Aged Care Network. Parkinson s Disease Services Model of Care

Transcription

1 Aged Care Network Parkinson s Disease Services Model of Care For the Older Person in WA 27 May

2 Department of Health, State of Western Australia (2008). Copyright to this material produced by the Western Australian Department of Health belongs to the State of Western Australia, under the provisions of the Copyright Act 1968 (C wth Australia). Apart from any fair dealing for personal, academic, research or noncommercial use, no part may be reproduced without written permission of the Health Networks Branch, Western Australian Department of Health. The Department of Health is under no obligation to grant this permission. Please acknowledge the WA Department of Health when reproducing or quoting material from this source. Suggested Citation: Department of Health, Western Australia. Parkinson s Disease Services Model of Care. Perth: Aged Care Network, Department of Health, Western Australia; Important Disclaimer: All information and content in this Material is provided in good faith by the WA Department of Health, and is based on sources believed to be reliable and accurate at the time of development. The State of Western Australia, the WA Department of Health and their respective officers, employees and agents, do not accept legal liability or responsibility for the Material, or any consequences arising from its use. 2

3 Table of Contents EXECUTIVE SUMMARY...4 ACKNOWLEDGEMENTS...6 RECOMMENDATIONS DRIVERS FOR CHANGE Increasing Prevalence of Parkinson s Disease World Health Organisation (WHO) World Charter Previous WA Health Reports Specific Management Issues Relating to Parkinson s Disease Qualitative and Quantitative Evidence Pointing to Gaps in the Current Service Delivery Framework Increase in demand for services Need for interdisciplinary care Lack of access to appropriate services outside the acute sector Equity of access issues for PWP for clinical inpatient and out-patient maintenance services in the Eastern metropolitan region, the Mandurah region and PWP who access WACHS services Emphasis on outpatient and ambulatory care initiatives Workforce constraints OBJECTIVES OF THE SERVICE DELIVERY MODEL OF CARE FUTURE SERVICE DELIVERY MODEL OF CARE FOR PEOPLE WITH PARKINSON S DISEASE IN WA CONTINUUM OF CARE APPROACH CONFIGURATION: SERVICE DELIVERY MODEL OF CARE FOR PWP Support Requirements OLDER PERSON WITH PD PATIENT JOURNEY GLOSSARY APPENDICES Appendix 1: Literature Review Appendix 2: Statistical Data Relating to Age and Gender for People with Parkinson s Disease Appendix 3: Key Issues Relating to the Care And Management of People with Parkinson s Disease Appendix 4: Service Delivery In Western Australia Appendix 5: Statistical Data Relating to Current Service Delivery in WA for Parkinson s Disease Appendix 6: Emergency Assessment of Patients with Parkinson s Disease Appendix 7: Best Practice Frameworks for the Management of People with Parkinson s Disease Appendix 8: Service Figuration Suggested timelines for implementation REFERENCES

4 EXECUTIVE SUMMARY The WA public health system is fortunate to have a strong foundation for the provision of services to people with Parkinson s Disease (PWP). In this context, the service delivery model of care does not advocate fundamental changes to the current configuration and seeks to build and capitalise on the existing framework of service delivery. The model proposes a strengthening of services that are provided at the specialist clinics currently operating north and south of the river at Osborne Park Hospital and Fremantle Hospital Moss Street Clinic It proposes an extension of similar services to the East Metropolitan area and the Mandurah region through an outreach mobile service. ing of clinical services to the rural and remote regions of WA is also promoted. Improvements in diagnosis and management of PWP in the acute sector is a key feature of the model including a focus on screening for risk factors in the emergency department setting. The model proposes a greater focus on the management of PWP away from the acute sector in order to prevent avoidable admissions. This will not be achieved without a sustainable approach to the provision of services in an ambulatory care context to enable the delivery of appropriate therapy services. ing of communication processes that link General Practitioners and specialists to the WA health system is also required in order that appropriate treatment and therapy is provided, particularly in the early stages of the disease. Conversely, general practitioners and specialists must be able to confidently refer patients to the public system in the knowledge that services are available that can appropriately meet the needs of the PWP. A committed approach to the integration of care across the continuum is a fundamental requirement for an improved model of care that is focussed on the needs of the PWP. The nature of a neurological condition such as Parkinson s Disease requires a strong approach to the development of links between the primary care and the acute care sectors and between the acute and community care sector. Education and training across the health system is integral to better care and service delivery that meets the particular needs of the PWP and the carer in an appropriate and timely way. The major areas of impact will be in the area of additional clinical and allied health services and the emphasis on training and education across the WA Health system and beyond on the particular nature of the management and care of the person with Parkinson s Disease. The approach outlined in this model may seem to focus disproportionately on improvements in care across the acute and sub-acute care sectors. However, this focus should not be seen to overshadow or undervalue the role that ambulatory or community care support services play in supporting the desire of PWP and their carers to live in the community as independently as possible. 4

5 Without a commitment to the development and strengthening of such services, the desired outcomes of PWP to remain in the community may not be fully realised. In the light of an expected increase in the prevalence of Parkinson s Disease due to demographic ageing (with a growth rate of 3%/year), it is intended that Model of Care for Parkinson s Disease Services will respond to the challenges that lie ahead for the WA Health system. Dr Peter Goldswain CLINICAL LEAD AGED CARE NETWORK 5

