parkinson’s disease services model of care - wa · pdf fileparkinson’s disease...
TRANSCRIPT
1
Aged Care Network
Parkinson’s Disease Services Model of Care
For the Older Person in WA
27 May 2008
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 non-commercial 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; 2008.
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.
3
Table of Contents
EXECUTIVE SUMMARY...................................................................................4
ACKNOWLEDGEMENTS ..................................................................................6
RECOMMENDATIONS.....................................................................................7
1. DRIVERS FOR CHANGE.......................................................................... 10
1.1 Increasing Prevalence of Parkinson’s Disease.................................... 10 1.2 World Health Organisation (WHO) World Charter .............................. 11 1.3 Previous WA Health Reports ......................................................... 11 1.4 Specific Management Issues Relating to Parkinson’s Disease................. 11 1.5 Qualitative and Quantitative Evidence Pointing to Gaps in the Current
Service Delivery Framework ......................................................... 12 1.5.1 Increase in demand for services................................................ 13 1.5.2 Need for interdisciplinary care................................................. 14 1.5.3 Lack of access to appropriate services outside the acute sector .......... 15 1.5.4 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 ................................. 15
1.5.5 Emphasis on outpatient and ambulatory care initiatives ................... 16 1.5.6 Workforce constraints ........................................................... 16
2. OBJECTIVES OF THE SERVICE DELIVERY MODEL OF CARE.............................. 18
3. FUTURE SERVICE DELIVERY MODEL OF CARE FOR PEOPLE WITH PARKINSON’S DISEASE IN WA ................................................................................... 19
4. CONTINUUM OF CARE APPROACH............................................................ 20
5. CONFIGURATION: SERVICE DELIVERY MODEL OF CARE FOR PWP..................... 28
5.1 Support Requirements................................................................. 30
6. OLDER PERSON WITH PD PATIENT JOURNEY.............................................. 32
GLOSSARY ............................................................................................... 34
APPENDICES............................................................................................. 35
Appendix 1: Literature Review.............................................................. 35 Appendix 2: Statistical Data Relating to Age and Gender for People with
Parkinson’s Disease............................................................ 38 Appendix 3: Key Issues Relating to the Care And Management of People with
Parkinson’s Disease............................................................ 40 Appendix 4: Service Delivery In Western Australia ..................................... 44 Appendix 5: Statistical Data Relating to Current Service Delivery in WA for
Parkinson’s Disease............................................................ 47 Appendix 6: Emergency Assessment of Patients with Parkinson’s Disease........ 58 Appendix 7: Best Practice Frameworks for the Management of People with
Parkinson’s Disease............................................................ 60 Appendix 8: Service Figuration – Suggested timelines for implementation ....... 63
REFERENCES ............................................................................................ 65
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.
Strengthening 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.
Strengthening 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.
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
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, 2008.
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
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.
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. Strengthening 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. Strengthening 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. Strengthening 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.
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.
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 Economics1 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. 2007. 2 Parkinson’s Association of WA www.parkinsonswa.org.au/. – 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. 2007. 4 page 104, Access Economics, Pty Limited. Living with Parkinson’s Disease – Challenges and Positive Steps for the Future. June 2007. 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.
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 2005 – 2006 there were 1231 separations, while in 2006-2007 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.9 10 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. 2007. 8 European Parkinson’s Disease Association website www.epda.eu.com/globalDeclaration/ accessed 18 October 2007 9Dr P Goldswain, C Rehberger, Sue Kent, Garry Wallace. Proposal for the development of a specialised unit for Parkinson’s Disease. Metropolitan Health Service. 2002. 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 1999.
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:
13
1.5.1 Increase in demand for services
The statistical data indicates increases between 2000/01 – 2005/06 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 18.45 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 3.1 – 3.4, 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 4.1 – 4.7; 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
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 2006.
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.
1.5.2 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. Non-motor 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”.13 14
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 2007. 12 Summary, Submission –“The Expansion of the Parkinson’s Nurse Specialist Service”. Parkinson’s Western Australia Inc. March 2007. 13 K Ahlskog J E. Beating a dead horse: Dopamine and Parkinson Disease. Neurology 2007; 69, 1701 - 1711 14 Shannon K M. Dopamine: So “last century”. Neurology 2007; 69. 329-330
15
2005/06
3. Paranoid schizophrenia 62 days
1.5.3 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 PWP15
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.
2000/01
48 episodes Average of 10 days/episode
2005/06
31 episodes Average of 7.8 days/episode
1.5.4 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 2007. Metropolitan public hospitals, all private hospitals.
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.
1.5.5 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 3.1 - 3.5 and 4.1 – 4.7, 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.
1.5.6 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.”
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 3.1 – 3.4 and 4.1 – 4.7). 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, 3.5.
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 are17:
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. 2002. Department of Health.
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) Guidelines18 relating to Parkinson’s Disease management. They were released in June 2006.
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 2006. Parkinson’s disease. NICE clinical guideline no. 35. www.nice.org.uk
20
4. CONTINUUM OF CARE APPROACH
A continuum of care approach has been adopted in the outline of the model on pages
16 - 22. 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 2006
1. 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 Strengthen
GP referral to specialist geriatric medicine clinic at OPH or FH Moss Street
Strengthen
GP referral to specialist mobile service at Bentley, Peel Campus New services
Specialist neurologist referral to OPH, FH Moss Street, Bentley, Peel Campus
Strengthen/new service
GP referral to PAWA PD specialist nurse Strengthen
Specialist neurologist referral to PAWA PD specialist nurse Strengthen
PAWA PD specialist nurse referral to neurologist and/or specialist clinics
Continue
GP referral to Liaison Officer at Day Therapy Centre for review and management
Strengthen
Referral of the PWP and the carer (by GP and PAWA nurse) to exercised based programs in the community
Strengthen
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)
New process
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)
New process
Recommended referral to geriatrician for review New in some areas – strengthen in other areas
Recommended referral to specialist clinic at OPH, FH Moss Street, Bentley for review
Strengthen
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 Continuation
Specialist neurologist or physician/geriatrician to conduct review Strengthen
GP referral to specialist geriatric medicine clinic at OPH or FH Moss Street for review
Strengthen
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.
New initiative – training required and protocols
Geriatrician consultation services provided for possible diagnosis and review
Strengthen
Psycho-geriatrician consultation services provided for review
- additional FTE input on consultation/liaison basis required
New service
Acute ward referral to specialist clinic at OPH, Bentley FH Moss Street
Strengthen
PAWA PDN to supports the need for medical review in acute system if atypical clinical features develop
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
New service
Focus on education of the PWP and the carer regarding self-management strategies including integration of physical exercise on a regular basis as part of lifestyle
Strengthen
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
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
New service
Mobile service for Peel Campus (serviced by FH – Moss Street)
- additional FTE required
- additional allied health resources, administrative resources
New service
Mobile service for Bentley Health service
- additional FTE required
- additional allied health resources, administrative resources
New service
Psycho-geriatrician input at specialist clinics at OPH, FH Moss Street, Bentley
- additional FTE input on consultation/liaison basis required
New service
OPH and FH Moss Street to conduct reviews through Tele-health for WACHS health service referrals
New service
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
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 “up-skilling” across workforce
New Service
Focus on education of the PWP and the carer regarding self-management strategies including integration of physical exercise on a regular basis as part of lifestyle
Strengthen
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
Continuation
GP and neurologist specialists to refer PWP to PD nurses for holistic case management in the community
Strengthen through increase in awareness
PAWA PD nurses to be aligned with FH Moss Street and OPH clinics to provide fully integrated outreach mobile service
Realignment
PAWA PD nurses to provide information and support to residential care facilities
Continuation
PAWA PD nurses to provide information and support to the PWP, carer and family regarding residential care options and the ACAT assessment process
Continuation
Focus on education of the PWP and the carer regarding self-management strategies including integration of physical exercise on a regular basis as part of lifestyle
Strengthen
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
Strengthen
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.
