensure that interventions are based on current evidence/research based practice. 37

38 8. BEST PRACTICE IN SPECIALIST REHABILITATION GUIDELINES AND CARE PATHWAYS The RMP has a role in identifying and supporting best practice in the development and execution of the rehabilitation process. The programme is undertaking the development of national standards for the provision of rehabilitation services in which the patient is central to the rehabilitation process including: Service provision Referral management Assessment of patient need Goal setting Treatment programmes Family/carer liaison Discharge planning Service Improvement Staffing Consensus standards for the provision of in-patient and community rehabilitation 54, rehabilitation after traumatic brain injury 55 xvii and organisation of stroke services and clinical management of stroke 56 xviii have been in routine use across all areas of the UK (Scotland 57 xix, Northern Ireland 58 xx ) for much of the last decade. They contain evidenced-based recommendations regarding the organization of the services, minimum staffing levels and skill mix, process of clinical interdisciplinary work such as referral and discharge processes, and minimum weekly therapy interventions. More recently, health departments in the devolved territories of Wales and Northern Ireland have commissioned external reviews of their neurosciences 59 xxi and brain injury rehabilitation 60 xxii services respectively. Clinical guidance is becoming more specific and explicit with clear and all-inclusive algorithms available at the touch of a mouse to ensure logical and comprehensive management of patients throughout the course of their illness. Examples include the 54 BSRM (2002) 55 RCP (2003) Rehabilitation after traumatic brain injury: National Clinical Guidelines. Royal College of Physicians 56 RCP National Clinical Guidelines for Stroke, 4 th Ed. (2012); accessed 18 th November SIGN Management of patients with stroke. Health Improvement Scotland, October accessed 18 th November Improving stroke services in Northern Ireland, July 2008; accessed 18 th November Report of the Welsh Neuroscience External Expert Review Group; September Review of services for people with acquired traumatic brain injury in Northern Ireland accessed 19 th Nov

39 61 xxiii, 62 Scottish and Multiple Sclerosis Society care pathways for multiple sclerosis xxiv the excellent management handbook from the UK Parkinson s Disease Society 63 xxv and NHS Scotland National Patient Pathways 64. The universal accessibility of these documents on the internet ensures that patients can inform themselves fully about the minimum standards of care that they should expect to receive. INTERDISCIPLINARY TEAM WORKING The complex needs and challenges of enabling an individual to achieve their rehabilitation potential require the involvement of many professionals from a variety of disciplines. The interdisciplinary team (IDT) model of care is widely recognised as the gold standard in the coordinated care process of rehabilitation provision. The interdisciplinary model uses a holistic, collaborative and patient focused approach. Traditional multidisciplinary team (MDT) approaches involve professionals working independently in order to achieve discipline specific goals. Individual team members may not communicate directly with all other team members in care planning. Members working independently often lack a common understanding of issues that could influence interventions 65 xxvi. The key factors distinguishing the IDT model from the MDT model is that the team members work together closely in goal setting, treatment, decision making and ongoing problem solving to ensure continuity of care and a more holistic approach 66 xxvii. From the time of admission, and in some cases from the time of referral, to the point of discharge the patient, family and the team are working on mutually agreed goals to achieve the optimum outcome. There is good evidence that IDT working creates efficiencies for healthcare services. IDT collaboration improves patient compliance, improves patient satisfaction, reduces costs, lowers mortality, reduces length of stay and increases team members satisfaction 67 xxviii. It appears that the value added element of the interdisciplinary model is in the IDT use of combined skills to meet the complex rehabilitative needs of patients, to ensure optimal outcomes at the lowest cost in the 61 Pathways for Health: multiple sclerosis commissioning pathway; AFAFB0791BD&d_name=&o_mode=0 accessed 19 th November Pathway for managing relapses in multiple sclerosis 2005; NHS Scotland, National Patient Pathways accessed 19 th November Pathways: a paradigm for disease management in Parkinson s Disease MacMahon DG et al accessed 19 Nov Pathway for managing Parkinson s Disease; NHS Scotland, National Patient Pathways Sheenan D, Robertson L, Ormond T. Comparison of language used and patterns of communication interprofessional and multi-disciplinary teams. Journal of Interprofessional care, 2007, 21(1), Albrecht G, Higginbotham N, Freeman S (2001). Transdisciplinary thinking in health and social science research: definitions, rationale, and procedure. Health Social Science: A Transdisciplinary and Complexity perspective, 4, Rubenfeld GM, Scheffer BK (2010); Critical thinking tactics; Sadbury MA in Jones and Barlett Learning 39

40 shortest length of stay 68 xxix. An effective IDT approach should have more impact than the sum of its members working individually. Working within an IDT requires commitment from all members. Collaborative team work and discussion require communication and negotiation skills, demonstration of respect for all team members with a willingness to put aside views of differing status of members and a readiness to blur professional boundaries. CASE MANAGEMENT The rehabilitation process supports and enables a person to access life in the mainstream of society in a way that is in keeping with their goals and their abilities. There is a clear requirement for a coordinated approach to the provision of rehabilitation services to those with complex care needs. Intensive, ongoing and personalised case management can improve quality of life and outcomes for individuals with complex or ongoing needs and those who care for them. This can reduce emergency admissions and enable patients who are admitted 69 xxx to return home more quickly with a coordinated support package The model of care for the RMP outlines a seamless transition between different care settings and effective management of the needs of the service user along the service continuum. It is unlikely that one agency will be in a position to offer all the inputs required by an individual and thus interagency co-operation is an essential element of effective rehabilitation provision. For this to happen in practice it is important that overall responsibility for monitoring and responding to the needs of the service user be assigned to one individual preferably working in a community setting and with a level of training and expertise to enable them to link with a range of health and wider support services. It is in this context that case management has emerged as a strategy in the rehabilitation process. The ICF model contextualizes the importance of environmental factors in expression of disability. Environmental factors can include the built environment, social attitudes and the availability of services. These factors can have a significant impact in the extent to which negative or positive outcomes are achieved. In this context the role of the case manager can be described as the person who engages with the person served at all stages of the rehabilitation process. The case manager assists the person in coordinating appropriate environmental interventions and supports in an attempt to improve activity levels or minimise participation restrictions. Implementation of case management will require further consultation to define and elaborate this role in the context of the delivery of specialist rehabilitation services. 68 Behm J, Gray N (2011) Interdisciplinary Rehabilitation Team; In Jones and Barlett Learning LLC 69 Scottish Executive, Feb 2007; Coordinated, integrated and fit for purpose A delivery Framework for adult rehabilitation in Scotland 40

41 KEY WORKER MODEL A key worker is typically a member of the interdisciplinary team involved in the care of the individual who adopts an additional role. The role involves acting as a point of contact for the family, ensuring effective communication and coordinating the exchange of information between the family and team. The RMP recommends the adoption of a key worker system in each of the individual care settings for the delivery of specialist rehabilitation services. SELF MANAGEMENT A key aim of rehabilitation is to equip individuals and those who care for them with the skills, knowledge and support to self-manage in a way that enables them to participate fully in their communities with timely access to appropriate professional intervention when required. Self-management support (SMS) is a person-centred approach which enables individuals and their carers to take an active role in caring for and managing their own condition with professional guidance when required. Self-management support may be viewed in two-ways: as a portfolio of tools and techniques which includes the provision of information, education and other supportive interventions to increase the person s knowledge, skills and confidence in managing their condition As a fundamental transformation of the traditional patient- health professional /caregiver relationship into a collaborative ongoing partnership, that includes care-planning, goal-setting and problem solving strategies 70. In summary, self-management support should allow individuals with chronic conditions to access the information and skills they need to manage their own condition confidently and to make daily decisions which improve their health and well-being and improve clinical, emotional and social outcomes. In terms of neurological conditions/neuro rehabilitation, the most recent systematic review 71, xxxi of research in this area concludes that self-management strategies are applicable to neurological disease. The review found evidence of a significant effect of a number of individual condition-specific self-management programmes for multiple sclerosis, Parkinson s disease and traumatic brain injury. The RMP recognises the implications of the Population Risk Pyramid Model below that only a proportion of people with chronic conditions will be able to self-manage their health condition(s), supported by their family and carers and a range of healthcare and other community-based services (last accessed in September 2012) 71 Rae-Grant AD et al. Self-management in neurological disorders: systematic review of the literature, J Rehabil Res Dev 2011;48(9): A guide to developing local strategies and good practice. Department of Health UK h/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_ pdf accessed 19 Nov 41

42 FIGURE 11: POPULATION MODEL 73 Therefore the RMP proposes that interventions aimed at promoting self-care be tailored taking into consideration factors such as the stage of recovery, the level of need and the preferences of the patient and their family. Provision of selfmanagement support is envisaged in each of the care settings. HEALTH PROMOTION AND PREVENTION The traditional healthcare continuum is predicated on the fact that there is an underlying illness, injury or disease and is relatively ineffective for those who desire to prevent health adversity or self-manage their chronic condition. Health promotion and prevention did not feature in the traditional healthcare continuum of care until recently. Likewise, health promotion and prevention strategies have rarely been incorporated into neurological and limb absence rehabilitative management. The traditional continuum of care is a system that guides and tracks patients over time through a comprehensive array of health services spanning all levels of care intensity across 3 categories: 73 Improving the Health and Wellbeing of People with Long Term Conditions in Scotland: A National Action Plan, Dec

43 FIGURE 9 TRADITIONAL HEALTH CARE CONTINUUM FIGURE 10 PROPOSED NEW MODEL OF CONTINUUM OF HEALTH CARE Health promotion and preventive strategies have an important role to play in the primary and secondary prevention of some conditions requiring rehabilitation. The enduring nature of many of the complex conditions requiring neurological and limb absence rehabilitation creates significant challenges for those with the condition, their families and carers, and for health service provision. Where conditions are preventable every involved clinician should strive to achieve the highest level of prevention. All services have a responsibility for health promotion and prevention. Primary care services are the first and ongoing points of contact for the majority of health service users so a significant proportion of health promotion will reside at this level. The local 43

44 basis of primary care services should ideally facilitate the delivery of national health promotion and preventative initiatives and campaigns and though raising awareness in schools, workplaces, accessible local community, leisure and primary care centres. Through the MCRN (chap 10) education events and programmes for clinicians will ensure dissemination of best practice in health promotion. PRIMARY PREVENTION STRATEGIES INCLUDE: High-quality antenatal, obstetrics and paediatric care to reduce risk factors for cerebral palsy, including prematurity, very low birth weight and infection Injury prevention in relation to road safety and occupational health to reduce the risk of acquired brain injury and spinal cord injury - obvious examples are cyclists wearing helmets and car drivers using seatbelts 74 Promotion of a healthy lifestyle, management of atrial fibrillation and hypertension to reduce the risk of stroke 75 xxxii Preventing falls in the elderly Early response to transient ischaemic attack SECONDARY PREVENTION STRATEGIES INCLUDE: Access to acute specialised neurological or neurosurgical care or advice when needed to prevent irreversible brain injury Early access to specialised rehabilitation services to avoid the development of secondary complications Various Government strategies make recommendations on some of these areas, such as the current Road Safety Strategy the HSE Falls Prevention Strategy and the National 76 xxxiii Cardiovascular Health Strategy Recommendations in the World Health Report on Child Injury Prevention are also relevant (Irish) Road Safety Strategy : Closing the Gap, Department of Transport; accessed 18 Nov Strategy to prevent falls and fractures in Ireland s Aging population, Report of the National Working Group on the Prevention of Falls in Older People and the Prevention and management of osteoporosis throughout life, Changing Cardiovascular Health, The National Cardiovascular Health Policy , DOH&C, World Health Report on Child Injury Prevention, WHO and UNICEF

45 9. EVOLUTION AND FUNCTION OF THE SERVICE SERVICE CHALLENGES FOR SPECIALIST REHABILITATION SERVICES Current rehabilitation services are provided across a range of settings, by different organisations and by many health professions and carers. Services are often selfagencies, professions and service settings without an overall governing system which identifies service gaps and priorities at a national level. determined by This self-determination n and uncoordinated approach presents challenges in accessing reliable data about provision of services and numbers of people availing of such services across the country. Currently, there is only one national service offering level 1 complex specialist rehabilitation. In the absence of national specifications for specialist community rehabilitation, service agreements between the HSE and voluntary service providers (VSPs) depend largely on the strength of business cases and competencies of those VSPs. This leads to an observed inequity in access to community rehabilitation. Future service development should be developed based on a model that outlines a clear continuum of services with clear points of transition between services. The rehabilitation medicine model of care aims to outline and describe such a service based on best evidence, with particular focus on specialist rehabilitation services level 1, level 2 and level 3 (chapter 2). Complexity Tertiary Specialist Rehabilitation Services Patients with severe physical, cognitive, communication difficulties or challenging behaviours with highly complex rehabilitation needs. Team supported by Consultant in Rehabilitation Medicine Level 1 Level 2 Regional Specialist Rehabilitation Services patients with a range of complexity and complex rehabilitation needs Team supported by Consultant in Rehabilitation Medicine Patients with more complex needs than can be supported by generic rehabilitation team Complex needs including cognitive, communicative, perceptual and social difficulties Multidisciplinary team with input from Consultant in Rehabilitation Medicine Level 3 45

46 In addition specialist rehabilitation services need to address a number of factors in the healthcare environment and the wider society that place a greater demand on services and long term care: SERVICE CONFIGURATION There is clear international evidence that effective rehabilitation can only be achieved with appropriate resourcing as discussed and evidenced in chapters 2, 3, 4 and 8. Resourcing these services in a climate of recession and reduced health spend is a significant challenge. Higher intensity therapy improves both patient outcomes and service efficiency. Ireland lags well behind most other countries on this issue. For example, in the US, it is mandatory to provide three hours of therapy per day for at least five days per week in an in-patient rehabilitation setting. (ref required) Early referral to rehabilitation medicine has been shown to reduce disability; however there is presently limited access to acute rehabilitation medicine assessment. A lack of rehabilitation bed capacity results in inappropriate usage of acute care beds and delays in discharge from acute care. (ref required) Strategic, coherent evidence-based planning around capacity, needs and resourcing at appropriate levels of care is vital if people requiring services are to move in and out of the continuum without experiencing undue delays and without the system itself becoming blocked at different levels. Absence of data regarding incidence and anticipated care needs presents a major challenge in assuring appropriate planning. POPULATION AND SOCIETAL FACTORS Advances in medicine and related fields mean that there are more people surviving acute injury with greater levels of disability. Changing family structures and patterns result in clinicians being unable to assume existence of family support structures for disabled people. Those who are most severely disabled, even after a period of intensive rehabilitation, are susceptible to medical co-morbidities related to immobility, including decubitus ulcers, infections, contractures and venous thromboembolism. They and their families need support from professionals across all 3 levels of service delivery to manage and minimize the psychological, social and economic consequences of their disability. INTEGRATION AND COORDINATION OF SERVICES Neurological and limb absence specialist rehabilitation encompasses a range of diverse conditions and settings. The interface between disability management and specialist rehabilitation requires agreed guidelines and protocols regarding access and pathways of care. 46