6 ACKNOWLEDGEMENTS The development of the Model of Care for Parkinson s Disease Services for the Older Person in WA was developed through the collective membership of the Aged Care Network Sub-group for Parkinson s Disease Services. The time, expertise, willingness to attend meetings around busy work schedules and a collaborative approach was invaluable in providing direction and guidance for the development of the model. Particular thanks goes to the Dr Barry Vieira, Dr Mark Wilson, Dr Peter Silbert, Vivian Lee, Janet Doherty and Justine Payne for providing valuable advice. Janice Guy from Fremantle Hospital and Andrea Wynd from the North Metropolitan Health Service also provided information for the document. Special thanks also goes to Hilary Johnston who so willingly and efficiently was able to provide data to support the work of the sub-group. Trish Morton-Smith and Anne Riordan brought the document to completion. The Aged Care Clinical Advisory Committee and the Executive Committee of the Aged Care Network also provided input and advice to bring the document to completion. Jenny Stevens, Aged Care Director, WA Country Health Services also provided advice and comment. Further feedback on the document was sought at the Aged Care Network stakeholder Forum held on 9th April, Questionnaires relating to the model were distributed across the WA Health system to seek further input. TERMINOLOGY NOTE PD Parkinson s Disease PWP People with Parkinson s 6

7 RECOMMENDATIONS Best Practice Framework 1. Adoption of National Institute of Health and Clinical Excellence (NICE) Guidelines 2006 as the best practice framework for the Service Delivery Model of Care for Parkinson s Disease. Research, Education and Training 2. Development and implementation of a sustainable education and training framework targetted to: medical, nursing and allied health staff in the acute care setting at Level 6 and Level 5 hospitals general practitioners, specialist neurologists, registered medical officers community care service providers, PWP and their carers and residential aged care service providers medical, nursing and allied health staff in the acute care setting at WACHS Regional Resource Hospitals Aged Care Assessment Teams (ACAT s). 3. Education and training framework to be supported on a sustainable basis. 4. Commitment to pilot study initiatives that contribute to longitudinal research on primary health care interventions for PWP. Interdisciplinary Care 5. Incorporation of: neurological consultation services at Specialist Clinics North and South Metropolitan Regions psycho-geriatric consultation services at Specialist Clinics in North and South Metropolitan Regions with dedicated access to clinical psychiatric services when required. Expansion in the clinical services of this nature will be required. strengthened of referral pathways to geriatricians and/or Specialist Clinics North and South Metropolitan Regions. 6. Commitment to a dedicated interdisciplinary care service for Parkinson s Disease at the Specialist clinics that recognises the need for clinical specialist and medical input. 7. Establishment of mobile interdisciplinary care team to service East Metropolitan region and Peel Health Campus region and to be based at Fremantle Hospital Moss Street Clinic. The permanent location of the clinic at the Bentley site to be established when demand grows to a sustainable level. 8. Integration of the Australian Neurological Research Institute as part of the service delivery model of care for selected elderly patients with PD. 9. Commitment to the establishment of a formal agreement between WACHS and metropolitan Level 6 sites. 7

8 10. The formal agreement with WACHS should also include dissemination of information regarding the organisation and distribution of specialist services, agreement to protocols for access to these services for WACHS patients, provision of advice to WACHS staff regarding treatment for patients with PD, and education and training for WACHS staff regarding PD. Assessment Processes in the hospital setting 11. ing and extension of risk screening identification processes in all metropolitan Level 5 and Level 6 hospitals that have an Emergency Department through the COAG Elder Care Pathway and Coordinated Care Teams. 12. ing and extension of risk screening identification processes in all WACHS Regional Resource Hospitals that have an Emergency Department through the COAG Elder Care Pathway and NAP Coordinators. 13. ing and extension of comprehensive assessment processes in all metropolitan Level 5 and 6 hospitals and WACHS Regional Resource Hospitals for early identification and intervention for the management of Parkinson s Disease. 14. Implementation of an identification and management protocol in acute care for PD as a co-morbidity. Ambulatory Care 15. Expansion of Outpatient Day Therapy Centre (Day Hospital) services at Fremantle Hospital Moss Street Clinic and OP hospital to provide interdisciplinary care for PWP who live in the community. 16. Liaison Officer located at Outpatient Day Therapy Centre to act as referral point for General Practitioners and community care service providers who manage or provide services to PWP in the community. 17. Expansion of community based rehabilitation therapy services provided for PWP who live in the community. 18. Development of specific model of care for the delivery of services, including rehabilitation and multi-disciplinary therapy from Day Therapy Centres. Infrastructure Support 19. Appropriate service support for the two Specialist Clinics at FH and OPH to meet increases in demand due to ageing population trends and current waiting list issues. 20. Equity of access to in-patient beds for PWP referred from the Fremantle Hospital Moss Street Specialist Clinic to the acute medical wards. 21. Development and provision of appropriate rehabilitation therapy facilities and equipment for the outpatient Day Therapy Centres and for RITH ambulatory care services. 22. Promote tele-health services and clinical support to rural and remote consultancy service delivered from Specialist Clinics. 8

