Lymphoedema National Service Equity Survey 2002 · compared, only Victoria provides comprehensive management of lymphoedema in excess of the 64% average to both metropolitan and rural

LymphoedemaNational Service Equity Survey

2002

Compiled by ALA State Representative CommitteeWestern Australia, Tina Watkins (Chair Person)

New South Wales, Kerryn Shanley and Jane MaherVictoria, Mary Page

Tasmania, Chris DaleQueensland, Robyn Sharpe

South Australia, Robyn Heddle

1

Lymphoedema National Service Equity Survey, 2002Australasian Lymphology Association

Copyright statement© Australian Lymphology Association, 2003This work is copyright. Apart from any use as permitted under the Copyright Act1968, no part may be reproduced without written permission from the AustralasianLymphology AssociationALA Contact detailsAustralasian Lymphology AssociationPO Box 1879MILTON QLD 4064PH 1300 132 962Website: http://www.lymphology.asn.au

June, 2003

AcknowledgmentsThe Australasian Lymphology Association would like to acknowledge thecooperation of the Tasmanian (Chris Dale and Jasmine Potter) and VictorianGovernment (Penny Sanderson) through permission to include their state garmentpolicies.

Accuracy of ContentThe information contained in this document was correct at the time of its collation,November 2002. It is acknowledged that situations in health service provision canchange in a short time.

http://www.rph.health/

2

TABLE OF CONTENTS

EXECUTIVE SUMMARY...........................................................................................................4

1.0 INTRODUCTION.............................................................................................................7

2.0 BACKGROUND INFORMATION.................................................................................8

2.1. LYMPHOEDEMA................................................................................................................82.2. ALA OBJECTIVES ............................................................................................................82.3. SERVICE PROVIDERS ........................................................................................................82.4. THERAPY PROVISION........................................................................................................92.5. GARMENT PROVISION.......................................................................................................9

3.0 AIMS AND OBJECTIVES ............................................................................................10

4.0 DEFINITIONS ................................................................................................................10

5.0 METHODOLOGY..........................................................................................................11

5.1. PHASE 1: SERVICE PROVISION .....................................................................................115.1.1. Purpose ......................................................................................................................115.1.2. Outcomes...................................................................................................................115.1.3. Sample selection........................................................................................................115.1.4. Survey instrument (Appendix 1) ...............................................................................11

5.2. PHASE 2: GARMENT PROVISION...................................................................................115.2.1. Purpose of Phase One................................................................................................115.2.2. Section two outcomes................................................................................................125.2.3. Survey instrument (Appendix 2) ...............................................................................12

5.3. LIMITATIONS ..................................................................................................................12

6.0 RESULTS.........................................................................................................................13

6.1. RESULTS OF PHASE ONE: SERVICE PROVISION (APPENDIX 3) ........................................136.1.1. Number of service providers .....................................................................................136.1.2. Workforce Data .........................................................................................................156.1.3. Level of service provision .........................................................................................16

6.2. RESULTS OF PHASE TWO: GARMENT PROVISION (APPENDIX 4) .....................................206.2.1. Policy documents: .....................................................................................................206.2.2. Qualifications of garment prescribers: ......................................................................206.2.3. Financial responsibility .............................................................................................206.2.4. Quantity of garments provided in a one year period:................................................21

7.0 DISCUSSION AND CONCLUSION.............................................................................22

8.0 RECOMMENDATIONS................................................................................................24

9.0 REFERENCES................................................................................................................25

3

Appendices

Appendix 1: Survey Service Provision .........................................................................................26Appendix 2: Survey Garment Provision .......................................................................................28Appendix 3: Data Sheets Service Provision..................................................................................31Appendix 4: Data Sheets Garment Provision................................................................................41Appendix 5: Tasmanian Lymphoedema Garment Scheme...........................................................45Appendix 6: Victorian Lymphoedema Compression Garment Program ......................................55

List of figures

Figure 1: Service Providers ...........................................................................................................13Figure 2: Service provider’s state by state ....................................................................................14Figure 3: Proportion of FTE positions compared to total number of services ..............................15Figure 4: Proportion of services providing a comprehensive lymphoedema service ...................16Figure 5: Proportion providing a comprehensive lymphoedema service – PUBLIC ...................17Figure 6: Proportion providing a comprehensive lymphoedema service - PRIVATE .................17Figure 7: Level of service by state, public versus private .............................................................18Figure 8: Level of service by state: metropolitan versus rural ......................................................18

List of tables:

Table 1: Service Providers ............................................................................................................14Table 2: Estimated total FTE's state by state.................................................................................15Table 3: Level of service provision...............................................................................................19Table 4: Average of service provision: public versus private(%).................................................19Table 5: Average of service provision: metropolitan versus rural (%).........................................19

4

EXECUTIVE SUMMARY

Introduction

The Australasian Lymphology Association (ALA) is committed to improving the management of

those with, or at risk of, developing lymphoedema in Australasia. In order to set strategic

priorities to pursue this goal, the Executive Committee called for the quantification of service

provision to patients with lymphoedema from the states of Australia.

The results and recommendation of this survey are presented in this report.

Methodology

The study involved the use of a survey to determine service provision. Each state represented on

the Australasian Lymphology Association (ALA) Council surveyed their region- rural and

metropolitan, public and private. Data collection was divided into two phases; Phase One -

Service Provision and Phase Two - Garment Services.

The following data was gathered;

Phase One: Service Provision;

! Number of metropolitan services

! Number of rural services

! Workforce Data

! Level of therapy provided

Phase Two: Garment Provision;

! Current practice

! Policy Documents

! Qualifications of garment prescribers

! Financial Responsibility

! Quantity of garments provided in a one year period

5

Results

The six states of Australia were surveyed. In total 171 services were identified across Australia.