47 The interface across services for children, adult and older people presents a particular challenge and requires collaborative approaches to care. For instance, in Ireland currently due to an under-resourced service, there are substantial difficulties for service users accessing specialist rehabilitation medicine services after discharge from their formal in-patient rehabilitation if their condition deteriorates or changes. HSE PROSTHETICS AND ORTHOTICS REVIEW 2012 A recent HSE review of prosthetic and orthotic services 78 made specific recommendations regarding best practice. The recommendations include: Development of clear clinical pathways for the care of patients who need to avail of these services. In line with the policy in most other countries, it is recommended that this service should be provided as close as possible to the patient s home. The expertise of healthcare professionals who have received the necessary training in providing this service should always be involved in the care pathway for this patient population In the case of Prosthetic services, it is recommended that primary and complex cases must be referred to a Consultant in Rehabilitation Medicine for assessment prior to a prosthetic device being prescribed for that patient In the case of orthotic services, it is recommended that complex cases should be referred to a Specialist Multidisciplinary team which should include appropriate consultant care. Where third party suppliers are involved in the care of these patients, these suppliers must have demonstrated compliance with appropriate HSE National Standards (under development) and these supply arrangements must comply with EU and National Procurement Regulations and the HSE s requirements for value for money, transparency and management of risk. (more narrative on implementation plans needed) 78 Prosthetic & Orthotics and Specialised footwear supply project, HSE, Dec 2012; awaiting release for consultation 47

48 10. KEY FEATURES OF THE MODEL OF CARE INTRODUCTION The RMP Model of Care shares a common purpose with the framework outlined in the 2011 Neurorehabilitation Strategy. The model and terminology is adopted from other published rehabilitation models of care and adapted to the Irish context. The model outlines specialist rehabilitation services allowing service users access to appropriate services in a fully integrated manner and includes all the components of the continuum of services delivered in a comprehensive coordinated system of care. Fundamental to the development of specialist rehabilitation services is the appreciation that different service users need different input and different levels of expertise and specialisation at different stages in their rehabilitation journey. The critical point of this model is that, although service users may need to access different services as they progress, the transition between services should be facilitated by appropriate communication and sharing of information between services so that they progress in a seamless continuum of care. FIGURE 6: REHABILITATION MEDICINE MODEL OF CARE *Rehabilitation phase 48

49 KEY COMPONENTS OF THE RMP MODEL OF CARE Key aspects that are integral to the delivery of specialist rehabilitation services are summarized below: Patient / service user Clinicians Infrastructure Health Promotion and Prevention Self-Management Information Provision Key worker & case manager models Education and training Research Rehabilitation Database Use of Technology National, regional and community units with Vocational Rehabilitation Appropriate workforce planning 1. *Interdisciplinary approach with standardised assessment procedures in-patient out-patient informal meeting (families and voluntary organisations) staff development facilities 2. **Managed Clinical Rehabilitation Networks In this chapter the concept of managed clinical networks is explicated along with a presentation of referral and intervention key performance indicators. ASSESSMENT AND INTERVENTION RECOMMENDATIONS REFERRAL Early referral, after initial medical stability, is required to minimise complications of neurological injury and immobility 79. For example, in a major trauma unit, it is recommended that the patient is referred to the Rehabilitation Consultant within 48 hours. Within regional hospitals the longest wait to assessment is extended to 7 days. This is based on the understanding that most patients with more complex needs are treated in tertiary centres after initial triage. Rehabilitation teams will be required to establish strong links with acute hospitals within their regions and develop responsive referral protocols. REHABILITATION ASSESSMENT 79 Early referral is recommended in all instances on the basis of evidence already presented, and international best practice related to improved patient outcomes. 49

50 Standardized assessment by senior rehabilitation IDT members will be carried out using a rehabilitation prescription template and within agreed timescales The assessment will be holistic covering physical, cognitive, psychological & social domains of function Goal setting will be patient centred The assessment will generate a plan of care REHABILITATION PRESCRIPTION (chapter 2) Assessing clinicians will continuously collaborate and communicate with the patient and those who care for them STANDARDS / PARAMETERS FOR CLINICAL DECISION-MAKING DURING REHABILITATION ASSESSMENT Guidelines are required for clinicians who are not rehabilitation specialists, and patients, to explain what it means to be ready for rehabilitation. These guidelines may differ somewhat dependent on the care setting and individual patients but should reflect or establish: The benefit of continuing review by the specialist rehabilitation team, particularly in relation to prevention of complications The characteristics of medical stability (for post-acute rehabilitation) Patient s ability to participate in rehabilitation (daily duration / intensity and nature) Triage/preadmission assessment by Rehabilitation Clinician to determine whether patients needs can be best met in setting. This will ensure patients receive rehabilitation services in the most appropriate setting Active waiting list management systems that ensure equitable, transparent access to rehabilitation facilities/services. In this regard, the RMP refers readers to the National Waiting List Management Policy Standards for effective communication with all relevant stakeholders i.e. patient/family/referrer SERVICE DELIVERY Health professions deliver interventions that align with current best practice, guidelines and standards 80 National Waiting List Management Policy 2013: A standardised approach to managing scheduled care for in-patient, day case and planned procedures developed by the National Treatment Purchase Fund (NTPF) and the Department of Health; accessed 23 rd November NRH waiting list project 50

51 Patients receive appropriate intensity of treatment Care plans / goals / rehabilitation prescription are reviewed at regular intervals by the interdisciplinary team and with patient/family. TRANSFER OF CARE, FOLLOW-UP AND RE-ENTRY There should be clearly defined criteria for transfer, communicated to patient and family. A list of agreed global and impairment specific outcome measures should be used to communicate patients functional achievements and ongoing goals The team receiving the patient should be given comprehensive discharge / transition information at the time of transfer Post-intervention review over a period of 1-2 years with access to requisite therapies through the tertiary centre, regional unit or community services Re-entry can be planned or unplanned; both should be monitored for trends/patterns that will inform future service delivery. MANAGED CLINICAL REHABILITATION NETWORKS (MCRN) Managed clinical networks facilitate re-design, quality improvement, strategy and planning across pathways. Teams work across department boundaries, teams, units and divisions. They achieve their results through consensus and collaboration by enabling clinicians, patients and service managers to work together to deliver safe, effective and person-centred care. A managed clinical network provides a template for enhancement of service provision to patients requiring neurological and limb absence rehabilitation. The following are the essential components of a MCRN: The acknowledgement of three distinct levels of complexity in specialist rehabilitation service in a variety of rehabilitation settings (chapter 2) Clear referral protocols and pathways at the interface between specialist and non-specialist rehabilitation, and disability services Collaborative working between statutory and non-statutory agencies to improve services for service users It is intended to promote the following key aspects of service design and delivery: Responsive services at appropriate levels Development of integrated quality services with continuity The needs of patients will be met wherever they enter the service continuum. Access to a wide range of support services A clear focus on clinical governance and quality assurance 82. Specialised staff with competencies in appropriate areas 82 This will be achieved through integrated teamwork, development and sharing of agreed protocols benchmarking against agreed standards, identification of good practice and supporting innovation and clear measurement of efficiency, effectiveness and value for money. 51

52 MCNs for a wide range of medical conditions have been established in Scotland and England, and consist of linked groups of health professionals and organisations from primary, secondary and tertiary care working in a coordinated manner. At best the MCNs can encourage all service providers that when they work together they deliver more than the individual idual parts when working in isolation. STRUCTURE OF A MANAGED CLINICAL NETWORK WORK A national steering committee will support and guide the work of each regional network. Membership of the steering group will include representatives from all relevant nt stakeholders. Supporting the role of the steering committee are subgroups, including public and patient involvement, quality assurance, education/training. The leadership and management function of the MCN will be delivered through the sessional commitment ment of an appointed MCN clinical lead and MCN Manager. The capacity of the management team will need to be flexible dependent on the stage of development of the regional network. Clinical Strategy & Programmes Division National Director Acute Hospital Division National Rehabilitation Medicine Steering Group Education National Director Social Care Division FIGURE 12 Special Interest Groups Research & Clinical Standards Regional MCRN Regional Specialist Rehabilitation Services Community based Specialist Rehabilitation services : LEADERSHIP WITHIN THE MANAGED CLINICAL REHABILITATION NETW ORK The structure of a network derives from definition of points of entry to care, points of care delivery and their connections. connections. A key task is to set out the mechanisms and principles governing the relations between points of care, as care pathways and guidelines. idelines. All professionals involved with care delivery are de facto members of the network. MCRNS - BENEFITS FOR PATIENTS 52

53 More efficient joined up care, delivered as close to home as their complexity of needs allows Consistent care regardless of location Improved access to appropriate services, in the appropriate setting Clarity exists about how to re-engage with services as the condition requires BENEFITS FOR STAFF Consistent approach to the local implementation of the national standards, guidelines and care pathways Service designed in line with national guidance Skills, knowledge and expertise of a range of staff are used in new ways There is improved understanding of the roles required to deliver comprehensive service in the regions and locally BENEFITS FOR MANAGERS / ALL SERVICES Cost-effective and accessible services Reduced unnecessary delays in hospital Partnership working to reduce delays in the system Improved understanding of the type of care needed, appropriate activities, service complexity and dependency. Managed Clinical Rehabilitation Network Primary Care Community CBT Acute Hospital Complex Specialised NRH Regional HSE-RRU FIGURE 13 MANAGED CLINICAL REHABILITATION NETWORK 53

54 MCRN GOVERNANCE LINKS WITH HEALTH SERVICE MCRNs will be fully integrated and embedded within HSE planning, operational service delivery and governance structures. MCRNs will be involved in discussions on the prioritization of services and resource re-allocation in their region. Annual service and quality improvement plans will be agreed with the appropriate HSE division. Further clarity is needed on the reporting and governance arrangements for MCRNs within the HSE. Integration of primary and secondary care is critical to the realisation of the managed clinical network model. LEADERSHIP MCRN Lead Clinicians will be drawn from the ranks of senior, experienced rehabilitation clinicians within the network and must exhibit clinical authority, ability to inspire the interdisciplinary team and to work in partnership across professional boundaries and with colleagues from other sectors. The job plan for the Lead Clinician will allocate time away from clinical work to lead the network with a supporting team. Appropriate remuneration will be required to fund backfill of the lead clinician s post. The supporting team will include a network manager who will ensure the network functions effectively and achieves tangible progress in developing equitable, high quality, safe and effective person-centred services. The Lead Clinician and network manager should have access to leadership training. MCRNs will, where possible, cover relatively related conditions. Network managers and Lead Clinicians require a great deal of knowledge and experience of services in a particular clinical area. Their remit should not be spread too thinly across several disease areas as this could reduce the efficiency of the MCRN s concerned. ACCREDITATION Every MCRN should be subject to a process of endorsement/quality assurance by the HSE, in particular the national quality standards, Safer Better healthcare, and/or other quality standards deemed appropriate. CORE PRINCIPLES AND ELEMENTS OF MANAGED CLINICAL NETWORKS ACCOUNTABILITY Service providers co-ordinated by the MCRN should have clear accountability arrangements to deliver quality, safe and reliable healthcare in line with HSE QPSD and HIQA standards. Targets will be agreed with each site to ensure that the maximum benefits outlined in the business case / benefits plan are achieved. Reporting will be captured on a continuous basis and reviewed regularly in the early stages of network operation. CLARITY 54

55 Each MCRN will have clarity about its management arrangements including the appointment of a Lead Clinician who is recognised as having joint responsibility for network clinical governance. Each network will produce an annual report to the HSE (to which it is accountable) and that annual report will be publically available. GOVERNANCE PROTOCOLS Policies and protocols derived from national guidance documents, and compliant with Irish and European legislation, will be developed. These procedures will ensure services users receive coordinated, consistent integrated care along the rehabilitation continuum. They will be monitored and audited at intervals. MONITORING AND REVIEW Key performance indicators (KPIs) will be developed jointly by the MCRN lead clinician and local clinicians. Clinical and process outcomes will be monitored, measured and review. Service providers will have in-house systems relating to service, clinical or workforce underperformance and the MCRN steering committee will develop joint governance mechanisms with those service providers. MULTIPROFESSIONAL / INTERDISCIPLINARY Each MCRN will be interdisciplinary and multi-professional. Rehabilitation team members will have clearly defined roles and responsibilities. CAPACITY AND CAPACITY PLANNING MCRNs will have systems to define and make recommendations on clinical priorities, and identify and implement cost savings initiatives. The MCRN will plan and manage resources to deliver high quality, safe and reliable rehabilitation services. COMMUNICATION AND CONSULTATION MCRNs will have systems to ensure there is clear communication and consultation with all stakeholders in the planning, design and delivery of services. CLINICAL EFFECTIVENESS AND AUDIT MCRNs will develop systems to ensure gathering and reporting of high quality information on clinical effectiveness and outcomes. MCRNs will develop and implement an annual clinical audit plan. Services within the network should reflect contemporary evidence of what is known to achieve best patient outcomes. PATIENT/SERVICE USER INVOLVEMENT Patient and carers / family involvement, formal and informal, will be facilitated at all points on the continuum of care and feedback will inform service development. Systems will be in place to facilitate information delivery to patients and families as well as feedback, complaints procedures and self-management. RISK MANAGEMENT AND PATIENT SAFETY Specialist rehabilitation services in the provider organisations within the MCRNs will take heed of the HSE s Risk Management Policy, specifically through the Quality and Patient Safety Division. The MCRN will ensure that there are mechanisms in place to 55