9 23. Provision of adequate administrative support services to promote accurate and timely collection of data relating to service delivery and the management of PWP. Integrated Care 24. Promotion of integrated care with PAWA PD nurses linked to Day Therapy Centres and Specialist Clinics at Fremantle Hospital Moss Street and Osborne Park Hospital. 9

10 1. DRIVERS FOR CHANGE Considerable progress has been made since the late 1990 s to improving services for PWP in Western Australia with gradual improvements to the range of services available. However, through consultation with the Parkinson s disease Aged Care Network sub-group and extensive research of the evidence base, a number of issues have been identified as motivators for improvements to the provision of services along the continuum of care for PWP in Western Australia. and the need to build on the developments that occurred in 2002 with the establishment of two Specialist Centres for PD in the North and South Metropolitan regions. 1.1 Increasing Prevalence of Parkinson s Disease Access Economics 1 conservatively estimates that in 2005, more than 54,700 Australians were living with PD, of which 28,100 were male and 26,600 were female. (An extensive outline of the prevalence of PD and the costs to Australian health system are outlined in Appendix One Literature Review.) It is estimated that there are approximately 7,000 people in Western Australia living with PD. 2 Prevalence dramatically increases with age, from 290 per 100,000 for people aged 55 to 64 years to 2,940 per 100,000 for people aged over 85 years. Males are more likely to have PD than females. 3 Unpublished data fromthe WA Health Information, Collection and Management Branch (ICAM) reflects similar trends. The number of inpatients with PD as a principal diagnosis has slowly increased over the period 2000/01 to 2005/06 (Appendix Two, Table 1.1 and 1.2). The gender split also indicates the same trend with a greater proportion of males than females presenting to an inpatient service. In 2000/0, 53% of males presented, while in 2005/06, 60% presented (Appendix Two, Table 1.1 and 1.2). PD has a higher prevalence rate (64.7/100,000) than a number of diseases and injuries considered National Health Priority Areas (NHPAs) in Australia including some cancers and injuries. 4 For people aged over 55, the prevalence of PD is also higher than a range of diseases including breast cancer and infectious diseases combined. 5 1 page i & 20. Access Economics Pty Limited. Living with Parkinson s Disease Challenges and Positive Steps for the Future. Canberra; Access Economics Parkinson s Association of WA accessed 9/11/07. 3 Page 20, Access Economics Pty Limited. Living with Parkinson s Disease Challenges and Positive Steps for the Future. Canberra; Access Economics page 104, Access Economics, Pty Limited. Living with Parkinson s Disease Challenges and Positive Steps for the Future. June The cancers include prostrate, lymphatic and leukaemia, kidney and bladder, uterine, cervical and ovarian. The injuries include homicide and violence, suicide and self inflicted. 5 page 104, ibid. The diseases are breast cancer, colorectal, stomach, liver and pancreatic cancer and infectious disease combined. 10

11 Compared to other neurological conditions, PD has the second highest prevalence rate and number of deaths, exceeded only by dementia. 6 Further to this, Access Economics reports that it is believed that the prevalence of the disease is expected to grow by 15% in the next five years (equivalent to growth rate of 3% per annum), due to demographic ageing. 7 These trends indicate that the overall demand for services for PWP will increase, particularly as the population ages and a greater proportion of older people live longer. The particular care needs of the older person with PD at each stage of the disease will be need to be taken into account. The trend in increasing prevalence is reflected in the gradual increase in counts of WA public metro hospital separations (including public patients at JHC & PHC) where a diagnosis of Parkinson's disease was recorded, (Table 1.3, Appendix 5). The data demonstrates in there were 1231 separations, while in there were 1256 separations. Sir Charles Gardiner Hospital, recorded the highest number, successively RPH, followed by FH and OPH. 1.2 World Health Organisation (WHO) World Charter 8 The WHO World Charter 1997 has informed the need to promote service delivery improvements to the model of care for PWP. The model of care has sought to incorporate the following rights for PWP: be referred to a doctor with a special interest in Parkinson s disease receive an accurate diagnosis have access to support services receive continuous care: and take part in managing the illness 1.3 Previous WA Health Reports Previous work conducted by the Rehabilitation and Aged Care Integrated Clinical Service project team has also informed the development of this current model of care The reports emphasised the need for integrated care and strengthened links between the sectors along the continuum of care. The model of care also emphasises these elements. 1.4 Specific Management Issues Relating to Parkinson s Disease The literature and research evidence (Appendix One and Three) indicates the following: 6 page 104, ibid. 7 page ii, Access Economics Pty Limited. Living with Parkinson s Disease Challenges and Positive Steps for the Future. Canberra; Access Economics European Parkinson s Disease Association website accessed 18 October Dr P Goldswain, C Rehberger, Sue Kent, Garry Wallace. Proposal for the development of a specialised unit for Parkinson s Disease. Metropolitan Health Service Department of Health. 10 Prognosis Consulting, Centre of Excellence for Parkinson s Disease A business case for the establishment of a Centre for Parkinson s Disease in WA. August

