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National Rehabilitation Hospitalunder the care of the sisters of mercy

National Policy/Strategy for theProvision of Rehabilitation Services

SUBMISSION TO:

Department of Health and Children and Health ServiceExecutive Working Group for the development of:

January, 2009

NRH has been accredited by CARF

CONTENTSEXECUTIVE SUMMARY 1

SECTION A: WHAT IS REHABILITATION? 3

A.1 Definition of Rehabilitation 3

A.2 Types of Rehabilitation Services 4

SECTION B: ABOUT THE NATIONAL REHABILITATION HOSPITAL (NRH) 7

B.1 Quick Facts about NRH 9

SECTION C: NRH RECOMMENDATIONS 11

Summary List of Recommendations 11

C.1 The NRH strongly recommends and supports the development a National Strategy for the Provision of RehabilitationServices in Ireland 12

C.2 The NRH recommends that all rehabilitationservices need to be recognised as an integralcomponent in the Irish Health Care system 13

C.3 The NRH recommends that a comprehensiverehabilitation needs assessment and servicemapping of existing rehabilitation services be undertaken as a vital component of theStrategy 14

C.4 The NRH Proposed Model System of Rehabilitation Services 14

C.5 The NRH recommends the development of a comprehensive and integrated regional and national specialist rehabilitation services network 18

C.6 The NRH recommends the need for CommunityBased Specialist Rehabilitation Services (CB-SRS) and Continuing Care Services (CCS) development 23

C.7 The NRH proposed management and reporting structure for a comprehensive and integrated regional and nationalspecialised rehabilitation services network 23

C.8 The NRH recommends the appointment of aninternational independent expert to assist inthe development and implementation of a Rehabilitation Strategy 24

C.9 The NRH recommends implementation of a Quality and Accreditation Framework for Rehabilitation 24

C.10 The NRH recommends the development of a National Rehabilitation Services Workforce Plan 25

C.11 The NRH recommends investment in education and research into rehabilitation 25

C.12 The NRH recommends the development of coordinated data collection systems specific to Rehabilitation 26

APPENDIX 1: CALL FOR SUBMISSIONS ON A POLICY/STRATEGY FORREHABILITATION SERVICES 27

APPENDIX 2: LISTING OF NRH LINKS ANDAFFILIATIONS WITH OTHERORGANISATIONS AND REHABILITATION PROVIDERS 28

APPENDIX 3: REGISTER OF RESEARCH IN PROGRESS AND COMPLETED AT NRH 29

APPENDIX 4: BRAIN INJURY PROGRAMME AT NRH 34

APPENDIX 5: SPINAL CORD SYSTEM OF CAREPROGRAMME (SCSC) AT NRH 37

APPENDIX 6: PROSTETIC, ORTHOTIC ANDLIMB ABSENCE REHABILITATION(POLAR) PROGRAMME 41

APPENDIX 7: PAEDIATRIC FAMILY-CENTREDREHABILITATION PROGRAMME 47

REFERENCE LIST 52

National Policy/Strategy for theProvision of Rehabilitation Services

SUBMISSION TO:

Department of Health and Children and Health ServiceExecutive Working Group for the development of:

January, 2009

NATIONAL REHABILITATION HOSPITAL | NATIONAL POLICY/STRATEGY FOR THE PROVISION OF REHABILITATION SERVICES 1


The NRH believes the Working Group for the Development of National Policy/Strategy forthe Provision of Rehabilitation Services has an opportunity and responsibility to develop astrategy document to:

• Clarify and map the role of rehabilitation services as an integral and essential componentwithin the healthcare continuum in Ireland

• Develop an appropriate policy framework that can lead to the common understanding andleadership for the future development of rehabilitation services in the context of anational public healthcare system

• Develop a strategy for quality service provision and a preferred model of care that showsclearly demonstrated commitment and direction of service planning and resources tomeet the current and future rehabilitation needs of Ireland

• Recognise and support the importance of rehabilitation data collection and management,and rehabilitation research across the country as investments in enhancing potential andquality of life

• Bring forward clear recommendations of how rehabilitation services should be organised,configured, developed and managed in an integrated holistic model of care

• Develop a role for a senior healthcare individual to take overall responsibility to developthe Strategy and rehabilitation agenda moving forward in a measurable action plan whichcan be assessed against objectives set. Government involvement is essential in order toensure adequate support through policy and legislation, and to ensure strengthening ofreferral services. All shareholders must collaborate for the co-ordination of services, butit is internationally recognised that it is preferable if government takes a leading role in this.

Executive Summary

For patients with a disability, rehabilitation sits at the interface of a rangeof necessary services, from acute care to ongoing community care anddisability services. With established expertise in multidisciplinary careplanning and delivery, rehabilitation services have the potential to play akey role in better coordinating the patient journey across these streams ofcare and ensuring that each patient receives the right services at the righttime. That potential can only be realised through the effectiveimplementation of a national rehabilitation strategy.

2 NATIONAL REHABILITATION HOSPITAL | NATIONAL POLICY/STRATEGY FOR THE PROVISION OF REHABILITATION SERVICES

• Establish a national agreement on the following issues;

– Achieving the minimum number of in-patient Rehabilitation beds, with a minimum of 30 beds per 100,000 designated rehabilitation beds across adult and care of theelderly specialties. A lack of rehabilitation capacity results in inappropriate usage of acute care beds and delays in discharge from acute care.

– Agreeing minimum allied health therapy levels in inpatient rehabilitation. This isrecognised practice internationally and is in the order of 12 – 15 hours of therapyper week.

– Standards on therapy levels need to be based on the significant body ofinternational research which demonstrates that better outcomes and efficiency areachieved with more intensive therapy.

– National agreement on models of care that provide the early commencement ofrehabilitation where appropriate, allowing rehabilitation to begin before medicalstability is achieved. This should include establishing standards on the minimumnumber of rehabilitation beds located within an acute hospital or acute hospitalcampus.

– National agreement to establish comprehensive ambulatory (outpatient andcommunity) rehabilitation programs at a level that allows for rapid discharge frominpatient rehabilitation as well as for patients who require rehabilitation but do notneed to receive rehabilitation on an inpatient basis.

– National reporting and benchmarking of rehabilitation access, quality and outcomes.

EXECUTIVE SUMMARY


What is Rehabilitation? Sect

ion

A

A.1 DEFINITION OF REHABILITATION: • There have been many definitions published for rehabilitation, and whatever

definition is used in the eventual published strategy document, it is likely to becontentious. This debate is, perhaps, due to the fact that many people, or serviceproviders, have many differing concepts, opinions and priorities when asked whatrehabilitation is. Some examples to illustrate this are:

• The British Society of Rehabilitation Medicine (Turner-Stokes, 2003) definedrehabilitation in terms of both a concept and a service:

CONCEPTUAL DEFINITION: A process of active change by which a person who hasbecome disabled acquires the knowledge and skills needed for optimal physical,psychological and social function.

SERVICE DEFINITION: The use of all means to minimise the impact of disablingconditions and to assist disabled people to achieve their desired level of autonomyand participation in society.

• The World Health Organisation (WHO, 2002) defines rehabilitation as:

Rehabilitation of people with disabilities is a process aimed at enabling them toreach and maintain their optimal physical, sensory, intellectual, psychological andsocial functional levels. Rehabilitation provides disabled people with the tools theyneed to attain independence and self-determination.

• Regardless of which definition is ultimately agreed, the definition should beestablished and standardised to give clarity of terms for all service providers andusers within the Irish context. It is also important to clarify definitions ofrehabilitation services.


A.2 TYPES OF REHABILITATION SERVICES

A.2.1 General Rehabilitation

All services caring for patients with disabling conditions have a responsibility to provide arehabilitative approach. These skills should be a core competency of every healthcareprofessional (Turner-Stokes, 1999)

A.2.2 Specialist Rehabilitation Service (SRS)

Specialist Rehabilitation Service (SRS) is the total active care of patients with a disablingcondition, and their families, by a multi-professional team who have undergone recognisedspecialist training in rehabilitation (Turner-Stokes, 2001)

An SRS service has the characteristics of:

• SRS can occur in all settings (i.e. from the hospital, to the community and the home),patient demographics may dictate the organisation of this service (paediatric, adult andgeriatric) and types of service levels (inpatient, outpatient or community service).

• Some disabling conditions require SRS for particular diagnosis/conditions (i.e. aninpatient, outpatient or community brain injury Specialist Rehabilitation Service).

• Some disabling conditions present with particular difficulties at particular stages in lifeand require specific SRS to address these (i.e. an inpatient paediatric spinal injurySpecialist Rehabilitation Service).

• The SRS team is supported/led by a consultant who is trained and accredited within thespecialty of rehabilitation medicine.

• The team works in an inter-disciplinary, coordinated fashion towards an agreed set ofgoals to assist the patient to achieve their desired level of independence, autonomy andparticipation in society.

• It carries a more complex caseload than non-specialist services and has the requiredfacilities, skills and specialist staffing to provide rehabilitation at a level of intensitycommensurate with the patients’ needs.

• It routinely monitors input and outcome data for the purpose of benchmarking andquality monitoring and provides systematically reported data on caseload, throughputand clinical outcomes.

• The SRS is a resource for advice, support, training and education to other professionalstaff providing support to local community rehabilitation services in the management ofpatients with complex disabilities.

• It serves a recognised role in education, training and published research for developmentof specialist rehabilitation in the field.

SECTION A WHAT IS REHABILITATION?



A.2.3 Complex Specialised Rehabilitation Services (C-SRS)

“A service for patients with severe complex disabilities whose rehabilitation needs arebeyond the scope of their specialisist rehabilitation services and is best commissionedcollaboratively” (Turner-Stokes, 2001)

These services are designed for persons with injury or illness resulting in complex and oftenmultiple disabilities. They are high-cost, low-volume services given the incidence andprevalence of complex disabilities in the population.

Some specific examples of injury or illness associated with C-SRS include:

• Acquired Brain Injury

• Severe neurological illness or injury (e.g. Multiple Sclerosis, Guillain Barre Syndrome, andMotor Neurone Disease)

• Spinal Cord Injury

• Amputation or limb loss

• Persons with challenging behavioural manifestations.

Accordingly to Turner-Stokes, (2001) the major characteristics of C-SRS are that:

• Most C-SRS offer rehabilitation across a range of service settings including inpatient,outpatient, day and community settings

• Staff have specialist training and experience

• Staffing levels are sufficient to provide complex, high intensity and longer durationservices

• They operate in a highly co-ordinated inter-disciplinary manner

• They have speciality equipment and facilities consummate to needs

• They provide research, support education, research and training to other less specialisedrehabilitation and community services.

Some examples of specific programmes offered by Complex Specialised RehabilitationServices include:

• Inpatient complex rehabilitation assessment

• Coma-arousal programmes

• Spasticity management

• Tracheo-pharyngeal management

• Assistive technology (e.g. communication aids / computers in disability)

• Group therapy programmes

• Behavioural / cognitive / neuropsychology rehabilitation programmes

• Cognitive behavioural therapy programmes

• Sexual counselling

• Formalised family support

• Complex discharge planning and back to work programmes.

Figure 1: Levels of Specialised Rehabilitation Services



Volume &Complexity of Need

Complex SpecialisedRehabilitation Services

C-SRS

Regional Specialised Rehabilitation ServicesR-SRS

CB-SRS Community-Based SpecialistRehabilitation Services


About the NationalRehabilitation Hospital (NRH) Se

ctio

n

B

• The National Rehabilitation Hospital (NRH) is a publicly funded rehabilitation hospitalthat was founded in 1961 by the Sisters of Mercy. The NRH endeavours to maintain theethos and mission on which the hospital was established.

• The NRH provides interdisciplinary Complex Specialised Rehabilitation Services (C-SRS)programmes for inpatients and outpatients from throughout the country, who haveacquired a physical or cognitive disability as a result of an accident, illness or injury. Inaddition, NRH provides Specialist Rehabilitation Services (SRS) for patients on a localand regional basis.

• Persons are admitted with a range of conditions including stroke, traumatic and non-traumatic brain injury, spinal cord injury/dysfunction, amputation, limb absence,neurological disorders, musculoskeletal disorders and other conditions that maysignificantly limit physical, cognitive, emotional and behavioural functioning.

• The NRH provides personalised treatment plans dedicated to returning patients to thehighest level of independence possible following their injury.

• The NRH offers four Complex Specialised Rehabilitation Service (C-SRS) programmesthat are tailored to meet the individual needs of adult and paediatric patients in thefollowing areas of specialty.

– Brain Injury (including traumatic and non-traumatic brain injury, stroke, and otherneurological conditions)

– Spinal Cord System of Care (including traumatic and non-traumatic spinal cordinjury)

– Prosthetic, Orthotic and Limb Absence Rehabilitation (POLAR)

– Paediatric Family-centred Rehabilitation.

• Categories of patients currently not within the NRH’s current scope of service:

– Relapsing and progressive neurological

– Rapidly progressive brain tumours

– Medically unstable (not “rehab ready”)

– Ventilator dependent patients who require 24 hour anaesthetic cover

– Patients who are not referred

• In the NRH, there are currently 6 Consultants in Adult Rehabilitation Medicine and 1 forChildren for a population of 4.2 million, all of whom admit to the NRH. The internationalrecommendations are for at least 14 Consultants for our population.

• The NRH delivers specialist rehabilitation services at a national, regional and communityservice level, at the 3 levels of complexity as shown in Figure 2.

• At the NRH, the C-SRS delivers various rehabilitation programmes such as:

– Coma-arousal programmes

– SMART (Sensory Modality Assessment and Rehabilitation Technique)

– Spasticity management

– Assistive Technology (AT)

– Dysphagia management

– Group therapy programmes

– Behavioural / cognitive neuropsychology / therapy rehabilitation programmes

– Sexual counselling

– Formalised family support

– Complex discharge planning and vocational programmes.

Figure 2: The Rehabilitation Pyramid, Levels of Rehabilitation Service Needs

• The NRH also has an extensive education and research mandate and is actively engagedin education programmes aimed at the 3 levels of complexity, for local and regionalproviders of healthcare and for patients and family (Appendix Two: Listing of NRH Linksand Affiliations with other Rehabilitation providers; Appendix Three: Registry ofResearch in Progress and Completed at the NRH).

• As part of our strong belief in ensuring the quality of our SRS and C-SRS, in June 2008the NRH sought and achieved a maximum three-year accreditation for excellence in itsprovision of rehabilitation services from CARF (Commission for Accreditation ofRehabilitation Facilities). The awarding organisation, CARF is a non-profit organisationoperating in Europe, US and Canada. This accreditation recognises that the NRH meetsinternationally recognised standards of performance in rehabilitation. Moreover, CARFaccreditation provides the tool for ongoing quality improvement within the NRH.


SECTION B ABOUT THE NATIONAL REHABILITATION HOSPITAL (NRH)

Volume &Complexity of Need Complex Specialised

Rehabilitation Services

NRH Remit

Regional Specialised Rehabilitation Services

Community-Based SpecialistRehabilitation Services

C-SRS

R-SRS

CB-SRS



B.1 QUICK FACTS ABOUT NRH

35,000Over the last 48 years the NRH has cared for over35,000 in-patients from throughout Ireland.