56 develop, implement and monitor patient safety initiatives around critical areas including essential mechanisms such as robust incident management, effective risk registers and complaints and ensure they are managed effectively and in line with relevant policies STAFFING AND STAFF MANAGEMENT The MCRNs will ensure their service providers will have robust recruitment and workforce planning procedures allowing them to recruit staff with the relevant competencies and registration to treat particular levels of complexity. All service providers within the network will have adequate supervision, support, reporting arrangements and clinical accountability systems for their staff. Interdisciplinary audits will be encouraged to nurture team learning. EDUCATION / TRAINING MCRNs will ensure that all professionals involved in the network are participating in appropriate appraisal systems that assess competence to carry out roles. Systems will be developed to ensure consistent policies on training, competencies and CPD. MCRNs educational and training potential will be exploited in particular through exchanges among clinicians working across the rehabilitation continuum in community and primary care, and in hospitals or specialist centres. COST EFFECTIVENESS Each MCRN will monitor opportunities for achieving value for money through the delivery of optimal, evidenced based care that improves patient experience, optimizes productivity and reduces service variation. 56

57 11. PATIENT JOURNEY THROUGH THE SERVICE Specialist rehabilitation takes place at a variety of care settings. Each setting provides appropriate rehabilitation with the appropriate staffing resources and training. Figure 1 shows the proposed pathway for specialist rehabilitation medicine services. The pathway is non-linear, as there must to be access at any point along the continuum. The model recognizes that the complexity and nature of patient needs change over time. All specialist rehabilitation services will have a case mix that covers a range if complexity. Within a local specialist rehabilitation service (level 2) it could be expected that, at any one time, a small number of patients (25-30%) will have complex needs. In level 1 service, 60-70% will have complex needs at any one time. It is the proportion of complex patients that chiefly distinguishes these 2 levels of service. Acute Specialist Rehabilitation Services (A-SRS) Post Acute Specialist Rehabilitation Services (PA-SRS) Community Based Specialist Rehabilitation Services (CB-SRS) Continuing Care Services (CSS) Primary Intervention Emergency Care Acute Rehabilitation Prevention Complex Specialised Rehabilitation Services C-SRS Regional Specialised Rehabilitation Services Examples could Include: Outpatient Services Day Treatment Home-care Services Residential Supported Care Vocational, Educational, Recreation Services Outreach Examples could Include: Home, School and/or Work Support Day Activity In-Home Services Residential Supported Living Long-term Care Outreach Services R-SRS FIGURE 1 PROPOSED PATHWAY FOR REHABILITATION MEDICINE SERVICES This section is intended to illustrate how levels of specialist rehabilitation translate into identification and assessment, intervention and transition between all stages across the continuum of care. Specialist rehabilitation principally takes place in the following settings: Acute Hospital National Specialist Centre Regional Specialist Rehabilitation Units 57

58 Community Based Specialist Services Each care setting is described in terms of: Overview of the scope of services Outcomes for the patient journey Requirements for implementation of the MoC - structure, people, process Anonymized case studies are presented ACUTE REHABILITATION The following key components should form the basis of acute care specialist rehabilitation services. The hospital models (1-4) are described in detail in the Acute Medicine Programme (AMP) MOC. OVERVIEW OF THE SCOPE OF SERVICES In acute hospitals patients with sudden acute onset conditions such as acquired brain injury, spinal cord injury or limb absence benefit from and have the potential to improve or maintain function with early intervention. The RMP recommends early referral and specialist rehabilitation assessment within 48 hours in all hospitals admitting major trauma, with access to acute rehabilitation units in Model 4 hospitals that provide specialist neurosurgical /spinal services. In neuroscience centres and trauma networks, and in model 4 hospitals, there is a requirement for dedicated rehabilitation beds and a consultant liaison facility to all hospital wards, including intensive care units, from a trained rehabilitation team. This team normally consists of doctors, nurses and relevant health and social care professionals (HSCPs). Service users in non-model 4 hospitals should have early access to rehabilitation medicine assessment (within 14 days of referral). Staffing levels should be sufficient to provide complex, high intensity intervention (as determined by international best practice standards). Interdisciplinary teams should be developed and have specialist training and competency to engage in goal setting and review. OUTCOMES FOR THE REHABILITATION JOURNEY Integrated assessment will occur in an interdisciplinary environment Validated outcome measures will be agreed and used routinely during planning IDT meetings Integrated discharge planning will begin on or before admission Timely referral and transfer to other services is imperative to ensure that patients needs are managed effectively and acute hospital beds are used efficiently. An enablement model of care will be used in this setting, with focus on maximising ability, reducing impairment and preventing secondary complications Early supported discharge and outreach / in reach services will be developed to facilitate timely discharge 58

59 Certain cohorts of patients e.g. following mild acquired brain injury (ABI) may not require inpatient acute care and will be followed up to identify any residual deficits 83. Effectiveness in the service user pathway will be enhanced by o reduction in re-admissions, o decrease in average length of stay (LOS) o decrease in service users requiring a post-acute inpatient stay and o reduction in nursing home placement waiting times o Reduction in discharge delays due to early assessment and discharge planning IMPLICATIONS FOR IMPLEMENTATION Admission and discharge criteria will be required to ascertain eligibility criteria Services will need to be set up in a way that prevents acute beds being used to address post-acute needs Protocols regarding adequate workforce and appropriate skill mix provision to specialist rehabilitation services will assist to ensure patient care and intensity of therapy aligns with best practice Good communication, collaboration and team work between acute care teams and specialist rehabilitation teams will need to be developed Case study here POST-ACUTE SPECIALIST SERVICES Post-acute specialist services comprise two types of facility. Both provide intensive in-patient and out-patient (capacity-dependent) services but differ in volume and complexity of need : Complex Specialist Rehabilitation Services (National Tertiary Centre) Regional Specialist Rehabilitation Units The following key components should form the basis of complex specialist rehabilitation services NATIONAL SPECIALIST CENTRE A small proportion of service users require complex specialist rehabilitation (Level 1). The national specialist rehabilitation service, based at the National Rehabilitation Hospital (NRH) Is, by necessity, a high-cost, low volume service provided for service users with uncommon or highly complex conditions. OVERVIEW OF THE SCOPE OF SERVICES Typically service users require high-intensity intervention from specialist staff over an extended period of time. 83 Please see appendix 2 for an example of such a system which has been put in place as a joint initiative between St Vincent s University Hospital and the National Rehabilitation Hospital 59

60 All primary traumatic SCI post acute rehabilitation takes place at this level Staffing levels should be sufficient to provide complex, high intensity intervention of longer duration as required. Staff members work in an interdisciplinary manner and have specialist training and competency to provide this level of rehabilitation. Services are led a Consultant in Rehabilitation Medicine. Key worker a is adopted Goal setting and review model Validated outcome measures adopted and used routinely; planning at regular MDT meetings The complex specialist service will provide research, education and training support to clinicians specialist and non-specialist rehabilitation services nationally. For example ongoing education from the hub site to spoke hospital/unit staff (via various mechanisms including telephone, or onsite at either site) SPECIFIC EXAMPLES OF PROGRAMMES OFFERED INCLUDE Inpatient complex rehabilitation assessment Disorder of consciousness Complex spasticity management Oro-pharyngeal and tracheostomy management Assistive technology Behavioural / cognitive therapy Sexual counselling Formalized family support Complex discharge planning and vocational rehabilitation OUTCOMES FOR THE PATIENT JOURNEY Enhanced access to specialist rehabilitation services for those who require Level 1 treatment Services will be delivered in line with international best practice by competent staff Timely transition to follow on services will be as near to the person s local environment as is practical Facilitation of family/carer support and involvement in rehabilitation care IMPLICATIONS FOR IMPLEMENTATION Clear admission and discharge criteria for specialist services Efficient and effective communication, collaboration and linkages between the hub and spoke services Education and research leadership in hub centre Data sets coordinated via hub centre Add case study here 60

61 REGIONAL REHABILITATION UNITS Services will be provided by trained rehabilitation staff led by Rehabilitation Medicine Consultants, supported by consultant neurologists and geriatricians. Leadership may also emerge into the future from nursing, therapy or psychology leads (HSCPs). OVERVIEW OF THE SCOPE OF SERVICES Regional specialist rehabilitation units will be developed to provide high to moderate intensity inpatient rehabilitation (level 2) for patients who can tolerate an intense rehabilitation programme or who require a structured environment (e.g. for safety reasons) Level 2 specialist rehabilitation units are there to support patients with moderate to severe physical, cognitive and/or communicative disabilities. Staffing levels should be sufficient to provide high to moderate intensity intervention The multidisciplinary team will work in an interdisciplinary manner and have specialist training and competency to provide this level of rehabilitation. Provision of one-on-one therapy, group therapy and service user selfmanagement /family involvement in the therapy programme Key functions will include: early discharge and continuity of therapy from acute facilities and the complex specialist rehabilitation services, the commencement of vocational assessment (Liaison with Rehabilitative training services) and support for those who need to transition to home. Defined protocols for access to services will be developed to ensure equitable service provision to the range of service users Use of key worker approach promotes communication and co-ordinates information sharing between the IDT, the service user and family. Depending on the capacity and capability of the unit the following may be characteristics of the regional rehabilitation units Streamlining of care, where service users are grouped according to impairment type Specialist facilities/equipment (eg specialist mobility/training aids, orthotics, assistive technology) or interventions. Integrated care types (for example, outreach teams from acute care, or shared care models/parallel care with neurology or geriatric specialties) OUTCOMES FOR THE PATIENT JOURNEY Intensive interdisciplinary care leading to functional ability being transferred to ambulatory care settings (either community based specialist services or nonspecialist services depending on care needs) Streamlining of care leads to specialisation and education of staff Integrated care promotes care co-ordination and improved flow across the continuum of care Validated outcome measures established and used routinely and planning at regular IDT meetings. 61

62 IMPLICATIONS FOR IMPLEMENTATION Admission and discharge criteria will be required to describe eligible service users who require and will benefit from inpatient post-acute specialist rehabilitation services or referral from ambulatory care (either specialist or nonspecialist). Clear processes regarding bidirectional flow will need to be defined including clear transfer criteria to acute care beds if required and access to tertiary specialist rehabilitation services if appropriate. Availability of appropriate levels of medical cover Access to clinical services (e.g. diagnostic, specialist appointments, pathology) not available on site Protocols regarding adequate workforce and appropriate skill mix provision to specialist rehabilitation services will assist to ensure patient care and intensity of therapy aligns with best practice. COMMUNITY BASED SPECIALIST SERVICES Most rehabilitation should be delivered as close as possible to the individual s home. The development of community rehabilitation teams (CRTs) on a regional basis to support local services will facilitate this. Goals of patients who access this level of service will typically be focused on restoration of function and independence and coordinated discharge planning with a view to continuing rehabilitation with their primary care team. Community rehabilitation services will be person centred and foster a culture that supports autonomy and individual choice. In accordance with the choice of the service user, the services provided will promote and optimize the activities, function, productivity, participation, and/or quality of life of the service user. Services will be dynamic and focus, after a planning process, on the expectations and outcomes identified by the service user and the service providers. The service providers are knowledgeable of care options and linkages to assist the person served; use resources, including technology, effectively and efficiently. The service providers are knowledgeable of their roles in and contribution to the broader health, community, and social services systems. OVERVIEW OF THE SCOPE OF SERVICES Moderately intensive interdisciplinary outpatient programmes for service users requiring two or more therapies. One-on-one therapy and/or group therapy treatment sessions CRTs will require a degree of specialisation and training that will enable them to provide services to people with complex presentations, such as o those who require a degree of specialist input beyond that available from a primary care team o those who do not require in-patient facilities, but do require moderate intensity rehabilitation o those who need to transition from hospital to home. 62

63 CRTs will form a critical link in the care pathway by: facilitating early discharge and continuity of therapy from acute, regional in-patient and complex rehabilitation facilities; assessing and making recommendations on vocational options such as returning to work, educational and occupational activities and liaison with Rehabilitative training services CRTs will support primary care teams through advice, consultation and shared care approaches to assessment and intervention at varying phases of recovery and over the individual s life span as necessary. CRTs will typically comprise the HSCP, a case manager, with the support of specialist regional medical (RM), prosthetic and orthotic expertise. They will ensure strong links with regional hospitals and national levels of expertise and support, and will, in turn, support ongoing care provision through emerging primary care teams. OUTCOMES FOR THE PATIENT JOURNEY CRTs will be developed to provide moderate intensity rehabilitation/ ambulatory care and to enable activity and participation in community settings across home, educational, work and social environments (level 3). Facilitates earlier discharge from hospital Facilitates access to specialist services locally from primary care IMPLICATIONS FOR IMPLEMENTATION Admission and discharge criteria will be required to describe eligible service users who require and will benefit from outpatient specialist rehabilitation services Protocols regarding adequate workforce and appropriate skill mix provision to specialist rehabilitation services will assist to ensure patient care and intensity of therapy aligns with best practice Adequate space and equipment for outpatient treatment will be required The following case study depicts specialist services at ambulatory care level provided by CRT with good links with PCT. Case study here VOLUNTARY ORGANISATIONS AND SPECIALIST REHABILITATION The role of voluntary providers is crucial in the rehabilitation and long term management of neuro conditions and is acknowledged in the 2011 Neurorehabilitation Strategy thus: the integral role played by the community and non-statutory sector in service delivery is acknowledged from the outset (of this report) The RMP recognizes that a range of support services are critical to maintaining and developing the gains made on discharge from specialist rehabilitation services. Voluntary providers offer many services that ensure effective and durable outcomes from the rehabilitation effort including work retention and retraining, social inclusion, carer support and long term management of neurological sequelae. Voluntary 63

64 organisations also provide a range of services and supports that are key to supporting the individual and their family, working closely with statutory specialist services to provide information, peer support and guidance critical to promoting compliance and personal goal attainment. Voluntary services have developed many innovative and comprehensive services in response to the needs of people with neurological conditions. Many voluntary providers have applied for and secured internationally-recognised accreditation standards for the programmes they provide. Services provided by voluntary organisations lie outside the remit of the RMP s role as a strategic instrument of the HSE. Those services are subject to separate contractual arrangements with the operational limb of the HSE. However, the programme wishes to highlight specific examples of good practice so that delivery of highly competent specialist rehabilitation services by voluntary organisations can be supported during the implementation. Vocational Assessment and Rehabilitation Promoting return to work is a stated objective of the RMP. The programme recognises that its role in achieving this objective is limited by its scope to the treatment of patients with specialist rehabilitation needs. The delivery of focused vocational training and support is coordinated by a range of statutory and nonstatutory service providers. The programme recognises that effective linkages will be required between specialist medical rehabilitation services and vocational services to ensure the delivery of vocational supports to maximise positive outcomes for patients. A separate work-steam will be set by the working group up to address these linkages. Vocational rehabilitation should be considered a specialist rehabilitation service which includes inter-disciplinary assessment, inter-agency intervention to support a return to work, vocational retraining or withdrawal from work/financial planning as appropriate. It should also encompass any return to productive roles such as parenting/education/training/volunteering. The programme recognises the importance of common standards for assessment, delivery and outcomes for vocational rehabilitation while accepting that this lies outside the scope of the current programme. Ideally, vocational assessment/evaluation should form part of the total evaluation process in the rehabilitation continuum medical, physical and functional, psychological, cognitive and perceptual, speech and language evaluations. It must be a collaborative process with the person served the objectives being to: Gain insight into strengths and weaknesses Assessment of aptitudes for work, including transferable skills Exploration of the demands of suitable jobs Exploration of alternative work or training options taking into account vocational interests 64