12 the difficulty in determining an accurate diagnosis the need for a specialist diagnosis as patients are frequently misdiagnosed by less experienced doctors. the importance of an early diagnosis in improving the impact and the progression of the disease need for improvement in early diagnosis strategies in the primary care sector the importance of early intervention the importance of accurate medical management of drugs limited awareness amongst medical, nursing and allied health in the acute hospital system of the management issues of a PWP as the disease progresses lack of strong linkages with the primary care sector significant prevalence of co-morbid ambulatory conditions significant risk of depression and psychotic episodes associated with PD improved outcomes for PWP with interdisciplinary care including input from neurologists, psycho-geriatricians, counsellors, social workers and need for understanding of the progression nature of PD and appropriate management strategies at each stage of the illness. A consistent finding across the research is the lack of awareness and understanding of the disease and the distinct stages of the disease across a number of levels in the health system including general practitioners, medical specialists in other fields, doctors and nurses and allied health professionals working in hospitals, aged care facilities such as nursing homes and private practice. The research indicates that there are many health professionals who have little or no knowledge of PD and the commonly associated psychiatric and cognitive issues. This can lead to unintentional and inappropriate treatment. Missed or misdiagnosis is common which causes distress to patients and prevents patients receiving adequate or correct management of medication and treatment at all stages of the disease but especially in the early stages. 1.5 Qualitative and Quantitative Evidence Pointing to Gaps in the Current Service Delivery Framework A strong framework provides in-patient and out-patient services from two specialists units. The units are supported by two community based Parkinson s Disease nurse specialists funded by WA Health and an additional nurse funded by the Parkinson s Association of WA (PAWA). They provide case management services for PWP. Appendix Four outlines the full range of current service delivery arrangements in WA. The current situation in WA can be characterised as possessing a sound infrastructure framework. It is now necessary to capitalise on this framework and build on the services available. Quantitative evidence has been sourced from the WA Health morbidity data system while qualitative evidence has been sourced from the consultation with Parkinson s Disease Aged Care Network sub-group. There are a number of areas that indicates pressure points and/or gaps in the current service delivery framework. These relate to: 12

13 1.5.1 Increase in demand for services The statistical data indicates increases between 2000/ /06 for services in the following areas: Inpatient services The data in Table 1, Appendix Five demonstrates that an increase has occurred in the number of episodes with a principle diagnosis of PD. The total number of episodes presentations of PWP with PD as a principle diagnosis at hospitals increased from 280 in 2000/01 to 304 in 2005/06. A positive trend is indicated in the fall in average length of stay over this period 20.6 days in 2000/2001 to 11.5 days in 2005/2006 and the decrease in the overall occupancy of beds from 15.8 beds per day to 9.5 beds per day in 2005/2006. An increase in the number of episodes where there was a co-morbidity of PD is also demonstrated over this period. Table 2, Appendix Five demonstrates the increase in the number of episodes from 968 in 2000/2001 to 1068 in 2005/2006. A similar positive trend is indicated in the fall in average length of stay days to 15 days) and a small reduction in the number of beds occupied on a daily basis across the health system by an inpatient who has a co-morbidity of PD, (48 beds in 2000/01 to 44 beds in 2005/2006). Day hospital services The data in Tables , Appendix Five demonstrates an increase the number of referrals, patients and occasions of service for physiotherapy have increased at OPH Day Hospital. The data in Tables ; Appendix Five demonstrates an increase the number of referrals, patients and occasions of service for physiotherapy have increased at the Fremantle Hospital Moss Street Day Clinic. The date demonstrates the waiting times for access to such services. A key component of the care of PWP is early identification and intervention, particularly in the areas of correct diagnosis and medication management and allied health therapy. Appendix Three outlines the special nature of the management of PD and the requirements at each stage in the progression of the disease. Qualitative evidence from the Parkinson s Disease sub-group indicated that waiting times were a discouragement for patients and referring specialists with the result that PWP were managed and specialists developed alternative treatment plans. Qualitative evidence ranged from swamped with numbers. (leads to waiting times for referral to Specialist Clinics). GPs then starting on drugs (perhaps inappropriately) patients become difficult to manage.or referring to someone else. PAWA Nurse specialist services Since the inception of the Parkinson s Nurse Specialist service in the Perth Metropolitan area in 1998, the number of new referrals has increased from 62 to 13