Strengthen through training on PD
Training for nursing staff on PWP management to promote quality of care with supporting guidelines for the care of PWP in the acute sector
Strengthen
Patient Medical Record to include PD management chart supported New service
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
Strengthen
Linking of PWP in attendance at specialist clinics with PAWA PD nurse in respective geographic region
Continue
Outreach training service provided by FH Moss Street and OPH on nursing care for PWP at ACRU’s
New training service initiative
24 Hour PWP Helpline with Link nurse to provide support and information and assist in avoiding emergency hospital admissions
New service initiative
Focus on education of the PWP and the carer regarding self-management strategies including integration of physical exercise on a regular basis as part of lifestyle
Strengthen
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
Strengthen
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
New service initiatives
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.
Service Expansion
New initiatives
Focus on education of the PWP and the carer regarding self-management strategies including integration of physical exercise on a regular basis as part of lifestyle. Social work services to support this integration.
Strengthen and expend
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
New service initiative
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
Infrastructure expansion
Referral to Liaison Officer at Day Therapy Centre for review and management
Strengthen
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
Strengthen
Strengthen
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
Strengthen
Strengthen
Strengthen
Strengthen
Strengthen
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
Strengthen
Strengthen
Strengthen
Strengthen
Strengthen
Strengthen
New initiative
New initiative
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.
29
� Strong referral networks and clinical pathway linkages for neurologists and GPs to specialist centres
The referral linkages and pathways between GP’s, neurological specialists and the Specialist Clinics need to be strengthened. This is in recognition of the importance of early identification, accurate diagnosis, appropriate medical management and the importance of allied health interventions.
The linkage to a Liaison Officer19 at the Day Therapy Centre will act as a referral point between the primary care sector and the Clinics (similar to the model adopted by the RAILS at OPH.
In addition, it may be beneficial to encourage the placement of a GP in the PD specialist Clinics to familiarise them with the functions of the clinic.
� 24 hour helpline
A helpline has been advocated as a means to prevent inappropriate admissions to the emergency department, particularly for carers who perceive matters to be urgent, when in fact the situation can be rectified with informed advice.
This is in recognition of the depressive and psychotic episodes that often accompany PD, and other physical manifestations that can be managed by the Specialist Clinics, wards or Day Therapy Centres during working hours.
� Virtual networks with regional areas
The specialist centres will also support the regional resource hospitals through a referral and management service. Linkages with non-government funded neurological support agencies, general practitioners and specialists in rural areas with the specialist centres are managed through communication systems.
Tele-health services support education, advice and referral services to regional centres and practitioners in the primary care sector as well as medical, nursing and allied health staff to increase the awareness of treatment and management protocols for PWP.
� Community based therapy services not attached to outpatient based specialist clinics
PWP are able to supported with therapy services that target PWP who live independently in the community by Community Physiotherapy Services. Specific classes designed to target PWP in the early and mid stages of the disease are aimed at maximising functional mobility. Awareness of such services throughout the metropolitan area and referral linkages to these services should be promoted. The development of such services in rural areas will be dependent on workforce constraints.
� Community Care support services
Community care support services are an integral part of supporting the carer and the PWP to live independently in the community with maximum functional mobility. It has been demonstrated that the management of PD is effectively
19 See Rehabilitation and Restorative Care Services for the Older Person in WA Model of Care. Aged Care Network. Department of Health. June 2008.
30
managed in the community, particularly in the first and second stages as the disease progresses. The challenge of effective PD management is avoidance of the acute care sector and maximum care in the community. Services such as transport for attendance at outpatient clinics, carer respite and carer education will help to achieve this goal.
� Assessment services and downstream options for residential care services
In the final stages of the disease, PWP are often faced with the severe neurological deterioration where permanent care is often the only option, particularly if the carer is no longer able to cope with all the patient’s care needs.
Assessment for residential care through the ACAT is important in this regard. ACATs also play and important role in recommending community care services for PWP to live independently in the community.
5.1 Support Requirements
Implementation of the model of care for services for PWP is heavily dependent on:
1. Training and Education
Systematic and targetted education strategies that focus on up-skilling and education on PD across the WA Health system for all disciplines, including medical officers, nursing staff and allied health staff. This is in recognition of rotation of staff through wards and outpatient facilities, the need for early identification and assessment of PWPs, and the particular management and care needs of a person with PWP at each stages as the condition progresses.
The formation of a specialist group to support this initiative should occur.
2. Infrastructure Support
Strengthened and additional infrastructure support will be required in the following areas:
� Physical therapy and treatment areas at the Specialist Clinics
� RITH infrastructure support at the Specialist Clinics and ACRU’s
� Community based physiotherapy services
� Tele-health services
� Additional FTE requirements in the areas of allied health, consultant psycho-geriatrician and neurological services
� Training and education infrastructure including additional FTE support
31
Home
PAWA Nurse specialist
General Practitioner
Neurologist
Day Therapy Centres
Acute Hospital System
Specialist Centres
WACHS Health Services
Figure 1. Care Pathways for the Management of Parkinson’s Disease in WA
Residential Care permanent care options
Private Inpatient
referrals
Neurological Institute
(ANRI)
Community based therapy services
32
6. OLDER PERSON WITH PD PATIENT JOURNEY
A 73 year old lady lives at home with her husband. She notices a tremor in the right hand and the size of her writing has decreased.
The lady attends her GP who accesses patient electronic record with information about her health care.
The GP uses standardised documentation to refer to PD Specialist Clinic for assessment and management.
The PD Clinic medical staff attends to lady and refers to an occupational therapist (OT) for hand writing and tremor management.
The OT does a standardised assessment, outcome measure and provides strategies for above. The lady reports to the OT that she has difficulties rolling in bed. The OT notices she walks with a flat foot gait and cross refers to physiotherapy (PT).
The PT does standardised assessment, outcome measure and teaches strategies for walking and bed mobility. Falls prevention is discussed. The lady is referred to the gym for maintenance.
The PT and OT do an annual review by phone, with no problems occurring the lady continues with gym. Gym instructors reinforce ‘long steps’.
Six years later, patient notices having more difficulty with walking, cooking, and her speech is softer. She contacts the PD Clinic before her scheduled review to report the above. She is referred to speech, OT and PT for therapy.
Speech Pathology (SP) provides intensive input for voice production, enhanced communication programmes and communication breakdown repair strategies. SP undertakes routine swallow assessment and provides management as required.
It is decided that the lady would benefit from a holistic group aimed at maximising functional ability in the community (time limited) and is referred back to gym. Reviews by different disciplines and booster therapy from Speech, OT and PT are undertaken as needed.
Two years later at review in the clinic, the lady has more physical difficulties, and is not managing gym. She is referred to Community Physiotherapy Service PT Group. Holistic screening tool is used to get a baseline and therapy is exercise based but also assists with reinforcement in the use of strategies with making morning tea and talking.