Of these 54% of services were provided in the metropolitan region, with 38% being public and

62% private. Of the 45% of services provided rurally, 65% were public and 35% private.

Overall the number of service providers in each state does not appear to reflect the expected

demand for services by the state’s population. There is no pattern to the distribution of services

between states, nor within states between metropolitan and rural domains. It must be considered

that other forces, perhaps economic, perhaps workforce skill based, are determining the number

of services available to patients with lymphoedema.

The collation of workforce data reveals that there are approximately 93 full time equivalent

(FTE) therapists across Australia. This includes Physiotherapists, Occupational Therapists,

Massage Therapists, Laser Therapists and Registered Nurses providing management services to

those with lymphoedema. The average number of therapists per service Australia wide is only

0.54 FTE.

On average 64% of services provide a “comprehensive” lymphoedema management service that

includes Complex Physical Therapy and Garment Provision. As lymphoedema is a chronic, non-

curable condition with extensive health, lifestyle and financial burdens, this level of service

provision must be questioned. This issue becomes more concerning when it is revealed that two

states have no comprehensive services available to their rural communities. When each state is

compared, only Victoria provides comprehensive management of lymphoedema in excess of the

64% average to both metropolitan and rural sectors. Western Australia, South Australia and

Tasmania appear significantly disadvantaged, with these states averaging below 50% of their

services providing comprehensive management.

Garment provision practices across Australia reveal dramatic inequity. Whilst Victoria and

Tasmania have in place government-driven policy to guide the appropriate prescription and

demand equity of supply to their population, no other state has such guidelines. The remaining

states rely on individual service benevolence, which is rarely forthcoming, with most patients,

despite their financial circumstances, having to pay for their garments.

6

Conclusion

The Australian Federal Government has demonstrated its commitment to lymphoedema as a

health issue, through the authorisation of national forums and committees auspiced by the

Department of Health and Aged Care. Lymphoedema consumers have long been heard to voice

their concerns regarding the difficulty in accessing treatment. At both the 2000 Secondary

Lymphoedema Summit and the 2001 Primary Lymphoedema Summit, the issue of service equity

and provision was raised as a significant issue for consumers uniformly throughout Australia.

Disappointingly, the results of this review clearly reveal gross inequities in the provision of

service to people with lymphoedema.

Recommendations

It is the recommendation of the ALA that further investigation and explanation of current

services across metropolitan and rural Australia be performed. This document provides a

framework for such a task, however information needs to be completed, and subsequent issues

such as parameters for service provision be established.

Recommendations for further investigation:

1. Further investigation of lymphoedema services to the Australian and Australasian population

utilising this study’s methodology to include

• Australian Capital Territory, Northern Territory, New Zealand

2. Identification of barriers to Comprehensive Lymphoedema Service Provision

• survey of ALA members

• survey of public hospitals, rural and metropolitan, exploring actual service provisions and

guiding philosophy

3. Investigation of the Commonwealth Government supporting the establishment of National

Garment Provision Guidelines

7

1.0 INTRODUCTION

The Australasian Lymphology Association is a national body representing health professionals

involved in the treatment, management and research of lymphoedema. In May 2001 they were

involved in the Primary and Secondary Lymphoedema: Priorities and Strategies Workshop in

Melbourne, Australia, supported by the Asthma and Cancer Group of the Department of Health

and Aged Care. This workshop determined four major issues to be addressed by the

lymphoedema community. They were as follows:

! The lack of a clear definition for both primary and secondary lymphoedema

! The lack of community awareness regarding lymphoedema, particularly amongst consumers

and health care professionals

! The apparent disparity between the services that are offered in each of the States and

Territories;

! The need for future funding for research into lymphoedema.

At the conclusion of the workshop there was agreement that the Australasian Lymphology

Association would take responsibility for progressing the Action Plan determined to address the

four major issues listed above. This document meets one of the aims of the Primary and

Secondary Lymphoedema: Priorities and Strategies Workshop, quantifying the disparity between

services offered in each state and territory.

8

2.0 BACKGROUND INFORMATION

2.1. Lymphoedema

Lymphoedema is defined by the International Society of Lymphology as swelling of a region or

limb due to low output failure of the lymph circulatory system (Lymphology 1995). This can

either be congenital (primary lymphoedema) or due to anatomical obliteration (secondary). To

the sufferer it can present as swelling, heaviness, tightness, pain and/or reduced mobility in the

affected limb (Maunsell, Brisson and Deschenes, 1992). It is a chronic, non-curable condition

that has significant impacts on quality of life.

2.2. ALA Objectives

! To promote knowledge relating to the issues, needs and development of Lymphology

! To encourage research in the area of Lymphology

! To promote and provide a forum for the regular exchange of views and information in

relation to Lymphology

! To be recognised as an authoritative body that consults with, and makes representation to,

and advises government, educators, health care providers and other third parties, in regard to

oedema and lymphoedema management

! To improve the knowledge and understanding that includes prevention, detection, diagnosis

and management of oedemas and lymphoedema.

2.3. Service Providers

The provision of lymphoedema management is not the sole ownership of one particular

profession. Ranges of different people who can have a variety of qualifications often manage

lymphoedema. This can be in the public hospital setting, or private practice. It is the ALA’s

view that lymphoedema therapy should be provided by ‘appropriately’ trained professionals.

The precise interpretation of 'appropriate' is currently being defined; however for the purpose of

this research, ‘appropriate’ providers of a lymphoedema management service were deemed to be

tertiary trained nurses and allied health professionals.

‘Allied Health Professionals’ refers to “Clinical Allied Health professionals: those tertiary

trained individuals other than medical practitioners, nurses, dentists and pharmacists, (who are

clearly health professions) who act in a clinical capacity and who could enter into a care based,

and/or primary investigative and primary diagnostic relation with acute, subacute, rehab and

ambulatory patients, be they in the public or private sector (Grimmer 1997).