14 191 in 2006 with an average new referral rate of approximately 200/year. 11 (see Table 5, Appendix Five). The total number of clients has increased from 62 in 1998 to 1819 in The Nurse specialist service reports increased demand for services in the Mandurah Peel region and in the inner city east metropolitan area. 12 Table 6, Appendix Five outlines the range of services that the Parkinson s nurse specialists provide Need for interdisciplinary care The research evidence points to the need for interdisciplinary care team from the disciplines of medicine, neurology, psychiatry, physiotherapy, occupational therapy, speech pathology, social work, nursing, psychology and dietetics. There are discrepancies between the FH Moss Street Specialist Clinic and the OPH Specialist Clinic in this regard. An issue of dedicated support for services to PWP arises at FH with no specific support for specialists or medical staff for work associated with PD. The service is absorbed as part of the general geriatric medicine workload, where specific service support provided in the past, was mainstreamed as general geriatric services. One Parkinson's Clinic staffed by a consultant and an advanced trainee is conducted at FH Moss Street and PWP are absorbed into the clinics. This clinic is supported by one full-time physiotherapist and a half time administrative clerk. This results in particular equity of access issues for PWP to specialist clinical services across the public system. In addition, there is also difficulty at FH in accessing in-patient beds for PWP who require medical care and management in the inpatient setting. The need for neurological and psycho-geriatrician services is also important. Nonmotor symptoms such as psychotic episodes, depression and anxiety are not always well managed in the primary care sector and the acute system is often seen as the most appropriate place to manage such patients or the place of last resort. Tables 7.1 and 7.2, Appendix Five, (extracts below) illustrates these types of PD co-morbid conditions are amongst the top five conditions of the 50 most common conditions with the lengths of stay in the inpatient setting amongst the highest. 2000/01 3. Depressive episode unspecified 66 days 4. Dementia unspecified 29 days 11 page 12, Submission The Expansion of the Parkinson s Nurse Specialist Service. Parkinson s Western Australia Inc. March Summary, Submission The Expansion of the Parkinson s Nurse Specialist Service. Parkinson s Western Australia Inc. March K Ahlskog J E. Beating a dead horse: Dopamine and Parkinson Disease. Neurology 2007; 69, Shannon K M. Dopamine: So last century. Neurology 2007;

15 2005/06 3. Paranoid schizophrenia 62 days Lack of access to appropriate services outside the acute sector Residential aged care options Tables 7.1 and 7.2, Appendix Five, demonstrate the average waiting times for PWP in an inpatient setting (36 days in 00/01 and 20 days in 05/06) who were waiting for admission to residential care. This represents an inappropriate use of beds in the WA health system. Respite care for carers of PWP 15 The ICD code Holiday relief care illustrates that the hospital inpatient setting is used as a respite facility when necessary as there is no other appropriate respite service. 2000/ /06 48 episodes Average of 10 days/episode 31 episodes Average of 7.8 days/episode Equity of access issues for PWP for clinical inpatient and out-patient maintenance services in the Eastern metropolitan region, the Mandurah region and PWP who access WACHS services Table 8, Appendix Five, illustrates that the bulk of inpatient admissions of PWP with a principle diagnosis of PD in the combined years of 2000/2001 and 2005/2006 occurs at the public hospitals in the North and South Metropolitan region with small distributions in the country regions. It is important that PWP have access to specialist assessment and review services as well as access to adequate allied health therapy services. Table 9, Appendix Five, illustrates the distribution of public metro hospital separations (including public patients at JHC & PHC) where a diagnosis of Parkinson's disease was recorded for the years 05/06 and 06/07. It is important that there is equity of access to integrated community-based care that is co-ordinated by a multidisciplinary team and has access to specialist review. The distribution of separations has highlighted the need for mobile outreach services to service the catchment areas around Bentley, and the Peel Health Campus and an outreach service to WACHS Regional Resource Hospitals. It also 15 Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November Metropolitan public hospitals, all private hospitals. 15

16 reinforces the need for improved integration of services and training and education of health staff across the WA on the care issues relating to PD Emphasis on outpatient and ambulatory care initiatives The WA Health system has recognised the need for a move towards ambulatory care services as means to reduce hospital admissions and lengths of stay. An integrated community based rehabilitation therapy service is appropriate for the management of PWP. The research evidence indicates that the treatment and management of PWP can be appropriately and effectively managed while a person lives independently in the community. It is also in the best interests of the PWP to be able to achieve this aim for as long as possible. As one member of the sub-group stated, a PWP should not be seen in the acute sector unless due to an unforseen acute event and admission should be avoided at all costs. The statistical evidence indicates that pressures exist in services that are currently providing outpatient services. Waiting lists exist at OPH Day Hospital and FH Moss Street Clinic for physiotherapy services (see Tables and , Appendix Five) and for PAWA nurse specialists where the waiting time is 4 weeks to see a PAWA nurse specialist. There is also considerable pressure on the dedicated social worker component at the OPH PD Social Work Service (See 3.5, Appendix Five). The role of the social worker is integral to the ability of the PWP and the carer to function as independently as possible in the community. The role of counselling, support and education is important in the early stages of the disease, with in-depth intervention and support for the later stages of disease to enable effective community support and assistance with placement into residential care at the end stage. The sub-group identified a need for an expansion in allied health therapy services and community based therapy services for people who had entered the later stages of the disease. Provision of these services could delay or avoid admission to residential care. The capacity to support these patients does not exist at this stage either at the Specialist Centres or ACRU s in the metropolitan regions or through WACHS services. Data relating to discharge separations Table 10, Appendix 5) indicates that the majority of PWP are discharged to the community, demonstrating the ability for most to effectively live independently in the community. Expansion and development of services to optimise independent living and postpone the need for residential care should be an important focus for service development Workforce constraints Qualitative evidence provided by the sub-group indicated problems with the turnaround of junior medical staff that see public patients in clinics, issues with adequately trained allied health for inpatients and issues with rotating of this staff. The lack of experienced staff who have an understanding of the specialised care needs of PWP exacerbates the impact of the constant turnaround of medical, nursing and allied health staff results.and. the constant need to educate and the loss of this knowledge once the staff member leaves. 16