250,000During this time, we have reviewed in excess of250,000 persons in our out-patient services

Currently the allocation of in-patient beds are:

– Brain Injury Programme, including Stroke 47 beds

– Spinal Cord System of Care 38 beds– Prosthetic, Orthotic and Limb

Absence Rehabilitation (POLAR) 17 beds– Paediatric Family Centred

Rehabilitation 8 beds

110Our current inpatient capacity is 110 beds; this isdown from a potential maximum of 121 inpatientbeds. Eleven beds were closed due to fundingcutbacks from October 2007.

153As of January 2009, we had a total of 153 patients(all age categories) on the waiting list for inpatientrehabilitation with the following breakdown percategory:

– Brain Injury Programme (including 18 Stroke patients) 83

– Spinal Cord System of Care 46– Prosthetic, Orthotic and Limb

Absence Rehabilitation (POLAR) 17– Other Neurological conditions 7

37,810In 2008, we had a total of 37, 810 Inpatient BedDays.

In 2008, the regional HSE % distribution of ourinpatient admissions was:

– HSE Dublin Mid Leinster 33%– HSE West 24%– HSE South 24%– HSE Dublin North East 19%


In 2008, we had an average length (days) ofinpatient stay per programme of:

– Brain Injury Programme 57 – Stroke 91 – Spinal Cord System of Care 111– Prosthetic, Orthotic and Limb

Absence Rehabilitation (POLAR) 49

In 2008, the percent age distribution of inpatientadmission

– < 65 years old was 86% – > 65 years old was 14%

In 2008, the % total discharges per inpatientProgramme was:

– Brain Injury Programme total 53%– Spinal Cord System of Care 25%– Prosthetic, Orthotic and Limb

Absence Rehabilitation (POLAR) 19%– Paediatric Family Centred

Rehabilitation Programme 3%

In 2008, the inpatient discharge destination was

– Discharged Home 80%– Back to Acute Hospital for

non-medical reasons 10%– To residential /nursing care 10%

90%In 2007, 90% of our inpatient admissions werefrom the acute hospital network and 10% fromprimary care services.

In 2007, we had a total of 739 inpatient admissionswith a breakdown per category:

– Brain Injury Programme total 404(including Stroke, 119)

– Spinal Cord System of Care 180– Prosthetic, Orthotic and Limb

Absence Rehabilitation (POLAR) 109– Other Neurological conditions 37– Other non-Neurological conditions 9

12,231In 2007, we had a total of 12,231 patients’ visitsfor outpatient clinics



NRH Recommendations Sect

ion

C

Summary List of Recommendations

C.1 The NRH stongly recommends and supports the development of a NationalPolicy/Strategy for the Provision of Rehabilitation Services in Ireland

C.2 The NRH recommends that all rehabilitation services need to be recognised as anintegral component in the Irish Health Care system

C.3 The NRH recommends that a comprehensive rehabilitation needs assessmentand service mapping of existing rehabilitation services be undertaken as a vitalcomponent of the Strategy

C.4 The NRH Proposed Model System of Rehabilitation Services

C.5 The NRH recommends the development of a comprehensive and integratedregional and national specialist rehabilitation services network

C.6 The NRH recommends the need for Community Based Specialist RehabilitationServices (CB-SRS) and Continuing Care Services (CCS) development

C.7 The NRH proposed management and reporting structure for a comprehensiveand integrated regional and national specialised rehabilitation services network

C.8 The NRH recommends the appointment of an international independent expert toassist in the development and implementation of the Rehabilitation Strategy

C.9 The NRH recommends the development and implementation of a Quality andAccreditation Framework for all Rehabilitation services

C.10 The NRH recommends the development of a National Rehabilitation ServicesWorkforce Plan

C.11 The NRH recommends investment in education and research into rehabilitation

C.12 The NRH recommends the development of coordinated data collection systemsspecific to Rehabilitation services


C.1 THE NRH STRONGLY RECOMMENDS AND SUPPORTS THE DEVELOPMENTOF A NATIONAL STRATEGY FOR THE PROVISION OF REHABILITATION SERVICES IN IRELAND• Significant government efforts made in the past decade to restructure the management

and delivery of the health service as a whole in Ireland have lead to some changes in therehabilitation sector. Some initiatives have focused on improving the effectiveness andquality of services; and some on improving integration among all components (i.e.inpatient, outpatient/outreach, in-home services) and levels (i.e. prevention andpromotion, restorative, supportive, palliative) of rehabilitation. However, without aspecific national policy and strategic plan to improve rehabilitation services in Ireland,these efforts have been slow to happen, uncoordinated and regional. Furthermore, lack ofclear policy and planning has lead to inconsistent philosophies, principles, definitions andquality standards for rehabilitation throughout the country.

• Since the early 1990’s, the NRH has strongly advocated the need for Ireland to have an allembracing, comprehensive strategy in place for the provision of rehabilitation services.

• This belief was highlighted by the NRH hosting a two-day conference in October 2002titled ‘Developing a National Strategy for Rehabilitation Services in Ireland’. Thisconference had numerous national and international experts in clinical and managementfields of rehabilitation speaking on the need for the development of a comprehensiverehabilitation strategy (copies of conference presentations are available from the NRH).

• The formation of the strategy must also take into account the changing expectations ofthe Irish population in delivery and performance of all health services, includingrehabilitation. It must respond to the expectations of users and providers that needrehabilitation to be:

– More equitable in its response to users

– More demanding of amount and variety of services in the community and closer tohome

– More aware of and responsive to rehabilitation needs across the care continuum

– More concerned with providing adequate education and information

– More concerned with choice and person-centred practice

– More reliant on evidence-based practice and outcomes

– More fully integrated with other parts of the health, disability, employment andcommunity care systems.

SECTION C NRH RECOMMENDATIONS


C.2 THE NRH RECOMMENDS THAT ALL REHABILITATION SERVICES NEED TO BE RECOGNISED AS AN INTEGRAL COMPONENT IN THE IRISH HEALTH CARE SYSTEM• Rehabilitation plays a vital role in preserving and enhancing the quality of life and

functional independence of individuals but the field of rehabilitation is changing insignificant ways.

• Rehabilitation is shown to be effective in enhancing individual functioning andindependent living by achieving greater activity, better health and by reducingcomplications and the effects of co-morbidities. This leads to several benefits to theindividual and to society, which includes greater personal autonomy, improvedopportunities for employment and other occupational activity.

• Rehabilitation is also an integral component of all other health services (e.g. acute care,long- term care, mental healthcare, and home care). It has taken on a greater importancein a restructured health system supporting shorter hospital lengths of stay, reducing re-admissions, physician/GP visits and A&E visits.

• Increases in the demand for rehabilitation services are being driven, in part, by changingdemographics, increased population, the prevalence of disabling and chronic conditions inthe population, and changing patterns in the use of rehabilitation services. Increases inlife expectancy, combined with rapid growth in the elderly population, suggests increaseddemand and associated costs to the healthcare system to meet the long-term care needsof this population.

• There is a large body of evidence for the effectiveness of rehabilitation and a growingbody of evidence to support the cost effectiveness of rehabilitation. Effectiverehabilitation interventions initiated early on can enhance the recovery process andminimise functional disability. Improved functional outcomes for patients also contributeto patient satisfaction and reduce potential costly long-term care expenditures.

• Rehabilitation is not only a healthcare issue, but also a socioeconomic issue, and hassubstantial implications for the working population. The great majority of disabilitieshave their onset during the prime adult working ages as a result of externally-imposedmechanical trauma, underlying disease and illness. Thus timely and effectiverehabilitation is an important health issue that helps individuals restore function andregain the skills and abilities needed to return to life at work, at school, and at home.



C.3 THE NRH RECOMMENDS THAT A COMPREHENSIVE REHABILITATION NEEDSASSESSMENT AND SERVICE MAPPING OF EXISTING REHABILITATIONSERVICES BE UNDERTAKEN AS A VITAL COMPONENT OF THE STRATEGY• An essential prerequisite of any strategy that includes service development is a proper

objective assessment of need. Without knowing the objective need or the existing servicemapping, it is difficult to plan any service development to effectively and efficientlyassess how best to meet the identified need within the existing resources.

• We strongly recommend a formal needs assessment and service mapping of the existingprovision of rehabilitation services be completed. Specifically, we recommend therehabilitation service needs of persons with acquired brain injury, spinal cord and injury,progressive neurological disease, amputation and limb loss be conducted with emphasison need throughout the life-cycle span from paediatric, adolescence, adult to geriatric.

C.4 THE NRH PROPOSED MODEL SYSTEM OF REHABILITATION SERVICES• A model system of rehabilitation care refers to the mechanism of providing a timely,

coordinated continuum of care and service delivery sufficient to the needs ofrehabilitation service users, from the time of onset of injury throughout the person’slifetime (Horn, 1992).

• Contemporary rehabilitation is developing new models of care in response to changingpatterns of morbidity and changes in the acute care sector. These include earlyintervention in acute care to prevent complications and maximise function. A key featureof this work is its potential to reduce the length of stay for patients in acute care.

• The proposed NRH Model System of Rehabilitation Services as shown in Figure 3.includes all the components of the continuum of services delivered in a comprehensiveco-ordinated system of care. The model and terminology is adapted from other publishedrehabilitation models of care and adapted to the Irish context (Horn 1992; Turner-Stokes2001). The model outlines the four stages of rehabilitation services and types of servicesoffered in each allowing patient’s access to appropriate services in a fully integratedmanner. Developing a fully integrated system of rehabilitation care through all stages isthe challenge.

• The NRH also recommends service developments of its 4 main RehabilitationProgrammes as documented in Appendices 4-7.

• The NRH recommends seeking a national agreement on models of care that provide theearly commencement of rehabilitation where appropriate, allowing rehabilitation to beginbefore medical stability is achieved. This should include establishing standards on theminimum number of rehabilitation beds located within an acute hospital or acute hospitalcampus.

• The NRH recommends seeking a national agreement to establish comprehensiveambulatory (outpatient and community) rehabilitation programs at a level that allows forrapid discharge from inpatient rehabilitation as well as for patients who requirerehabilitation but do not need to receive rehabilitation on an inpatient basis.



This proposed NRH Model System of Rehabilitation Services (Figure 3) has four mainintegrated stages and components including:

1. Acute Specialist Rehabilitation Services (A-SRS)

2. Post Acute Specialist Rehabilitation Services (PA-SRS)

a. Complex Specialised Rehabilitation Services (C-SRS)

b. Regional Specialised Rehabilitation Services (R-SRS)

3. Community Based Specialist Rehabilitation Services (CB-SRS)

4. Continuing Care Services (CCS)

Figure 3: The Proposed NRH Model System of Rehabilitation Services


Acute Specialist RehabilitationServices (A-SRS)

Post AcuteSpecialist

RehabilitationServices (PA-SRS)

Community BasedSpecialist

RehabilitationServices (CB-SRS)

ContinuingCare Services (CCS)

PrimaryIntervention

EmergencyCare

AcuteRehabilitation

Prevention

Complex Specialised Rehabilitation Services (C-SRS)

Regional Specialised Rehabilitation Services (R-SRS)

Examples could include: • Outpatient Services• Day Treatment• Home-care Services• Residential Supported Care• Vocational/ Education/ Recreation services• Outreach

Examples could include: • Home, School and/or Work Support Services• Day Activity• Respite Care• In-Home Services• Residential Supported Living• Long-term care• Outreach services


C.4.1 Key Components of this NRH Proposed Model System of Rehabilitation are:

i. Emphasis not only on treatment, but also primary and secondary prevention

ii. Timely to the needs of the person to maximise gain and avoid secondary impairment anddisability

iii. An essential feature of the model is excellent communication and flow of informationfrom one stage to another so that the individual can move through the stages in a“seamless continuum of care”

iv. Services must be coordinated across the healthcare continuum to ensure that personsreceive the right service at the right time in a cost effective and efficient manner.

v. Services must be flexible to the person’s specific individual needs

vi. Services must be local to the person served and his or her milieu to better facilitateparticipation of their social support network

vii. Services must recognise that different people need different input at different stages

viii. Persons may also need to access stages of services at different points in time as theirneeds change. This may involve re-access to inpatient services or a review of communityrehabilitation and support needs as appropriate

ix. Persons progress through the different stages of rehabilitation at very different rates

x. The persons’ progress through the continuum is not sequential or one directional.Persons may enter and leave the services at different points, different times, or even inreverse direction based on individual needs.

xi. The persons’ progress through each stage of the rehabilitation continuum is notabsolute. For example, not all people require hospitalisation, and their rehabilitationneed could best be met in community services.

xii. A small minority with very severe injury may require complex specialised rehabilitationservices, may spend months in hospital and may never progress to the community.

xiii. Within each stage, a range of different service providers are involved, which mustsomehow be coordinated

xiv. The breadth, type and complexity of rehabilitation services change according to thestage of rehabilitation.

xv. The site where this stage of rehabilitation is delivered depends on the patients’ needs;for example:-

– Hospital based — if the patient requires special equipment or facilities, or the co-ordinated input of many disciplines, and can access transport to get to hospital

– Home-based — if it is important that rehabilitation is undertaken in their familiarenvironment. Rehabilitation in the third “community” phase must be providedflexibly in the hospital or home setting as appropriate. The availability of transportservices will determine this flexibility.



C.4.2 Acute Specialist Rehabilitation Services (A-SRS)

This stage starts as soon as possible, even in the acute stages of intensive care in hospital.Interventions at this stage focus on reducing impairment and preventing secondarycomplications such as contractures, malnutrition, pressure sores or pneumonia, which cancontribute to further morbidity and disability.

Rehabilitation is an integral component of all emergency and trauma care. Early emergencyand trauma care is designed to save lives and minimise the impairment and disabilityassociated with acute onset illness. The intensity and length of stay within acute hospitalsettings is largely dependent on the severity of injury.

C.4.2 Post Acute Specialist Rehabilitation Services (PA-SRS)

As the patient starts to recover, PA-SRS may be required to make the successful transitionbetween hospital and community. PA-SRS primarily addresses regaining mobility andindependence in self-care to allow the individual to return to participation in the communityand manage safely at home. Interventions focus on improving activity and independence(reducing disability). PA-SRS can occur in a variety of settings including acute hospital,rehabilitation facilities and/or the community. Persons needing PA-SRS should enter as soonas possible after injury and depending upon the severity and complexity of injuries, a personwould receive PA-SRS from either two categories of Regional Specialised RehabilitationServices (R-SRS) or Complex Specialised Rehabilitation Services (C-SRS).

Persons with less severe or complex injuries could be cared for in Regional SpecialisedRehabilitation Services (R-SRS) which are designed to restore independent function andachieve the best possible outcome through a coordinated delivery of rehabilitation services.R-SRS could occur in a variety of settings including acute hospital, rehabilitation facilitiesand/or the community. By their nature of service, the quantity and location of R-SRS aremore likely greater and thus available on a regional basis throughout Ireland.

As defined more extensively in the preceding section, those persons with the most severeand complex injuries require admission to Complex Specialised Rehabilitation Services (C-SRS) with sufficient expertise and interdisciplinary rehabilitation services to achieve bestoutcomes. The setting of C-SRS is likely to be an inpatient acute or rehabilitation hospital.By their nature of service, the quantity and location of C-SRS are likely to be less and thusnot available on a regional but on a national basis in Ireland.