The lady is reassessed by SP because swallowing increasingly becomes impaired and she is starting to avoid some foods and increase time to eat meals.
Six months later the PT notices on the screening tool that the patient is having more difficulty with writing and dressing and is referred to the PD Clinic OT for review.
One year later the lady has increasing difficulty in all areas of functional ability. She is referred to the PD Clinic for review.. The lady is also noted to be low in mood and socially isolating herself and referred to psycho-geriatrician for review.
The husband and patient attend a time limited holistic group to maximise skills needed to stay at home. Therapy in the home also provided and a referral to the social worker is made to assess for additional support.
33
After some therapy in the home, the patient is referred to the Day Therapy for maintenance therapy. As the patient progresses further, maintenance work continues in the Day Therapy Centre. The couple decide to stay at home, and domiciliary therapy is commenced.
The staff at the PD Clinic support other service providers in maximising the ability of PWP and care giver to remain at home for as long as possible.
34
GLOSSARY
(in serial order)
NICE National Institute of Health and Clinical Excellence
ACAT Aged Care Assessment Team
PWP People with Parkinson’s
PD Parkinson’s Disease
WACHS WA Country Health Services
FTE Full time equivalent
COAG Council of Australian Government
HACC Home and Community Care
RITH Rehabilitation in the Home
FH Fremantle Hospital
OPH Osborne Park Hospital
PAWA Parkinson’s Association of WA
ANRI Australian Neurological Research Institute
JHC Joondalup Health Campus
PHC Peel Health Campus
WHO World Health Organisation
GP General Practitioner
PNS Parkinson’s Nurse Specialist
PDNS Parkinson’s Disease Nurse Specialist
35
APPENDICES
Appendix 1: Literature Review
What is Parkinson’s Disease
Parkinson’s disease (PD) is a progressive neurodegenerative condition affecting the control of body movements resulting from the death of the dopamine-containing cells of the substantia nigra.
The symptoms of Parkinson’s disease appear when about 70% of dopamine producing cells cease to function normally with symptoms developing slowly, gradually progressing over years. 20 21
Currently there is no consistently reliable test that can distinguish PD from other conditions that have similar clinical presentations. The diagnosis is usually made based on a history and examination.22
Signs and symptoms shown in people with PD include hypokinesia (ie poverty of movement), bradykinesia (ie. slowness of movement), rigidity and rest tremor.23
The disease usually affects people over 50 years, however people in their 30’s and 40’s are also diagnosed.24
Although PD is chiefly a movement disorder there is a high incidence of depression and anxiety in people with Parkinson’s Disease, with up to 50% of cases. This in turn places significant stress on carers and families and increases the need for input from consultant psychiatrists and clinical psychologists. 25
Other symptoms can include sleep disruptions, difficulty with chewing and swallowing and urinary and constipation problems.26
Prevalence, Cost and Burden of Disease
PD has an estimated prevalence of 31 to 328 per 100,000 people worldwide. It is estimated that more than 1 percent of the population over age 65 are afflicted with PD and that incidence and prevalence increase with age.27
20 Parkinson’s Australia www.parkinsons.org.au/. Accessed 24/09/07 21 National Health Service. National Institute for Health and Clinical Excellence. June 2006. Parkinson’s disease. NICE clinical guideline no. 35. www.nice.org.uk 22 page 4 National Health Service. National Institute for Health and Clinical Excellence. June 2006. Parkinson’s disease. NICE clinical guideline no. 35. www.nice.org.uk 23 Page 4 National Health Service. National Institute for Health and Clinical Excellence. June 2006. Parkinson’s disease. NICE clinical guideline no. 35. www.nice.org.uk 24 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 25 Goldswain P, Reberger C, Kent S, Wallace G. Proposal for the development of a specialised unit for Parkinson’s disease. Perth: Rehabilitation and Aged Care. Department of Health, Western Australia, ?2002. 26 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 27 Levine CB, Fahrbach KR, Siderowf AD, et al. Diagnosis and treatment of Parkinson’s disease: a systematic review of the literature. Evidence Report/Technology Assessment Number 57. (Prepared by Metaworks, Inc., under Contract No. 290-97-0016.) AHRQ Publication No. 03-E040. Rockville, MD: Agency for Healthcare Research and Quality. June 2003.
36
Access Economics has provided a conservative estimate of the number of people with PD in Australia.
In 2005 more than 54,700 Australians had PD, of which 28,100 were male and 26,600 were female.
Prevalence increases substantially 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. Further to this, 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. 28
It is estimated that there are approximately 7,000 people in Western Australia living with PD.29
PD has a higher prevalence than a number of diseases and injuries considered National Health Priority Areas (NHPAs) in Australia including some cancers. 30
The total financial cost of PD per annum in Australia was around $527.8 million in 2005 of which the main cost components were health system costs ($343.9 million), followed by deadweight losses ($82.8 million), productivity and carer costs ($60.6 million) and other financial costs ($40.5 million) such as aids and modification to maintain independence, childcare and housekeeping costs and transport, amongst other things.31
Some other relevant points from their report include:
� The total health system costs of PD for 2005 are estimated at $343.9 million with the average total health system cost per person with PD at $6,300 per annum.
� The largest cost component for PD was high care residential accommodation or ‘aged are’ at $170.0 million (49.4%) with hospital costs (in and outpatient) the second largest cost component at $74.4 million (21.6%).
Health system costs are borne by:
� Federal Government – 45%
� State/Territory Government – 22%
� Individuals – 20%
� Other (private health insurance, charities) – 13%
28 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 29 Parkinson’s WA. www.parkinsonswa.org.au/. Accessed 9/11/07. 30 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 31 As above
37
Financial costs are incurrent over many years. The median years living with PD is 12.2 years but many live with the condition for over 20 years.
� The lifetime financial cost of a PWP living with PD for 12 years (around $100,000) is on par with the average lifetime financial cost of cancer ($114,500).
The financial cost of PD is incurred by:
� Federal Government (40.5%)
� Society and other parties (such as private health insurance and charities) (23.8%)
� The household (between 20.0%)
� State Governments (14.1%)
� Employers (between 1.6%)
Burden of disease
� is estimated to cost an additional 39,100 DALYs (years of healthy life lost), with 76% due to disability and the remaining 23% due to premature death.
� PWP experience more DALYs per person over their lifetime compared to many other disease and injuries, especially since:
� PWP live with the disease for a relatively long time, compared to diseases such as cancer
� PWP are generally younger than people with dementia
The total economic cost of PD was $6.8 billion in 2005 (net value of the burden of disease plus the financial cost of PD).
In Western Australia it has been estimated that the cost for the care of PWP ranges from $32 million to $52 million per annum.32
32 Prognosis Consulting. Centre for Excellence for Parkinson’s Disease: A Business Case for the Establishment of a Centre for Excellence for Parkinson’s Disease in Western Australia. Perth: Prognosis Consulting, 1999.