17 The two major clinics for PWP in the Perth metropolitan area are currently running to capacity for referrals to allied health disciplines. This is evidenced by the waiting list numbers and waiting times for physiotherapy (tables and ). Referrals to social work services has also increased, with concomitant increases in waiting times. 16 The pressure on allied health resources will continue to increase as the number of PWP cases is projected to rise. 16 See Appendix 5,

18 2. OBJECTIVES OF THE SERVICE DELIVERY MODEL OF CARE The objectives of the service delivery model are determined by the progressive and chronic nature of Parkinson s Disease and the different management approaches required for each of the quite distinct stages. The stages are 17 : Stage One: Diagnosis and Early Treatment The first stage has a median duration of about 7 year s. Objectives early diagnosis correct clinical diagnosis early intervention management therapies including physical exercise programs counselling and support for the carer, PWP and family education for patient and carer Stage Two: Maintenance The second stage is characterised by fluctuations in ability/disability and treatment is variable according to the needs of the PWP. This stage usually commences from approximately year 7 onwards and can last to up to 7 years. Objectives maintenance of normal functioning and self-care appropriate medical management maintenance of condition with access to exercise based therapy programs rehabilitation strategies in community based settings community care support services education for patient and carer Stage Three: Complex End Stage The third stage is characterised by significant mobility, cognitive and psychological deterioration. It is also characterised by the need for palliation as the progression of the disease advances. Objectives appropriate medical management appropriate drug management appropriate neurological, psychological and psychiatric support appropriate palliation options that focus on quality of life 17 page 6, Dr P Goldswain, C Rehberger, Sue Kent, Garry Wallace. Proposal for the development of a specialised unit for Parkinson s Disease. Metropolitan Health Service Department of Health. 18

19 3. FUTURE SERVICE DELIVERY MODEL OF CARE FOR PEOPLE WITH PARKINSON S DISEASE IN WA Role of Best Practice Guidelines NICE Guidelines 2006 The model of care has been informed by the recent publication of the National Institute for Health and Clinical Excellence (NICE) Guidelines 18 relating to Parkinson s Disease management. They were released in June The guidelines were developed on the basis of extensive research into best practice approaches and research studies. They were also developed with extensive input from consumers, carers and families. They also reflect and support 1997 Global WHO declaration on PD and the World Charter for People with Parkinson s Disease. The guidelines also contain extensive costings reports that demonstrate national savings and costs associated with implementation of the guidelines. The Parkinson s Disease Aged Care Network sub-group proposed that the NICE Guidelines be adopted as the framework f or best practice in WA. On this basis, this model has incorporated and adapted the requirements of the best practice approach as proposed by the NICE Guidelines in the configuration of services for PWP for the WA Health system. The release of the Guidelines is timely as they point to priority areas the sub-group identified as areas that required strengthening across the WA Health system. Therefore, they serve as an appropriate guide in which to develop a robust service delivery model across the continuum of care. The sub-group agreed that key priorities for implementation should be emphasised as the basis for a strong model of care and are included in Appendix Six. Recognition of the differences in professional roles and responsibilities between the UK and Australian health care environment will need to be taken account in the application of the NICE Guidelines. An example of this is the professionalised role of the social worker in Australia where significant functions are undertaken by the social worker in support, counselling and education as well as the linkage role to the community care sector. 18 National Health Service. National Institute for Health and Clinical Excellence. June Parkinson s disease. NICE clinical guideline no

20 4. CONTINUUM OF CARE APPROACH A continuum of care approach has been adopted in the outline of the model on pages It has been constructed in table format in order to show the link between the NICE Guidelines and the integration into the service delivery model of care for PD. The priorities areas have been incorporated in the continuum of care approach to service delivery outlined below. NICE GUIDELINE REFERRAL TO EXPERT FOR ACCURATE DIAGNOSIS People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of the condition. Suspected mild PD within 6 weeks New referrals in later disease with more complex problems require an appointment within 2 weeks. A. PRIMARY HEALTH CARE SECTOR - Appointment/Consultation GP referral to specialist neurologist GP referral to specialist geriatric medicine clinic at OPH or FH Moss Street GP referral to specialist mobile service at Bentley, Peel Campus Specialist neurologist referral to OPH, FH Moss Street, Bentley, Peel Campus GP referral to PAWA PD specialist nurse Specialist neurologist referral to PAWA PD specialist nurse PAWA PD specialist nurse referral to neurologist and/or specialist clinics GP referral to Liaison Officer at Day Therapy Centre for review and management Referral of the PWP and the carer (by GP and PAWA nurse) to exercised based programs in the community New services /new service Continue 20

21 B. ACUTE CARE SECTOR - Entry of PWP to hospital Risk screening identification at Emergency Department for cognitive risks as part of the COAG Elder Care pathway through the Care Coordination Teams (CCT s) or NAP Coordinators in WACHS Regional Resource Hospitals These indications are: 1. Tremor 2. Rigidity 3. Slowness of movement (bradykinesia) Comprehensive assessment by CCT and NAP Coordinators following identification of risk using assessment for PD indications that incorporated in the assessment tools. (see Appendix Six) Recommended referral to geriatrician for review Recommended referral to specialist clinic at OPH, FH Moss Street, Bentley for review New process New process New in some areas strengthen in other areas 21