Some examples of types of services in this stage in Ireland include: Acute InpatientRehabilitation, Day Treatment, Outpatient Services, Slow-stream Rehabilitation, Long-termCare and Outreach Services.



C.4.3 Community Based Specialist Rehabilitation Services (CB-SRS)

Once back in the community, persons requiring ongoing rehabilitation need continued inputto maximise their ability to function in their environment. In CB-SRS the emphasis is usuallyon enhancing participation, extending functional abilities, social integration, and return towork or education. Interventions can focus on enhanced participation, improved quality oflife, psychological adjustment and carer stress which may include Outpatient, Vocational andHome- care Services. Some examples of types of services in this stage in Ireland include:Outpatient Services, Day Treatment, Home-care Services, Residential Supported Care,Vocational / Educational / Recreational services and Outreach.

C.4.4 Continuing Care Services (CCS)

This stage of rehabilitation is designed to provide sustaining services in the community,school and work when persons return to independent or supported living and work in thecommunity. Some examples of types of services in this stage in Ireland include: Home, Schooland/or Work Support Services, Day Activity, Respite Care, In-Home Services, ResidentialSupported Living, Long-term care and Outreach services.

C.5 THE NRH RECOMMENDS THE DEVELOPMENT OF A COMPREHENSIVE AND INTEGRATED REGIONAL AND NATIONAL SPECIALIST REHABILITATIONSERVICES NETWORK • In the absence of a National Strategy or defined model of rehabilitation care, we have

designed a strategy within our remit based on an integrated regional and nationalspecialist rehabilitation services network.

• The NRH unequivocally supports the regional infrastructure and development ofspecialist rehabilitation services in Ireland but it must occur together with thedevelopment of a comprehensive, cohesive national plan which is appropriately resourcedand phased to ensure that the services provided are integrated, seamless, person centredand provided as close as possible to the source of identified need.

• There is clear international evidence that effective rehabilitation can only be achievedwith appropriate resourcing. The evidence is clear that higher intensity therapy improvesboth patient outcomes and service efficiency. Due to the lack of national standards,Ireland lags well behind most other countries on this issue. For example, in the US, it ismandatory to provide three hours of therapy per day for at least 5 days per week. FewIrish rehabilitation units, apart from the NRH, would meet the US standard.

• The NRH recommends achieving the minimum number of in-patient Rehabilitation bedswith a minimum of 30 beds per 100,000 designated rehabilitation beds across adult andcare of the elderly specialties. A lack of rehabilitation bed capacity results ininappropriate usage of acute care beds and delays in discharge from acute care.



• The British Society of Rehabilitation Medicine Guidelines recommends a minimum of 60Acquired Brain Injury (ABI) in-patient rehabilitation beds per million population.Therefore there is a minimum requirement for 252 ABI beds for our population. Thesebeds should be distributed, based on population distribution, between acute and post-acute services, and distributed in a way that reflects the critical mass of patientsrequired to develop an expertise.

• The NRH recommends agreeing on the minimum allied health therapy levels in inpatientrehabilitation. This is recognised practice internationally and is in the order of 12 – 15hours of therapy per week. Standards on therapy levels need to be based on thesignificant body of international research that demonstrates that better outcomes andefficiency are achieved with more intensive therapy.

• Rehabilitation means life-long support of those who have to live the rest of their liveswith permanent disability. Not only are they prone to a variety of medical conditions, suchas pressure sores, infections, contractures and other conditions, but in addition, they andtheir families need support to cope with the psychological, social and economicconsequences of their disability. Management of chronic disability and acuterehabilitation require very different skills and services.

The NRH proposed network is based on a simple Hub and Spoke Model. This gives coordinationand support for community, regional and national development of services. We propose that allrehabilitation services should be provided through a national system of four regionalRehabilitation Networks, each serving a population of about one million people (Figure 4).

Figure 4: Rehabilitation Network


ComplexSpecialised

Regional

Regional

Community

Community

Regional

Community

Community

Regional

Community

Community

Community

Community


• Each network would provide a range of Specialist / Specialised Rehabilitation Servicesacross the continuum of Acute Specialist Rehabilitation Services (A-SRS), Post AcuteSpecialist Rehabilitation Services (PA-SRS) and Community Based SpecialisedRehabilitation Services (CB-SRS).

• Each network should have a formal structure of clinical leadership, with emphasis oncoordinated communication, access, information sharing and partnership leading toseamless and integrated care.

• Moreover, not all patients’ needs can be met at regional level and those with complexneeds must have access to appropriate national Complex Specialised RehabilitationServices (C-SRS).

• Services should be planned in coordinated networks across a geographical area, with jointhealth and social services commissioning services in liaison with other statutory andvoluntary agencies, including employment, education and housing authorities.

• This development should build on existing services.

• Primary care is pivotal in the coordination of the wide variety of services that patients mayuse. It is a key partner in the delivery of effective community and other healthcare services.

• Documents considering rehabilitation frequently ask, “Where should rehabilitationservices be provided, in the hospital or in the community?” Clearly this is the wrongquestion. Different patients have different needs. Services need to be provided both inthe hospital and in the community. The real question is “How do we make sure thatindividual patients can access the services that are appropriate for them?”

C.5.1 Characteristics of Specialised Rehabilitation Service networks

i. A Hub and Spoke Model of Care (Figure 5)

ii. The Hub and Spoke Model in this document refers to a concept, rather than a geographicplan set, and may be interpreted at various levels

iii. Services are provided around a central hub or specialist rehabilitation unit. This hubprovides a focus for administration, staff support, training and research.

iv. Close working links are maintained with outlying parts of the service, e.g. shared orrotating staff.

v. Defined access to complex rehabilitation services in order to meet the needs of morecomplex cases

vi. Staffing and speciality levels allocated according to need

vii. Provision of training, education and guidance for other healthcare professionalsinvolved in rehabilitation

viii. Closer working between local hospital and community rehabilitation teams

ix. Access and coordination with social services and voluntary agencies to providecontinued support for the individual and their family within the home setting



Figure 5: Hub and Spoke Model

C.5.2 Advantages of the Hub and Spoke Model are:

i. Decreasing administration overhead costs by collecting several different teams togetherunder one roof

ii. Achieving critical mass in terms of staff—optimising balance of junior to senior staff, toreduce cost of duplicating senior staff, while maintaining adequate supervision forjuniors in the different teams

iii. Improved recruitment and retention—staff feel more confident and supported

iv. Development of clinical expertise as each team becomes expert in the use of techniquesand procedures relevant to their own field of practice

v. Sharing of information and continuity of care between the hospital and community teamsby use of common protocols and pathways


Hub SpecialistRehab

Acute CareRehab

Day Care

CommunityOutreach

Slow Stream

Drop in Clinic

OPD


C.5.3 Barriers to the Development of Networks

i. Professional boundaries

a. Boundaries at many levels conspire to confound effective development of co-ordinated services.

ii. Bureaucratic and Funding boundaries:

a. Prevent patients from accessing the services most appropriate to their needs at anyone time.

iii. Split between different providers

a. The current split of services between the acute and community services leads todisjointed care and poor support for some rehabilitation professionals.

b. Division of services into Adult and Care of the Elderly leads to inequality of service.

c. Provision of specialist services for certain diagnostic groups can be an efficient wayto deliver care, but provision must be made for patients who do not fit into any ofthe specialist categories.

iv. Split between health and social services

a. Different areas have different arrangements for sharing the responsibility ofcontinuing care and rehabilitation between health and social services. Much time andeffort is wasted in arguing over who is responsible for which part of an individualpatient’s care.

v. Lack of understanding of exactly what specialist rehabilitation is;

a. Resources are tight, but are particularly so in this less-well publicised area of carewhich fails to compete with the pressures on the acute services.

vi. Increasing demand

a. Improved acute care such as helicopter evacuation from accidents, andmedical/surgical advances mean that more patients survive with severe disability.This trend is likely to continue and we need to plan for greater demand onrehabilitation services, not only in terms of numbers, but also in terms of greatercomplexity and dependency on care.

vii. Lack of suitably trained rehabilitation professionals

a. Around the country there are a small number of specialist rehabilitation servicesproviding high quality care and services, but these are insufficient to cope with thenumber of patients requiring them and their expertise is not used to maximumefficiency.



C.6 THE NRH RECOMMENDS THE NEED FOR COMMUNITY BASED SPECIALISTREHABILITATION SERVICES (CB-SRS) AND CONTINUING CARE SERVICES (CCS)DEVELOPMENT• Community based rehabilitation services must be developed to augment hospital

services and to ensure that the acute /post acute rehabilitation facility does not becomeblocked and become a chronic service – thus defeating the purpose of establishing anacute/post acute unit.

• The current focus of Irish government funded community care is on maintenance andsupport (non-acute) services and much less supportive of rehabilitation and othercontinuing care. This is despite international evidence that two thirds of people seekingcommunity care are often assessed as having the potential for increased independence.This significant group do not receive rehabilitation. Instead, they receive maintenancecare. The end result is a long-term burden for them, their family and the health system.

• There needs to be access to funding that follows the individual across the continuum ofcare to allow appropriate access to rehabilitation in order to maximise potential for theindividual and reduce dependency.

• Community support and networks must be developed to ensure that rehabilitation andcommunity support services are available and accessible for patients on discharge fromhospital.

C.7 THE NRH PROPOSED MANAGEMENT STRUCTURE FOR A COMPREHENSIVE ANDINTEGRATED REGIONAL AND NATIONAL SPECIALISED REHABILITATIONSERVICES NETWORK • No one in the Irish Healthcare system has clear responsibility for rehabilitation policy,

planning, service provision or workforce development. For example, there is no section inthe Department of Health and Children that has responsibility for rehabilitation. Theoutcome of this deficiency is that the potential contribution of rehabilitation towardsimproving the efficiency of acute care has been reduced.

• We propose a possible management and reporting structure of a 4 regional rehabilitationservices network as outlined in Figure 6.



Figure 6: NRH proposed Management and Reporting Structure for a Rehabilitation Services Network

C.8 THE NRH RECOMMENDS THE APPOINTMENT OF AN INTERNATIONALINDEPENDENT EXPERT TO ASSIST IN THE DEVELOPMENT OF AREHABILITATION STRATEGY• The NRH recommends that it would be appropriate for the Working Group/Steering

Group to seek input from an independent international expert in the field ofRehabilitation. Recommendations on the best strategy for national and regionaldevelopment will depend on robust analysis of the current evidence- base.

C.9 THE NRH RECOMMENDS IMPLEMENTATION OF A QUALITYAND ACCREDITATION FRAMEWORK FOR REHABILITATION • A vital part of developing rehabilitation services in Ireland is to ensure that any individual

receiving any form of rehabilitation service in any part of the country receives servicescomparable with the highest possible, evidence-based standards supported and bench-marked with best practice internationally and adapted within the Irish context.

• To accomplish this goal we recommend the creation of a National Framework for Qualityand Accreditation for all rehabilitation service providers that would lead to thedevelopment of standards, guidelines and continuous accreditation mechanisms for thedelivery of rehabilitation services in Ireland.

• HIQA should establish a national multidisciplinary group charged with the responsibilityto develop and implement this goal.


Minister for Health & Children

Network Director Forum

Department of Health &Children/Health Service Executive

- Department of Education- Department of Trade & Enterprise- Department of Social & Family Affairs - Department of Justice, Equality & Law Reform

Post Acute Specialist

Rehabilitation Services (PA-SRS)

Community Based Specialist

Rehabilitation Services (CB-SRS)

Continuing Care Services (CCS)

Acute Specialist Rehabilitation

Services (A-SRS)

Network Director for each: 1) 1 X Complex Specialised

Rehabilitation Services 2) 4 X Regional Specialised

Rehabilitation Services


C.10 THE NRH RECOMMENDS THE DEVELOPMENT OF A NATIONAL REHABILITATIONSERVICES WORKFORCE PLAN• Like other parts of the healthcare sector, this sector is facing shortages of trained

rehabilitation-specific healthcare professionals and specialists. This includes alldisciplines including medicine, nursing and rehabilitation specialists (e.g. physiotherapy,occupational therapy, speech therapy, dietician, psychology and social workers).

• We recommend that the HSE develop a National Rehabilitation Services Workforce Planto ensure that there are adequate levels of highly skilled rehabilitation staff across allrehabilitation related disciplines.

C.11 THE NRH RECOMMENDS INVESTMENT IN EDUCATION AND RESEARCH INTOREHABILITATION • Rehabilitation education and research are essential components in the development,

implementation and evaluation of a national rehabilitation services programme.

• Recent advancements in rehabilitation specific scientific knowledge and research has ledto the development and availability of new medical treatments for many disabling injuriesand diseases (e.g. brain and spinal injury, multiple sclerosis) that have contributed tolonger lifespans and, at the same time, placed an increased demand on the need forrehabilitation and community services that help individuals manage, maintain and/orimprove their functional abilities as people age. In addition, research is also leading tonew understandings of factors that contribute to peoples’ success in regaining functionalindependence, to their fullest potential, following trauma or illness. It is vital that servicedelivery of rehabilitation keeps up to date with current research in order to implementbest practice.

• New treatments are frequently costly and national guidance is needed on the evidencebasis for their use and potential. A national agency capable of benchmarking newtreatments and equipment would be of considerable benefit.

• There needs to be promotion and development of a wide-ranging research programmethat encompasses all fields of clinical and service delivery rehabilitation research



C.12 THE NRH RECOMMENDS THE DEVELOPMENT OF COORDINATED DATACOLLECTION SYSTEMS SPECIFIC TO REHABILITATION• There is a lack of information about rehabilitation collected through national and state

data collections, with only very basic indicators included in the Census, the NationalDisability Database and through HIPE. Furthermore, no one seems to know what to dowith the limited data that is collected.

• There is a marked absence of coordinated and specific data from the rehabilitationsector including utilisation, performance and outcomes.

• Reliable data reflecting utilisation, performance and outcomes of rehabilitation servicesis either non-existent or difficult to obtain. Complicating the problem is the fact thatvarious rehabilitation service providers do not use the same indicators in order to collectthis information uniformly.

• Furthermore, in spite of the growth and costs related to disabling conditions across thecountry and the corresponding need for “value for money”, the use of research in provingthe effectiveness and efficiency of rehabilitation services in Ireland is limited.

• The HSE should develop a system of data collection through a process that involves theexamination of international approaches to cover the major areas of rehabilitation.



The Terms of Reference of the WorkingGroup are:

“To consider the rehabilitation needs atacute and community levels of people at allstages of the lifecycle with:

• Static and progressive neurologicalconditions

• Traumatic and non-traumatic brain injuryand

• Other physically disabling conditions whomay benefit from medical, psychologicaland/or social rehabilitation serviceprovision.”

The objectives of this process are thedevelopment of:

• An appropriate policy framework

• A strategy for service provision and

• A preferred model of care.

A report will be prepared for submission tothe Secretary General of the Department ofHealth and Children and the CEO of theHealth Service Executive.