9

2.4. Therapy Provision

Complex Physical Therapy (CPT) is the recognised terminology for the comprehensive

management of lymphoedema. It involves a combination of physical therapies with the aim of

removing excess plasma proteins from the tissues. A typical treatment involves one hour, five to

six days per week over 4 weeks; however, this can be very variable, depending on the severity of

the lymphoedema and the therapist’s approach

CPT involves four components:

1. Skin care to heal and prevent infection

2. Massage to remove protein and excess fluid by opening collateral lymphatics to increase

drainage

3. Compression bandages to increase tissue pressure and lymph flow. A compression

elastic garment is prescribed at the end of treatment;

4. Exercises, which are performed while wearing the bandages, to promote muscle and joint

pumping.

(Browning 1997).

Professionals acknowledge that clinical situations arise when the need for all four components of

Complex Physical Therapy is not required. This can be because of a lesser severity of oedema,

the patient’s individual situation that does not allow adherence to all components of Complex

Physical Therapy, or when management is focussed on prevention and/or self management.

2.5. Garment Provision

Compression garments form an integral part of overall patient management, and in particular, are

crucial in maintaining intensive treatment improvements and reducing deterioration (ie increased

swelling) over the longer term. There are a wide variety of companies internal and external to

Australia that provide compression garments, which can be either ‘off-the-shelf’ or custom-

made. Garment companies do not stipulate any qualifications of the individual ordering the

garment.

10

3.0 AIMS AND OBJECTIVES

The ALA aims to achieve a quantitative understanding of the equity of services provided to

patients with lymphoedema across Australia.

The specific objectives of the study are to:

1. Quantify the number of services providers

2. Quantify the extent to which service providers provide comprehensive management of

lymphoedema

3. Quantify the lymphoedema workforce

4. Determine compression garment prescription patterns

5. Determine state policies for compression garment prescription

4.0 DEFINITIONS

Comprehensive Management

Service provides the required (best practice) management to the patient after full assessment,

without restriction.

Eg. CPT as clinically indicated, or education/self management for early intervention

Reduced Management

Service provides reduced management to the patient, based on a balance of issues such as

organisational or financial barriers.

Eg. Only garments, only massage

Professional Abbreviations

LT: Laser Therapist

MT: Massage Therapist

OT: Occupational Therapist

PT: Physiotherapist

RN: Registered Nurse

11

5.0 METHODOLOGY

5.1. PHASE 1: Service Provision

5.1.1. Purpose

The purpose of this section of the study was to conduct a survey of service providers across each

state and determine the extent of service they provide to patients with lymphoedema.

5.1.2. Outcomes

Section one aimed to identify:

! Service providers offering therapeutic management of lymphoedema

! The workforce employed by each service provider (Full Time Equivalent)

! The therapy provided by each service provider (Comprehensive or Reduced)

5.1.3. Sample selection

Each state representative on the ALA Council used their local knowledge and/or conducted

telephone interviews with service providers in their states. Lists of public facilities were made

available from the state health departments, and private facilities were sourced from the Yellow

Pages Directories. Only the six states of Australia were included in this survey.

5.1.4. Survey instrument (Appendix 1)

The survey instrument was a basic form with provision to document the following:

! Service name

! Workload (estimate staffing)

! Therapy (statement of therapy provided; Comprehensive or Reduced)

5.2. PHASE 2: Garment Provision

5.2.1. Purpose of Phase One

The purpose of this section of the study was to conduct a survey of each state and determine their

current practice in compression garment provision to patients with lymphoedema. Data was

collection from both the public and private sectors.

12

5.2.2. Section two outcomes

Section one aimed to identify:

! Current practice of each state in regard to garment prescription and provision

! If a written policy existed for each state

! The minimum qualification of prescribers of compression garments

! Who takes responsibility for the cost of compression garments?

! The quantity of garments patients are eligible for in a year

5.2.3. Survey instrument (Appendix 2)

The survey instrument was a basic form, with provision to document the following in relation to

the public and private sectors:

! Current practice

! Policy Documents

! Qualifications of garment prescribers

! Financial responsibility

! Quantity of garments eligible in a one year period

5.3. Limitations

The following factors need to be considered during interpretation of the survey findings:

1 Participation in the survey was voluntary. Service providers who chose not to participate in

the survey may have done so, not because they do not provide a service, but simply due to a

desire to not reveal their service practices.

2 Determination of private service providers was very difficult as there was no one listing of all

providers of lymphoedema services. Due to this, some services may have been omitted.

3 Changing workforces: many services reported a fluctuating provision of services depending

of other workload commitments and priorities. This will add to inaccuracies in the

quantifying of the workload data.

4 Methodology to validate self-reported levels of therapy and service activity has not been

included in the survey. Reporting bias is therefore a potential source for systematic error.

13

6.0 RESULTS

6.1. Results of Phase One: Service Provision (Appendix 3)

6.1.1. Number of service providers

In total 171 services were identified across Australia. Of these, 54% of services were provided

in the metropolitan region, with 38% being public and 62% private. Of the 45% of services

provided rurally, 65% were public and 35% private (Figure 1). The majority of lymphoedema

services are currently provided in the private metropolitan sector, this amount almost doubling

that provided in the metropolitan public sector (Table 1). The least services are to be found in

the rural private sector.

Figure 1: Service Providers

38

6265

35

0

10

20

30

40

50

60

70

Public Private

Metropolitan

Rural

When each state is examined individually it can be seen that there are some states that do not

follow the trends of greater private than public services in the metropolitan area (Table 1, Figure

2). It can be observed that in the metropolitan regions of New South Wales, Queensland, South

Australia and Western Australia there are proportionately greater numbers of services that are

private than public, but in Tasmania and Victoria this does not hold true.