65 Liaison with and assist employers with information, recommendations and support Link with and refer to relevant community services. Ideally all service users who identify a goal of returning to work/meaningful occupation should have the opportunity to participate in a Vocational Assessment as part of their rehabilitation programme. A vocational assessment should include detailed interview, including impact of injury, educational and work history, interests, leisure and social activity as well as ambition/aspirations, is an integral part of the process. The vocational assessment should also include the use of standardised assessments where appropriate. Standardised assessments provide the person and evaluator with important information in relation to functional limitations, work traits, aptitudes and interests. The information from the interview process and the results of the assessment form the basis of recommendations in relation to return to work, further vocational rehabilitation, training, education or alternative occupational involvement. Appropriate referrals are made to relevant services within the community. Vocational Rehabilitation should involve a wide range of services which need to work collaboratively to deliver the best outcomes for the person served. Good quality vocational rehabilitation programmes have included a culture of support and encouragement, practical assistance, emphasis on personal preferences, available timely assistance and flexibility. Providing individualized support and work experience is encouraged. The features of good vocational assessment and rehabilitation programmes include access to a range of healthcare and employment service professionals such that the team has resources and expertise in the following areas; Management of the underlying health condition (prevention of secondary complications which can impact a person ability to sustain employment) and its potential consequences Environmental adaptations and the use of assistive technologies. Anticipation of the specific problems associated with a particular health condition, and planning to limit the impact of same Accessible and responsive service with the ability to respond rapidly when needed. Established links with other relevant statutory services and voluntary/user led organisations. Factors which impact on a person s vocational rehabilitation can be aligned with ICF classification as follows: 1. Impairments The extent and severity of impairment influences vocational success. The most significant issues, with respect to vocational/occupational rehabilitation would include 65

66 cognitive difficulties, neuropsychological impairment, emotional impairments such as anxiety and depression, fatigue, pain and motor impairment. 2. Activity Limitations Limitation in mobility, while in itself may not impact on a person s ability to carry out duties associated with work, however such limitations may make access to work difficult, and potentially movement within the workplace effortful. It is found that people with greater community mobility and those who live independently have a highly likelihood of vocational success. 3. Participation Restriction Psychological factors such as positive work attitude, internal locus of control, optimism and self-esteem are all associated with improved potential to return to work, however these are often issues the individual with a disability can struggle with the lack of opportunity to socialise normally with peers may also leave the person looking to return to work severely disadvantaged. Research has shown that successful vocational rehabilitation programmes for adults seldom focus on the treatment of impairment, instead their success has been with addressing workplace access, tailoring work patterns and demands to match the attributes of the employee and providing information on health conditions, rights and resources to both employers and employees 84 The societal and personal value associated with employment should not be underestimated. Being employed influences life satisfaction positively. Those who return to work, in general, can be seen to have a higher level of activity, fewer medical treatments, fewer depressive symptoms and better overall adjustment. SPECIALIST REHABILITATION SERVICES FOR CHILDREN While the needs of children with neurological and limb absence for specialist rehabilitation lie outside the scope of the current programme, the RMP will liaise with the paediatric programme to support/guide the development of specialist rehabilitation services for paediatric patients. The RMP is working with the New Children s Hospital Group and National Paediatric Hospital Board with respect to pathways for complex specialist rehabilitation services. TRANSITION TO ADULT REHABILITATION MEDICINE SERVICES Transition is the planned move of a patients care from a paediatric to an adult health care provider. Transition is a step necessary to achieve the best outcomes possible for patients and their families in areas of health, independence and adulthood. Transition can be defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred 84 BSRM Vocational Assessment and Rehabilitation for people with Long Term Neurological Conditions: Recommendations for Best Practice,

67 to adult-orientated healthcare systems (Blum et al, 1993, cited by DH/Child Health and Maternity Services, 2006) Preparing for this transition is essential as paediatric services which are generally family-centred and developmentally focused differ significantly from adult medical services which attempt to acknowledge patient autonomy. Transferring care to adult physicians should be a guided educational and therapeutic process, rather than an administrative event. It should also recognise that transition in health care is only one element of the wider transition from dependent child to independent adult and that in moving from child centred to adult health services, young people undergo a change that is systemic and cultural, as well as clinical. Encouraging young people to develop as much independence as possible, both from their families and health care staff will help bridge the gap to adult service. Transition should be a planned phased process, ideally one that is delivered in phases. While some of the literature would advocate a 2 phased approach, others would propose a 3 phased approach. Irrespective of age or number of phases, all agree that the concept of transition should be introduced in early adolescence, with the young person becoming aware of their own health and care needs, and the full implications of their medical condition. Progression through phases should be based on the assessment of the young persons understanding and their confidence in their own autonomy. Six key areas should be addressed in all phases of transition and these are: Self-advocacy Independent health care behaviour Sexual health Psycho social support Educational and vocational planning Health and lifestyle By the final phase, the young person should have a considerable degree of autonomy over their care. They should be aware of their own health care needs and how best to access support or seek advice and further information/education if needed. A number of key elements need to be considered when assessing the success of transition: Effective communications between hospitals for transfer of medical records and imaging results. Flexibility with respect to timing of transition. Not all young people will be ready to make the transfer to adult services at the same time. Issues such as cognitive and physical development, emotional maturity and the status of their health should be taken into account when planning transition. Appropriate educational interventions are necessary to assist the adolescent understand the disease, treatment rationale, taking appropriate action and 67

68 learning how to seek help from health professionals and navigate the health system. Concerns about equivalency of service are highlighted as potential challenges for successful transition. The RMP advocates the use of a transition checklist 85 to guide transition from paediatric to adult services. The RMP recommends that each site serving paediatric patients with specialist rehabilitation needs refer to the checklist, even when paediatric and adult services are in the same hospital as evidence would suggest that geographic colocation does not always translate into smooth transition services. NON-SPECIALIST REHABILITATION SERVICES Non-specialist post-acute rehabilitation services are provided at the level of primary and continuing care services and are designed to provide sustaining services in the community, school and work when a person returns to independent or supported living and work in the community. While strategic planning and implementation of rehabilitative disability management at PCCC level is beyond the remit of the RMP the programme continues to engage with the cross-agency 2011 Neurorehabilitation Strategy Implementation group to influence re-organisation and improved access to these services for our constituency of patients. PRIMARY CARE All services providing care for patients with disabling conditions should provide a rehabilitative approach. Basic rehabilitation skills should be a competency of all health care professionals. Primary care teams would be considered to provide local, non-specialist general multi-professional rehabilitation and therapy for a range of conditions. Non-specialist rehabilitation services are generally led by non-medical staff. Primary Care Teams and Services will provide: Generalist rehabilitation services to a defined population who are residing within the community and are medically stable. A single service or multidisciplinary team approach Low to moderate intensity therapy Rehabilitation services, specialist or non-specialist should be goal orientated and patient focused. Individualized and task specific therapy Outcome management and key activity data should be collected The longer-term needs of people with neurological and limb absence disability should be the shared responsibility of specialist and local health services in partnership with social services and the voluntary sector, as well as other statutory authorities such as housing, employment, education, transport etc. The General Practitioner (GP) and the primary care teams (PCT) have primary responsibility for service users living at community level. The PCT is 85 Appendix 4, page

69 well placed to assist in the provision of generic non-specialist interventions on an ongoing or intermittent basis to identify and meet the needs and goals of individuals within the community. Coordinated teams cost no more to implement than an ad hoc approach and are more likely to enhance societal participation for service users. There needs to be strengthened links into specialist services at a local/regional level to address changing or deteriorating service users needs. This will require clear pathway and protocol development. The adoption of a case manager approach would facilitate robust admission and discharge pathways into and from specialist rehabilitation services based on service user needs. This approach is presently used by some voluntary agencies and HSE services. The role of the case manager is generally to seek out and coordinate appropriate resources, monitor progress, and communicate with the person, family, and other professionals as appropriate. Ongoing support is required in the community in order to maximise independence and quality of life. It is impossible to separate the needs for healthcare and social services in the long-term management of the effects of neurological and POLAR disability on the injured person and their family; joint planning and provision of services are essential to maintain and extend gains made in rehabilitation. The aim of long-term services should be to enable and sustain optimal societal participation, with personal choice, and will involve helping the person and family to adjust to the new situation. Services will need to be delivered in a whole range of settings and, importantly, will involve adapting and developing a range of specialised professional skills and attitudes to working with this client group. It is proposed that there be a clarification of duties and responsibilities of primary care for general rehabilitation with the development of Primary/Secondary prevention guidelines for common long term conditions. Enhanced research, education and training support should be available from the Regional and National Specialist Services and further support can be offered by developing online resources (information and education) for PCTs regarding management of chronic neurological conditions and limb loss/absence is advocated. 69

70 12. REQUIREMENTS FOR SERVICE DELIVERY IMPLEMENTATION OF THE NEUROREHABILITATION STRATEGY Patients with neurorehabilitation are managed across the spectrum of health care facilities from acute rehabilitation, post-acute complex rehabilitation services, regional specialist rehabilitation and community-based rehabilitation through to primary care settings. The National Primary Care Strategy 86 identifies primary care as a key vehicle in addressing the majority of health needs. The 2012 Neurorehabilitation Strategy supports the enhancement of primary care teams capacity through the reconfiguration of existing resources. This move is designed to allow regional and national facilities concentrate their efforts on treating patients with more complex needs. Error! Bookmark not defined. Non-specialist services provided through primary care teams are outside of scope of the RMP. The realization of the managed clinical rehabilitation networks will be dependent on the mobilization of resources and enhancement of service structures as outlined in the neurorehabilitation strategy. PERSONNEL AND WORKFORCE PLANNING Workforce planning will take place at both national and regional managed clinical rehabilitation network level to ensure sufficient and appropriate levels of staffing for the delivery of this model of care. Workforce planning will involve detailed service mapping, will be in line with the British society of Rehabilitation Medicine guidelines for rehabilitation staffing provision 4 and in consultation with workforce planning groups (e.g. TPC & nursing and midwifery workforce planning groups) Models of Care: with the development of managed clinical rehabilitation networks, additional Consultant posts will be required. It is recommended (BSRM) that level 1, 2 & 3 Rehabilitation Services should be led by a Consultant in Rehabilitation Medicine. Chronic Disease: A larger population of disabled individuals are surviving severe trauma, stroke and other acquired brain injury/spinal cord injury. Many of these are left with significant physical and cognitive impairments. This will lead to an increased demand for structured rehabilitative care. As with RM Consultants, the development of managed clinical rehabilitation networks will impact on the number of Nursing and HSCP required. The ratios indicated below (fig **) would need to be replicated in all newly developed regional and community based rehabilitation teams to maintain adequate levels of service. 86 Primary Care: A New Direction (Department of Health and Children 2001b) 70

71 Tertiary Specialist Regional Specialist Specialist Community Primary Care Teams Service and team characteristics Most clinicians work in a rehabilitation subspecialty e.g. BI, SCI, POLAR Populations may not support subspecialty, primary need in RSR will be Neuro rehab (SCI will attend tertiary centre and POLAR primarily out-patient) The interdisciplinary team is led or supported by a Consultant in Rehabilitation Medicine. The team works towards agreed goals Goal orientated therapy delivered by a dedicated MDT in outpatient, community or domiciliary settings Specialist neurorehab services Single service or multidisciplinary team based rehabilitation. Low to moderate intensity Ongoing liaison with support of specialist community team. The service has required facilities, skills and competent staff to provide high intensity rehabilitation. acts as a resource to other professional staff providing support in regional or community based settings. participates in research, education and audit within field of rehabilitation. Provide service to mixed populations Differentiating Criteria 60-70% of patients will have highly complex disabilities 20-25% of patients will have highly complex disabilities. Patients with less intensive needs i.e. 1-3 disciplines (level 3a) Non-specialist rehabilitation service Key Activities/ Nature of Service Disorders of Consciousness, assistive technology, neuropsychiatry Level 2/2a patients with complex neuro rehabilitation needs Spasticity management, cognitive behavioural rehab programmes, complex discharge planning, OP services Joint therapy sessions, individual and group sessions, home and clinic based sessions Home and clinic based service, health promotion & selfmanagement groups Individual and joint therapy sessions, group sessions, day hospital activities, wheelchair & seating clinics TABLE 1 LEVELS OF SPECIALISATION ON THE REHABILITATION SPECTRUM 71

72 MEDICAL REHABILITATION MEDICINE Rehabilitation Medicine is the specialty that is concerned with the prevention, diagnosis, and treatment, and rehabilitation management of people with disabling medical conditions. It was developed primarily to meet the needs of young adults and those of working age, but aspects of the specialty, particularly relating to technical aids, provision of wheelchairs, orthotics or prosthetics, are relevant to people of all ages. The principal aims are to identify the impairments that limit activity and daily tasks, optimise physical and cognitive functioning and modify personal and environmental factors to enable greater participation and quality of life. Rehabilitation Medicine covers a large number of disabling conditions. The majority of these conditions are acquired, such as traumatic brain injury, stroke, spinal cord injury, multiple sclerosis and limb loss. Congenital conditions or those arising in childhood, such as cerebral palsy, muscular dystrophies and limb deficiency, will continue into adulthood and require ongoing support, advice and assistance 3. The remit of rehabilitation medicine services includes neurological and spinal cord injury, rehabilitation of limb loss or deficiency and musculoskeletal rehabilitation. Rehabilitation medicine consultants also have specialist expertise in assistive rehabilitation technology, including environmental control equipment, wheelchairs and orthotics; these are not disease specific and cover a wide range of complex disabilities 3. There are currently 11 Consultants in Rehabilitation Medicine within the Republic of Ireland. At present, 10 of these are working in the area of direct clinical practice. The UK benchmark for the ratio of RM Consultants to population is 1.5 per 250,000. The target number for Ireland on this basis is RM Consultants. This is a modest target given that the average number of Physical and Rehabilitation Medicines for all European countries is 2.8 per 100,000. The target for Ireland on that basis would be 129 RM. Using the UK benchmark, Ireland requires another consultants. France Germany Sweden Italy UK Ireland Number of RM Consultants TABLE?: ADAPTED FROM BSRM NEUROLOGICAL REHABILITATION; A BRIEFING PAPER FOR COMMISSIONERS OF CLINICAL NEUROSCIENCES NURSING The enhancement of nursing roles in rehabilitation medicine facilitates the provision of a timely quality service to the rehab patient promoting and facilitating optimum levels of independence. ADVANCED NURSE PRACTITIONER (ANP) 72