To assist and inform the Working Group to deliver on its task, we are invitingsubmissions from organisations andindividuals in relation to the above Terms of Reference.

Written submissions should be forwarded:

By e-mail to:[email protected]

By post to:

Strategy for Rehabilitation ServicesConsultationRoom 6.29Office for Disability and Mental HealthDepartment of Health and ChildrenHawkins HouseDublin 2

Call for Submissions on a Policy/Strategy forRehabilitation Services

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The Department of Health and Children and the Health Service Executive aredeveloping a National Policy/Strategy for the Provision of Rehabilitation Services. A Working Group has been established which includes key stakeholders and expertsto assist with this process.


Action for Disability

Acute Hospitals and RegionalHospitals throughout Ireland

An Bord Altranais – Irish NursingBoard

Association of Hospital ChiefExecutives

Association of OccupationalTherapists Ireland

Bariatric advisor at St. Colmcilles’Hospital

BRÍ

British Association ofRehabilitation Medicine

British Dietetic Association – BDA

British Society of Prosthetics andOrthotics

Cappagh National OrthopaedicHospital

Central Remedial Clinic (CRC)

Chartered Institute for PersonnelDevelopment – CIPD

Department of Finance – (DisabledDrivers Medical Board of Appeal)

Department of Health and Children

Dublin Hospitals Group Health andSafety Forum

Dublin Hospitals Group InsuranceScheme

Dublin Hospitals Group RiskManagement Forum

Dublin Institute of Technology (DTI)

Enable Ireland

European Federation of PhysicalMedicine and Rehabilitation

FARM – Forum for Academics inRehabilitation Medicine

Headway

Health Service Executive

Health Service ExecutiveEmployers Agency

Hospital Procurement ServicesGroup (HPSG)

HSE Physical and SensoryDisability Forum

Institute of Directors of Ireland

International Society forAugmentative and AlternativeCommunication

International Society ofProsthetics and Orthotics

Irish Association of Directors ofNursing and Midwifery – IADNAM

Irish Association of Neurologists

Irish Association of RehabilitationMedicine

Irish Association of Social Workers

Irish Association of Speech andLanguage Therapists

Irish Business EmployersConfederation (IBEC) VoluntaryHospital’s Group

Irish Committee on Higher MedicalTraining

Irish Gerontological Society

Irish Healthcare Risk ManagementAssociation

Irish Heart Foundation

Irish Medical Organisation

Irish Nursing Organisation

Irish Nutrition and DieteticsInstitute – INDI

Irish Society of CharteredPhysiotherapists

Irish Wheelchair Association

Joint United KingdomPhysiotherapy Clinical Leads inSpinal Cord Injury

Mercy Group Hospitals Committee

NRH / Beaumont Hospital BrainInjury Unit Project Team

Opcare (Prosthetic and OrthoticStrategic Partner of NRH)

Orthopaedic Hospital, Clontarf

Peter Bradley Foundation

POBAL

Psychological Society of Ireland

Radiation Safety HSE Taskforce

Radiological Protection Advisors atSVUH and St. James’ Hospital

Royal College of Physicians ofIreland

Royal College of Speech andLanguage Therapy

Spinal Injuries Ireland

Stroke Foundation Ireland

TCD Children’s Research Group

The Spinal Cord Injury VocationalProgramme (NRH, SII, HSE & FAS)

Therapy Grades Group(Department of Health andChildren)

Trinity College, Dublin (TCD)

Try-it-ie (Assistive TechnologyLoan Bank)

University College Galway

University College, Dublin (UCD)

University of Limerick

Volunteer Stroke Scheme

World Federation of RehabilitationMedicine

Listing of NRH links and affiliationswith other Organisations andRehabilitation Providers

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Register of Research inProgress and Completedat NRH

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Research Project Principal Investigator Co-Investigator Researcher Duration ofResearch

Music Therapists’ Strategies inImplementing New Posts withinHealth Care Settings

Dr. Hugh Monaghan,Consultant Neuro-paediatrician

Professor Jane Edwards,University of Limerick

Ms. Alison Ledger,Health Research BoardFellow, UL

November 2008 -

Differences in MaritalSatisfaction, Coping and SocialSupport following a TraumaticBrain Injury

Dr. Áine CarrollConsultant inRehabilitation Medicine,NRH

Ms. Patricia Byrne, ClinicalNeuropsychologist, NRH

Ms. Anne Marie Casey,Assistant Psychologist,NRH

November 2008 -

Cognitive impairments intraumatic brain injury novelbiomarkers for new treatments

Dr. Mark DelargyConsultant inRehabilitation Medicine,NRH

Dr. Paul Dockree,Institute ofNeuroscience, TCD

Dr. Paul Dockree,Institute ofNeuroscience, TCD

March 2008 -

Optimising the prescription ofprosthetic technologies(opptec): Outcome measures forevidence based prostheticpractice and use

Dr. Nicola RyallConsultant inRehabilitation Medicine,NRH

Dr. Pamela Gallagher,DCUMs. Sinead NiMhurchadha, DCUMs. ElisabethSchaffalitzky, DCU

Ms. Sinead NiMhurchadha, School ofNursing, DCUMs. ElisabethSchaffalitzky, Schoolof Nursing,DCU

November2007 -

An exploration of Peri and PostPartum Stroke in the context ofRelationships of the IndividualsAffected


Ms, Patricia Byrne, NRH Ms. Áine Finan, Dept.Psychology, TCD

Ms. Áine Finan, Dept.Psychology, TCD

November2007 -

National Drug-Related DeathsIndex

Dr. Jacinta MorganConsultant inRehabilitation Medicine,NRH

Ms. Suzi Lyons, SeniorResearch Officer, HealthResearch BoardMs. Ena Lynn, ResearchOfficer, Health ResearchBoard

Ms. Ena Lynn, ResearchOfficer, HealthResearch Board

July 2007 -

An exploration of child andadolescent sibling’s experienceof paediatric traumatic braininjury

Dr. Hugh MonaghanConsultant in NeuroPaediatric RehabilitationMedicine, NRH

Dr. Sarah O’Doherty, NRHMs. Heather Cronin, DeptPsychology, TCD

Ms. Heather Cronin,Dept. Psychology, TCD

July 2007 -

Rehabilitation of Awareness ofdeficits in Patients withTraumatic Brain Injury Applyinga User-Friendly ComputerisedIntervention Approach

Dr. Jacinta MorganConsultant inRehabilitation Medicine,NRH

Dr Simone Carton, NRHMs. Mary Fitzgerald,Department of ClinicalNeuropsychology, NRH

Ms. Mary Fitzgerald,Department of ClinicalNeuropsychology, NRH

May 2007 -


APPENDIX 3 REGISTER OF RESEARCH IN PROGRESS AND COMPLETED AT NRH


A Generic Electronic AssistedTechnology (EAT) package forPersons with Quadriplegia

Dr. Jacinta McElligottConsultant inRehabilitation Medicine,NRH

Michele Verdonck, SeniorOccupational Therapist,NRH

Michele Verdonck,Senior OccupationalTherapist, NRH

January 2007-

Prospective Memory DeficitFollowing Traumatic BrainInjury: Level of Awareness, rateof Recovery and PsychosocialOutcome


Dr. Simone Carton, NRHMs. Melanie Clune, Dept. Psychology, UCD

Ms. Melanie Clune, Dept. Psychology, UCD

November2006 -

Longitudinal Investigation ofCognitive Appraisals, Copingand Psychological Outcomes: AMulticentre European Study

Dr. Angela McNamara /Dr. Jacinta McElligottConsultant inRehabilitation Medicine,NRH

Dr. Simone Carton, NRHMs. Maeve Nolan, Department of ClinicalNeuropsychology, NRH

Ms. Maeve Nolan, Department of ClinicalNeuropsychology, NRH

January 2007-

The Prevalence ofOsteoporosis in the DisabledPopulation at the NationalRehabilitation Hospital


Dr. Éimear Smith,Specialist Registrar inRehabilitation Medicine,NRH

Dr. Éimear Smith,Specialist Registrar inRehabilitationMedicine, NRH

January 2006-

Standards of Practice in Irishand UK Hydrotherapy Pools

Dr. Angela McNamaraConsultant inRehabilitation Medicine,NRH

Ms. Aoife LangtonSenior Hydrotherapist,NRH

Ms. Aoife LangtonSenior Hydrotherapist,NRH

Completed2008

Assessing the impact ofprevious experience, andattitudes towards technology,on levels of engagement in avirtual reality basedoccupational therapyintervention for spinal cordinjury rehabilitation

Dr. Manus McCaugheyConsultant inRehabilitation Medicine,NRH

Mr. Paul O’Raw, School of Psychology, UCD

Mr. Paul O’Raw, School of Psychology,UCD

Completed 2007

Evaluation of a CopingEffectiveness TrainingProgramme in a Spinal CordInjured Population


Ms. Suzanne Meenan,Department of ClinicalNeuropsychology, NRH

Ms. Suzanne Meenan,Department of ClinicalNeuropsychology, NRH

Completed2007

Self Awareness after BrainInjury: emotional distress andexecutive functioning


Ms. Judith McBrinn,Psychologist in ClinicalTraining, NUI Galway

Ms. Judith McBrinn,Psychologist in ClinicalTraining, NUI Galway

Completed2007

An evaluation of virtual realitytechnology as an occupationaltherapy treatment tool in spinalcord injury rehabilitation


Mr. Paul O’Raw, School of Psychology,UCD / Michele Verdonck,Senior OccupationalTherapist, NRH

Mr. Paul O’Raw, School of Psychology,UCD

Completed2006

Assessment of PerceivedStress amongst Nursing Staffin a Rehabilitation Hospital

Dr. Jacintha MoreO’Fearall,Occupational HealthPhysician, NRH

Ms. Rose CurtisOccupational HealthNurse, NRH

Ms. Rose CurtisOccupational HealthNurse, NRH

Completed2006

Awareness and SustainedAttention following TraumaticBrain Injury


Dr. Simone Carton, NRHProf. Ian Robertson, TCDDr. Paul Dockree, TCD

Dr. Paul DockreeDr. Simone Carton

Completed2005


APPENDIX 3 REGISTER OF RESEARCH IN PROGRESS AND COMPLETED AT NRH


An Investigation into thefunctional independence ofindividuals with Spinal CordInjury following discharge.


Ms. Lisa Held, BScOT,NRH

Ms. Lisa Held, BScOT,NRH

Completed2005

The Reliability of theCommunity OutingPerformance Appraisal (COPA)to assess the abilities of Adultswith Acquired Brain Injury


Ms. Fiona Ryan, BScOT,NRH

Ms. Fiona Ryan, BScOTNRH

Completed2005

An investigation into theoccupational status of personswith incomplete Spinal CordInjury


Ms. Catherine Logan, Senior OT, NRH

Ms. Catherine Logan,Senior OT, NRH

Completed 2005

Strategies for CrisisIntervention & Prevention(SCIP): Does it work?

Dr. Simone CartonHead of ClinicalPsychology, NRH

Mr. Ray Messitt, Nursing Dept, NRH

Mr. Ray Messitt, Nursing Dept, NRH

Completed2005

Assessment of FinancialCompetency in Patients withAcquired Brain Injury


Dr. Simone Carton, NRHMr. Nick Kidd, Dept. Psychology, TCD

Mr. Nick Kidd, Dept. Psychology, TCD

Completed 2005

A Pilot Study of the Safetyand Effectiveness of theTraxon Spinal Cord RepairStimulator for the Treatmentof Complete Spinal Cord Injuryin Humans

Dr. Patrick C Murray, Consultant inRehabilitation Medicine,NRH

Professor CiaranBolger,ConsultantNeurosurgeon,Beaumont Hospital

Ms. Linda McEvoy Completed2004

Psychological Aspects ofAmputation: A cross-SectionalStudy

Dr. Nicola Ryall,Consultant inRehabilitation Medicine,NRH

Prof. MalcolmMacLachlanDepartment ofPsychology,Trinity College Dublin

Ms. Olga Horgan Completed2004

Traumatic Brain Injury and Subsequent Rehabilitation– Focussing on the Future


Prof. J.P. Phillips/ Dr. Lourda GeogheganDept. of Public HealthMedicine, UCD

Dr. Lourda Geoghegan Completed2004

Nurses’ Perceptions of theirRole as part of the Multi-professional Team in an AcuteRehabilitation Setting

Ms. Fanchea McCourtEducation Co-ordinator,NRH

Completed2004

Evaluation of Service Needsand Provisions in Relation toChildren and Young Peoplewith Acquired Brain Injury inIreland

Dr. Hugh Monaghan,Consultant Neuro-Paediatrician, NRH

Dr. Diane HoganThe Children’s ResearchCentre, TCD

Dr. Caroline HearyDr. Diane Hogan

Completed2003

Parents’ Perspectives onreintegration of Students withAcquired Brain Injury into theIrish School System

Ms. Mary O’ConnorSchool Principal, NRH

Completed2002


Traumatic Brain Injury (TBI) remains the leading cause of deathand disability in young individuals and the leading cause of TBI inyoung individuals is road traffic accidents. TBI is a significantcontributor to morbidity and mortality at all stages of life.

There are no reliable incidenceestimates for Acquired Brain Injury(ABI) in Ireland. A useful estimate, forIreland, can be reached byextrapolating from the Thornhill et al,paper from Glasgow (BMJ 2000). Theextrapolated incidence of TBI survivorsneeding rehabilitation in Ireland iscurrently in the range 4,600 – 6,300 /annum. TBI resource planning shouldprovide rehabilitation resources basedon the incidence range of 100 -150/100,000 population /year. Whilethe Glasgow paper provides anincidence range benchmark for TBI,ABI, however, includes those with nontraumatic brain injury eg Stroke, Sub-arachnoid Hemorrhage (SAH),Encephalitis and benign tumours. TheBSRM have estimated the ABIincidence at 275/100,000 whichcorrelates with an ABI incidence of10,550/annum in Ireland.

The rehabilitation resources availablenationally must be sufficientlynumerous and diversely skilled toaddress the ABI incidence. The RCS(E)Working Party report on headInjuries(1999) has recommended thatpeople with intermediate and severehead injuries should be transferreddirectly to a multidisciplinary

rehabilitation unit and not to acutesurgical or medical wards, as stillhappens in Ireland some 10 years afterthe RCS(E) report.

The BSRM report on ABI (2003) servesas a guide for the number of bedsneeded in Ireland for ABI rehabilitation.The BSRM report estimates thenumber of specialist ABI rehabilitationbeds at 60 beds/million population.Based on the current populationestimate, Ireland needs 255 TBIrehabilitation beds. The NRH is the onlyspecialist rehabilitation provider forinpatient ABI in Ireland and currentlyprovides 46 specialised ABI beds. Theplanned increase in ABI beds to 150, aspart of the new NRH development, willbe a significant step forward inmeeting the national bed requirement.Regional rehabilitation beddevelopment is also needed tocomplete predicted rehabilitation bedrequirements.

The BSRM have further estimated that25/100,000 have moderate to severebrain injury. In Ireland, thisextrapolates to just over 1000 peoplewith brain injury who are likely to needintensive, prolonged multidisciplinaryrehabilitation. Based on planned

capacity of 150 beds in the new NRHand an average 12 week inpatient NRHrehabilitation stay, the new NRH (with4 bed turnovers /year) will be able toserve the initial rehabilitation needs of 600 moderate to severe ABIsurvivors/year.