Unlike the national trend, Queensland has significantly more private services than public in the

rural sector, and it and South Australia are the only states to have more private than public

services overall. It can also be seen that rural services in South Australia, Tasmania and Western

Australia are significantly lower than their overall number of metropolitan services.

14

Table 1: Service Providers

NSW QLD SA TAS VIC WA TOTAL

Public

Metropolitan 7 10 4 2 7 5 35

Rural 21 8 4 1 13 4 51

Private

Metropolitan 13 17 11 1 8 8 58

Rural 3 16 1 1 5 1 27

Total 44 51 20 5 33 18 171

Figure 2: Service provider’s state by state

0

5

10

15

20

25

30

Met

ro

Rur

al

Met

ro

Rur

al

Met

ro

Rur

al

Met

ro

Rur

al

Met

ro

Rur

al

Met

ro

Rur

al

PrivatePublic

NSW QLD SA TAS VIC WA

15

6.1.2. Workforce Data

The collation of workforce data reveals that there are approximately 93 full time equivalent

(FTE) therapists across Australia (Table 2). This includes Physiotherapists, Occupational

Therapists, Massage Therapists, Laser Therapists and Registered Nurses providing management

services to those with lymphoedema. As crude values, the majority of therapists are employed in

NSW.

However, it is prudent to examine the proportion of therapists compared to the amount of service

providers. Figure 3 shows a comparison from the number of FTE therapists to the number of

service providers in each state. Here is can be seen that in no state is there more than 1.0 FTE

practising in a service (on average). In fact the average number of therapists per service

Australia wide is only 0.54 FTE. Clearly NSW has a higher proportion of therapists per service

(0.98 FTE). The remainder of the states have around 0.4 FTE therapists per service.

Table 2: Estimated total FTE's state by state


Public

Metropolitan 13.0 3.9 1.5 1.05 5.4 2.3 27.15

Rural 14.1 1.5 0.4 0.2 3.5 0.8 20.50

Private

Metropolitan 13.6 6.65 6.8 0.4 2.25 5.9 35.60

Rural 2.3 5.9 0.1 0.4 0.6 0.2 9.50

Total 43.0 17.95 8.8 2.05 11.75 9.2 92.75

Figure 3: Proportion of FTE positions compared to total number of services

0.98

0.350.44 0.41 0.34

0.53

00.20.40.60.8

11.2


16

6.1.3. Level of service provision

During data collection, services were assessed as either providing Comprehensive

Lymphoedema Management or less (eg. solely massage or garment provision). This data was

then used to determine how many of the services that had been identified actually provided a

service that could meet the full needs of their clientele.

In examining the data, on average, 64% of services provide a comprehensive service (Figure 5).

This is relatively even across the metropolitan and rural sectors – both public and private.

Figure 4: Proportion of services providing a comprehensive lymphoedema service

When this data is examined on a state by state level the following results prevail (Table 3, Figure

5). In the public system, Tasmania has no service in the rural sector that provides

comprehensive management. Victoria and New South Wales have similar levels of service

provision between the metropolitan and rural sectors, these states also being the only two with

more public than private services providing comprehensive services to the rural population.

Queensland, South Australia and Western Australia have a much larger disparity between

metropolitan and rural services, with significantly lower levels of service provision available to

the public in New South Wales and Western Australia overall.

69 6461 67

0

20

40

60

80

100

Public Private

% MetropolitanRural

17

Figure 5: Proportion providing a comprehensive lymphoedema service – PUBLIC

In the private sector the results are the same: Tasmania, with again no rural service providing

comprehensive management (Figure 6). However this is also true for Western Australia and

South Australia. Management in the remaining states (Queensland, Victoria and New South

Wales) is reasonably equitable between the metropolitan and rural sectors. It is clear the South

Australia and Western Australia has significantly lower overall levels of service provided

privately than the other four states.

Figure 6: Proportion providing a comprehensive lymphoedema service - PRIVATE

020406080

100120


%

MetropolitanRural

020406080

100120


%

MetropolitanRural

18

When the public to private levels of service are compared state by state (Figure 7, Table 4), only

two states have more public than private services – South Australia and Western Australia.

Queensland and Victoria have relatively equitable availability of comprehensive service in the

private and public domain, but in New South Wales and Tasmania the percentage of private

services is considerable larger than the public services.

Figure 7: Level of service by state, public versus private

A comparison of metropolitan to rural levels of service provision reveals a large disparity

between the public and private sectors in Western Australia (Figure 8, Table 5). For New South

Wales, Queensland, Victoria and Western Australia more comprehensive services are available

in the private sector, but this is the reverse for South Australia. Overall the average percentage

of services across Australia providing comprehensive lymphoedema management is 64.5%.

Western Australia (33%), Tasmania (33.5%), South Australia (53.5%) and New South Wales

(59.5%) all fall below this benchmark (64.5%). In comparison Queensland and Victoria average

72.5% and 85% respectively.

Figure 8: Level of service by state: metropolitan versus rural

020406080

100


% Metropolitan

Rural

0

20

40

60

80

100


%

PublicPrivate

19

Table 3: Level of service provision{Number of services providing comprehensive management (%)}

NSW QLD SA TAS VIC WA TOTALPublic

Metropolitan 3 (43) 8 (80) 4 (100) 1 (50) 5 (71) 3(60) 24 (69)

Rural 11 (52) 5 (62.5) 3 (75) 0 (0) 11 (85) 1 (25) 31 (61)

Private

Metropolitan 10 (77) 12 (71) 3 (27) 1 (100) 8 (100) 3 (37) 37 (64)

Rural 2 (66) 12 (75) 0 (0) 0 (0) 4 (80) 0 (0) 18 (67)

TOTAL 26 (59) 37 (73) 10 (50) 2 (40) 28 (85) 7 (39) 110 (64)

Table 4: Average of service provision: public versus private(%)


Public 50 72 87 33 80 44 64.0%Private 75 73 25 50 92 33 65.0%

Average 62.5 72.5 56 41.5 86 38.5 64.5%

Table 5: Average of service provision: metropolitan versus rural (%)


Metro 65 74 47 67 87 46 66.0%Rural 54 71 60 0 83 20 63.0%

Average 59.5 72.5 53.5 33.5 85 33 64.5%

20

6.2. Results of Phase Two: Garment Provision (Appendix 4)

Data was gathered on a state by state basis for the six states of Australia.