38
Appendix 2: Statistical Data Relating to Age and Gender for People with Parkinson’s Disease
1. Principle diagnosis of Parkinson’s Disease – age and gender
Admitted Inpatient - all metropolitan and private hospitals
Table 1.1
Fin.Year 2000-2001
Sum of count Gender
Age Male Female Grand Total
00-49 5 3 8
50-64 16 12 28
65-69 16 22 38
70-74 32 22 54
75-79 39 24 63
80-84 22 25 47
85+ 21 21 42
Grand Total 151 129 280
Table 1.2
Fin.Year 2005 -2006
Sum of count Gender
Age Male Female Grand Total
00-49 6 5 11
50-64 31 19 50
65-69 17 7 24
70-74 39 12 51
75-79 42 19 61
80-84 26 38 64
85+ 24 19 43
Grand Total 185 119 304
2005-2006
Gender Breakdown
60% with Parkinson’s disease in 05/06 were male. In the 80-84 age group, there are more females than males for 05/06.
Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November 2007
39
Figure Two 2005/2006 - Age Breakdown
00-494%
50-64
16%
65-698%
70-74
17%
75-79
20%
80-8421%
85+
14%
00-49
50-64
65-69
70-74
75-79
80-84
85+
Table 1.3. Counts of WA public metro hospital separations (including public
patients at JHC & PHC) where a diagnosis of Parkinson's disease was recorded
Hospital Attended 2005/06 2006/07
Armadale/Kelmscott District Memorial Hospital 119 74
Bentley Hospital 91 87
Fremantle Hospital 188 188
Graylands Hospital 4 3
Joondalup Health Campus (public patients only) 59 47
Kalamunda District Community Hospital 8 10
King Edward Memorial Hospital For Women 1 4
Murray District Hospital [Pinjarra] 5 14
Osborne Park Hospital 151 174
Peel Health Campus (public patients only) 17 20
Rockingham - Kwinana District Hospital 27 23
Royal Perth Hospital 245 264
Royal Perth Hospital Shenton Park Campus 19 15
Selby Authorised Lodge (Mhs) 2 8
Sir Charles Gairdner Hospital 260 286
Swan District Hospital 35 39
Total 1231 1256
Source: Information Collection and Management Branch, (ICAM) WA Health. November 2007
40
Appendix 3: Key Issues Relating to the Care And Management of People with Parkinson’s Disease
1. Difficulty in Medical Diagnosis of Parkinson’s Disease
There is no definitive test for Parkinson’s disease and therefore it can be difficult to diagnose. Diagnosis is usually made based on medical history and presentation of signs and symptoms.
Anti-PD drugs may be given to see if the patient responds and sometimes tests are performed such as MRI and CAT scans to differentiate between disorders that have similar signs and symptoms.
Diagnosis may be difficult in some cases due to referral methods and lack of access to medical services in regional areas. Other conditions and general ageing may obscure PD symptoms and therefore hinder diagnosis.33
There is often potential for misdiagnosis because of the complexity of presenting symptoms. The time delay between presentation of symptoms and correct diagnosis can cause considerable anxiety for the patient.34
2. Care needs change based on distinctive stages of Parkinson’s disease progression
The progression of PD can be characterised by a progression through a number of different stages. The stages of PD were classified by Hoehn and Yahr in 1967.35
Stage Characteristics
I Unilateral involvement only, usually minimal or no functional impairment. Symptoms include tremor or one limb, changes in posture, locomotion and facial expression
II Bi-lateral or midline involvement with impairment or balance. Posture and gait affected.
III First signs of postural instability, significant slowing of body movements, individual has some restriction of activities but is capable of leading an independent life, disability is mild to moderate
IV Severe symptoms: walking limited, rigidity and bradykinisea. Severely disabling disease; individual is markedly incapacitated and is unable to live alone
V Cathectic stage. Individual is restricted to bed or a wheelchair unless unaided
PWP do not necessarily progress from one stage to another, but can drop down a stage during treatment or experience accelerated progression.
33 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 34 Stewart, DA. NICE guideline for Parkinson’s disease. Age and Ageing. 2007; 36: 240-242 35 Page 5-6, Access Economics Pty Limited. Living with Parkinson’s Disease – Challenges and Positive Steps for the Future. June 2007.
41
Based on these stages, approaches need to differ at the varying stages.
For Stages 1-3, care can managed while the person is living independently in the community through regular monitoring, allied health therapy intervention and appropriate medication management.
Stages 4-5 require a more intensive approach to service delivery, and functional mobility and the ability to live in the community is often determined by the presence of a carer.
PAWA36 has outlined four stages of PD, and points out some shortcomings in managment:
� Diagnosis
Early diagnosis is preferable with GP referral to a specialist neurologist.
Early non-motor symptoms such as anxiety and depression need to be addressed.
Specialist intervention at public hospital clinics addresses the range of motor and non-motor symptoms
� Transitional/Maintenance
Ongoing monitoring is required (6/12 – 12 monthly) to avoid a crisis and the need from prompt management when a crisis does occur, preferable away from the inpatient setting.
� Frail Aged/Complex
PWP are often sub optimally managed by neurologists and physicians due to lack of PD awareness. Neuro-psychiatric episodes are misdiagnosed and mismanaged due to the a shortfall in nursing and allied health support and the absence of PD funded and dedicated hospital beds.
� Frail Aged/Palliative
PWP are usually in a nursing home and no longer seen by neurologist. A minority are seen and monitored by PNS with reporting mechanisms back to specialists. The majority managed by GPs. Medication regimes are often an issue with staffing levels in nursing homes. Lack of personal interaction are an emerging issue as patient moves into institutional care. Hospice care is infrequently used in the care of PWP.
3. Complex Treatment Issues
There is currently no cure for PD and no standard treatment regime. The main treatment options include drug therapy, surgery and allied health therapies including physiotherapy, occupational therapy and speech therapy. Drug treatment is complex and appropriate medication management is very important in reducing unnecessary disease burden. 37
36 Qualitative evidence provided by the Parkinson’s Disease Aged Care Network sub-group. 37 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007.
42
Treatment of PD is further complicated due to the progressive nature of the disease and the associated motor and non-motor features combined with early and late side-effects relating to therapeutic interventions.38
Levine at al. (2003) conducted a systematic review to assess the quantity and quality of published evidence regarding diagnosis and treatment of patients with PD. The key results are outlined below:
� The diagnosis of PD is challenging due to the lack of a reference standard test. A review of current pharmacological, surgical and ancillary treatments was conducted of meta-analyses of different pharmacological treatments.
� It was found that the only medication that consistently controlled PD symptoms better than L-dopa alone was the combination of L-dopa plus COMT inhibitors in patients with advanced PD. Meta-analyses suggest that pallidotomy and Deep Brain Stimulation (DBS) result in improvement of PD rating scores.
� With regard to the effect of ancillary treatments such as physical therapy, long-term data is lacking. It was found that in general, the published literature regarding PD suffers from a lack of reporting standardised outcomes.39
4. Role of Allied Health Therapies
Allied health therapies such as physiotherapy, speech therapy, occupational therapy and social work are commonly recommended as part of the multi-disciplinary approach to the treatment of PD.
However, there is a general lack of high levels of evidence to support the importance of one form of allied therapy over another such as physiotherapy, speech therapy and occupational therapy in the treatment of Parkinson’s disease.
The research evidence clearly demonstrates the ability to adequately and effectively care for the PWP in the community with adequate levels of allied health therapy in the areas of movement, swallowing, cognition.