73 The ANP in rehabilitation patient care is an experienced and expert practitioner in this area of practice who is accountable, responsible for an agreed caseload of patients; and competent in and practices rehabilitation care under locally agreed protocols. The ANP should be educated to a master s degree level which includes a major clinical component relevant to rehabilitation. The role of the ANP may vary depending on the identified service need but should reflect competencies and skills guided by the framework set out by An Bord Altranais. The core components of the ANP role include autonomy in clinical practice, expert practice, professional and clinical leadership and research. In addition the ANP role includes practice that enhance patient journey and flow such as nurse prescribing of medicinal products, nurse facilities and nurse led discharge. The ANP is clinically accountable to the patients named rehabilitation consultant and to the regional lead. They are professionally accountable to the Director of Nursing in the rehabilitation centre. They will be responsible for the local delivery of high quality rehabilitation care in the hospital and the community. They are also responsible for the safe, efficient and effective management of patient care. The ANP is responsible for case management of rehabilitation patient group which includes comprehensive patient assessment and management of specific needs. The ANP provides clinical leadership, clinical supervision and support to CNS, staff nurses and members of the multi-disciplinary team. Action/recommendation: Each specialist rehabilitation service should explore developing the role of the ANP in rehabilitation as a key role that can provide autonomous nursing care and lead on development of rehabilitant nursing - in response to service needs. CLINICAL NURSE SPECIALIST (CNS): The role of the CNS in rehabilitation is to provide for the care and ongoing management of patients requiring rehabilitation within agreed clinical practice guidelines. CNS roles in rehabilitation can include a range of specialist services to support the brain injury, spinal and POLAR programmes. The purpose of the CNS post is to improve and enhance the care of patients and their families by developing services in relation to rehabilitation and to assist overall in optimising quality and continuity of care. The post holder is required to work as a key member of the multi-disciplinary team in the hospital and rehabilitation centre providing physical, psychological and emotional support to rehabilitation patients and their families. They act as a liaison between community services, primary care teams and other agencies. The CNS has extensive knowledge of rehabilitation and holds a relevant post registration qualification in rehabilitation (Brain injury, Spinal injury, POLAR) care level 8. Core competencies for CNS include clinical focus, patient advocate, education and training, audit and research and consultancy. Action/recommendation: Each Rehabilitation programme should include a designated CNS with specialist knowledge and experience in rehabilitation. The potential for the role as a key worker/case manager may also be explored in the future. CLINICAL NURSE MANAGER (CNM) 73

74 The Clinical Nurse Manager (CNM) in rehabilitation provides leadership and nursing services to patients at ward level and works with the rehabilitation consultant and MDT to plan care to meet individual patient needs. The CNM play a pivotal role in co-ordination and management of activity and resources within the clinical area. The CNM in accountable to the Director of Nursing and core CNM competencies include leadership, change management, staff management and professional development, standards and quality and resource use budgeting and analysis. The rehabilitation CNM has a relevant nursing management course and also have extensive knowledge of rehabilitation and hold a relevant post registration qualification in rehabilitation (brain injury, spinal injury, POLAR) care level 8. Action/recommendation: Each rehabilitation ward/ area should be managed by a designated CNM with specialist knowledge in rehabilitation. The CNM may also progress role to CNM 3 or Director of Nursing level in a view to manage regional rehab units in rehabilitation and the programme will support this role progression. STAFF NURSE Rehabilitation staff nurses are integral members of the multi-disciplinary team providing significant clinical care for individuals and their families in a wide range of settings. They provide comprehensive patient assessment to develop, implement and evaluate an integrated plan of care and provide evidence based nursing interventions with specific focus on rehabilitation care. The staff nurse engages in monitoring and evaluating the patient s response to interventions and treatment. Action/recommendation: The role of staff nurse remains integral to the rehabilitation of patients and should continue to be fostered / developed. The programme recommends the availability of associated education and development in the area rehabilitation nursing is explored. This will support the development of nurses along a clinical (CNS and ANP) and managerial (CNM) career pathway within rehabilitation care. Rehabilitation nursing training is required in addition to general nursing qualification to practice in the rehabilitation setting. Staffing ratios for nursing differ depending on the rehabilitation setting and should reflect the level of dependency of patients as opposed to numbers of patients on a ward. There are currently no guidelines with respect to ratios of general nursing and rehabilitation nursing staff in the rehabilitation setting, however international standards for in-patient rehabilitation services requires that rehabilitation nursing services are available twenty four hours per day, seven days a week (the CARF medical rehabilitation standards, section 3A). Higher proportions of rehabilitation nurses have been shown to have a direct impact on patient outcomes in both acute and longer term care facilities 87. Investment in the continued professional development and competency attainment for nursing staff working within rehabilitation setting should be a priority. Such an investment which would increase ratios of staff with appropriate rehabilitation experience working with patients has been demonstrated to yield positive outcomes with respect to; 87 Nelson, A et al; Nurse Staffing and Patient Outcomes in Inpatient rehabilitation settings ; Rehabilitation Nursing, vol 32, No 5, Sept/Oct

75 - Cost avoidance for adverse outcomes - Cost avoidance for hospital days - Economic benefits of patients increased functional independence. HEALTH & SOCIAL CARE PROFESSIONS The therapy professions are core members of the rehabilitation team. They are part of the wider health and social care professions and are essential for the successful delivery of the rehabilitation model of care. They play a key role and are actively involved at all stages of the rehabilitation continuum from acute care, complex specialist rehabilitation, and post-acute rehabilitation through to community rehabilitation and supporting services. Each profession has a particular specialty with distinct knowledge, skills and abilities to deliver safe, high quality services that enhance the service users rehabilitation outcomes. It is essential that the unique depth and breadth of skills, knowledge and expertise that these professions bring is understood, valued and appropriately utilised within service development and in the delivery of rehabilitation services. The therapy professions use multidisciplinary or interdisciplinary teamwork approaches to promote, maintain and restore physical, psychological and social wellbeing of the person with rehabilitation needs. Intervention is person centred, goal orientated and delivered in one to one sessions or within a group setting. The service user is a core member of the rehabilitation team along with their family members/carers as appropriate. The scope of practice is not limited to direct patient/client care but also includes: public health strategies, advocating for patients/clients and for health, supervising and delegating to others, leading, managing, teaching, research, developing and implementing health policy. Core therapy profession team members include the dietitian, occupational therapist, physiotherapist and speech and language therapist along with trained therapy assistants. Access to non-core therapy services should be available as required e.g. podiatry and orthoptics. The roles of these professionals are outlined below. There is clear evidence that multi-disciplinary intervention consistently benefits service users across the rehabilitation continuum. It is essential to maintain an appropriate skill mix of staff for specialised rehabilitation. This includes a mix of clinical specialist, senior, staff grade and assistant staff. ROLES AND RESPONSIBILITIES WITH THE REHABILITATION TEAM DIETITIAN The role of the dietitian in rehabilitation is multifaceted: To optimise the patient s nutritional status so that they are able to derive the maximum benefit from the rehabilitation programme. Malnutrition is associated with slower neurological recovery and worse outcome (Denes 2004). 75

76 To prevent nutrition related complications which could interfere with the ability to engage in rehabilitation e.g. pressure sores, excess weight. To prevent recurrence in at risk groups. The dietitian s skills in facilitating behaviour change are essential at a time when patients are dealing with life-changing events. Good communication skills are required in educating those with aphasia. Specific nutrition issues will affect different patient groups: Spinal Cord Injury - Weight Management Dietary intervention ensures that body weight is appropriate to optimise physical mobility and prevent obesity and its associated conditions such as Type 2 Diabetes (Jones et al 2003) Neurogenic Bowel Dysfunction The dietitian individually assesses each patient to determine the optimal diet for their bowel management programme. - Pressure Sores The dietitian addresses nutritional factors that play a role in pressure sore management including poor nutritional intake, underweight or overweight. Acquired Brain Injury - Undernutrition The dietitian assesses the patient s nutritional status, estimates nutritional requirements, prescribes and monitors the nutrition care plan. - Weight Management Control of body weight is essential in avoiding the recognised complications of obesity and mobility issues in these patients. - Dysphagia Dysphagic patients require modifications to the texture of their food which imposes a risk of malnutrition. Close dietetic supervision is essential to ensure nutritional adequacy. - Secondary Prevention The dietitian has the necessary skills to educate the patient and their carers on modification of risk factors. Amputees - Weight Management Excess weight will impair ability to mobilise with and may affect the fit of the prosthetic limb. The dietitian will collaborate with the patient to support attainment of healthy weight. 88 Jones et al (2003) 76

77 - Risk Factor Modification The dietitian will assist the patient in amelioration of risk factors such as peripheral vascular disease or poorly controlled diabetes mellitus to prevent further amputation. Because of the long-term nature of these conditions and the many nutrition-related consequences, nutritional status in these patients should be continually monitored. OCCUPATIONAL THERAPIST Occupational Therapy is a client-centred health profession concerned with promoting health, well-being and quality of life through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or environment to better support their occupational engagement. (WFOT 2010) Occupational Therapists focus on developing and maintaining people s skills to carry out their everyday occupations such as work, self-care and leisure. They assess the impact of changes in physical, psychosocial and cognitive functioning on a person s ability to manage daily life tasks. Intervention improves participation in meaningful roles, tasks and activities; minimizes secondary complications and provides education and support to the person and their caregivers. Occupational Therapists focus on independence, client- centred practice, and their specialist skills in activity analysis, activity adaptation and environmental modification underpin the professions contribution to the rehabilitation team. The role of the Occupational Therapist includes: Assessment of physical, psychosocial and cognitive /perceptual skills through interview, observation, standardised assessment and liaison with family/carers and other members of the rehabilitation team Assessment of the clients performance skills in relevant activities of daily living e.g. personal care activities, domestic activities, community living skills and work/vocational skills Assessment of the client s home and/or work environment Goal setting and intervention planning ( including discharge planning) in collaboration with the client and team Provision of individualised evidence based occupational therapy interventions which can include: Practice of relevant daily living skills, incorporating compensatory assistive equipment and/or strategies when required Physical, Cognitive and Vocational rehabilitation programmes 77

78 Practical advice and recommendation on environmental modifications/ adaptations Trialling and recommendation of assistive technology devices e.g. alternative input devices for computer access/ environmental control systems Postural management/seating Splinting Stress management / relaxation therapy Education and support for the client, family/carers in relation to their goals, occupational therapy programme, self-management and ongoing needs PHYSIOTHERAPIST Physiotherapy, as defined by the world confederation of physical therapy (WCPT) provides services to individuals and populations to develop, maintain and restore maximum movement and functional ability throughout the lifespan. This includes providing services in circumstances where movement and function are threatened by ageing, injury, pain, diseases, disorders, conditions or environmental factors. Functional movement is central to what it means to be healthy. Physiotherapy in rehabilitation is concerned with identifying and maximising quality of life and movement potential within the spheres of promotion, prevention, treatment/intervention, habilitation and rehabilitation. This encompasses physical, psychological, emotional, and social wellbeing. Physiotherapy involves the interaction between the physiotherapist patients/clients, other health professionals, families, care givers and communities in a process where movement potential is assessed and goals are agreed upon, using knowledge and skills unique to physiotherapists. The physiotherapist s extensive knowledge of the body and its movement needs and potential is central to determining strategies for diagnosis and intervention. Physiotherapists are qualified and professionally required to: undertake a comprehensive examination/assessment of the patient/client or needs of a client group evaluate the findings from the examination/assessment to make clinical judgments regarding patients/clients formulate a diagnosis, prognosis and plan provide consultation within their expertise and determine when patients/clients need to be referred to another healthcare professional implement an intervention/treatment programme determine the outcomes of any interventions/treatments make recommendations for self-management SPEECH AND LANGUAGE THERAPIST 78

79 Speech and Language Therapists are responsible for the diagnosis, management and treatment of individuals who are unable to communicate effectively and/or who have difficulties with eating and drinking. Speech and Language Therapists are actively involved at all stages of the rehabilitation care pathway. The role of the Speech and Language Therapist is diverse and individualised to the patient, dependent upon their stage of rehabilitation. It includes: Assessment, differential diagnosis and management of acquired speech, language, voice, cognitive-communication disorders (including low Awareness States); and feeding, eating, drinking and swallowing disorders (dysphagia) including the provision of appropriate therapy/intervention to minimise preventable respiratory and/or nutritional complications of swallowing difficulties Providing individualized evidence based patient focused therapy programmes which incorporate functional activities aimed to maximise independence and participation in the community. These may include skills required for returning to/ remaining in work, living independently, or enhancing social interactions. Group therapy and computer based rehabilitation may also be offered if appropriate Trialling and recommending augmentative/alternative communication aids when appropriate (e.g. Alphabet boards, communication boards, voice amplifiers and speech generating devices, communication/speech Apps (android, ipad) Providing support for patients and families through the provision of counselling and education about communication, feeding, eating, drinking and swallowing difficulties (dysphagia) Advocating on behalf of the patient in order that their communication and feeding, eating, drinking and swallowing needs are being met when they are not in a position to do this independently Liaising with medical, nursing and allied health & social care professionals, concerning overall treatment goals, prognosis and management to facilitate team discharge planning ORTHOPTIST The role of the Orthoptist involves the diagnosis and non-medical management of strabismus (squint), eye movement disorders, performing and interpreting visual fields. Eye movement disorders and visual field defects can impact on the effectiveness of rehabilitation therapy in regaining mobility and activities of daily living (SIGN stroke guideline ). Patients with neurological conditions need to be assessed by an Orthoptists when/if they develop ocular symptoms such as blurred vision or Diplopia (double vision). Unless complaining of a specific ocular problem Orthoptists are not routinely involved in the patient pathway. 89 Scottish Intercollegiate Guidelines Network (SIGN). Guidance 118;