Current practice varied greatly in each state. For the majority of states, different hospitals

provided different services, not based on any guiding principle (financial or epidemiological) or

therapeutic philosophy. However, Tasmania and Victoria do possess statewide garment

prescription schemes that support the provision of garments to lymphoedema patients within the

context of comprehensive management.

6.2.1. Policy documents:

Tasmania has produced the Statewide Lymphoedema Garment Policy and Victoria, the

Lymphoedema Compression Garment Program. Both of these programs are run from the Health

Budget of each State Parliament.

6.2.2. Qualifications of garment prescribers:

In all states Physiotherapists, Occupational Therapists and Nurses are known to prescribe

garments to patients. In most states, no minimum qualification, beside their basic state’s degree,

is required. However, in Victoria and Tasmania prescribers are expected to have completed a

recommended training course in lymphoedema management, in addition to their basic degree.

6.2.3. Financial responsibility

Public:

The responsibility for the cost of garments falls primarily to one of three places:

- the individual service provider

- the consumer, or

- a central government- funded scheme

New South Wales, Queensland, South Australia and Western Australia have no state-wide policy

for payment for garments, with each service provider having their individual financial

arrangements. This again can vary between full cost to the consumer, partial cost to the

consumer and full cost borne by the service provider (government). Tasmania and Victoria’s

garment schemes allow for co-payment by government and consumer, based on income level.

21

Private

Privately, consumers with health insurance can receive a rebate, depending on their individual

insurer. However, many private insurers do not provide any rebate for garment costs.

6.2.4. Quantity of garments provided in a one year period:

There is no nationally agreed number of garments with which patients should be provided.

Generally there is a view that between two and four garments would be required in a year.

However, up to six are provided under the Victorian scheme.

22

7.0 DISCUSSION AND CONCLUSION

Australia as one nation has an overarching Federal Government, which has identified

lymphoedema as a Health issue worthy of recognition and investment. The following

national fora and committees that have been established by the Federal Department of

Health and Aged Care exemplify this;

• 2001 National Lymphoedema Summit, Adelaide, Dept of Health and Aged Care

in conjunction with the National Breast Cancer Centre

• 2002 National Primary Lymphoedema and non breast cancer-related secondary

lymphoedema summit, Melbourne, Dept of Health and Aged Care

• 2002 National Lymphoedema Working Party, Department of Health and Aged

Care and the Australasian Lymphology Association

• 2002 National Medical Review Board Inquiry into Lymphoedema Therapies.

Lymphoedema consumers have long been heard to voice their concerns regarding the

difficulty in accessing treatment. At the 2002 Summit, the issue of service equity and

provision was raised as a significant issue for consumers uniformly throughout

Australia. Disappointingly, the results of this review clearly reveal a lack of parity

within and between states, in the provision of services to people with lymphoedema.

In discussing pure numbers of services in comparison to population, it would be

expected that the larger states of Australia, being New South Wales (approx 6.3

million), followed by Victoria (4.6 million) and then Queensland (3.6million) would

have the greatest number of services. In fact, Queensland has the greatest number of

service provider’s (51) and New South Wales and Victoria 44 and 33 respectively.

And although Western Australia and South Australia are much smaller states, the

population size is not so great as to explain these states having less than half the

number of service providers than Queensland and New South Wales.

When state services are compared metropolitan to rural, there is disparity in the

proportion of services provided. Victoria and New South Wales have more rural than

metropolitan services, whilst Western Australia and South Australia have only one

third the number of rural services compared to metropolitan services. Overall the

23

number of service providers in each state does not appear to reflect the expected

demand for services by population.

The collation of workforce data reveals that there are approximately 93 full time

equivalent (FTE) therapists across Australia. This includes Physiotherapists,

Occupational Therapists, Massage Therapists, Laser Therapists and Registered Nurses

providing management services to those with lymphoedema. As crude values, the

majority of therapists are employed in NSW. The average number of therapists per

service Australia wide is only 0.54 FTE. NSW has a higher proportion of therapists

per service (0.98 FTE), but the remainder of the states have approximately 0.4 FTE

therapists per service.

Consumers frequently raise with the ALA their demand for appropriate service

provision, and assurance of quality management of their lymphoedema. On a

population-wide analysis, it appears that at 64% of Australia’s lymphoedema service

providers, patients will be able to access comprehensive management of their

condition. As Lymphoedema is a chronic, non-curable condition with extensive

health, lifestyle and financial burdens this level of service provision must be

questioned. This issue becomes more alarming when it is seen that Tasmania has no

comprehensive service available to their rural community either publicly or privately,

and South Australia and Western Australia have no comprehensive rural services in

the private sector (which must be placing a large burden on the rural public sector).

Only Victoria provides comprehensive management of lymphoedema in excess of the

64% average to both metropolitan and rural sectors. Western Australia, South

Australia and Tasmania appear significantly disadvantaged, with their states

averaging below 50% of their services providing comprehensive management.

Garment provision practices across Australia reveal dramatic inequity. Whilst

Victoria and Tasmania have in place government-driven policy to guide the

appropriate prescription and demand equity of supply to their population, no other

state has such guidelines. The remaining states rely on individual service

benevolence, which is rarely forthcoming, with most patients, despite their financial

circumstances, having to pay for their garments.