5. Role Parkinson’s Disease Nurse Specialists (PDNS)
The main role of the PDNS is to:
� coordinate care for the PWP
� conduct holistic assessments
� monitor wellbeing and response to treatment
� make referrals to other health and social care professionals
� provide education to other health and social care professionals
38 Rascol O., et al. Treatment interventions for Parkinson’s disease: an evidence based assessment. The Lancet. 2002; 359: 1589-98. 39 Levine CB, Fahrbach KR, Siderowf AD, et al. Diagnosis and treatment of Parkinson’s disease: a systematic review of the literature. Evidence Report/Technology Assessment Number 57. (Prepared by Metaworks, Inc., under Contract No. 290-97-0016.) AHRQ Publication No. 03-E040. Rockville, MD: Agency for Healthcare Research and Quality. June 2003.
43
� provide education and counselling to PWP and their carers40
Studies have shown the benefit of PDNS:
A two year randomised controlled trial to determine the effects of community-based nurses specialising in Parkinson’s disease on health outcomes and healthcare costs was conducted by Jarman et al.41
It found no significant effect on the clinical condition of patients. However, there was significant improvement in subjective wellbeing of patients cared for by a nurse and this improvement was achieved without an increase in healthcare costs.
Hobson et al conducted an analysis to determine the economic utility of introducing a Parkinson’s disease nurse specialist service.42
They found an estimated costing saving of £54,992 by employing a PDNS. In addition, community visits by the PDNS potentially saved £8,296 and inpatient visits saved £1203.
40 Access Economics Report, Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: Access Economics, 2007. 41 Jarman B, Hurwitz B, Cook A. Effects of community based nurses specialising in Parkinson’s disease on health outcome and costs: randomised controlled trial. British Medical Journal. 2002; 324(7345):1072–1075. 42 Hobson, P, Roberts, S Mearar, J. What is the economic utility of introducing a Parkinson’s Disease nurse specialist service? The Cliniciain. Vol 3 ppii-iii. 2003.
44
Appendix 4: Service Delivery In Western Australia
Services for People with Parkinson’s Disease – Current Service Delivery Model
Services for people with Parkinson’s disease (PWP) are available through a range of providers including General Practitioners (GPs), Neurologists, Geriatricians and Consultant Physicians; Psychogeriatricians; hospital in-patient multi-disciplinary services; hospital based out-patient clinics and multi-disciplinary services; community based nurses, allied health and support services.
The person may present to their GP with signs and symptoms of Parkinson’s disease (PD) or they may present to the emergency department. From this point the person may or may not be referred to a specialist for definitive diagnosis and management.
Management of the disease can occur in a number of ways:
� Ongoing management by GPs without specialist confirmation of diagnosis and ongoing expert management
� Private neurologist management – with private allied health input (if the patient is privately covered)
� Referral to Parkinson’s Nurse Specialist (PNS) by specialist or self
� Referral to Parkinson’s specific clinic
Management in the acute sector usually consists of local geriatrician management with phone linkages to PD centres and PD nurses, or neurologists may manage patients.
Management in the subacute sector includes local Department of Rehabilitation and Aged Care or General Medicine or Neurology with phone linkages to PD centres and PD nurses.
Medical treatment mainly centres on drug therapy with a number of options available, which can be tailored to the needs of the individual. Careful management is required to ensure the correct dosage and awareness of interactions with other medications is important. Surgery or implanted stimulators are also options for patients.
Specialist Clinics
Currently two major facilities to provide services to people with Parkinson’s Disease - Osborne Park Hospital and Fremantle Hospital / Moss St. These clinics provide:
� Inpatient and outpatient services
� Diagnosis, assessment and intervention using a multi-disciplinary team approach
� Specialist inpatient rehabilitation
� Specialised therapy using a multidisciplinary team approach with linkages between inpatient and outpatient services
� Advice and support to other providers of care to people with Parkinson’s Disease
45
� Linkages to specialist nursing advice and support in the community through the Parkinson’s Nurse Specialists.
Patients are admitted to specialist inpatient units following referral and assessment for:
� Management of side effects, motor fluctuations, dyskinesia and commencement of Aphomorphine
� Rehabilitation and assessment of motor function, intensive physiotherapy and motor planning, and speech/swallowing/dietary advice
� Management of hallucinations, and nightmares
� Post-operative management and assessment following transfer from other hospitals
� Introduction of Liquid Sinemet
� Adjustment of medication and commencement of new medications
� Management of co-morbidities and prevention of deconditioning including late/end stage of severe cases.
At initial referral to the clinic, PWP are seen by multidisciplinary team (Dr, Nurse, PT, OT, SP, Dietician). Management and reviews are provided as required and monitored annually.
Parkinson’s Disease Nurse Specialists
Two Parkinson's Disease Nurse Specialists (PDNS) cover the metropolitan area, making home visits and assisting patients with management of the condition. The Department of Health WA funds this service, and is the first of its kind in Australia.
The role of the PDNS was developed using a holistic approach based on gerontology. The physical, psychosocial and environmental needs of the PWP are a priority. The PDNS provides education, support for newly diagnosed patients, individual management and support for patients in residential care and palliative care.
Services are provided to rural areas through telephone support to neurological nurses in Geraldton, Albany and Bunbury. Patient contact with PWP is maintained in areas of Harvey, Albany, Kununurra, Broome, Shark Bay, Geraldton and Northam region. Patients from these areas visit the Parkinson’s Nurse Specialist office while in the metropolitan area.
This ensures a focus on the patient, carer and the impact of the disease on daily life. The physical, psychosocial and environmental needs of the PWP is a priority.
The role differs from the model used in the United Kingdom in that the nurse is based at Parkinson’s Western Australia Inc (PWA).
This allows flexibility and patients are followed through regardless of any change in the specialist or general practitioner (GP).
46
The role also includes providing education, support for newly diagnosed patients, individual management, support for patients in residential care and palliative care. 43(Doherty J & Chadwick J, 2006)
Centre for Neuromuscular and Neurological Disorders - Australian Neuromuscular Research Institute (ANRI)
Conducts research relating to a number of neuromuscular and neurological disorders including Parkinson’s Disease. Younger patients with PD are usually referred to this Centre.
The Australian Neuromuscular Research Institute (ANRI) is located at Sir Charles Gairdner Hospital (SCGH). The Institute operates several clinics of which three are for people with Parkinson’s Disease and other forms of Parkinsonism and dystonia, conducted by two Neurologists. Referrals are received from General Practitioners and Consultants. The ANRI also makes an important contribution to research with its main focus on clinical trials.
Other services accessed by PWP
PWP also access community physiotherapy services such as the Abilities Group Programmes and PD specific groups (there are only 3 in Perth all with waiting lists), day therapy, day centres, and domiciliary services through Silver Chain. PWP are also referred to Kata, Senior Citizen’s Centres, gyms, Tai Chi, Yoga, Prime Movers and other exercise classes.
Sources
Consultation/Expert Group Members
Goldswain P, Reberger C, Kent S, Wallace G. Proposal for the development of a specialised unit for Parkinson’s disease. Perth: Rehabilitation and Aged Care. Department of Health, Western Australia, ?2002.