80 Assessment and management of patients can be delivered in a variety of settings: from on the ward, in acute care to outpatient clinics for rehabilitation. An Orthoptic assessment can provide the patient, the medical team and carers with a clear explanation of the visual defects that have arisen and this often aids rehabilitation 90. All qualified Orthoptists have being trained to assess, diagnose and treat patients with a wide variety of neurological conditions. Assessment of patients can occur at any stage of the disease based on individual presentation / need. Best practice states that assessment and management of a patient should be performed as soon as possible after an acute event. To investigate any possible ocular defects, for example Stroke, patients should be assessed in the acute setting on the ward, while headache will only need to be assessed if symptomatic. In scenarios where more junior members of the team are providing the service a supervisory process should be available. Access to orthoptic assessment is not consistent throughout the country, as several hospitals have no orthoptic department. Many departments only have part-time staff. This will obviously impact on a patients care, possibly having to travel to a different hospital to receive treatment thus leading to longer waiting lists. PODIATRIST (Professional body has been contacted - waiting feedback) Clinical specialist THERAPY PROFESSIONS GRADING STRUCTURE The clinical specialist provides expert clinical leadership and expertise for complex case management using evidence-based practice and advanced clinical judgement acquired through professional experience. The Clinical Specialist uses advanced and specialised knowledge to critically analyse, evaluate and synthesise new and complex ideas that are at the forefront of neurology and rehabilitation. They are involved directly or in collaboration with others in research that evaluate current practice and implement service initiatives leading to new knowledge -base and disseminating findings both locally and in wider health care arena. They have an important role in strategic planning and developing new pathways of care. Following on from the recommendations of the Expert Group on Various Health Professions (2000) and the subsequent agreement between the HSEA and the 90 Freeman CF. Collaborative working on a stroke-rehabilitation ward. Parallel Vision (British and Irish Orthoptic Society);

81 IMPACT union the grade of clinical Specialist was introduced in 2001 with an initial allocation of 65 posts nationally. The HSEA (2000) outlined 10 points regarding the introduction of this initial allocation including that a referral pathway should be established allowing for a regional remit to these posts in terms of their advisory, evaluation and research roles. A HSE review of the Clinical Specialist Therapist Grade (2007:27) concluded that the appointment of the clinical specialist grade has had a positive impact on the Irish Health Service including the establishment of appropriate clinical protocols, development of evidenced based practice & an expert referral source, improved education and research within the professions. This review also, outlined 39 recommendations for the future development of this clinical grade to ensure optimal patient outcomes, patient centeredness and improved patient access in line with national priorities and care group needs. There is precedent for advancing roles within the therapy and wider HSCP professions. In the UK, following Agenda for Change (1999) HSCP advanced practitioner and consultant grades have become integral to the development of appropriate, sustainable and affordable services, with tasks shifting between professions and non-medical leadership of care pathways emerging. Examples include physiotherapy-led musculoskeletal services and spasticity clinics, podiatric surgery being undertaken by consultant podiatrists as part of an integrated orthopaedic team. There are consultant speech and language therapist in highly specialist areas such an augmentative and alternative communication aids (AAC), dysphagia and speech & language therapy led voice clinics with such posts being graded at band 8 (a-c). In the UK there are occupational therapists working as advanced practitioners within stroke pathways at the interface between acute and community care. Here communication and clinical reasoning at an advanced level are significant in ensuring that the patient is guided appropriately in the right direction at the right time in the pathway. In Ireland, the first 24 clinical specialist physiotherapists with advanced practitioner remit were appointed in 2010 as first contact practitioners to triage Orthopaedic and Rheumatology waiting lists (MSK triage programme). Senior therapist The senior therapist provides high level comprehensive assessments and interventions as part of a multidisciplinary team approach. Senior Therapists plan and implement individual and group interventions, discharge, follow up and onward referrals. They have and experience in working with clients with rehabilitation needs and provide training and support to staff and assistant therapy health contribute to the development of evidence-based practice; apply research outcomes to improve the delivery of service and ensure best use of resources Graduate/Entry level therapist The entry level therapist provides assessments and interventions in collaboration with the senior therapist and clinical specialists. Entry level therapists translate research evidence and use it to implement effective interventions; prepare and present appropriate information to the senior therapists to support operational and strategic planning. They have profession specific knowledge and skills which contribute to the rehabilitation process 81

82 Assistant The Expert Group on Various Health Professions (2000:15) report the introduction of Assistant health and social care professional/therapy assistant (to be decided) has the potential to provide the very necessary practical support for health and social care professionals in the delivery of an efficient and effective service. Assistant health and social care professionals, under the supervision of appropriate staff grade, senior and clinical specialist health and social care professionals can support implementation and monitoring of individual and group interventions. Minimum Staffing Provision for specialist in-patient rehabilitation services (BSRM National Guidelines for rehabilitation following acquired brain injury) Level 1 Specialised In- Patient Rehabilitation Service for 20 beds Level 2 specialised In- Patient Rehabilitation service for 20 beds Nurses, including specialist nurses WTE WTE Physiotherapists 5-6 WTE 4 WTE Occupational Therapists 5-6 WTE 4 WTE Speech & Language Therapists WTE WTE Clinical psychologist 2-3 WTE WTE Social Worker WTE WTE Dietician WTE WTE ANCILLARY PROFESSIONALS AND PERSONNEL Healthcare assistants Orthotics Therapeutic recreation service Rehabilitation assistants Sports therapy Orthoptics Ophthalmology 82

83 While these standards were developed for managing a population of patients with acquired brain injury, the same standards could be said to apply for all rehabilitation facilities providing complex specialist in-patient rehabilitation at either Level 1 or Level 2. Level 2a services will require staffing levels somewhere between those of level 1 and 2 services depending on the complexity of their mixed caseload. Similar standards exist for level 3 specialist rehabilitation services, i.e. community based rehabilitation service. These standards vary across diagnostic groups however focusing on the neurorehabilitation and prosthetic/orthotic standards, the table below outlines applicable average ratios for every 10 patients. Per 10 patients Physiotherapists Occupational Therapists 0.85 WTE 1.0 WTE Speech & Language Therapists 0.5 WTE Clinical Psychologists 0.4 WTE Social Worker 0.4 WTE TECHNOLOGY The programme will have an important role in promoting the adoption of both mainstream-everyday technology and assistive technology to improve patient outcomes and coordinating opportunities for the use of these technologies both at national and regional network level. Assistive technologies provide solutions to many challenging aspects of neurological and POLAR rehabilitation care, the use of electronic assistive technologies (e.g. communication devices, environmental control systems and personal computers, tablets/smart phones) by service users can lead to increasing independence and greater involvement and re-integration into home, school/workplace and community. Global increasing digital literacy demands that these technologies be seamlessly integrated into rehabilitation. Technology needs to be integrated into in-patient rehabilitation, discharge planning and outpatient Services. Services-users need opportunities to experience such technologies while being supported by skilled therapists to limit abandonment and associated unnecessary expense and to facilitate seamless community participation. The inclusion of technologies requires involvement and up-skilling of service providers at all levels. Increasing demands for neurological and POLAR rehabilitation may require the provision of rehabilitation in the home or in local communities. This is possible through the use of Tele-medicine. 83

84 Telemedicine provides the opportunity to create virtual teams that can educate, train and support local clinicians. This type of service allows service users to carry out a programme of neurological and POLAR rehabilitation led by specialist experts, in their own homes, while being monitored and assessed virtually. Benefits of Telemedicine include: reduction of hands-on therapy time; improved monitoring of improvement; and the provision of sustainable and flexible services. Interagency research collaborations also offer scope for improved service provision through development of new technologies (for example the TRIL Technology Research for Independent Living 91 xxxiv. 91 TRIL, Technology Research for Independent Living), Centre, involving Intel, TCD, UCD and NUI Galway, 84

85 13. GOVERNANCE CLINICAL GOVERNANCE WITHIN THE CSPD The Clinical Strategy and Programmes Division (CSPD) was established in 2009 to improve and standardize patient care by bringing together clinical disciplines, within more than 30 clinical programmes, to enable development of standardized pathways of care and share innovative solutions. It is undergoing a process of growth and reform to allow greater integration with HSE operational divisions. The RMP is one of those programmes and is a clinician-led initiative between the HSE CSPD, Royal College of Physicians of Ireland (RCPI), the Irish Association of Directors of Nursing and Midwifery (IADNAM), the Therapy Professions Committee (TPC) and the Irish College of General Practitioners (ICGP). The CSPD has established common clinical governance structures on a national and regional basis for all programmes. RMP governance is organised and delivered in accordance with the recommendations of the HSE Quality and Patient Safety Division publications on clinical governance. Effective governance recognises the interdependencies between corporate and clinical governance across services and integrates them to deliver high quality, safe and reliable healthcare. Clinical governance is required across the continuum of care (statutory and voluntary hospitals/services, primary care service and area management). The achievement of good clinical outcomes for patients is dependent on good clinical governance arrangements. Clinical governance is described as the system through which healthcare teams are accountable for the quality, safety and experience of patients in the care they have delivered. FIGURE?: GUIDING PRINCIPLES FOR CLINICAL GOVERNANCE 85

86 In practice this requires health staff to specifying the gold standard clinical standards against which one s practice is benchmarked then compare one s own measurements with the gold standard. Where practice is deficient a quality improvement plan should be agreed and implemented. Along with leadership and accountability clinical governance means having the right structures and processes in place to achieve quality and safety of services. The term Governance for Quality and Safety is now preferred rather than clinical governance. Ten principles for good clinical practice in the Irish context have been developed by the HSE. It is proposed that each decision (at every level) in relation to clinical governance development should be tested against these principles: Patient first Based on a partnership of care between patients, families, carers and healthcare providers in achieving safe, easily accessible, timely and high quality service across the continuum of care Safety Proactive identification and control of risks to achieve effective efficient and positive outcomes for patients and staff Personal responsibility Where staff, patients and the population take personal responsibility for their own and others health needs. Defined authority The scope given to staff at each level of the organisation to carry out their responsibilities Clear accountability A system whereby individuals, functions or committees agree accountability to a single individual Leadership Motivating people towards a common goal and driving sustainable change to ensure safe high quality delivery of clinical care. Inter-disciplinary working Work processes that respect and support the unique contribution of each staff member in the provision of clinical care. Inter-disciplinary working focuses on the interdependence between individuals and groups in delivering services. Supporting performance Managing in a supportive way, in a continuous process, taking account of clinical professionalism and autonomy in the organisational setting Measurement of the patients experience being central in performance measurement (as set out in the National Charter, 2010) Open culture A culture of trust, openness, respect and caring where achievements are recognised; open discussion of error is embedded in everyday practice and communicated openly to patients Continuous quality improvement A learning environment with a comprehensive programme of quality improvement programmes 86

87 Clinical governance is not a separate function but an integral component of governance arrangements. The vision and objectives of the National Clinical Programmes are summarised in a checklist. The objective is not to just to implement models of care for standardised heart failure, stroke or other clinical services. It is also to implement them in a way that ensures that they are effectively managed. Effective management does not occur unless there is clarity on who is accountable for each aspect of clinical service delivery and equally that there is clarity on how that person is held accountable and by whom. All models of care and pathways developed by clinical programmes must provide clarity on governance and accountability. The RMP advocates the use of the QPSD assurance check lists within all organisations providing specialist rehabilitation services. An assurance check is intended as a guide for reviewing the structures and processes used in achieving good clinical governance outcomes. Use of the checklist will be of benefit to all organisations as it will assist in establishing baseline compliance, embedding good clinical governance across the continuum of care, leading in the delivery of quality safe patient care, contributing to the readiness to implement regulatory standards and preparing for the introduction of a licensing system committed to by the Government 92. A clinical governance framework has been developed to demonstrate the fundamentals of clinical governance: Concept Governance for Quality and Safety Domain Structure Process Outcome Senior Management Team Quality and Safety Committee Clinical Leadership Accountability spine Context Quality and performance indicators Learning and sharing information Patient and public involvement Risk management and patient safety* - incidents and complaints Clinical effectiveness and audit Staffing and staff management Information management Capacity and capability Individual Practitioner Service / Department / Division Senior Management Team Patient care Patient experience Staff experience Service improvement The clinical governance of services recommended by the Rehabilitation Medicine Programme should also be organised with reference to the Health Information and Quality Authority National Standards for Better Safer Health Care (June 2012) 13 with 92 Adapted from Report of the Quality and Safety Clinical Governance Development Initiative; Sharing our Learning, QPSD,

88 particular reference to Theme 5 Leadership, Governance and Management. Within this theme, there are 11 standards that should be applicable to all services offering patient care, inclusive of in-patient, out-patient and community services. These standards are; 1. Clear accountability arrangements to achieve the delivery of high quality, safe and reliable healthcare 2. Formalized governance arrangements for assuring the delivery of high quality, safe and reliable healthcare 3. Publicly available statement of purpose that accurately describes the services provided, including how and where they are provided 4. Clear objectives and plans for delivery of high quality, safe and reliable healthcare services 5. Effective management arrangements to support and promote the delivery of high quality, safe and reliable healthcare services 6. Culture of quality and safety promoted 7. Personal and professional responsibility for the quality and safety of services provided promoted 8. Systematic monitoring arrangements for identifying and acting on opportunities to continually improve the quality, safety and reliability of healthcare services 9. Formal monitoring of services provided 10. Compliance with relevant Irish and European legislation 11. Adherence to standards, alerts, recommendations and guidance as issued by regulatory bodies. NATIONAL STANDARDS FOR SAFER BETTER HEALTHCARE, HIQA (JUNE 2012) FIGURE 4: THEMES FOR QUALITY AND SAFETY 88

89 PROGRAMME GOVERNANCE STRUCTURE Programme Clinical Lead supported by clinical and operational teams at a central and programme level. The clinical lead has accountability, responsibility and authority for the development of the RMP Clinical Advisory Group: Physician group, representing the Royal College of Physicians, Ireland. The Programme is also supported by the HSE s Director of Nursing/Midwifery Reference Group and the National Therapy Managers Advisory Group (under the auspices of the Therapy Professions Committee). Working Group: Multidisciplinary groups, representing professional bodies with expertise, and patient representatives. This group includes representatives from Public Health, Nursing, and Health and Social Care Professions. Regional Lead Physicians: For the RMP, six Consultants in Rehabilitation Medicine will provide regional representation, working closely with the National Clinical Lead. GENERAL PRINCIPLES The RMP recommends the establishment of managed clinical rehabilitation networks (MCRNs) for specialist neurological and limb absence rehabilitation services. Organised care will be developed based on a Hub and Spoke Model. It is proposed that services should be provided through a national system of a tertiary centre with regional MCRNs, each serving a population of about one million people. This will provide coordination and support for national, regional and community development of services and is described in detail in section 4. 89