24

8.0 RECOMMENDATIONS

It is the recommendation of the ALA that further investigation and explanation of

current services across metropolitan and rural Australia be performed and, due to the

ALA’s representation of Australasia, a comparison to New Zealand be included. This

document provides a framework for such a task; however some aspects need to be

studied in further depth and subsequent issues such as reasons for service parameters

be established.

Recommendations for further investigation:

1. Further investigation of lymphoedema services to the Australian and Australasian

population, utilising the aforementioned methodology for the following sites:

• Australian Capital Territory, Northern Territory, New Zealand

2. Identification of barriers to Comprehensive Lymphoedema Service Provision

• survey of ALA members

• survey of public hospitals, rural and metropolitan, exploring actual service

provisions and guiding philosophies

3. Investigation of the Commonwealth Government supporting the establishment of

National Garment Provision Guidelines

Recommendations for ALA Executive:

1. Distribution of summary of current document to ALA members via newsletter

with contact details for further information

2. Offer of support to States to pursue state-wide garment provision policies utilising

data from this document

3. Distribution of document to peak health bodies:• Department of Health and Aged Care

• Lymphoedema Therapist Review

Committee

• National Lymphoedema Working Party

• State Lymphoedema Consumer Groups

• Australian Physiotherapy Association

• Occupational Therapy Association of

Australia

• Nursing Associations/Colleges

• National Breast Cancer Centre

• NSW Breast Cancer Institute

• State Cancer Councils

25

9.0 REFERENCES

Browning, C, Thomas and Associates. (1997) Lymphoedema: prevalence, risk

factors and management: a review of research. Eds: Redman, S., Pillar, C., Turner, J.

and Boyle, F. Sydney: NHMRC National Breast Cancer Centre.

Department of Health and Aged Care (2001). Primary and secondary lymphoedema:

Priorities and strategies workshop. Melbourne.

Grimmer, K. (1997). Allied health ambulatory care reform project. Commonwealth

of Australia

Lymphology (1995) Working Definition of Lymphoedema. 28; 113 –117

Maunsell, E., Brisson, J. and Deschenes, L. (1992). Psychological distress after initial

treatment of breast cancer: assessment of potential risk factors. Cancer. 70:120-125.

26

Appendix 1SURVEY: Service Provision

27

PHASE ONE: SERVICE PROVISION

For each service provider in your state please determine the following details:

PUBLIC

Practice… Workload Therapy

PRIVATE

Workload: estimate of the workload (FTE staff or patient throughput)Therapy: simply state if provide complete ‘CPT’ service or some type of reducedservice (eg garments or massage only).

STATE:_________

28

Appendix 2SURVEY: Garment Provision

29

PHASE TWO: Garment Provision

Public Patients:· What is current practice?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Is there a written policy for the state? (if so please include)

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Who prescribes? Any minimum qualifications

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Cost to consumer?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Govt Rebate/Discount?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· No of garments eligible in a year?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

STATE:_________

30

Private Patients:· What is current practice?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Is there a written policy for the state? (if so please include)

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Who prescribes? Any minimum qualifications

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Cost to consumer?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· Govt Rebate/Discount?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

· No of garments eligible in a year?

____________________________________________________________________

____________________________________________________________________

____________________________________________________________________

31

Appendix 3DATA SHEETS: Service Provision

32

NSW

Public:Number of metropolitan services: 7Number of rural services: 21

Practice Workload (FTE) TherapyMetropolitanBraeside Hospital 1.0 Reduced

Concord Hospital 3.0 ComprehensiveLiverpool Hospital 2.0 ReducedPrince of Wales Hospital 1.0 ReducedSt. George Hospital 2.0 ComprehensiveSacred Heart Hospital 2.0 Reduced (palliative only)Westmead Hospital 2.0 ComprehensiveRuralBateman’s Bay Hospital 1.0 ReducedBathurst Rehab Centre 0.5 ReducedCoffs Harbour Hospital 1.0 ComprehensiveCooma Hospital 0.5 ReducedDubbo Lourdes 0.5 ReducedGoulburn District Hospital 1.0 ReducedGosford Hospital 0.5 ReducedLismore St Vincent’s 1.0 ComprehensiveManning Base Hospital 1.0 ReducedMuswellbrook Hospital 0.5 ComprehensiveNepean Hospital 0.5 ComprehensiveNewcastle Mater Hospital 1.0 ComprehensiveOrange Base Hospital 1.0 ComprehensivePort Macquarie Hospital 0.5 ComprehensiveQueanbeyan Hospital 0.5 ComprehensiveShoalhaven Hospital Nowra 0.5 ComprehensiveTamworth District Hospital 0.3 ReducedTweed Heads Hospital 0.3 ComprehensiveWagga Wagga Base Hospital 0.5 ReducedWollongong/IllawarraHospital

1.0 Comprehensive

Mercy Care Centre 0.5 Reduced

33

Private:Number of metropolitan services: 13There are a number of massage therapists in Sydney offering some form of treatment. There is nocontact list available to trace who they all are and what they provide.