Rehabilitation Specialty Services Technical Bulletin – 76/0
43 Doherty J, Chadwick J. How the PDNS works in Western Australia. European Parkinson’s Nurses Network. 2006; Spring: 10-11
47
Appendix 5: Statistical Data Relating to Current Service Delivery in WA for Parkinson’s Disease
1. Admitted inpatient activity – Principle Diagnosis of Parkinson’s Disease and associated syndromes
Table 1
Principal Diagnosis Data 2000-2001 2005-2006
Malignant neuroleptic syndrome Sum of LOS 43 99
No of episodes 7 11
Other drug-induced secondary parkinsonism Sum of LOS 124 59
No of episodes 17 5
Other secondary parkinsonism Sum of LOS 8
1
Parkinson's disease Sum of LOS 5604 3330
No of episodes 256 287
Total Sum of LOS 5771 3496
Total no. of beds occupied per day 15.8 9.5
Total Count of no. of episodes 280 304
Average Length of stay 20.6 days 11.5 days
48
2. Co-morbidity of Parkinson’s Disease - Top 50 principle diagnoses with Parkinson’s disease
Table 2
2000-2001 2005-2006
No of episodes 968 1068
Total length of stay 17868 16023
Av. Length of stay 18.45 days 15 days
Equivalent no. beds/day
48 beds 44 beds
Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November 2007. Metropolitan public hospitals, all private hospitals.
3. Day Hospital Attendances for Physiotherapy for the PD Clinic – Osborne Park between 2001 - 2006
3.1 Increase in the number of new referrals or physiotherapy over the 5 years.
No. of referrals
2001 61
2002 147
2003 154
2004 163
2005 225
2006 224 plus 160 for time trials
3.2 Increase in the number of patients and occasions of service seen by the physiotherapist over the 5 years.
No. of patients Occasions of service
2001 61 546
2002 146 1478
2003 164 1837
2004 189 2047
2005 223 4073
2006 257 4666
49
3.3 Increase in the number of groups being run and the number of patients attending the group programme.
Number of groups increased from 2 in 2001 to 5 in 2004. Given the present staffing level, it is not possible to increase the number of groups any further.
No. of patients
2001 20
2002 38
2003 46
2004 51
2005 51
2006 47
3.4 Creation of a waitlist in 2005 and 2006
Prior to 2005, no waitlist existed for physiotherapy.
Waiting Time Statistics from January – June 2005.
No. of weeks <1 <2 <3 <4 <5 <6 <7
No. of patients
11 9 20 17 18 6 9
No. of weeks <8 <9 <10
<11
<12
<13
<14
No. of patients
4 4 1 0 2 0 1
Median waiting time is 3 – 5 weeks
Patients requiring a home visit about 9 – 10 weeks.
Patients prioritised according to importance of needs
The waiting time statistics for the last 3 months of 2006 (collated on the 24/1/07)
No. of weeks 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
No. of patients
3 1 7 3 3 3 5 1 2 2 3 1 1 1
50
In addition:
1. 10 patients were sent to other services, e.g. Day Hospital, ward, RAIL, other service providers, phone call.
2. An additional 7 new patients were offered appointments with the therapy assistant.
3. 10 people are on the waitlist, waiting times are more than:
No. of weeks 1-5 6 7 8 9 11 15
No. of patients
0 6 1 1 1 4 1
Patients prioritised according to importance of needs.
Source: Unpublished data. Osborne Park Hospital. November 2007.
3.5 Social Work Data – Osborne Park Parkinson’s Disease Social Work Service
The following data illustrates the caseload activity of the social work service.
Time period: 19 May 2007 - 01 April 2008
No of referrals: 148 individual referrals
Source: PWP who reside in the community Not inpatient referrals
Catchment area: Swan, Kalamunda, RPH, Joondalup and SCGH.
Referral sources: Doctors and allied health staff at the clinic, general practitioners, Parkinson’s Nurse specialist, family, carer, self-referral
Classification: 91 classified as urgent or semi-urgent
Required social work assessment and contact within 1-2 weeks
Coverage: .6 FTE.
Service provision: 40% of referrals required ongoing case management which can continue for up to 6 months
A case is closed when a PWP receives community support services required.
Activity Levels:
January 2008 – April 2008 - 44 PWP and/carer per month.
Contact is made with the clients. Waiting times for initial contact have now increased to up to 4 months.
An appointment is scheduled for in-depth assessment and intervention.
The waiting time for this is usually 4-6 weeks.
51
Referrals are managed according to urgency. Clients who are not classed as urgent but are struggling may have to wait up to 4 months for a social work visit.
Source: unpublished data. Osborne Park Hospital. April 2008.
Table 4. Fremantle Hospital - Moss Street Centre service for the PD Clinic between 2005 – 2007
4.1 Number of new referrals seen by Consultant Specialist
No. of referrals
2005 22
2006 32
2007 33
The consultant specialist also sees on average, 34 follow-up patients per month.
Average waitlist time for new patients – 7 weeks
4.2 Number of new referrals seen by the Registrar
No. of referrals
2005 11
2006 20
2007 29
Average waitlist time for new patients – 7 weeks
4.3 Number of new referrals seen by the Physiotherapist
No. of referrals
2005 32
2006 44
2007 59
4.4 Increase in the number of patients and occasions of service seen by the physiotherapist.
No. of follow up patients per month
Average occasions of service per month
2005 24 39
2006 24 40
2007 26 35
Average waitlist time for new patients – 3 weeks
52
4.5 Number of new referrals seen by the Occupational therapist
No. of referrals
2005 29
2006 38
2007 55
4.6 Increase in the number of patients and occasions of service seen by the occupational therapist.
No. of follow up patients per month
Average occasions of service per month
2005 17 22
2006 20 26
2007 24 26
Average waitlist time for new patients – 3 weeks
4.7 Number of new referrals seen by the Speech therapist
No. of referrals
2005 27
2006 30
2007 50
Average waitlist time for new patients – 3 weeks
Source: Unpublished data. Fremantle Hospital. November. 2007.
Table 5. Parkinson’s Nurse Specialist Service - WA
YEAR NUMBER OF NEW REFERALS
TOTAL NO OF CLIENTS (Approximate calculation)
NO OF NURSES
1998 62 62 1
1999 292 354 2
2000 266 620 2
2001 201 821 2
2002 204 1025 2
2003 200 1225 2
2004 194 1419 2
2005 209 1628 2
2006 191 1819 2
2007 -
53
Table 6 Parkinson's Nurse Specialist Activity
No. of referrals Direct care hours
Occasions of assistance
Hospital Visits
Home Visits
Residential Aged Care Facility Visits
Telephone Consulta-tions
Office Consultations
Education & Training Hours
Education & Training Attendees
Co-ordination & Planning Hours
246 1408 1418 23 312 100 966 17 78.25 761 295.75 Jan - June 06
Total 246 1408 1418 23 312 100 966 17 78.25 761 295.75
North 178 842.25 1013 11 318 101 573 10 92 759 205.25
South 113 647 678 9 124 42 499 4 47.25 372 354.75 July - Dec 06
Total 291 1489.25 1691 20 442 143 1072 14 139.25 1131 560
North 133 655.25 862 16 215 85 542 4 39.5 336 190.25
South 112 734.75 647 11 132 40 459 5 29.25 196 329 Jan - June 07
Total 245 1390 1509 27 347 125 1001 9 68.75 532 519.25
Source: Unpublished data. North Metropolitan Health Service. WA Health. November 2007.