The resources required to reduce theinpatient stay to, say 8 weeks, wouldrequire a major increase in staffing, tobring the NRH capacity to 800/annum.(Extra capacity would still be neededfor readmissions and people with mildABI.) In any case substantial regionalrehabilitation development will beneeded for approximately 200 – 400moderate to severe ABI survivors/year.

Rehabilitation in the Model System of Care

The model referred to below is basedon a US model system of care – thismodel can be easily adapted to theIrish context, and using the model asillustrated in the NRH proposed ModelSystem of Rehabilitation Service (seefigure 3), the seamless timely andefficient movement of patientsthrough the system can be achieved.

Brain Injury Programme at NRH

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The continuum of care for individualswith TBI occurs in a variety of settingsacross the healthcare system. Withinthe continuum, people with TBI flow inand out through the rehabilitationsystem at different points and atdifferent times depending on needs andservice availability. (Brain Injury, Katz,Zasler, Zafonte Chapter 1. Clinicalcontinuum of care and natural history)

The key component of ABI servicedelivery is the “continuum” of care frominjury prevention to early interventionand trauma care, acute hospital ICUcare and secondary prevention, acuteinpatient rehabilitation services andpost acute rehabilitation services,subacute and continuing care services,through to outpatients and vocationalrehabilitation services. In additionhome and community based services,and residential rehabilitation servicesare all essential components of thecontinuum of care for ABI. Developinga fully integrated system of care fromacute hospital, inpatient rehabilitationto continuity of community serviceshas been a challenge for ABIworldwide.

A “spectrum” of services across thehealthcare continuum is essential toensure that individuals receive theright service at the right timedelivering best outcome by utilising themost appropriate resources in a costeffective, cost efficient manner.

The “model” system of care for TBIincludes all the components of thespectrum of services delivered in acomprehensive co-ordinated system ofcare. As is the case for Stroke Unitcare, best results are achieved whenservices are delivered by integratedmultidisciplinary teams.

There are 13 Model Systems of carefunded through the National Instituteof Disability Research in the US. Thesecentres were designed to implementbest practice and research outcomesthrough coordinated delivery ofrehabilitation services. These modelsystems for TBI are based on thesuccessful implementation of Model

Systems of care for Spinal Cord Injury(SCI) which has had proven success inimproving survival, longevity, reducingmorbidity, and improving outcome andquality of life for individuals withspinal cord injury.

Four integrated phases are describedin the rehabilitation “Model” system ofcare.

The US model systems are generallyconsidered to be a well organisedcomprehensive integrated system ofcare and inform service development in Ireland.

Management of TBI is as follows:

1. Acute Medical/Surgical Phase

The acute medical/surgical phaseincludes primary prevention, emergencycare and acute care rehabilitation andsecondary prevention. This phase ismost effectively delivered in acoordinated system of trauma care.(Trauma system development in NorthAmerica. Hoff William, Schwab CWilliam, Clinical Orthopaedics, andRelated Research. Vol. 422, May 2004,pp17-22). These emergency andimmediate care services are based inacute hospitals. Rehabilitation is anintegral component of all trauma careand comprehensive rehabilitationteams are needed in every acutehospital which receives accident andemergency patients. Early emergencyand trauma care is designed to savelives and minimise the impairment anddisability associated with TBI. Theintensity and length of stay withinacute hospital settings is largelydependent on the severity of injury.

Rehabilitation in acute hospital settingis designed to prevent secondarycomplications which can contribute tomorbidity, disability, and length ofstay. Rehabilitation in acute hospitalsettings should be on average less than6 weeks for those patients with severeinjuries. (As per the HSE/Beaumont/NRH recommendations for theNRH@Beaumont unit)

2. Acute Rehabilitation Phase.

Once the patient is clinically stablehe/she should be transferred from theacute hospital setting and enter theacute rehabilitation phase which isdesigned to restore independentfunction and achieve the best possibleoutcome through a coordinateddelivery rehabilitation services. Thespecialised rehabilitation phaseincludes rehabilitation servicesdelivered through acute inpatientrehabilitation brain injury programmes,coma programmes, continuing carefacilities, and outpatient and daytreatment services.

People with the most severe injuriesrequire admission to an acute inpatientrehabilitation programme withsufficient interdisciplinaryrehabilitation services to achieve bestoutcomes including return tocommunity independent living andwork, where possible. The intensity ofservices and length of stay in acuteinpatient rehabilitation programmesdepends largely on the severity andcomplexity of injury. Earlyrehabilitation is associated withimproved outcomes. Patients shouldenter the acute medical rehabilitationphase as soon as possible after injury(1-6 weeks) with a length of stay inacute inpatient rehabilitation of upto12 weeks depending on severity ofinjury. After very severe ABI inpatientstay combined acute and rehabilitation,phases can run to many months whilethose in PVS will need specialised longterm care.

Those with less severe injuries can besupported by high capacity,comprehensive, and timely outpatient,day treatment, or individual communityservices. Based on the standardclassification of acute ABI using theGCS system which separates ABI intomild, moderate and severe it might beexpected that people with mild TBIneed little rehabilitation services.Counter intuitively, as many as 48% ofthose in the mild category needsubstantial rehabilitation services.(Ref. Thornhill et al)

APPENDIX 4 BRAIN INJURY PROGRAMME AT NRH


The majority of people with TBIeventually return to independent orsupported community living. A smallpercentage of patients require longterm home care or care in a continuingcare setting.

3. Post Acute Rehabilitation Phase

The post acute rehabilitation phase isdesigned to provide communityintegrated rehabilitation serviceswhich may include outpatient,vocational and home care services.

4. Supported Adapted Lifestyle Phase

The supported adapted lifestyle phaseof rehabilitation is designed to providesustaining services in the community,school and work when individuals withTBI return to independent or supportedliving and work in the community. Themajority of people make significantrecovery especially in the first 6months post injury. In some, furtheradaptation may be possible withfocused phases of rehabilitationintervention for many years afterinjury. People with ABI should beassisted in achieving return to stableadapted lifestyle as soon as possibleafter injury. Even those people with themost severe injuries should haveachieved a stable adapted lifestyle byone year. However, they may need tore-enter services or be able to continueto benefit from vocational andcommunity based services.

SERVICES PROVIDED – BRAIN INJURYPROGRAMME AND COMPREHENSIVEINTEGRATED INPATIENTREHABILITATION PROGRAMME(CIIRP)

Following appropriate referral to theBrain Injury or CIIRP Programme atNRH, the person will receive apreadmission assessment to identifytheir unique medical, physical,cognitive, communicative,psychosocial, behavioural, vocational,educational, cultural, family, spiritualand leisure/recreational needs. This isalso an opportunity for personsreferred to receive information about

the Brain Injury Programme includingcharacteristics of persons served,types of services offered, outcomesand satisfaction of previous patients,and other relevant information.Following this assessment and, if theperson meets the admission criteria,they may be offered admission to theBI or CIIRP Programme.

Following admission theinterdisciplinary team members, incollaboration with the patient and theirfamily/support network, will develop acomprehensive treatment plan thataddresses the identified needs of thepatient and their family/supportnetwork. Patients and theirfamily/support network are offeredappropriate information andopportunity for feedback at everystage of the rehabilitation process, andare actively involved in decisionsregarding their care. Patients and theirfamily/support network are alsooffered education regarding primaryprevention of further ABI andsecondary prevention related to bettermanagement of potential risks andcomplications.

People admitted to the BI or CIIRPProgramme receive a minimum of twohours of direct services per day,Monday to Friday. Direct serviceintensity differs on weekendsdepending on resources available andindividual needs, and to facilitate homeor community leave for gradualreintegration of the person into theseenvironments.

Types of services offered in the BrainInjury/CIIRP Programme to meetidentified needs could include:

• Activities of Daily Livingassessment and management

• Adaptive equipment assessmentand training

• Assistive technology assessmentand training

• Audiology screening

• Behavioural assessment andmanagement

• Bowel and bladder retraining

• Chiropody

• Clinical neuropsychologicalassessment and psychotherapy

• Cognitive retraining

• Communication assessment andmanagement

• Coping and adjustment to disability

• Dental Services

• Dysphagia assessment andmanagement

• Family/ carer training andeducation

• Hydrotherapy

• Independent living assessment &training

• Medical assessment andmanagement

• Mobility assessment andmanagement

• Nutritional counselling andmanagement

• Orthopaedic assessment

• Orthotics and splinting

• Pastoral and spiritual services

• Patient advocacy service

• Patient and family supportcounselling

• Pharmacological management

• Pre-driving and communitytransport assessments

• Prosthetic services

• Radiology

• Rehabilitation nursing

• Respiratory therapy

• Safety awareness and training

• Sexual counselling

• Urology service

• Vocational assessment andcounselling

If additional services are required andnot available on site, the programmefacilitates referral to certain ancillaryservices.



Examples of these ancillary servicescould include:

• Advanced assistive technologyassessment and prescription

• Fiberoptic endoscopic examinationof swallowing

• Medical speciality consultingincluding Psychiatry , Radiology-Brain Imaging, Neuro-ophthalmology, Neuro-psychiatryand Orthopaedics

• On-road driving assessment andtraining

• Optician

• Osteoporosis assessment

• Podiatry

• Substance abuse counselling

• Video fluoroscopic swallowingevaluation

People with ABI frequently havecomplex disabilities and needs whichrequire specialist intervention byprofessionals with knowledge andexperience in the management of braininjury. The composition of theinterdisciplinary team for each personserved is determined by theassessment of the person’s individualmedical and rehabilitation needs.These team members could include:

• Brain injury liaison nurse

• Chaplain

• Clinical Neuropyschologist

• Clinical psychologist

• Dietitian

• Discharge liaison occupationaltherapist

• Dysphagia therapist

• Health care assistants

• Medical Social worker

• Occupational therapist

• Pharmacist

• Physiotherapist

• Rehabilitation medicine specialist

• Rehabilitation nurse

• Speech and language therapist

• Sports therapist

Services Provided for Families andCarers

Families and carers are partners in therehabilitation process and areencouraged to participate in all phasesof the programme. Information,counselling, emotional andpsychological support can reduce theemotional sequelae experienced by thefamily/carer. This support may helpthem to adapt and come to terms withlife changes, and so result in betterlong-term outcomes for both thepatient and the family. Rehabilitation isa continuous and life long process. Thecarrying over of new skills gained intreatment into daily activities and intodischarge environments is critical tothe success of any rehabilitationprogramme.

Many services are available within theBrain Injury Programme at NRH tomeet the needs of the patients’family/carers including:

• Education/training aboutmanagement of ABI related issues(e.g. NRH Stroke Awareness forCarers programme, printedresource material, informalinstruction and practical skillstraining in preparation fordischarge).

• Psychological support services


• Peer support through interactionwith other families and variouscommunity support groups (e.g. Brí,Peter Bradley Foundation andHeadway Ireland).

• Information about communitysupport, advocacy, accommodationand assistive technologyresources.

• Trial of supported living on site inour short stay independent livingfacility.

National Rehabilitation Hospital ABIService components.

• The NRH is the only post acuteinpatient rehabilitation programmefor individuals with TBI in Ireland.Referrals are received nationwidefrom all the acute hospitals andHSE service areas. In response toreferral demand, the NRH hasexpanded its capacity to 46 bedsfor the Brain Injury RehabilitationProgramme. The NRH ABIprogramme spans the continuum ofcare from acute hospitals toinpatient rehabilitation, OPD andcommunity based services. TheNRH has 4 rehabilitationconsultants specialising in theprovision of services for peoplewith ABI. Each rehabilitationconsultant has the majority of theirsessions at NRH with othersessional commitments to theacute hospitals at Beaumont,AMNCH, SVUH, and the MaterHospital. Each ABI rehabilitationconsultant receives referrals fromand coordinates services forpatients from a specific HSE areaand utilises designated brain injurybeds and OPD resources for theHSE service area under theirjurisdiction. Referrals mainly comefrom acute hospitals but also fromdischarge services in the HSEPCCC community based services.

• The NRH provides Brain Injuryliaison services, pre and postinpatient rehabilitation. The NRHprovides follow up as required forpatients with severe brain injury.Life long follow up for severe TBIwould be desirable as is the norm inthe SCI system.

• Specialised spasticity managementand a neurobehavioural clinic areimportant components of inpatientand OPD services. The NRHprovides comprehensive OPDservices, vocational and drivingassessments.



• The Rehabilitative Training Unitprovides a residential vocationalrehabilitative training programme.

• The NRH provides a coordinatedinterdisciplinary acute inpatientrehabilitation programme forpatients with TBI. The NRHinpatient rehabilitation programmespans the continuum of care frompreadmission consultations in theacute hospital to post acuteservices, discharge and long termfollow up.

• The NRH rehabilitation programmeis “CARF” accredited. CARF(Commission for Accreditation ofRehabilitation Facilities) is theinternational standard ofaccreditation and best practice inmedical rehabilitation services.CARF is based on the standardsdeveloped by multidisciplinaryspecialist rehabilitation and isconsistent with “Model systems ofcare for TBI. The NRH is continuingto pursue further specialistaccreditation for all to therehabilitation programmes at NRHincluding CARF accreditation forthe individual brain injury, spinalcord injury, amputee and paediatricfamily centered care rehabilitationprogrammes.

• The NRH has limited capacity tomeet the needs of patientsrequiring acute inpatientrehabilitation services. The newhospital project to be built on siteat NRH is designed to provide anessential increase in bed capacityfor TBI patients and has beendesigned in line with National andInternational standards of medicalrehabilitation facilities.

RECOMMENDATIONS

• Expansion of current in-patient ABIcapacity in line withrecommendations in the ‘NewNational Rehabilitation Hospital’plan.

• Development of acute andintensive Brain InjuryRehabilitation beds as outlined inthe NRH@Beaumont unit plan.

• Expansion of current Neuro-behavioural unit as per the ‘NewNational Rehabilitation Hospital’plan. The experienced gained overthe past 14 years has enabled NRHto develop a unique range of skillsand expertise in challengingbehaviour. With that background,the NRH has a gained a uniqueperspective in this complex area ofservice delivery.

• Close collaboration withContinuing Care and RehabilitationServices Providers such asPeamount and Royal Hospital,Donnybrook.

• Close collaboration with theVoluntary Agencies and communityABI service providers includingPBF, Headway, SEABI team andother rehabilitation care providerssuch as St. Doolagh’s and Redwood.

• The rehabilitation component ofthe Irish Heart Foundationsubmission to the CardiovascularStrategy Implementation Groupshould be incorporated as anintegral component of the NationalRehabilitation Strategy.

CONCLUSION

Ireland has the foundation, people, andskills to build on existing services andplan for effective ABI rehabilitationwithin the HSE framework as part ofthe health care continuum. Bestpractice and the highest internationalstandards are both cost effective andcost efficient. Rehabilitation deliveredin a poorly coordinated, manner bymultiple independent agencies is costlyboth in the short and long term due toinefficient utilisation of resources andpoorer outcomes which ultimatelyleads to inappropriate delay intransfers between services and fewerindividuals with ABI returning toindependent home, community andwork settings.