Number of rural services: 3

Practice Workload (FTE) TherapyMetropolitanElizabeth Bay 1.0 (PT) ComprehensiveFairfield Private 1.0 ComprehensiveGlendale 1.0 ReducedHornsby 1.0 (PT) ComprehensiveHurstville SydneyLymphoedema Private Clinic

0.5 Comprehensive

Lady Davidson PrivateHospital

0.2 Comprehensive

Mt.Wilga Private Hospital 3.0 ComprehensiveNepean Cancer Care Centre 0.3 ReducedNewport Physio Practice 2.0 ComprehensiveNorthern Beaches CareCentre

0.3 Comprehensive

St. Vincent’s PrivateHospital

2.0 Comprehensive

Westmead PhysiotherapyCentre

0.3 Comprehensive

Wollongong Physio Practice 1.0 unknownRuralIllawarra LymphoedemaClinic

0.3 Comprehensive

Lymphoedema Care CentralCoast

1.0 Comprehensive

Port Macquarie 1.0 (PT) unknown

34

QLD

Public:Number of metropolitan services:10Number of rural services: 8

Practice Workload (FTE) TherapyMetropolitanGold Coast Hospital 0.5 (PT)

0.1 (on demand OT)Comprehensive

Ipswich General Hospital 0.5 ComprehensiveLogan District Hospital 0.2 ReducedMater Adults Hospital 0.1 (4hrs per week) Reduced (garments only)Mater Children’s Hospital 0.1 (on demand) ComprehensiveMt Olivet Hospital 0.2 ComprehensiveRoyal Brisbane Hospital 0.5 (PT)

0.5 (OT)Comprehensive

Redlands Hospital 0.2 ComprehensiveRoyal Children’s Hospital 0.5 ComprehensiveRoyal Women’s Hospital 0.5 (PT) ComprehensiveRuralCairns Base Hospital 0.2 ReducedCaloundra Hospital 0.2 ReducedGladstone Hospital 0.2 ReducedGympie Hospital 0.1 (on demand) Comprehensive (on demand)Rockhampton Hospital 0.1 (on demand OT) ComprehensiveSt. George Hospital 0.1 (on demand) Reduced (garments only)Townsville Hospital 0.2 (OT)

0.3 (PT)Comprehensive

Wynnum Hospital 0.1 (4-5 hrs week) Comprehensive

35

Private:Number of metropolitan services:17Number of rural services: 16

Practice Workload (FTE) TherapyMetropolitanAshgrove Mobile Rehab 0.5 ComprehensiveBrisbane Central Blue Care < 0.2 ComprehensiveBenowa Focus on Women 0.4 ComprehensiveCamp HillPhysiotherapy

< 0.2 Comprehensive

Capalaba Redlands MobilePhysiotherapy Service

0.2 (8 – 10 hr per week) Comprehensive

Cleveland St Luke’s NursingService

< 0.2 Comprehensive

Everton Hills < 0.1 (1 – 2 hrs per week) ReducedFig Tree Pocket 1.0 (PT) Comprehensive (+ laser)Goondiwindi Physiotherapy < 0.2 ComprehensiveBody Mechanics PhysicalTherapy Centre

< 0.2 Reduced

Ingham Blue Care < 0.2 ReducedToowoomba <0.1 (on demand PT) ComprehensiveStafford < 0.1 (1 hr per week OT) Reduced (garments only)St. Vincent CommunityService

1.0 (RN) Reduced (garments only)

South Brisbane- Active rehaband Mater PhysiotherapyServices

< 0.1 (1-2 hrs per week PT) Comprehensive

The Hills LymphoedemaClinic

0.25 Comprehensive

The Mater Private Centre forHaematology and OncologyLymphoedema Clinic

1.0 (PT)0.5 (RN)0.2 (OT)

Comprehensive

RuralAtherton Blue Care < 0.2 ComprehensiveBundaberg Mater Hospital < 0.2 ReducedCairns Occupational Therapy 0.1 (Variable) ComprehensiveCoorparoo 0.1 (on demand OT) Reduced (garments only)Mackay Mater Hospital < 0.2 ComprehensiveMount Isa Blue Care 0.5 (RN) ReducedMaroochydore Physiocare 0.2 (8-10 hrs per week) ComprehensiveNew Farm Physio onBrunswick

0.1 Comprehensive

Pialba Physiotherapy < 0.1 (2 hrs per week) Reduced (garments only)Ravenshoe < 0.1 ComprehensiveRedcliffe Peninsula < 0.1 (PT) ComprehensiveThe Mater Private Centre forHaematology and OncologyLymphoedema Clinic

2.0 (PT)0.5 (RN)0.2 (OT)

Comprehensive

Southport Christine Davies 0.1 (on demand PT) ComprehensiveToowoomba –St. Andrews 0.5 (PT)


Wilson Physiotherapy 0.1 (3 hrs average per week) ComprehensiveYandina 0.1 (5 hrs average per week,

RN)Comprehensive (+ laser)

36

SA


Practice Workload (FTE) TherapyMetropolitanLyell McEwin HealthService

0.2 Comprehensive

Queen Elizabeth Hospital 0.1 ComprehensiveRepatriation GeneralHospital

0.2 Comprehensive

Royal Adelaide Hospital 1.0 ComprehensiveRuralLaura Hospital 0.1 ReducedMount Gambier Hospital 0.1 ComprehensivePort Lincoln Health Service 0.1 ComprehensiveWhyalla hospital 0.1 Comprehensive

Private:Number of metropolitan services: 11Number of rural services: 1

Practice Workload (FTE) TherapyMetropolitanAdelaide (City) 1.0 ReducedAdelaide LymphoedemaClinic, Norwood

1.0 (PT) Comprehensive

Eastwood 1.0 ReducedFlinders Breast/OncologyClinic

0.2 (Friday only) Reduced

Ingle Farm and MobileService

1.0 Comprehensive

Kensington Park 1.0 ReducedKent Town Health Care 0.2 (Wed. every 2nd Sat) ReducedLymphoedema & LaserTherapy/Glenside

1.0 Comprehensive

S.A. Education HealthCentre Adelaide (City)

0.1 (Part time) Reduced

Unley 0.2 ReducedWestern HospitalGlenelg Beach

0.1 Reduced

RuralPort Augusta 0.1 Reduced

37

TAS

Public:Number of metropolitan services: 2Number of rural services:1

Practice Workload (FTE) TherapyMetropolitanRoyal Hobart Hospital 0.45 (PT)


Launceston General Hospital 0.2 ReducedRuralNorth West General Hospital 0.2 Comprehensive