22 2. DIAGNOSIS AND EXPERT REVIEW Diagnosis of PD should be reviewed regularly (regular intervals of 3 months, 6-12 months) and reconsidered if atypical clinical features develop. Acute levodopa and apomorphine challenge tests should be not be used in the differential diagnosis of parkinsonian syndromes. A. PRIMARY CARE SECTOR Appointment/Consultation for review PAWA PD Nurse to facilitate review process Specialist neurologist or physician/geriatrician to conduct review GP referral to specialist geriatric medicine clinic at OPH or FH Moss Street for review Continuation B. ACUTE CARE SECTOR - Entry of PWP to hospital Medical and nursing staff aware of the important need to manage the administration of drug regimes appropriately. Support material to be provided in hospital Nurses Manual. Geriatrician consultation services provided for possible diagnosis and review Psycho-geriatrician consultation services provided for review - additional FTE input on consultation/liaison basis required Acute ward referral to specialist clinic at OPH, Bentley FH Moss Street PAWA PDN to supports the need for medical review in acute system if atypical clinical features develop New initiative training required and protocols New service Continue C. SUB-ACUTE SECTOR PWP at SPECIALIST CLINIC for review Registered medical officers to conduct reviews at recommended intervals at outpatient specialist clinics for timely reviews Focus on education of the PWP and the carer regarding selfmanagement strategies including integration of physical exercise on a regular basis as part of lifestyle Provision of specialist review service at the Australian Neurological Research Institute (ANRI) for selected elderly patients with PD in the north and south metropolitan regions who have difficulty with travelling New service New service 22

23 - advance trainee at ANRI at assessment clinic on rotational 6 monthly basis from north and south PD clinics Neurologist input at specialist clinics at OPH, FH Moss Street Psychiatric input at specialist clinics at OPH, FH Moss Street - additional FTE input on consultation/liaison basis required Mobile service for Peel Campus (serviced by FH Moss Street) - additional FTE required - additional allied health resources, administrative resources Mobile service for Bentley Health service - additional FTE required - additional allied health resources, administrative resources Psycho-geriatrician input at specialist clinics at OPH, FH Moss Street, Bentley - additional FTE input on consultation/liaison basis required OPH and FH Moss Street to conduct reviews through Tele-health for WACHS health service referrals Mobile outreach team linked to Specialist Clinics to provide PD consultation services for PWP in WACH s regional areas Training on PD care and management also to occur through mobile outreach teams New service New service New service New service New service New service D. SUB-ACUTE SECTOR PWP at AGED CARE REHABILITATION UNIT for review Outreach training service provided by OPH, FH Moss Street for consultation services Sustainable training strategies to be developed Bentley/ Swan Hospitals overlay with specialties of stroke, neurological rehabilitation of the elderly to provide upskilling across workforce Focus on education of the PWP and the carer regarding selfmanagement strategies including integration of physical exercise on a regular basis as part of lifestyle New Service 23

24 3. REGULAR ACCESS TO SPECIALIST NURSING CARE Regular access to the following: - clinical monitoring and advice - a continuing point of contact for support, including home visits, when appropriate - a reliable source of information about clinical and social matters of concern to people with PD and their carers which may be provided by a Parkinson s Disease specialist A. PRIMARY CARE SECTOR Existing WA Health funded PAWA Parkinson s Disease nurses (2 PD nurses) to provide holistic case management in the community to PWP north and south of the Swan River GP and neurologist specialists to refer PWP to PD nurses for holistic case management in the community PAWA PD nurses to be aligned with FH Moss Street and OPH clinics to provide fully integrated outreach mobile service PAWA PD nurses to provide information and support to residential care facilities PAWA PD nurses to provide information and support to the PWP, carer and family regarding residential care options and the ACAT assessment process Focus on education of the PWP and the carer regarding selfmanagement strategies including integration of physical exercise on a regular basis as part of lifestyle Referral pathways and linkages to non-hospital/specialist clinic community based therapy services that provide specialist therapy for PWP in the early and middle stages of the disease Continuation through increase in awareness Realignment Continuation Continuation B. ACUTE CARE SECTOR Nurses and enrolled nurses on general medical wards to be aware of the critical importance of correct drug management for PWP while in hospital. Support material and medication brochure to be provided in hospital Nurses Manual. Training for nursing staff on PWP management to promote quality of care with supporting guidelines for the care of PWP in the acute sector through training on PD Patient Medical Record to include PD management chart supported New service 24

25 by electronic medical record. A medication brochure to support the management chart. C. SUB-ACUTE CARE SECTOR Specialist Clinics at FH Moss Street and OPH Frequent training for nursing staff on PWP management to combat quality of care issues due to turnover of nursing staff Linking of PWP in attendance at specialist clinics with PAWA PD nurse in respective geographic region Outreach training service provided by FH Moss Street and OPH on nursing care for PWP at ACRU s 24 Hour PWP Helpline with Link nurse to provide support and information and assist in avoiding emergency hospital admissions Focus on education of the PWP and the carer regarding selfmanagement strategies including integration of physical exercise on a regular basis as part of lifestyle Referral pathways and linkages to non-hospital/specialist clinic community based therapy services that provide specialist therapy for PWP in the early and middle stages of the disease Continue New training service initiative New service initiative 25