Health care professionals, health careadministrators, and the HSE by buildingon existing rehabilitation expertise,delivering on planned rehabilitationfacilities and services, can implement aco-ordinated and effective strategy. Acoordinated system of care will drivethe further change needed to maximisethe use of available resources for themost benefit. International bestpractice is of proven effectiveness indelivering a co-ordinated rehabilitationservice. Best practice reducesmorbidity, improves patient outcomes,and recognises that, for sustainability,cost efficiency and cost effectivenessare paramount.



Spinal Cord System of Care Programme (SCSC) at NRH

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Services for those with spinal cord injury in Ireland are, in the main, providedby the Mater Misericordiae University Hospital (MMUH) and the NationalRehabilitation Hospital (NRH). The NRH has been providing a spinal injuryservice since 1963. The Mater Hospital has managed the acute phase since1991 and the NRH provides a comprehensive, follow on, inpatient and outpatient rehabilitation service.

As a national service the NRH acceptsreferrals from every part of thecountry although the majority ofpatients are referred from the acuteSpinal Injury Centre at the MaterHospital. Since 2007 the Scope of theSpinal Cord System of Care at NRH hasexpanded to include spinal corddysfunction. Spinal cord dysfunctionmay result from traumatic injury or nontraumatic injury including for example,cancer involving the spinal cord ordemyelinating disorders.

The spinal injury programme at theNRH is a Complex SpecialisedRehabilitation Service (C-SRS). Itspans the continuum of acute tocommunity and is designed to provideinternational best practice in line with‘Model Systems’ of care for SCI. (TheUSA’s National Institute on Disabilityand Rehabilitation Research (NIDRR)‘Model Systems’ are specialisedprogrammes of care in spinal cordinjury and traumatic brain injury whichgather information and conductresearch with the goal of improvinglong-term functional, vocational,cognitive and quality-of-life outcomesfor individuals with disabilities in theseareas. (USA Department of Education2008))

Incidence

O’ Connor & Murray (2005) estimatedthe incidence of SCI in Ireland as being13.1 per million population based onNational Rehabilitation Hospitalfigures for the year 2000. Howevercurrent expert opinion estimates arehigher than this with Ireland estimatedto fall somewhere in the middle ofinternational estimates (12-40 permillion) with approximately 27 permillion population per year. This wouldequate to 120 new Spinal Cord Injuriesper year based on a population of 4.5million (traumatic and non-traumatic).The number of 116 persons admittedto NRH in 2008 does not include thepatients discharged directly homefrom the Mater or other acute centres.At a minimum this figure indicatesIreland in line with internationalestimates of 25 per million with theactual figure being significantlygreater.

UK incidence figures for traumaticinjury are quoted as approximately 10-15 people per million populations peryear. In 2008, 60 persons withtraumatic spinal cord injury wereadmitted to NRH giving an average for2008 of 13 people per million ofpopulation. Including both traumatic

and non traumatic injury, 116 personshad a first admission to the NRH spinalrehabilitation programme in 2008. Afurther 40 patients were readmittedfor secondary rehabilitation.

Life expectancy for people with a SCIhas improved significantly in recentyears and currently it is approximately70-90% of normal life expectancy(McCormick 2006). Persons with SCIrequire a life long service. There arecurrently nearly 1500 individuals witha Spinal Cord Injury (SCI) in Ireland.

SERVICES PROVIDED - SPINAL CORDSYSTEM OF CARE PROGRAMME(SCSC)

Each person receives a preadmissionassessment of medical andrehabilitation needs that includesdiagnosis, prognosis, morbidity, co-morbidity, premorbid level of function,mental status, ability to tolerate theintensity of the care and supportsystems. If a person meets theprogrammes admission criteria, theperson can be offered the service.Persons admitted and their familiesare offered appropriate informationand opportunity for feedback at everystage of the process, and are actively


involved in decisions regarding theircare. An important aspect of thisprogramme is education of bothpatient and family in relation toprimary prevention to avertreoccurrence of the impairmentprocess and secondary preventionrelated to potential risks andcomplications due to impairment.

Following admission theinterdisciplinary team members, incollaboration with the patient andfamily, will develop a comprehensivetreatment plan that addresses theidentified needs of the person, theirfamily and support network.

Types of services offered in the SpinalCord System of Care to meet theseidentified needs could include:

• Activities of daily living training

• Adaptive equipment assessmentand training

• Assistive technology assessmentand training


• Behavioural training

• Bowel and bladder training

• Clinical psychological assessmentand intervention

• Communication assessment andmanagement


• Dentistry

• Discharge planning

• Driving and community transportassessments and training


• Family and caregiver training andeducation

• Fitness and sports

• Hydrotherapy

• Independent living assessment

• Information regarding entitlementsand services.

• Medical management

• Mobility training

• Nutritional counselling andmanagement

• Occupational therapy


• Orthotics and splinting


• Patient Advocacy Service

• Patient and family support systemcounselling

• Pharmaceutical Care

• Physiotherapy

• Podiatry

• Prosthetics

• Psychosocial assessment andintervention

• Radiology

• Referral to appropriate carepathway supports




• Sexuality and fertility counselling

• Skin care training

• Spasticity and pain management

• Urology service

• Vocational assessment

Some persons admitted to more thanone programme in the NRH will receiveappropriate services from eachprogramme. Depending on theassessed needs, some services cannotbe provided on site within the SpinalCord System of Care. If additionalservices are needed and not availableon site, the programme can facilitatereferral for certain ancillary services.

Examples of these ancillary servicescould include:

• Fibreoptic endoscopic examinationof swallow (FEES)

• Neurology

• Optician / orthoptics


• Video fluoroscopic swallowingevaluation

Services Provided forFamilies/Carers/ Support Systems:

Families and carers are partners in therehabilitation process and areencouraged to participate in all phasesof the programme. Information,counselling, emotional andpsychological support can reduce theemotional sequelae experienced by thefamily/carer. This support may helpthem to adapt and come to terms withthe life changes, and so result in betterlong-term outcomes for both thepatient and the family. Many servicesare available within the Spinal CordSystem of Care to meet the needs ofthe patient’s family to include:

• Education about spinal corddysfunction.

• Education on what typicallyhappens for families / carers whohave been affected by spinal corddysfunction

• Annual joint presentations with thevoluntary agency Spinal InjuriesIreland.

• Psychological support

• Pastoral services

• Peer support through interactionwith other families

• Psychosocial assessment andintervention

• Family / support systemcounselling

• Information about support andadvocacy resources, localaccommodation and assistivetechnology resources.

• Short stay on site facility forfamily / carers to trial livingindependently with patient (VillaMaria)

APPENDIX 5 SPINAL CORD SYSTEM OF CARE PROGRAMME (SCSC) AT NRH


Post Discharge Services:

Urology

The Urology service at the NationalRehabilitation Hospital is a nationalservice currently provided viasessional commitment by a ConsultantUrologist based in the Adelaide andMeath and National Children’s Hospital(AMNCH) and assisted by the NursingDepartment at NRH.

In the past renal failure was the leadingcause of death in the spinal cordinjured (SCI) population. The death ratefrom renal causes in the 1960’s wasreported to be between 37% and 76%.Renal complications now rank 10th(3.6%) as a primary cause of death inpatients with a spinal cord injury. Thisimprovement is largely attributed tothe co-ordinated medical, specialistnursing and rehabilitation care.

International data would suggest thatspinal cord injured patients shouldhave follow up at a minimum on anannual basis. The Urology service atthe NRH includes:

1. A Consultant led clinic on a weeklybasis and two nurse led clinics onweekly basis (The annualsurveillance carried out in theseclinics ensures that any red-flagsindicating urological complicationsare identified in a timely manner.This number is expected toincrease as the spinal injurypopulation in Ireland grows.) Onaverage 700 patients attend thisclinic on an annual basis.

2. An informal countrywide telephoneservice is available on a daily basisfor spinal cord patients and theirfamilies/carers, generalpractitioners, and public healthnurses. On average over 150telephone calls are received on amonthly basis.

3. A nurse-led catheter clinic is heldfor patients requiring the firstchange of supra-pubic catheter andfor patients requiring educationand training on catheter care.Supra-pubic catheterization is acommonly recommended means ofbladder management for patientsrequiring a long-term indwellingcatheter. Patients discharged fromthe National RehabilitationHospital may experiencedifficulties in getting supra-pubiccatheters changed in thecommunity as many GeneralPractitioners, Public HealthNurses, and Registered GeneralNurses are not educated andcompetent to carry out thisprocedure. Patients report on aregular basis that they have toendure an average of three to ninehours round trip to their localAccident & EmergencyDepartment to have theircatheters changed. The ClinicalNurse Manager has providedtraining on a national basis toGeneral Practitioners, PublicHealth Nurses, and RegisteredGeneral Nurses, relatives, andcarers.

Outpatient Clinic

The Outpatient service at the NRH runsa weekly comprehensiveinterdisciplinary clinic for both new andreview patients with approximately 10persons attending each week andseeing on average 400 persons eachyear. The current minimum waiting timefor the outpatient clinic is 4 to 5months

National Nursing Liaison Service

The Spinal Liaison Nurse Serviceendeavours to bridge the gap betweenthe hospital, home and the health careprofessionals. In order to preventcomplications such as pressure soresand help manage bowel and bladderproblems (Up to 85% of individualswith SCI develop a pressure ulcer atsome time in their life, accounting forone fourth of the cost of caring for apatient with a spinal cord injury,(Byrne& Salzberg, 1996)) individualsshould be visited in their own home bya Spinal Liaison Nurse at 6 weeks postdischarge and then at 6 months,followed by yearly visits if required,depending on level of injury.

The Spinal Liaison Nursing Service alsoserves as a resource to local primarycare teams with access to specialisedknowledge regarding the condition andneeds of patients with spinal cordinjury.

The Spinal Liaison Nursing Service wasreduced to half time in April 2006, as aresult there were no home visits for 20months. In 2008 this half time positionwas filled and 149 patients were seenin their own homes nationwide. As ofJanuary 2009 there are currently 58patients in Dublin that are awaiting ahome visit and 100 patientsnationwide. Additional hours arerequired to get the service up to speedand allow visits to occur and allow theservice to develop further. The SpinalUnit in Oswestry, UK, admits onaverage 100 spinal patients every yearand they employ three full time LiaisonNurses this compares to only oneSpinal Liaison Nurse for all of Ireland.

Vocational Rehabilitation Programme

The Vocational Programme is a casemanaged service specifically designedto address the vocational needs ofpersons with spinal cord injury. Theteam includes the client,representatives from the HSE, FAS,NRH staff and the voluntaryorganisation SII. This service isavailable for two years post discharge.



RECOMMENDATIONS

Delayed Discharges

Unfortunately during 2008 the ‘delayeddischarges’ statistics in the SpinalSystem of Care Programme accountedfor over 65% of the total delayeddischarges for all programmes in theNRH in the past year. The averagelength of stay (LOS) for persons withSCI in NRH in 2008 was 120 days. Forthose discharged with complex needsin 2008 the average LOS was 215 days,with 7 patients over 300 days and onepatient discharged after a 760 dayadmission with a delay of 628 days.

LOS in NRH for some persons withcomplex spinal cord injury could bedramatically reduced leading toreduction of waiting times in acutehospitals and increased patientthroughput in the NRH. Theaccommodation difficulty oftransitioning to the community forpersons with complex disability isreviewed in the joint report by CitizensInformation Board / DisabilityFederation of Ireland ‘The Right LivingSpace’. A funded strategic relationshipbetween an appropriate voluntaryagency and the NRH could address theusual chief barriers to discharge,addressing both housing and careneeds. The cost saving for the healthsystem and the increase in quality oflife for individuals would beconsiderable.

Patients needing Anaesthetic cover

Patients with higher respiratory needscould be admitted earlier to the NRHwith the provision of on-callanaesthetic cover at the NRH andappropriate staff education. Currentlyanaesthetic service needs are met onan individual sessional basis.

Satellite and Rapid Review Clinics

In the UK the model of local satelliteclinics is being used. In this model, theconsultant and a therapy staff membertravel to review complex patients whowould otherwise need to travel a greatdistance. Local nursing staff, therapystaff, carers and families assist andgain valuable experience in spinal cordinjury care and treatment.

Due to the current waiting forOutpatient appointments, an increasein capacity and the provision of a rapidreview clinic would enable community,primary healthcare teams, to accessearly assessment of the person fromthe community.

Specialty Accreditation

The quality of care at NRH wasaccredited in 2008 by CARF(Commission on Accreditation ofRehabilitation Facilities) which is thepremier international, independentrehabilitation accreditation service.The Spinal Cord System of CareProgrammes at the NRH is currentlyaccredited as part of the overallinpatient programme. The Spinal CordSystem of Care Programme will bepursuing individual ‘specialtyaccreditation’ within the next 3 years.This speciality accreditation reflectsbest practice as indicated in the ‘ModelSystems’ of care and is essential toensure quality service provision inrehabilitation services.



Prosthetic, Orthotic and LimbAbsence Rehabilitation(POLAR) Programme

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The Prosthetic Rehabilitation Service with the Spinal Rehabilitation serviceformed one of the two original rehabilitation programmes at Our Lady ofLourdes Hospital on the Rochestown Avenue site. This later became theNational Rehabilitation Hospital. As such, the experience with Prostheticrehabilitation goes back many decades to the early 1960s with severalthousand patients having been successfully rehabilitated after oftendevastating, but always life-changing, limb loss.

The only Institution of its kind inIreland, it is also the only Consultantled Prosthetic rehabilitation service inthe country with a single Consultantoverseeing the service that includes 20inpatient beds at the NRH, a weekly ortwice weekly outpatient clinic, anddaily Prosthetic reviews andappointments. There are twoConsultant attended clinics at Cork andGalway on a monthly basis. Theseclinics and the other satellite clinics atWaterford (with telemedicinefacilities), Letterkenny, Sligo, Carrick-on-Shannon and Castlebar are runevery two weeks with seniorprosthetists from the NRH and Opcare(the NRH’s strategic partner indelivering prosthetic and orthoticservices) in attendance. Localworkshops provide a same-day facilityfor minor repairs and adjustments.

The NRH is a Public Service fullyfunded by the HSE. This is also aninternationally accredited servicewhich, in the next two years, will beapplying for Speciality CARFAccreditation for the POLAR(Prosthetic Orthotic and Limb AbsenceRehabilitation) Programme (CARF –Commission for Accreditation ofRehabilitation Services).

Referral to the Service

Every amputee should have access to aConsultant led team in AmputeeRehabilitation whether prostheses areultimately appropriate or not.

The demand and a responsive model of care

There are several models of careavailable from the United States,Australia and Canada. However, thisdocument considers the model in theUK, given the readily availablestatistics and their not unreasonableapplicability to the Irish situation.Detailed reports are also available andincluded with this submission (BSRMAmputee and Prosthetic Rehabilitation– Standards and Guidelines 2nd Edition

October 2003; Ireland falls within asimilar off-Continental Europe locationas the UK and has good examples ofservice already available on the islandof Ireland in the AmputeeRehabilitation Centre in Belfast.