54
Table 7. Number of episodes with Parkinson’s Disease “other episodes” in the Top 50 principle diagnoses
7.1 Top five “other” common principal diagnoses associated with a co-morbidity of PD. 2000-2001
2000-2001 Average LOS
1. Care involving use rehabilitation procedure 26 days
2. Person waiting admission to residential care
36 days
3. Depressive episode unspecified 66 days
4. Dementia unspecified 29 days
5. Need assistance at home no house member to care
45 days
Table 7.2 Top five “other” common principal diagnoses associated with a co-morbidity of PD. 2005-2006
2005-2006 Average LOS
1. Care involving use rehabilitation procedure 21.5 days
2. Person waiting admission to residential care
20 days
3. Paranoid schizophrenia 62 days
4. Urinary tract infection, site not specified 8.6 days
5. Pneumonitis due to aspiration of food and vomit
11 days
Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November 2007. Metropolitan public hospitals, all private hospitals.
55
Table 8. Location of Hospital of Care - PWP as a principle diagnosis
*Combined years of 2000-01 and 2005-2006
Areas
152139
27
516
118
213
211
0
50
100
150
200
250
01 N
orth
Met
ro
02 S
outh
Met
ro
10 S
outh
Wes
t
11 G
oldf
ield
s
12 G
reat
Sou
ther
n
13 K
imbe
rley
14 M
idw
est
15 P
ilbar
a
16 W
heat
belt
98 P
rivat
e
Total
56
Table 9. Counts of WA public metro hospital separations (including public patients at JHC & PHC) where a diagnosis of Parkinson's disease was recorded
Hospital Attended 2005/06 2006/07
Armadale/Kelmscott District Memorial Hospital 119 74
Bentley Hospital 91 87
Fremantle Hospital 188 188
Graylands Hospital 4 3
Joondalup Health Campus (public patients only) 59 47
Kalamunda District Community Hospital 8 10
King Edward Memorial Hospital For Women 1 4
Murray District Hospital [Pinjarra] 5 14
Osborne Park Hospital 151 174
Peel Health Campus (public patients only) 17 20
Rockingham - Kwinana District Hospital 27 23
Royal Perth Hospital 245 264
Royal Perth Hospital Shenton Park Campus 19 15
Selby Authorised Lodge (Mhs) 2 8
Sir Charles Gairdner Hospital 260 286
Swan District Hospital 35 39
Total 1231 1256
Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November 2007. Metropolitan public hospitals, all private hospitals.
Table 10. Separation Destination of PWP – 2000/01 and 05/06 combined
Separation Destination Total %
Against medical advice/at own risk 2 .3%
Deceased 12 2.05%
Other acute hospital 48 8.2%
Other/Home 346 59.75%
Statistical discharge 91 15.5%
Statistical discharge from leave 4 .7%
Transfer to Other Health Care Accommodation 7
1.1%
Transfer to Psychiatric Hospital 4 .7%
Transfer to Residential Aged Care Service 70 12.%
Grand Total 584 100%
57
Figure 3. Separation Destination of PWP – 2000/01 and 05/06 combined
Separations for Parkinson's
0%
2%
8%
59%
16%
1%
1%
1%12%
Against medical advice/at own risk
Deceased
Other acu te hospital
Other/Home
Statistical discharge
Statistical discharge from l eave
Transfer to Other Health Care Accommodation
Transfer to Psychiatri c Hospital
Transfer to Residentia l Aged Care Service
Source: WA Hospital Morbidity system. Information Collection and Management Branch, (ICAM) WA Health. November 2007. Metropolitan public hospitals, all private hospitals.
58
Appendix 6: Emergency Assessment of Patients with Parkinson’s Disease
A. Symptoms of Parkinson’s Disease of
Parkinson’s disease � Tremor – classically ‘pill rolling’, unilateral
onset
� Stiffness or rigidity
� Bradykinesia or slowness
� Balance problems (falls)
� Gait disturbance
E. Measures to take to ensure regular medication
� Write up drugs immediately – timing and dose
critical
� Write up first dose as stat. prescription
� Allow self medication where practical
� Encourage patients to bring in own medication
� Keep store of essential drugs on ward and contact
on-call pharmacist if necessary
B. Complications of Parkinson’s Disease � Delirium (acute confusion due to drugs or
infection)
� Chest infection, especially aspiration
pneumonia
� Urinary tract infections
� Immobility and falls (check medication and
B.P. standing and lying)
� Parkinson’s Hyperpyrexia Syndrome (Similar
to Malignant Neurolept Syndrome check any
recent changes in medication consider check
Creatinine Kinase CK )
F. Actions to consider when swallowing is difficult � Consider dispersible drug preparations
� Consider posture and use of thickened fluids (ask
expert advice – e.g. speech therapist)
� Consider nasogastric tube
� Consider dopamine agonist by other route
(e.g. apomorphine by subcutaneous infusion)
� Consider percutaneous endoscopic gastrostomy
(PEG) if situation likely to be permanent
C. Drugs for Parkinson’s Disease � L dopa (e.g. sinemet or madopar)
� Dopamine agonists (e.g. cabergoline)
� C.O.M.T. Inhibitors (e.g. entacapone or
Stalevo)
� M.A.O. Inhibitors (e.g. selegiline)
� Others (e.g. amantadine.benzhexol ,
propranolol, antidepressants)
G. Drugs that should be avoided in Parkinson’s Disease
� Anti-psychotics (e.g. haloperidol)
� Prochlorperazine (stemitil)
(NB IF an anti-emetic is required use domperidone
or ondansetron)
� Metoclopramide (maxalon)
� Some antihistamines
� Atypical anti-psychotics (e.risperidone,olanzepine)
- but may be safer than typical agents but mostly
use Seroquel (quetiapine)
59
D. Emergency observations for patients with Parkinson’s Disease � Temperature and respiratory rate
� Blood pressure lying and standing
� Dipstick urine
� Mental test score (e.g. A.M.T., M.M.S.E.)
� Swallowing assessment
H. People who can help ●1 Parkinson’s disease specialist nurse Name:............................................. Tel:......................................................... ●2 Consultant geriatrician/neurologist Name:............................................. Tel:......................................................... ●3 Pharmacist Name:............................................. Tel:......................................................... ●4 Speech therapist Name:............................................. Tel:......................................................... ●5 Physiotherapist Name:............................................. Tel:.........................................................
Modified from document devised by Dr. J George, Dr. S Manickam, Judith Graham (P.D.N.S.), North Cumbria Acute Trust, 2007. Downloaded from http://www.epda.eu.com/PDInfo/Publications/professionalInformation/resources.asp
60
Appendix 7: Best Practice Frameworks for the Management of People with Parkinson’s Disease
1. World Charter for People with Parkinson’s disease
In 1997, the Working Group on Parkinson’s disease, which was formed by the World Health Organisation (WHO), developed The Global Declaration on Parkinson’s Disease. The Working Group urges every government to support the World Charter for people with Parkinson’s disease (launched in April 2007) which states that:
People with Parkinson’s have the right to:
� 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
Reference: European Parkinson’s Disease Association website www.epda.eu.com/globalDeclaration/ accessed 18 October 2007
2. The National Institute for Health and Clinical Excellence (NICE) clinical guidelines for Parkinson’s disease
The key focus of the NICE guidelines is patient-centred care.
The Guidelines take into account patients’ individual needs and preferences and allows them the opportunity to make informed decisions about their care and treatment. Good communication between healthcare professionals and patients is most important along with treatment, care and information which is provided in a culturally appropriate way. Carers and relatives should be given the opportunity to be involved in all levels (The National Collaborating Centre for Chronic Conditions, 2006).