26 4. ACCESS TO ALLIED HEALTH SERVICES - WA context - Physiotherapy - Occupational Therapy - Speech and Language Therapy - inclusion of Social Worker, Dietician, Psychologist A. SUB-ACUTE SECTOR PWP at DAY THERAPY CENTRES (Day Hospitals) Additional allied health services at Outpatient Day Therapy Centres (Day Hospitals) Additional FTE in allied health Additional FTE in social work Additional administrative support Sustainable data collection system Expansion of community based ambulatory care services Additional service support in allied health, particularly physiotherapy in order for PD specific therapy to be provided Additional infrastructure support (vehicles, remote communication technology, range of equipment Provision of early post acute discharge services if required, including community nursing. Focus on education of the PWP and the carer regarding selfmanagement strategies including integration of physical exercise on a regular basis as part of lifestyle. Social work services to support this integration. Outreach training service provided by FH Moss Street and OPH on allied health therapy services for PWP to WACHS Regional Resource Hospitals and supported by Tele-health services Sustainable framework Focus on management and care on wards and ACAT teams Provision of infrastructure for expansion of Day Therapy Centres (Day Hospital Clinics at FH Moss Street and OPH) Gait laboratory Training facilities for correct PD rehabilitation therapy Increased therapy areas with appropriate range of equipment Referral to Liaison Officer at Day Therapy Centre for review and management New service initiatives Service Expansion New initiatives and expend New service initiative Infrastructure expansion 26

27 B. SUB-ACUTE SECTOR PWP at AGED CARE REHABILITATION UNIT Sufficiently skilled allied health therapists who have specific knowledge of movement rehabilitation therapies for PWP Training and update of therapists on regular basis provided by specialist clinics Referral of PWP to specialist clinics at FH Moss Street and OPH for movement rehabilitation therapy New training initiatives 5. PALLIATIVE CARE Appropriate palliative care options to be provided in the home, hospital and residential aged care setting Training of health service providers on palliative care issues for PWP consultation services provided by PAWA PD nurse Additional to NICE Guidelines identified by PD Aged Care Network sub-group 6. COMMUNITY CARE Support for carers in the informal care setting Maintain growth in support programs for carers including services provided by the Home and Community Care Program Improve access to respite and range of respite options Improve access to transport options to Day Therapy Centres Referral pathways and linkages to non-hospital/specialist clinic community based therapy services that provide specialist therapy for PWP in the early and middle stages of the disease RESIDENTIAL CARE SERVICES Adequate access to low and high care residential aged care options Equity of access to low and high care residential aged care options Training on the specific care and management of PWP Training on the need for appropriate management of medication needs for PWP Adequate clinical support coverage for PWP in the high care setting Linkage service between the PWP, the PAWA PD nurse specialist services and the GP and /or specialist Training on PD for the Residential Care Line service Development of a network of residential aged care facilities that are specialists in the care of PWP New initiative New initiative 27

28 5. CONFIGURATION: SERVICE DELIVERY MODEL OF CARE FOR PWP The configuration of the model is outlined in Figure One following. Appendix Eight provides suggested timelines for implementation. In respect to the impact on services provided by WA Health, the model is a combination of the following features: Established specialist centres The model is characterised by two Specialist Centres located as part of the Aged Care Rehabilitation Units at Fremantle Hospital and Osborne Park Hospital to service the needs of People with Parkinson s Disease (PWP) north and south of the Swan River. Assessment and clinical management protocols have been strengthened in the acute setting for PWP and there is a shift to expanded ambulatory care services that provide rehabilitation therapy services. The Specialist Centres will also provide an outreach clinical role as well as a training and education role for WACHS health service providers, particularly at the Regional Resource Hospital level. This is in recognition of the fact that many PWP face difficulties in gaining an accurate diagnosis without specialist intervention. Mobile team This model is augmented by an established mobile outreach team that will provide a multi-disciplinary service to the Bentley Hospital Aged Care Rehabilitation Unit and the Peel Health Campus in recognition of the growing demand for services in the Perth eastern metropolitan region and the Mandurah region. Outpatient Day Therapy Clinics that provide Ambulatory Care Services The Day Therapy Clinics will provide a full range of multi-disciplinary care services that focus on regular review and maintenance of the management and care needs of the PWP. This will be supported by regular allied health therapy interventions with an increased emphasis on RITH therapy options. This is in recognition of the ability to effectively manage PWP while living independently in the community, provided regular review and maintenance occurs. PAWA PD Specialist Nurses (including the generic Neurological Nurses in the South West) The specialist nurses play an integral role for PWP in terms of advocacy, support, advice on medical matters and living with PD and play an important role in promoting the linkages between specialists, general practitioners, Aged Care Assessment teams, residential aged care providers. These specialist nurses play a valuable role in provision and co-ordination of counselling and support services for patients and their families and carers. They also facilitate appropriate access to others in the multidisciplinary team. 28