For a population of about 65 million inthe UK, there are about 65,000 patientrecords open in the Disability Centres.This does not take into account thosewith amputations and no prostheticrequirement. The prevalence of acondition without a high early mortalityis likely to be significantly more thanthe average annual incidence, currentlyabout 6500 new referrals a year(NASDAB 2003) in the UK.

In Ireland, this could mean for apopulation of about 4 million, aprevalence of about 4000 with limbabsence and prosthetic requirements.There is no data available on thenumber of new amputations annually.The NRH has about 4500 open files atany given time. In 2008 we had 2780clinic attendances and 372 lower limbswere manufactured (more than onelimb could be manufactured for the


same patient per year, as could twolimbs and more be manufactured foreach bilateral amputee); 65 upper limbprostheses were also manufactured.The figure for 2007 was 431 new limbsmanufactured. This is therefore, onlythe tip of the ice-berg.

Therefore the number of nationwidenew amputations annually would be inexcess of the numbers manufacturedat the NRH. A conservative estimate islikely to be about 500 per year, ofwhich the NRH would only be referred aselection. While there is Prostheticprovision in the country separate fromthe NRH, this is an unregulated andunknown entity and not part of acomprehensive rehabilitation service.

SERVICES PROVIDED – PROSTHETIC,ORTHOTIC AND LIMB ABSENCEREHABILITATION PROGRAMME

Each patient receives a preadmissionassessment of medical andrehabilitation needs to identify theirunique medical, physical, cognitive,psychological, social, behavioural,vocational, educational, cultural, family,spiritual and leisure/recreationalneeds. Admission to the service isdependent on meeting the admissioncriteria. The person served and theirfamilies are offered appropriateinformation and opportunity forfeedback at every stage of the process,and are actively involved in decisionsregarding their care. The patient andtheir family are offered educationregarding prevention of complicationsand management of risk factors suchas diabetes and vascular disease.

Following admission theinterdisciplinary team members incollaboration with the patient andfamily, develop a holistic treatmentplan incorporating the services thataddress the identified needs of theperson, their family and supportnetwork.

Persons admitted to the POLARprogramme receive a minimum of twohours of direct services per day,Monday to Friday. Direct serviceintensity varies on weekendsdepending on resources available, andtherapeutic weekend leave may beincorporated into the rehabilitationprogramme to facilitate translation offunctional gains into the homeenvironment and the gradualreintegration of the person into theirhome and community.

Services offered in the programme tomeet these identified needs include:

• Activities of Daily Living training

• Assistive technology


• Cognitive training


• Dental services

• Discharge Planning

• Driving and community transportassessments and training


• Family and caregiver training andeducation

• Fitness and Sports

• Hydrotherapy

• Independent living assessment

• Information regarding entitlements& services

• Medical management

• Mobility training

• Nutritional counselling &management


• Orthotics & splinting


• Patient Advocacy Service

• Patient and family support systemcounselling

• Pharmaceutical Care

• Plastic surgery assessment

• Podiatry/Chiropody

• Prosthetic assessment andmanagement

• Psychiatric assessment

• Psychological assessment andpsychotherapy

• Psychosocial assessment &intervention

• Radiology Services


• Relaxation and stress management



• Sexuality counselling

• Skincare training

• Smoking cessation counselling

• Urology service

• Vocational assessment andcounselling

Persons admitted with dual diagnosesmay receive services from otherspecialty programmes as required.

If additional services are required andnot available on site, the programmefacilitates referral to the appropriateancillary services.

APPENDIX 6 PROSTHETIC, ORTHOTIC AND LIMB ABSENCE REHABILITATION (POLAR) PROGRAMME


Examples of these ancillary servicesinclude:

• Endocrinology

• Fibreoptic Endoscopic Evaluationof Swallowing (FEES)

• Neurology

• Oncological services

• Optician


• Vascular surgery

• Videofluoroscopic swallowingevaluation

Medical specialists in anaesthetics,orthopaedics, plastic surgery,psychiatry, radiology, respiratory andurology are consulted as required.

The Services Provided For TheFamilies/Carers/Support Systems Ofthe Person Served

Families and carers are partners in therehabilitation process and areencouraged to participate in all phasesof the programme. Information,counselling, emotional andpsychological support can reduce theemotional sequelae experienced by thefamily/carer. This support may helpthem to adapt and come to terms withthe life changes, and so result in betterlong-term outcomes for both thepatient and the family.

Many services are available within thePOLAR programme to meet the needsof the patient’s family including:

• Education about limb loss that mayinclude group sessions, printedmaterial, informal instruction andpractical skills training inpreparation for discharge

• Counselling services

• Psychological services

• Pastoral services

• Peer support through interactionwith other families and throughlocal and international supportgroups (Amputee Ireland, DisabilityIreland, REACH, LimblessAssociation, STEPS, IWA)

• Information about support andadvocacy resources, localaccommodation and assistivetechnology resources.

• Short stay transitional living in anon-site support facility.

There are several strengths alreadyinherent in the NRH model ofProsthetic Rehabilitation. Two ofthese will be discussed in more detail.

A. The role of the NRH as a National(supra-regional) Centre ofExcellence.

The NRH is more than a Limb FittingCentre. Prosthetic rehabilitation goesway beyond a limb fitting exercise.‘Wholistic’ Amputee Rehabilitation forthe non-prosthetic user would typifysuch an approach.

As the majority of amputees areelderly and dysvascular, with an ageingpopulation, the numbers will increaseyear on year. The co-morbidity in thesepeople is self-evident. Secondaryprophylaxis in this visibly identifiableand captive cohort of amputees isessential, either as stand-alone goodclinical practice or as part of a NationalStrategy for Cardiovascular disease,Diabetes, Elderly Care and Strokesimilar to the National ServiceFrameworks in the UK.

Rehabilitation services have anessential role in primary prevention.

Prosthetic services in the UK areprovided through NHS Trust Hospitals,either as regional, supra-regional orlocal and visiting services [ProstheticAdvisory Group to Minister for theDisabled A report of the Working Party(Chair Carter-Jones, L) College ofOccupational Therapists; 1994].

Several publications support therecommendation that Rehabilitationservices for those with limb loss shouldremain a Specialised RehabilitationService (defined as a multi-disciplinaryservice having input from a Consultantin Rehabilitation Medicine) [TurnerStokes L. Implementation of ClinicalGovernance in Rehabilitation Medicine:The state of the Art 2002. ClinicalRehabilitation 2002; 16(Suppl.1):9-11].

These services should becommissioned at a level above that ofthe equivalent of a Primary Care Trust.This could be for a population the sizeof the average new Strategic HealthAuthority, roughly about 5 millionpeople (DoH Statistics, UK, July 2006),akin to the population of Ireland butrelevant only as a comparablepopulation estimate. The more usefulcomparison is linked to the actualaccess to services and their delivery ina timely, cost-effective and regulatedmanner, allowing for urban/rural splits,etc.

Nevertheless, this seems to be thelevel at which one could justify a singleSupra-regional centre with regionalcentres linking in to this centralservice. The NRH, in Ireland, iseminently placed to be such a centre ofexcellence.



Several reports from the UK wouldsupport a supra-regional service [HSC1998/198 – Commissioning in the NewNHS, DoH 1998; Amputeerehabilitation – recommendedStandards and Guidelines. London1992. Available from the BritishSociety of Rehabilitation Medicine;Congenital Limb deficiency –recommended standards of care,London: 1997; Department of Health,Amputee Care- Guidelines forCommissioners. Prosthetic StrategicSupply Group, Procurement andSupplies Agency, Nov 2001;Department of Health, SpecialisedServices definition supplement to HSC1998/198, DoH December 2001;Medical Rehabilitation for people withphysical and complex disabilities.Royal College of Physicians’Committee on Rehabilitation medicineLondon 2000; Audit Commission –‘Fully equipped’, London 2000]

The justification for a Supra-regionalservice is several-folds:

• The average number of Amputeesfor a single service is likely to besmall, for example, the MercyHospital in Cork would have about30 amputations per year (personalcommunication). In comparison, theNRH sees about 350 amputations ayear and has about 4500 patientfiles open at any time.

• Large, expensive and technicallysophisticated clinical andworkshop facilities are essential tosupport the service and are costlyto duplicate, staff and maintain

• A high level of specialist andprofessional expertise is requiredin medical, prosthetic, technicaland therapy staff. This alreadyexists at the NRH but developingthe NRH as a National Centre forExcellence will obviate the need tosend patients abroad for costlyrehabilitation, necessarily distantfrom the context in which thesepeople’s lives unfold.

• As exposure to prostheticrehabilitation does not form partof an undergraduate medicalcurriculum, developing resourcesto teach, demonstrate skills, designaudits and foster collaborativeresearch would be diluted if thesewere to be spread across severalregions. The NRH already providesthe only training for futureTherapists and Consultants with aninterest in Amputee Rehabilitation.There is an unmet need fordeveloping national fora forCounsellors and Specialist Nurses.The NRH is well placed to deliveron this.

• A ‘critical’ mass of patientpopulation through specialistservices is essential for achievingand maintaining high standards andcost effectiveness. The exactnumber of patients is not knowndue to lack of any data available.Extrapolating from other servicesis also likely to prove misleading.There are 44 Limb Fitting Centresin the UK (BSRM Oct 2003) eachreceiving, on average, 130 patientsa year. About 90% of these will belower limb amputations (NASDAB2001). It is reasonable to presumethat patients with ‘standardamputations’ (unilateral belowknee) could be managed at regionalcentres, given time, with adequateprovision and cyclical training ofstaff over a period of about 5-7years.

• Any National Centre, like the NRH,must have the capacity andcapability in resources to be ableto withstand this transfer ofspecialist skills without imploding.Personnel ‘seconded’ to theregional centres should do sowithout affecting the service at theNRH which must be supported tomeet this challenge.

• What is reasonably certain is thatspecialist scenarios will all fallwithin the remit of a centre skilledin dealing with such patients overdecades - the NRH. Examples ofthese include:

1. Low volume, highly emotive,potentially litigious upper limbloss (fewer than 5% of totalamputations nationally in theUK)

2. Multiple limb loss (17 cases inthe UK in 2001 for a populationof 60m)

3. Congenital limb deficiency –either in isolation or part ofother system involvement

4. Children with acquired limbabsence

5. Special circumstances likepregnancy

6. Combined disability – limb lossand a stroke or as part of polytrauma with brain injury

7. ‘Amputee PLUS’ situations likesevere phantom pain, complexregional pain syndromes,severe psychological sequelae,psychiatric co-morbidity withlimb loss as part of deliberateself harm.



• Data are sparse in Ireland unlikethe NASDAB (National AmputeeStatistical Database) in the UK.Not all patients with amputationsare referred for limb fitting. TheNRH can and should, with adequateresources, be the National centrecollating the incidence andprevalence of limb absence,providing the HSE with statisticsreflecting local and regionalvariations in demand and providingthe State with a database andexpertise to help shape policy andassist the State in meeting itsstatutory obligations, for example,EPSEN 2004, Disability Act 2005.The ‘unreferred’ person with limbabsence is an unfathomed entity.

• The incidence of limb absence ishigher in homeless people, those inprison, those on the street begging,in immigrant populations (thedemographics are changing) and inthe Forces. A single NationalCentre obtaining and acting on thisdata would better serve thisvulnerable population.

• Patient choice should be a realchoice. The development of aNational Centre for Excellence willalways provide the valuable‘second’ opinion within the country,arbitrating in cases of sufficientcomplexity, allocation of scarceand competing resources andacting as a Body to whichindependent ‘appeal’ can be made.It would be unnecessary to referthese patients on to the UK,Sweden or the USA as is currentpractice. Awareness in theamputee population of a shortfallin capacity within the system atpresent sometimes underminesclinical credibility. The ‘best’treatment always happens to beoutside Ireland, which it shouldn’t.

B. The existence and furtherdevelopment of the ‘Hub andSpoke’ model for service deliveryat the NRH

The same reports quoted above, in theUK recommended the development of ahub and spoke model of servicedelivery, where the regional and localservices established themselves withfocused clinical leadership and forgedaffiliations for further specialisationswith tertiary referral centres. Thedocument ‘Amputee and ProstheticRehabilitation –Standards andGuidelines’ published by the BritishSociety of Rehabilitation Medicine(BSRM) in 2003 (updates in 2008),strongly recommended this model.

The NRH already has well establishedfortnightly Clinics at Waterford (withTele-medicine facilities back to theNRH), Cork (likely to increase to weeklyclinics and even a permanentpresence), Letterkenny, Sligo, Carrick-on-Shannon, Castlebar and Galway.Patients seen at the NRH for inpatientrehabilitation are followed up at theseclinics as well as ‘Primary’ amputeesnewly referred by the local hospitals. AConsultant presence at Cork andGalway on a four to six weekly basisensures clinical input and an essentialcontact for the patient. Links are beingdeveloped with the local Hospitals inCork and a common AmputeeRehabilitation Pathway is beingagreed.

This strategy ably exemplifies the HSETransformation Programme (2007-2011) whereby access to care andservices are provided in a settingcloser to the patient’s home. Traveltimes in rural Ireland can be taxing forthe elderly amputee and their carers.

Joint specialist clinics (for example,Orthotics) with Vascular Surgery,Orthopaedics and Paediatrics are allexamples of seamless working fromthe pre-amputation stage, through thepost-amputation pre-prosthetic stageto the stage of prostheticrehabilitation. The majority ofdysvascular amputees rarely have justthe single amputation and the patientwith diabetes and single limb lossnever has another ‘normal’ limb.Resources are needed to pursue theseJoint clinics making use of availableclinic slots and Consultant visits.Access to expertise does not have tobe Dublin-centric.

The services of the NRH, already inplace, need to be enhanced anddeveloped.

The NRH model of Amputee andProsthetic Rehabilitation provides arobust template against which to stylefuture developments in the NationalPlan and Strategy for Rehabilitation.Existing structures need to be updated,consolidated and be injected withincreased capacity.

The present resources are at fullstretch and glued together by goodwill. An inter-disciplinary Consultantled service is the key to managing along-term condition effectively,efficiently and empathetically in anexemplary evidence-based manner.




RECOMMENDATIONS

• Improved access for allirrespective of age, diagnosis,prognosis or postcode

• Consolidating and improving theservice models already in place

• Developing new services asdetailed

• Developing National specialistservices

• Responding to clinical need with anincreased capacity and capabilityto deliver

• To Match availability of newtechnologies and, sometimesinappropriate demand for these,with astute clinical applicability ofthese technologies, making itpatient centered, and cost-effective

• Establishing a national resource –data, expertise, consultancy,appeal and a Centre for Excellence

• To assist the State in fulfilling itsstatutory obligations, help shapepolicy, provide best practiceguidelines, develop national serviceframeworks and advise onmanpower allocation

• Rehabilitation, Habilitation andEnablement are examples ofthorough and wise medicine. It isnot cheap. While costly, it can bemade more cost effective andprovide value for money. Thebenefits in the long run justify theinitial front-ended costs (LynneTurner Stokes). While the personwith an amputation or limb absencemay not have the samecatastrophic effects of a brain orspinal cord injury, theircircumstances are unique,personal, and strike at the core oftheir identity and bodily integrity.They are also more likely to getback to previous levels ofproductivity, employment andsocial re-integration (Departmentof Work and Pensions UK 2007)and should be afforded everychance to do so. This is theultimate aim of Rehabilitation –the resumption of desired roleswithin a meaningful life.