The NICE guidelines outline key recommendations for implementation in order to provide best practice care for people with Parkinson’s. These are outlined below:
For patients with symptoms of Parkinson’s disease - referral to expert for accurate diagnosis quickly
� Mild – within 6 weeks
� New referrals in later disease – within 2 weeks
Diagnosis and expert review
� diagnosis should be reviewed regularly and reconsidered if atypical clinical features develop (6-12 month intervals)
� Acute levodopa and apomorphine challenge tests should not be used in the differential diagnosis of parkinsonian syndromes
Regular access to specialist nursing care
� Clinical monitoring and medication adjustment
61
� A continuing point of contact for support
� Reliable source of information about clinical and social matters of concern to people with PD and their carers
Access to physiotherapy
� Gait re-education, improvement of balance and flexibility
� Enhancement of aerobic capacity
� Improvement of movement initiation
� Improvement of functional independence, including mobility and activities of daily living
� Provision of advice regarding safety in the home
Access to occupational therapy
� Maintenance of roles eg work, family, leisure
� Improvement and maintenance of transfers and mobility
� Improvement of personal self-care activities, such as eating, drinking, washing and dressing
� Environmental issues to improve safety and motor function
� Cognitive assessment and appropriate intervention
Access to speech and language therapy
� Improvement of vocal loudness and pitch range, including speech therapy programmes such as Lee Silverman Voice Treatment (LSVT)
� Teaching strategies to optimise speech intelligibility
� Ensuring an effective means of communication is maintained throughout the course of the disease, including use of assistive technologies
� Review and management to support the safety and efficiency of swallowing and to minimise the risk of aspiration
Palliative care
� Palliative care requirements of people with PD should be considered throughout all phases of the disease
� People with PD and their carers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals
The NICE guidelines have also developed an algorithm, which outlines interventions for people with PD at different levels of progression for the disease. Three stages are identified with recommendations attached. A diagram of the algorithm is shown below in Figure Two.
62
Figure 2. NICE Guidelines National Health Service. National Institute for Health and Clinical Excellence.
June 2006. Parkinson’s disease. NICE clinical guideline no. 35.
63
Appendix 8: Service Figuration – Suggested timelines for implementation
SERVICE LOCATION 2008-2013
2013-2016
Assessment services and management protocols
all acute emergency departments and inpatient general medical wards hospitals including regional resource hospitals
√ √
Specialist multidisciplinary services
Fremantle √ √
Osborne Park Hospital √ √
Bentley X √ permanent if demand driven
Outpatient Specialist Day Therapy Centre Services
Fremantle √ √
Osborne Park Hospital √ √
Mobile Interdisciplinary Team
Bentley √ √ permanent if demand driven
Specialist PD Nurses (PAWA)
Fremantle – linked √ √
Osborne Park Hospital – linked √ √
Bentley – linked √ √
24 Hour Helpline
Statewide √ √
Virtual Network Services
Regional Resource Hospitals and remote areas
Specialists, General practitioners
√
√
Day Therapy Services – ACRU’s
Armadale – Kelmscott Hospital √ √
Rockingham – Kwinana Hospital √ √
Peel Campus Hospital √ √
Bentley √ √
Mercy √ √
Swan Districts Hospital √ √
Joondalup Hospital √ √
64
Ambulatory Care Services
Specialist Day Therapy Centres
√ √
All ACRU’s √ √
Community based therapy services
Metropolitan wide √ √
Regional Resource Centres √ √
Community Care Support
Statewide √ √
ACAT Assessment for residential aged care options
Designated Level 6 - 5 hospitals statewide. (Osborne and Fremantle specialist clinics also
√ √
65
REFERENCES
Access Economics Pty Limited. Living with Parkinson’s Disease – Challenges and Positive Steps for the Future. Canberra; Access Economics. 2007. Ahlskog J E. Beating a dead horse: Dopamine and Parkinson Disease. Neurology 2007; 69, 1701 - 1711 Doherty J, Chadwick J. How the PDNS works in Western Australia. European Parkinson’s Nurses Network. 2006; Spring: 10-11. Ellis T et al. Efficacy of a physical therapy program in patients with Parkinson’s disease: a randomised controlled trial. Archives of Physical Rehabilitation. Vol 86 626- 632. 2005. Goldswain P, Rehberger C, Kent S, Wallace W, Proposal for the development of a specialised unit for Parkinson’s Disease. Metropolitan Health Service. 2002. Department of Health. Hobson, P, Roberts, S Mearar, J. What is the economic utility of introducing a Parkinson’s Disease nurse specialist service? The Clinician. Vol 3 ppii-iii. 2003. Jarman B, Hurwitz B, Cook A. Effects of community based nurses specialising in Parkinson’s disease on health outcome and costs: randomised controlled trial. British Medical Journal. 2002; 324(7345):1072–1075. Levine CB, Fahrbach KR, Siderowf AD, et al. Diagnosis and treatment of Parkinson’s disease: a systematic review of the literature. Evidence Report/Technology Assessment Number 57. (Prepared by Metaworks, Inc., under Contract No. 290-97-0016.) AHRQ Publication No. 03-E040. Rockville, MD: Agency for Healthcare Research and Quality. June 2003. Morris ME. La Trobe University Gait Balance Falls Research. www.latrobe.edu.au/mrc/gaitbalance.html Morris ME. Movement disorders in people with Parkinson’s disease: a model for physical therapy. Physical Therapy. Vol 80(6). 578-597. 2000. Morris ME. Locomotor training in people with Parkinson’s disease. Physical Therapy. Vol 86(10) 1426-1435. 2006. National Collaborating Centre for Chronic Conditions. Parkinson’s disease: national clinical guideline for diagnosis and management in primary and secondary care. London: Royal College of Physicians, 2006. NICE Guidelines National Health Service. National Institute for Health and Clinical Excellence. June 2006. Parkinson’s disease. NICE clinical guideline no. 35. www.nice.org.uk Nieuwboer A et. al. The effect of a home physiotherapy program for persons with Parkinson’s disease. Journal of Rehabilitation Medicine. Vol 33(6) 266-272. 2001.
66
Nieuwboer G, Kwakkel L. Cue Training in the home improves gait-related mobility in Parkinson’s disease: the RESCUE Trial. Journal of Neurology, Neurosurgery and Psychiatry. Vol 78 138-140. 2007. Parkinson’s Association of WA. http://www.parkinsonswa.org.au 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 1999. Rascol O. et al. Treatment interventions for Parkinson’s disease: an evidence based assessment. The Lancet. 2002; 359: 1589-98. Scandalis TA, Bosak A et al. Resistance training and gait functioning in patients with Parkinson’s Disease. American Journal Physical Medicine and Rehabilitation. Vol 80 38-43. 2001. Shannon K M. Dopamine: So “last century”. Neurology Vol 69 329-330. 2007. Sideaway B et al. Effects of long term gait training using visual cues in an individual with parkinson’s disease. Physical Therapy. Vol 86(2)/ 186-194. 2006. Stewart, D A. NICE guideline for Parkinson’s disease. Age and Ageing. Vol 36 240-242. 2007. Thomas S, MacMahon DG, Maguire J. Moving and shaping. 2nd edition, London: Parkinson’s Disease Society, 2006. World Health Charter: Parkinson’s Disease. European Parkinson’s Disease Association website www.epda.eu.com/globalDeclaration/ . accessed 18 October 2007.
Aged Care Network
189 Royal Street
East Perth
Western Australia 6004