90 This model was developed to provide structure for the delivery of rehabilitation services, to be a vehicle for the strategic direction for service planning and to provide a framework for evaluation of care across the continuum of care delivery settings including acute in-patient, post-acute in-patient and ambulatory care settings. Appropriate management and governance arrangements will be put in place to ensure that the framework proposed is consistently implemented throughout the country. The implementation of the programme will be tracked through the monitoring of key performance measures via an IT supported data collection system. INTEGRATION OF CLINICAL AND CORPORATE GOVERNANCE Corporate support in HR, finance, communications and project management is achieved through the CSPD. Implementation of Programme solutions including guidelines, care pathways and care bundles will be delivered in each region with collaboration of all relevant stake holders including National Director of the Social Care Division, Group Clinical Lead of the Social Care Division, Hospital Group CEOs and senior representative of Community Health Organisations (CHOs). Financial management and guidance for the Programme will be provided and monitored through the CSPD. GOVERNANCE RELATED TO MODEL OF CARE IDENTIFICATION & ESTABLISHMENT OF MCRNS There will be a national hub (NRH) and six regional, population based centres. There will be six regional MCRNs for general specialist rehabilitation, predominantly neurological conditions. There will be two additional specialty networks: POLAR and Spinal Cord Injury (SCI). There will be clinical leadership from a designated rehabilitation medicine consultant with formal links to NRH, the national hub. LEADERSHIP ROLES FOR SERVICE DELIVERY It is intended that local clinical governance will be provided through the formation of Managed Clinical Rehabilitation Networks (MCRNs) as referred to above and will be delivered through the MCRN Clinical Lead (Consultant in Rehabilitation Medicine), MCRN Manager with a clinical background) and an administrator. 90

91 the promotion of consistency and quality of service throughout the care pathway and the bringing of service user and provider views to the service planning process... developing services which are truly person-centred, delivered locally wherever possible but specialised where need be (NHS HDL (2007) 21. Scottish Executive Health department) FIGURE? VISUAL REPRESENTATION OF MANAGED CLINICAL REHABILITATION NETWORK An overarching steering group, with clear terms of reference, will comprise of key regional stakeholders from a range of medical, nursing, HSCPs, patient advocate groups, and service users and providers, will oversee development and management of networks and support MCRN Clinical Leads and MCRN Managers. The regional hubs will have clinical and consultant leadership from a designated specialist in rehabilitation medicine, supporting existing neurologists and specialists in rehabilitation medicine. Each MCRN will include Acute rehabilitation facilities (i.e. acute hospitals), The National Rehabilitation Hospital (NRH) as the national hub (complex specialist rehabilitation unit), Population based Regional rehabilitation Units (RRUs) (specialist rehabilitation units) as the regional hubs 91

92 Specialist community rehabilitation teams (CRTs), which will meet the needs of the patient groups who need specialist rehabilitation care (the proposed roles of each service is described in detail in section 4.2 Primary care teams proving non-specialist rehabilitation services to service users within the community. Each region will determine what are the precise resources available to the area and work with the different service providers to ensure that these resources are reconfigured in teams that retain specialist and disease-specific expertise, but also broaden their collective remit to meet the needs of all those with rehabilitation needs. This reconfiguration will be directed by the national lead of disability services within the HSE social care division. The primary care teams will play a role consistent with the expertise and workforce available to them. MCRN Manager and Clinical Lead posts have key roles in developing and maintaining good communication and working relationships with HSE Divisions and partner organisations. The regional MCRNs will make use of existing structures and processes and will take into account the views of stakeholders in their network and the particular needs of the population in the network in so far as is appropriate while ensuring consistency with the national programme, legislation and national guidelines It is intended that there will be identified pathways between hospital networks, voluntary agencies and community providers (statutory and voluntary). 92

93 14. EDUCATION, TRAINING AND RESEARCH Education and training will be crucial to the successful implementation of this model of care and will be addressed at national and regional level via the programme and MCRNs. The national tertiary specialist unit will serve a recognised role in education, training, research and development in the field of specialist rehabilitation. It should also act as a resource for advice and support to local specialist as well as general and community rehabilitation teams in the management of patients with complex disabilities. PROFESSIONAL VOCATIONAL TRAINING MEDICAL EDUCATION UNDERGRADUATE Since 2006 the National Rehabilitation Hospital has developed formal teaching agreements with all three Dublin Medical Schools (UCD, TCD and RCSI) and now receives more than 400 medical students each year for formal tuition in structured practical and research modules. POSTGRADUATE Higher specialist training positions in Rehabilitation Medicine are governed by agreements between the HSE National Doctor s Training and Planning Unit, and the Irish Committee for Higher Medical Training (ICHMT) within the Royal College of Physicians of Ireland (RCPI). The number of those positions is limited practically by the availability of training in only one specialist centre in Ireland. HEALTH AND SOCIAL CARE PROFESSIONS While training on all conditions which may present in a specialist rehabilitation setting would be ideal, what is more essential is training on the rehabilitation process. This should be a core part of undergraduate and postgraduate training for all multidisciplinary staff. Education and assisting the education of others will be part of the role of most disciplines and this will happen both formally through supervision, inservice training but also informally as team members work together. A competency framework for HSCPs will be developed in collaboration with the RMP. This will outline specific competencies that will be considered essential requirements for staff working in the area of specialist rehabilitation. Currently the only training centre offering placements in complex specialist neurorehabilitation is the National Rehabilitation Hospital. Development of regional specialist rehabilitation service will allow for an increase in the number of training HSCP s facilitated with both undergraduate and post graduate should increase significantly. NURSING EDUCATION 93

94 An experienced, dedicated nursing workforce with competencies in caring for patients with specialist rehabilitation needs is required to ensure the highest quality of care for patients. Senior nurses need to be equipped with management and leadership skills to support a culture of ongoing education, training, practice and professional development. Post graduate training in rehabilitation is advised. In advance of this, at a minimum, a competency framework for nurses working in rehabilitation should be implemented. Existing competency frameworks such as the Association of Rehabilitation Nurses Competency Model for Professional Rehabilitation Nursing should be considered for implementation. This framework considers four domains of competency; Domain 1: Nurse led evidence-based interventions Domain 2: Promotion of Health and successful living Domain 3: Leadership Domain 4: Interprofessional care Appropriate continuing medical education (CME) and continuing professional development (CPD) training must be encouraged to promote provision of safe and effective care for patients presenting with specialist rehabilitation needs. RESEARCH High quality research performed by the multi-disciplinary team can be considered a significant quality indicator for any health service. Such research should be directed towards improving safety and care for the beneficiaries of the service locally, regionally and nationally. It is felt that patients should be offered the opportunity to be involved in research projects that have aims of: 1. Promotion of health research to build evidence based practice in the field of rehabilitation 2. Development of research links between health care providers and academic researchers 3. Evaluation of new and existing health technologies 4. Development of research that reflects clinical realities 5. Development of research that reduces the physical, psychological, and financial burden of care and enables people to fulfill their potential for health. The proposed model of care recognises the critical need for the design and delivery of specialist rehabilitation services to be informed by ongoing research to inform best practice. There will be an important role for the programme at national level to disseminate the findings and recommendations of this research to staff working at all levels in the provision of specialist rehabilitation and work collaboratively with our local health care providers in order to support research development and promote the development of relevant and forward thinking rehabilitation practices that will improve opportunities available to people with rehabilitation needs. 94

95 15. PROGRAMME METRICS AND EVALUATION REVIEW AND EVALUATION PROCESS FOR THE PROGRAMME Consultation for and about the RMP is achieved through close collaboration with the CSPD and other National Divisions (e.g. Quality and Patient Safety) within the HSE. Programme review and evaluation is conducted on an annual basis through the monitoring and assessment of key performance measures for the Programme as well as being guided by Key Result Areas contained within the HSE s National Service Plan annually. Any documents that are produced from the programme are open for wide consultation and the views that are presented back to the Working Group are analysed and used to inform our work. OUTCOME MEASURES All patients engaging in a rehabilitation programme should have at least one agreed outcome measure assessed on admission and discharge from the programme. The outcome measure used will depend on the patient s condition and disability, their rehabilitation needs and the nature of their programme. Validated outcome measures should be used wherever possible. 93 Outcome measures should be selected in relation to the individual goals for rehabilitation and success must be viewed in relation to pre-morbid function. Outcomes are better compared if all centres/rehabilitation services use similar outcome measures. Considering the range of conditions and the number of teams providing specialist rehabilitation services, it is not feasible or appropriate to recommend the adoption of one outcome measure for use across all conditions and all levels of specialist rehabilitation. A suite of outcome measures should include: Impairment measures Global activity measures Participation measures Assessment of emotional status The BSRM has developed a basket of outcomes measures. The proposed basket represents a selection of the scales that are: Scientifically evaluated In routine use in clinical practice in the UK (by at least 10 units), or recommended for routine use through guidelines/standards published by the BSRM. The basket is periodically reviewed by the BSRM Research and Clinical Standards Committee. 93 Turner Stokes, L. Audit and routine monitoring of clinical quality. Clin Rehabil 2002; 16 (suppl1):

96 Additional measures may be added if they meet criteria outlined above. 94 For full details of outcome measures included in the BSRM basket please see figure 14.1 below The RMP recommends alignment with standards for rehabilitation outlined by the BSRM in the absence of a similar body in Ireland. The BSRM has identified 5 strategic areas for development; 1. To promote the development of the understanding and management of acute and chronic disabling diseases and injuries, and their consequences for the individual patient, their carers, their medical and other attendants, and society at large 2. To promote the specialty of Rehabilitation Medicine, being defined as the application of medical skill in the diagnosis and management of disabling disease and injury of whatever cause and affecting any system of the body 3. To advance the education of health and other professionals and the general public in the area of disability 4. To develop and promote standards for clinical care and professional working in the specialty and mechanisms for audit, appraisal and review to ensure that those standards are maintained 5. To promote and facilitate research in the field of rehabilitation to support the evidence base which underpins good clinical practice in the specialty. It is hoped that over time, the National Steering Committee of the RMP will be in a position to provide this role in Ireland, however, in the interim, the evidence based guidelines and recommendations published by the BSRM will provide guidance/reference for the RMP. While selection of appropriate outcome measure is the role of the treating clinicians, it is recommended that the measure chosen initially is repeated as the patient progresses through the varying levels of specialism. Additional measures can be used as the patient moves through the continuum, however re-evaluating the patient using initially chosen measures will lead to greater reliability and will assist in documenting the patient s progress. 94 Measurement of Outcome in Rehabilitation, The British Society of Rehabilitation Medicine s Basket of Measures, July

97 Category Recommended and widely used Alternative options Neurological impairment and spinal Cord Injury classification (ASIA) (100) Frankel Scale (101) Motor function tests Generalised motor impairment Motricity Index (2) Motor Assessment Scale (3) Mobility 10m walk (4) Rivermead Mobility Index (6) Functional ambulation categories (7,8) Mobility in Amputees Haroldwood and Stanmore Mobility grades (5) SIGAM mobility grades (9) Upper limb function Nine-hole peg test Frenchay arm test Global disability/activities of Daily Living (ADL) Barthel index UK FIM+FAM Health Assessment Questionnaire Dependency and care hours Northwick Park Dependency Score Northwick Park Care Needs Assessment Extended ADL Frenchay Activities Index Nottingham eadl scale BICRO-39 General health General Health Questionnaire Pain Numbered rating or visual analogue scale Oswestry Low Back Pain Disability Questionnaire McGill Pain Score Depression Yale Question: do you often feel sad or depressed? Graphic rating scale eg (DISCs) Signs of Depression Scale (SDSS) Geriatric Depression Scale Hospital Anxiety and Depression Scale (HADS) Beck Depression Inventory (BDI-11) Carer Burden Caregiver Strain Index FIGURE 14.1: BSRM BASKET OF RECOMMENDED OUTCOME MEASURES 97

98 DATA COLLECTION AND KEY PERFORMANCE INDICATORS Performance monitoring is a continuous process that involves collecting data to determine if a service is meeting desired standards or targets. It is dependent on good quality information on health and social care which can only be achieved by having a systematic process to ensure that data is collected consistently. This is a particular challenge for the RMP considering; The number of conditions presenting which require intervention The number of sources of referrals The number of sites across which rehabilitation is delivered The movement of patients amongst these sites The number of divisions within which services are delivered The long term nature of rehabilitation services The identification of key performance indicators (KPI s) within the delivery of rehabilitation services is not the challenge in itself. There are many targets which the RMP believe could ensure better patient outcomes and service delivery, however it is the collection of data to support these KPI s which is the challenge. The major data collection system for in patient activity within HSE and Voluntary Hospitals is HIPE. While this system will allow us identify the number of patients admitted to acute hospitals, their diagnosis, their length of stay and discharge destination, the only measure of quality which can be inferred from this data is in relation to discharge destination i.e. whether the patient is discharged home, to a long term care facility or to rehabilitation. This is a crude measure of outcome. Ensuring the data generated from HIPE is comprehensive and all-encompassing can also be a challenge given the wide range of conditions requiring specialist rehabilitation. HIPE does not currently capture services provided outside of hospitals, nor does it reflect therapy services provided or referrals made. Progress made over the course of admission is also not recorded nor is service user satisfaction. The result of this is that in relation to rehabilitation services, the focus is on only one specific aspect of the rehabilitation journey and does not look at the service as a whole across the continuum of care nor do they give the programme any real direction in relation to service or quality improvement. While the National Tertiary centre of complex specialist rehabilitation services collects a comprehensive suite of data and outcome measures, given the capacity of this service, this data is only collected on a relatively small cohort of patients treated in this facility. It is also collected in isolation as such data is not collected by either referring agents or community service providers managing the patient in the long term. With the establishment of additional units providing specialist rehabilitation services and the managed clinical rehabilitation networks proposed, the implementation of a comprehensive data collection system will be a central. It will be integral to 98