Paediatric Family-CentredRehabilitation Programme

App

endi

x

7

The Paediatric Family-Centred Rehabilitation Programme is thenational medical service for children and adolescents requiring aComplex Specialised Rehabilitation Service (C-SRS) as a result oftraumatic and non-traumatic brain injury, stroke, traumatic and non-traumatic spinal cord injury, neurological disorders, limb absence,other musculoskeletal and neuromuscular disorders.

Along with the other programmes inthe NRH, the Paediatric Service isaccredited by CARF (Commission forAccreditation of RehabilitationFacilities) and meets theinternationally recognisedrehabilitation standards forComprehensive Integrated InpatientRehabilitation Programmes (CIIRP).

International perspective/Models of Care

It is difficult to find services providing“generic” paediatric rehabilitationprogrammes for a population andcounty similar in size to that of Ireland.Most services in the US or UK would beABI or spinal cord injury specific. Twocurrent reference frameworks for thedelivery of services that are relevantto our situation in terms of populationhowever can be found in Australia.

1. In 2006 the Children, Youth andWomen’s Health Service in SouthAustralia (population of 1.5 million)formed an interagency group todevelop a Paediatric RehabilitationServices Plan for 0 – 18 year oldsonly. (Paediatric Rehabilitation

Service Planning – Sally-AnneNicholson).

They identified six areas of reformcovering an integrated serviceframework, child and family centricservices, key transition points,information exchange, emerginginterventions and workforcedevelopment. The NRH PaediatricProgramme demonstrates thesame holistic approach andambition to work seamlessly withdedicated community services.

2. The Victorian* PaediatricRehabilitation Service(VPRS) inAustralia(*population 5 million)began in 2005 to “specifically caterfor children and adolescents who,as a result of injury,medical/surgical intervention, orfunctional impairment, will benefitfrom a program ofdevelopmentally-appropriate,time-limited, goal-focusedmultidisciplinary rehabilitation”.

The VPRS description of inpatientservices could compare to thoseprovided by the NRH and thoseaspired to in relation to outreach.

A very significant area for healthpromotion generally is for the so called“mild” ABI . Developing a RED FLAGearly warning system, asrecommended by Mark Ylvisaker andTim Feeney in the U.S. would be avaluable national investment. Childrenwith “mild” ABI often have no physicaldeficits but can present with a myriadof problems such as poor attention andconcentration, problems withprocessing information and impulsivebehaviour. Many of these childrenremain undiagnosed having beendischarged from acute hospitals or arelater misdiagnosed with ADHD andother such conditions. A significantnumber of people in prison* have ahistory of mild or moderate brain injuryin childhood and early intervention mayhave helped to prevent such anoutcome.

(* Pat Mottram – 2007- on study ofHMP Liverpool, Styal and Hindley –sampled 2,298 prisoners and found48% reported head injury).


SERVICES PROVIDED – PAEDIATRICFAMILY-CENTRED REHABILITATIONPROGRAMME

A pre-admission assessment is carriedout to determine that the child oradolescent meets the admissioncriteria and to schedule theiradmission taking into account theirneeds, the waiting list for the serviceand the availability of resources.

The Paediatric Team carries out –

• Assessments

• Goal Planning

• Treatment

• Education, and,

• Discharge Planning

- for the rehabilitation needs of eachindividual child/adolescent taking intoaccount their individual levels ofimpairment, their current and potentiallevels of activity and their ability andwillingness to participate in theprogramme available.

Assessments address the needs ofeach child/adolescent according totheir age, stage of development, theirfamily and cultural background. Theinitial and ongoing assessments,include the following -

• Behaviour

• Cognition

• Communication

• Community

• Education/vocational

• Emotional

• Family

• Physical

• Sexual

Based on the initial and ongoingassessments, and with consideration ofthe child’s/ adolescent’s and family’scultural background, the individual planaddresses, as appropriate, the needs inthe following areas:

• Activities of daily living

• Adjustment of the child/adolescentto the activity limitation

• Adjustment of the family to theactivity limitation

• Assistive technology

• Bereavement/grief/coping

• Communication

• Community and schoolreintegration

• Driver evaluation and education

• Environmental modifications

• Growth and development

• Health education

• Learning

• Mobility

• Nutrition

• Play and leisure

• Reproduction

• Safety

• Sexuality

• Socialisation

• Spirituality

• Substance abuse

• Vocational

• Wellness

Education on-site for the PaediatricService

The Department of Education andScience provide schooling onsite for allchildren and adolescents (4 – 18years)attending the service as day andinpatients. This service is integral tothe rehabilitation process.

Staff in the school

• Principal

• Special Duties Teacher

• Outreach Teacher (12.5 hrs p.w.)

• Special Needs Assistants x 2

• School Secretary (7 hours p.w.)

(The school also has access to aSpecial Education Needs Organiserthrough the Department of Educationand Science).

Other services available on-site include

• Audiology screening• Discharge Liaison Occupational

Therapists (Dublin Area only)• Driving assessment• Neurology• Orthopaedic surgery –

consultations only here• Patient Advocacy Service• Respiratory therapy• Seating• Splinting• Vocational Assessments

Off-site Services

All other Paediatric sub-specialistservices are available via referral to thetertiary National Childrens’ Hospital.

Services offered to Family/Carers andPatient Support Systems

To meet the objectives of thePaediatric Family-CentredRehabilitation Programme information,education and counselling is offeredindividually or in groups. Psychosocialassessments and interventions areoffered on an individual basis.

Information regarding entitlements,services and referrals to appropriatecare pathway supports is alsoavailable.

APPENDIX 7 PAEDIATRIC FAMILY-CENTRED REHABILITATION PROGRAMME


Referrals for the inpatient service arereceived from across the Republic ofIreland and sometimes from othercountries when Irish citizens havesuffered a serious injury abroad. Thereferrals are for children andadolescents deemed to require a multi-disciplinary assessment and intensiverehabilitation intervention by a teamexperienced in the treatment of thepatient groups noted above. The levelof intervention required andexperience of the treating team wouldnot be available in community services.

The NRH inpatient paediatricprogramme is available over 5 days –Monday to Friday – for eight patientsat any one time (six beds and twotherapeutic day places). Weekends aretypically spent at home for the youngperson’s essential rest and to continuewith a home programme of activities.Where children are unable to go homebecause of the level of care required inthe early stages of rehabilitation theyare facilitated to remain in hospital forthe weekend.

Where children and adolescentsrequire intensive inpatient servicesover an extended period they willmostly attend Monday – Friday for 3weeks and then be at home for thefourth week to again rest and practiceindividually identified therapeuticactivities of daily living. This regulartime at home is designed to help thepatient and their family regroup and tobegin to reintegrate with the widercommunity.

Children and adolescents can also beoffered 2 or 3 days per week inpatientattendance if they and their family/carer are:

– Preparing/trial-ing for dischargeand transition home

– Are unable to commit for a full 5day week because of fatigue, ageor for other family reasons.

This arrangement of split weeks allowsfor a fuller utilisation of the Paediatricservices – e.g. two small fatiguedchildren with an ABI can share the oneweek of therapies or the team can usepart of the week to bring back youngpatients in need of review of theirrehabilitation needs (see more detailsunder “Outreach/Follow-up/Review/Outpatient section).

Following an individualised assessmentand goal planning process the inpatientchild/adolescent will receive directtherapeutic intervention, over andabove the nursing and medical care,ranging from 1.30 – 4.30 hours per daydepending on their age and ability toparticipate. School is also available forthose patients between 4 – 18 years ofage with skilled and experiencedteaching staff able to meet theindividual special learning needs ofeach child (ranging from 1.30 – 3.00hours per day)

The paediatric therapeutic team is asmall group i.e. 1 WTE post forphysiotherapy, occupational therapy,speech and language therapy, medicalsocial work and 0.6 for Psychology, 0.1for music therapy.

Admissions for 2008

The paediatric team worked with 33children and young people with a newABI and 50 other patients wereadmitted for review or aneuropsychological assessment (someof the children reviewed may have hadmore than one admission).

There were 4 new spinal injury patientsadmitted and 8 others reviewed.

Three new patients with limb absencewere admitted and 20 others reviewed.

Outreach/Follow-up/Review/Outpatient Services

The paediatric team is experienced atplanning for the child/adolescent’sdischarge and transition from inpatientcare to their home, community andlocal school. Along with preparing thefamily/carers for the return home,training is offered by the team toschool staff to help prepare them forthe needs of the young person. This isan important aspect of the process butcan be a pressure for staff in thehospital, taking them away from thedelivery of direct therapy, and for localschool personnel particularly if theyare a small school with few staff tocover absences from the classroom.

The Department of Education andScience have recognised the need toprovide an Outreach service tochildren/adolescents who aretransitioning from rehabilitation tolocal school. For the purpose ofoffering support and education toschool staff the D.E.S. has sanctioned12.5 hours per week to the NRH schoolto enable this vital link in therehabilitation process to take place.This initiative has been welcomed byschools, parents and students and hasled to increased and more beneficialparticipation of students in education.



Current local/primary care communityservices taking on rehabilitation fromthe NRH request information andeducation both at the time ofdischarge/transition and also postdischarge. They look to the NRHpaediatric team for guidance andrecommendations regarding treatmentbecause of the complex rehabilitationcritical mass experience and becauseof the changing and emerging needs ofthe young people.

When a child or adolescent has a braininjury, the insult is superimposed on adeveloping brain where basic skillssuch as reading and social skills maynot have been laid down. Some of theresulting difficulties, known as “sleepereffects” only emerge as the childmatures and fails to reachdevelopmental milestones in line withtheir peers. It has been hypothesisedthat children with certain injuries may“grow into” the deficits acquired as aresult of the trauma (Chapman &McKinnnon, 2000).

Timely specialist inter-disciplinaryreviews of the needs of children andadolescents with these chronic careconditions is essential and a long-termperspective as to their changing needsis required. Transition from primary tosecondary school for example, whenthe young person is confronted withnew challenges and increasingly morecomplex tasks is often a crisis point.Building and retaining skills andexperience in a range of communityservices for the complex injuries isdifficult and thereforelinkage/integration with the tertiarypaediatric rehabilitation service isessential.

Currently the NRH paediatricprogramme offers a review service tothe following past patients (all under18 years) – ABI - 140, Spinal Injury -15, Neurology - 17, limb absence – 36.There are some 30 additional patientswho require transfer and introductionto adult services.

Reviews are planned on an individualbasis or in peer groups for children andadolescents confronting similarchallenges in their rehabilitationpathway.

Outpatient services are limited - theO.T. service has 3 hours per week forlimb absence outpatient clinics. Thesocial work department has 0.2 of its 1WTE earmarked for outpatient workbut they and all other disciplines,particularly neuropsychology,undertake significant outreach, liaisonand follow-up.

Community Services/Continuum of care/Networks

The availability of services in thecommunity for children dischargedwith continuing rehabilitation needs isvery inconsistent. A variety oforganisations take referrals across thecountry e.g. Enable Ireland in Galway,Cope in Cork and Early Intervention inClare. All have different abilities torespond and allocate services. Somehave waiting lists for services of 18months.

Discharges from the NRH can bedelayed when services are notavailable or the level of servicerequired is not available. Dischargingchildren who have achieved theirrehabilitation goals to the point wherethey could be maintained and continueto improve if they could receive weeklyinput from local services is not an easyoutcome to achieve. Deciding thereforeto discharge a child who needs weeklyinput knowing that this will not beavailable presents the team with anethical challenge.

RECOMMENDATIONS

Children and adolescents admitted tothe NRH present with the mostcomplex rehabilitation needs requiringhigh levels of skilled therapeutic input.Where children can be assessed andthen returned to their communityservices with the appropriate level oftherapy this is done. No child/familywants to be separated from homeunnecessarily. Parents have workcommitments and responsibilities toother family members/dependants sothose children and adolescents who areadmitted to the NRH are admittedbecause they are in need of theintensive skilled therapeutic input thatis unavailable elsewhere.

The improvements and benefits ofincreased bed availability (an increasefrom the current therapy services for 8patients to 20, plus from a 5 dayservice to a 7 day service), betterseparate/adjacent child/adolescentfocused facilities and more staffingpromised in the new hospital project isgreatly anticipated. Waiting times foradmission would be reduced, thenecessary reviews could be moreeffectively and reliably managed andthe needs of the different age rangescatered for. Expecting teenagers andtwo years olds to share the samephysical spaces is outdated, especiallyas we know now that adolescentsprogress faster in health care settingsthat are adolescent focused.Vulnerable sixteen to eighteen yearolds would also, with the additionalbeds in the new hospital, not need to beplaced around the hospital on adultwards as at present.



The provision of a dedicatedinterdisciplinary paediatric Outreachservice is a most necessary importantdevelopment to enhance rehabilitationservices for children and adolescentsin Ireland. This would allow therapiststo go out from the specialist service towork with the family and withcommunity services, plus take on someof the regular reviews in thecommunity. It would relieve pressureon the inpatient service and facilitateeducation and training in thecommunity. Parents report thatreturning home after rehabilitation canbe the most stressful of times postinjury/serious illness.(See “Living withan acquired brain injury duringchildhood and adolescence: An IrishPerspective)

Pre-school play and education foryoung children attending the NRH iscurrently not available. Parentsidentify this as a major gap in theservices within the hospital andadditional resources are needed tomeet this need in the future.

The introduction of a Music therapyservice in 2008 has been verypositively welcomed by patients,families and staff. The service is for 1day per week only and is supportedthrough donations to the NationalMedical Rehabilitation Trust Limited.Establishing this as a permanenttherapy available to the patients intothe future is a goal for the furtherdevelopment of holistic rehabilitationservices.

In the coming months the team will beworking towards a specialist PaediatricFamily-Centred CARF accreditationapplication thereby meeting furtherinternationally recognised standardsfor paediatric rehabilitation.

We recommend that any rehabilitationfacility be similarly accredited toensure excellence in service provision.

A RED FLAG early warning system,should be developed as recommendedby Mark Ylvisaker and Tim Feeney inthe U.S .



1. Horn, Lawrence Systems of Care for the person with Traumatic BrainInjury Traumatic Brain Injury 1992; 3: 475-492

2. Turner-Stokes L. Rehabilitation following acquired brain injury: nationalclinical guidelines. Turner Stokes L, editor. London: British Society ofRehabilitation Medicine/Royal College of Physicians, 2003.

3. Turner-Stokes L, Williams H, Abraham R, Duckett S. Clinical standardsfor inpatient specialist rehabilitation services in the UK. Clin Rehabil1999; 14:468–80.

4. Turner-Stokes L, Williams H, Abraham R. Clinical standards forspecialist community rehabilitation services in the UK. Clin Rehabil2001; 15:611–23.

5. World Health Organisation. International classification of functioning,disability and health. Geneva: WHO, 2002.

Reference List

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Tel: (01) 235 5000 Fax: (01) 285 1053 Web: www.nrh.ie