99 measuring the successes and challenges of these services. A systematic approach to collecting overall data relating to rehabilitation services is required. In terms of the continuum of care, it is necessary to know about process data (i.e. what is being done where, by whom and treatment outcome). At present, such data is not available. The task of determining the gap between Rehabilitation Services provided in Ireland and internationally recognised best practice is significant, particularly in relation to quality of service and outcomes. This will be an essential requirement of the programme the health care system moves towards a system of costing bundles of treatment in preparation for universal health insurance. The data requirements of the RMP include: Indicator Data requirement Quality Reduce discharge to nursing home Discharge destinations for all patients being discharged from specialist rehabilitation services Rehabilitation provided in the most appropriate care setting to meet patient needs Dependency scores for admissions to all rehabilitation facilities compared with remit of that service i.e. CSRS*, RSRS or CRT Rehabilitation provided by multidisciplinary care teams Acute Rehabilitation information not captured by HIPE, consider add on screen as per stroke register Data register exists in CSRS Data register required in RSRS & CRT Decrease in adverse events i.e. interrupted services, falls Data register required * Early transfer to specialist rehabilitation services Consider add on screen to HIPE which records date of referral to specialist rehab and date of transfer * Equitable access to specialist rehabilitation service Data register which gathers waiting time from referral to admission in all regions* Defined and tracked outcome measurement for specialist rehabilitation services This will need to record compliance with completion of outcome measures in addition to changes in measures* 99

100 Access 80% access to rehabilitation medicine assessment within 2 weeks of referral This will need to be measured in acute hospitals with major trauma centres. An add-on screen for HIPE would be required. 80% access to admission to specialist inpatient rehabilitation beds within 60 days of referral This data is currently gathered in the CSRS, however, will need to be incorporated into a data collection database when additional specialist inpatient facilities are operational. Reduction in the number of patients waiting to access CSRS by 20% 95 Waiting list data is collected in the CSRS which includes numbers of patients waiting on each service as well as days waiting from date of receipt of referral (once patient has been triaged and accepted for in-patient admission by Consultant in Rehabilitation Medicine) Reduction in delayed discharges from complex specialist rehabilitation service to 8% 96 The CSRS enters information on delayed discharges into national database. Regional SRS would also need to capture this data to establish both baseline and identify appropriate service improvement targets. Cost Reduced length of stay (LOS) in acute hospital by 5 days To be recorded from HIPE, but will need to be inclusive of all appropriate conditions Reduced LOS in CSRS by 5 days * Data collection exists in national tertiary centre however this system is in isolation and does not interface with other existing hospital systems Reduction in days lost to delayed discharges in specialist rehabilitation services * Ditto 10% reduction in readmission and attendance at ED/AMAU (admission based on primary condition for which specialist service was required) Currently there is no system for collecting this data. Data on patients admitted to ED/AMAU is recorded based on primary admission only Reduction in inappropriate discharge destinations As per above PERFORMANCE MANAGEMENT 95 This cannot be achieved until additional rehabilitation facilities are operational 96 Ibid 100

101 A minimum data set is being developed and will be available on the ESRI HIPE Portal for completion by each SGS. Performance Indicators 1. Inpatient hospital bed use by those aged 65 and over: 1.1. Number of hospital in-patient discharges ( 65; 65-74; 75-84; 85) 1.2. Average length of hospital stay (ALOS) ( 65; 65-74; 75-84; 85) 1.3. Total in-patient bed days ( 65; 65-74; 75-84; 85) 1.4. Percentage of in-patients in hospital for 12 weeks ( 65; 65-74; 75-84; 85) 1.5. Bed days until ready for discharge 1.6. Bed days before and after CSAR form completed for long term care Rationale: Number of discharges: The population aged 65+ is ageing at a rate of ~3% per annum (CHECK); the model of care will reduce avoidable admissions, supplementing the benefits of other acute care programmes and primary care initiatives. Average Length Of Stay (ALOS): An inpatient Specialist Geriatric Service can benefit in a shorter ALOS in comparison to patients under non-geriatricians ref SVUH doc. Benefits can be maximised by targeting those with complex care needs; a higher proportion of such patients are in the oldest age groups. Bed days: Total bed days reflect total discharges and ALOS and provide a composite measure of hospital inpatient bed use by older people. In hospital for 12 weeks: The majority of older people are discharged in less than 4 weeks. A small proportion with complex care needs have long LOS and contribute disproportionately to total bed days. The proposed model of care will maximise outcome and facilitate shorter LOS for such patients. Bed days until ready for discharge: will separate the bed days required for clinical care from any days added due to delays in discharge. Bed days after completion of CSAR form: delays impact on patient flow throughout the acute care setting and disproportionately affect beds dedicated to care of older people. 2. Discharge destination: Number and age-specific percentage of older those aged 65 and over admitted from home and discharged to nursing home or to long stay care. Rationale: The Cochrane Collaboration Review (2011) concluded that comprehensive geriatric assessment and treatment by a specialist geriatric service increases a patient s likelihood of being alive and being discharged to their own home. Comment: HIPE records residence on admission and also location to which discharged. This data is incorrect and unreliable at times. We need to verify the accuracy of coding re residence before admission and location to which discharged. This may be most appropriately done through HIPE portal. 101

102 3. Development of dedicated Care of the Elderly services: 3.1. Number of in-patient units in acute hospitals for assessment, treatment and rehabilitation of elderly people 3.2. Number of in-patients treated in units specialising in the care of older people with complex care needs 3.3. % of in-patients treated in units specialising in the care of older people with complex care needs Rationale: The Cochrane Review concluded that benefits of CGS were maximised when older patients with complex care needs were cared for in specialist units. 4. Total number of patients assessed by the SGS; breakdown by care location ED, AMU, DH, long stay care 4.1. Rationale: a measure of implementation of model of care 5. Readmission rate ( 65; 65-74; 75-84; 85) 5.1. Rationale: A high proportion of hospital admissions in those aged 65+ are unscheduled. The proposed model of care will improve outcomes in those with complex care needs. Increased integration and better communication between care settings will support admission avoidance and reduce readmission rates Comment: will need to collect in addition to current HIPE data HIPE definitions of readmission: o Emergency readmission: this is an unscheduled readmission following previous spell of treatment in same hospital and relating to the treatment or care previously given. o Elective readmission: patient admitted electively to continue ongoing treatment or care. 6. Total Emergency Department time for all new patients ( 65; 65-74; 75-84; 85) Rationale: The elderly are at greater risk of delays in care due to complex needs and the older elderly are at even greater risk of experiencing delays and adverse effects of delays. 7. Define new patients who were not in-patients within the past year 8. Living at home at 6 months will know from PCT doing follow up 9. Living at home at 12 months will know from PCT doing follow up 10. Mortality at 6 and 12 months (Death or dependence) 11. Institutionalisation at 6 and 12 months (i.e. not being at home) 12. Activities of daily living 13. Cognitive function 14. Audit and Review 15. Performance Reporting 102

103 16. COMMUNICATIONS CONSULTATION AND INVOLVEMENT OF SERVICE USERS The importance and benefits of user involvement within healthcare is widely accepted and there is a wealth of available evidence which indicates that the unique perspective of users can prove to be a valuable resource when it comes to determining what constitutes good quality care 97 xxxv. The World Health Organisation s international conference in primary care in 1978 explicitly stated that people have a right and a duty to participate individually and collectively in the planning and implementation of their healthcare. The RMP from its inception has sought to be as inclusive as possible in terms of geography, service user organisations and individual service users. The RMP Working Group has representation from the Neurological Alliance of Ireland, the national umbrella organisation for groups representing views and concerns of those affected by neurological conditions. The RMP facilitated a World Café Conversation with a view to drawing on the knowledge and opinions of many key stakeholders including service users and service user representative groups in a collaborative way. This was felt to be an innovative forum for exploring ideas and assumptions together. The information gathered from this event was used to assist the programme in identifying both strengths and weaknesses within the current system, and also potential changes which were then explored. Recurrent themes emerged from feedback which included Acknowledgement of the dedication of staff in the service Peer support Supportive system once you are in the system Lack of consistency/inequitable services throughout the country Lack of case management Fragmented services Poor use of resources Lack of availability of resources REVIEW Section to be added EVALUATION Section to be added 97 Smith CH, Armstrong D. Criteria derived by government and patient for evaluating general practitioners. BMJ 1989 Aug 19;299(6697):

104 17. APPENDICES CLINICAL CARE PATHWAYS APPENDIX 1 POLAR PATIENT PATHWAY 104

105 APPENDIX 2 SPINAL PATIENT PATHWAY 105

106 106

107 APPENDIX 3 ABI PATIENT PATHWAYS 107

108 108

109 APPENDIX 4 TRANSITION CHECKLIST (PAEDIATRIC TO ADULT) Area Objectives Achieved Self-advocacy Independent Health care behaviour Sexual health 1. Patient able to describe their condition 2. Patient asks appropriate questions in clinic 3. Patient is able to access information on their condition/disability 4. Patient can describe available adult care options 5. Patient understands differences between paediatric and adult care. 1. Patient understands what medication they are on and is able to discuss potential side effects 2. Patient knows how to access help in an emergency situation 3. Patient understands principles of confidentiality 4. Patient maintains a personal health care record book to keep track of appointments, health information, medication, treatments and health care providers 5. Patient has met with adult consultant/specialist nurse 1. Patient understands changes associated with puberty and the implication of their condition on pubertal development 2. Patient s parents have been given information about puberty, sex and sexuality 3. Discussion regarding patient s sexual capability, fertility, safe sex and any associated genetic issues. 109

110 Psychosocial support Educational and vocational planning Health & lifestyle 1. Parent s given an opportunity to discuss any concerns regarding transition or the future 2. Patient understands benefits of friends and supportive relationships 3. Patient able to set positive goals for their future 4. Any assistance for personal care identified 1. Patient understands restrictions that may affect educational and recreational activities 2. Discussion regarding employment and/or educational options 3. Information regarding health care benefits available 1. Patient understands health implications of smoking, alcohol and recreational drug use 2. Discussion regarding body image and any concerns about weight gain or loss 3. Patient has had opportunity to discuss any feelings of low mood, depression, or problems adjusting to or managing their condition 4. Patient is aware of contact information for any help or advice needed going forward. 110

111 18. REFERENCES i National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland (DoHC 2011) accessed 20 th November 2014 ii The Future for Neurological Conditions in Ireland; 2010; The Neurological Alliance of Ireland %20conditions%20in%20Ireland.pdf accessed 19 th November 2014 iii Cheville AJ, Basford JR. Post-acute care: reasons for its growth and a proposal for its control through the early detection, treatment and prevention of hospitalacquired disability. APMR, Vol 95, Issue 11, , Nov 2014 iv Turner-Stokes, L. Specialist neuro-rehabilitation services: providing for patients with complex rehabilitation needs. In: Levels of specialisation in rehabilitation services, BSRM website 2010 (accessed 20th December 2014) v Wilson T, Buck D, Ham C. Rising to the challenge: will the NHS support people with long-term conditions? BMJ. Mar 19, 2005; 330(7492): vi BSRM Standards for Rehabilitation Services mapped on to the National Service Framework for Long-term Conditions, BSRM, 2009 vii Value for Money Review of Disability Services, Department of Health and Children, accessed 12th November 2014 viii Turner-Stokes L. The evidence for the cost-effectiveness of rehabilitation following acquired brain injury Clinical Medicine 2004; 4[1]: ix Powell J, Heslin J, Greenwood R (2002). Community based rehabilitation after severe traumatic brain injury: a randomised controlled trial. JNNP 72: x Patel A, Knapp M, Perez et al (2004). Cost-effectiveness and cost-utility analyses from a prospective randomized controlled trial. Stroke 35: xi Thompson AJ (2000). The effectiveness of neurological rehabilitation in multiple sclerosis. J Rehabil Res Devel; 37[4]: xii Reeves A, Basu S et al. Does investment in the health sector promote or inhibit economic growth? Globalization and health 2013, 9:43 doi: /

112 accessed 15th October 2014 xiii Medical Rehabilitation in 2011 and beyond; Report of a joint working party of the Royal College of Physicians and the British Society of Rehabilitation Medicine, 2010 xiv 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 2006 JNNP; 77(5):634-9 xv Khan F, Turner Stokes L, Ng L, Kilpatrick T, Multidisciplinary rehabilitation for adults with multiple sclerosis Cochrane Database of Systemic reviews Apr 18 (2):CD xvi BSRM Amputee Rehabilitation: Recommended Standards & Guidelines, October accessed 12 th November 2014 xvii RCP (2003) Rehabilitation after traumatic brain injury: National Clinical Guidelines. Royal College of Physicians xviii RCP National Clinical Guidelines for Stroke, 4 th Ed. (2012); accessed 18 th November xix SIGN Management of patients with stroke. Health Improvement Scotland, October accessed 18 th November 2014 xx Improving stroke services in Northern Ireland, July 2008; accessed 18 th November xxi Report of the Welsh Neuroscience External Expert Review Group; September 2008; accessed 19 th November xxii Review of services for people with acquired traumatic brain injury in Northern Ireland; last accessed 19 th November xxiii Pathways for Health: multiple sclerosis commissioning pathway; C6FF442B93F54AFAFB0791BD&d_name=&o_mode=0 accessed 19 th Nov 2014 xxiv Pathway for managing relapses in multiple sclerosis 2005; NHS Scotland, National Patient Pathways accessed 19 th November

113 xxv Pathways: a paradigm for disease management in Parkinson s Disease MacMahon DG et al accessed 19 Nov xxvi Sheenan D, Robertson L, & Ormond T, (2007) Comparison of language used and patterns of communication interprofessional and multi-disciplinary teams Journal of Interprofessional care, 21(1), xxvii Albrecht G, Higginbotham N, Freeman S (2001). Transdisciplinary thinking in health and social science research: definitions, rationale, and procedure. Health Social Science: A Transdisciplinary and Complexity perspective, 4,78-89 xxviii Rubenfeld GM, Scheffer BK (2010). Critical thinking tactics Sadbury, MA in Jones and Barlett Learning xxix Behm J, Gray N (2011) Interdisciplinary Rehabilitation Team; In Jones and Barlett Learning LLC xxx Scottish Executive, Feb 2007; Coordinated, integrated and fit for purpose A delivery Framework for adult rehabilitation in Scotland xxxi Rae-Grant AD et al. Self-management in neurological disorders: systematic review of the literature, J Rehabil Res Dev 2011;48(9): xxxii Strategy to prevent falls and fractures in Ireland s Aging population, Report of the National Working Group on the Prevention of Falls in Older People and the Prevention and management of osteoporosis throughout life, 2008 xxxiii Changing Cardiovascular Health, The National Cardiovascular Health Policy , DOH&C, 2010 xxxiv TRIL, Technology Research for Independent Living), Centre, involving Intel, TCD, UCD and NUI Galway, xxxv Smith CH, Armstrong D. Criteria derived by government and patient for evaluating general practitioners. BMJ 1989 Aug 19;299(6697):