Private:Number of metropolitan services: 1Number of rural services:1

Practice Workload (FTE) TherapyMetropolitanLenah Valley 0.4 ComprehensiveRuralTasmania LymphoedemaClinic, St Mary’s

0.2 (MT)0.2 (LT)

Reduced (laser and massageonly)

38

VICTORIA

Public:Number of metropolitan services: 7Number of rural services:13

Practice Workload (FTE) TherapyMetropolitanAlfred Hospital 0.1 ComprehensiveAustin & Repatriation,Mercy Lymphoedema Clinic, 4.05 ComprehensiveSt Vincent’sMonash link CommunityHealth Services

0.1 Comprehensive

Monash Medical Centre 0.6 Reduced (upper limb only,however comprehensive to thispopulation)

Peter MacCallum CancerInstitute

0.25 Comprehensive

Ranger Community Health 0.2 ReducedRDNS Essendon Centre 0.1 (as required) ComprehensiveRuralBairnsdale Regional HealthServices

0.1 as required Reduced

Ballarat Health Service (inclGrampions Region)

1.0 Comprehensive

Bendigo Health Care Group 0.5 ComprehensiveBuchan Bush NursingService

0.1 (as required) Comprehensive

Colac Community HealthServices

< 0.1 as required Comprehensive

Geelong Hospital 0.5 ComprehensiveHeywood Rural Health 0.1 as required ComprehensiveSan Remo and DistrictCommunity Health Centre

< 0.2 (as required) Comprehensive

Latrobe Community Health 0.4 ComprehensiveMallacoota Health andSupport Service


Mt Alexandra HospitalCastlemaine

0.1 Comprehensive

South Western HealthcareWarrnambool

0.2 Reduced

Western District HealthService

0.1 Comprehensive

39


Practice Workload (FTE) TherapyMetropolitanAction Psychology andHealth (Nth Caulfield)

0.25 Comprehensive

East Melbourne Physio andHydrotherapy service


Ferntree Gully < 0.1 (to increase 2003) ComprehensiveSouth Melbourne 0.5 (OT) ComprehensiveSurrey Hills 0.1 (Part time) ComprehensiveThe Bays HospitalMornington

0.1 (17% of patients) Comprehensive

The Physiotherapy Centre(Marsden)


Victorian LymphoedemaPractise, Surrey Hills


RuralGeelong City Physio Clinic < 0.1 (4 pts/month ave) ReducedHealth focus PhysiotherapyWodonga

0.1 Comprehensive

Hume Hand Injuries andPhysiotherapy Albury

< 0.1 Comprehensive

Warrnambool 0.2 (PT) ComprehensiveMansfield 0.1 (RN) Comprehensive

40

WA


Practice… Workload Therapy ProvidedMetropolitanArmadale/KelmscottHospital

0.1 Reduced

Fremantle Hospital 0.2 ReducedKing Edward MemorialHospital

0.5 Comprehensive

Royal Perth Hospital 1.0 ComprehensiveSir Charles Gardiner Hospital 0.5 ComprehensiveRuralAlbany 0.2 ReducedBusselton 0.1 ReducedBunbury 0.4 ComprehensiveGeraldton 0.1 Reduced


Practice… Workload TherapyMetropolitanCottesloe Sports massage 0.5 ReducedFlora Tce Natural Therapies 0.2 ReducedKalamunda MassageTherapy

0.5 Comprehensive

Yooroonga Massage &Health

0.5 Reduced

Saint John of God Murdoch 0.2 ReducedLymphoedema ManagementService (Cancer Foundation)

2.0 Comprehensive

Manual Lymphatic DrainageClinic

1.0 Reduced

Shenton Park Physiotherapy 1.0 ComprehensiveRuralBunbury 0.2 Reduced

41

Appendix 4DATA SHEETS: Garment Provision

42

Garment Provision

Public patients: NSW QLD SA Tas Vic WAWhat is currentpractice?

Practice variesdepending on the areahealth service.Generally, patients aregiven the first two setsof garments free afteran initial treatment.Some hospitals onlygive one. There arealso a number of statehospitals that do notoffer any service orgarments at all

Each hospital has theirown policy onprovision of garments.Ranges from nofinancial support at allto free garments forhealth care cardholders.

Varies at each hospital.Not all hospitalsprovide a service.

Garments providedafter referral from GPor specialist. Pt.assessed and educatedand appropriateprescription given.Garment provision asrequiredRange of garmentsused Jobst, Venosan,Medistrumph mainly.Made to Measure and'off the shelf'.

Generally full fundingthrough the VictorianAids and EquipmentProgram if a publicinpatienthttp://hnb.dhs.vic.gov.au/ds/disabilitysite.nsf/pages/pub_aidsAppendix 6

Outpatients may accessthe MercyLymphoedemaCompression GarmentProgram if they are ona pension or a low-income earner and havebeen medicallyassessed as havingprimary or secondarylymphoedema.Garments are suppliedfrom 4 centres only,Orthotic & prostheticCentre, TherapistSupport Lab Appliance& Limb, and BiometAus. (currently underreview)

Varies at each hospital,but essentiallygarments are providedafter referral,assessment, educationand treatment. Theyare generally not thefirst option, and effortsare being made at mosthospitals to try tomanage patients withself management andless reliance ongarments.A variety of garmentcompanies are used,but most commonlySmith and Nephew.

http://hnb.dhs.vic.vic.gov.au/ds/disabilitysite.nsf/pages/pub_aids



43

Public

Patients

NSW QLD SA Tas Vic WA

Is there a writtenpolicy for thestate?

No No No State-wideLymphoedemaGarment PolicyAppendix 5

http://hnb.dhs.vic.gov.au/ds/disabilitysite.nsf/pages/pub_aidsAppendix 6

No Although, recentlypractitioners have beenworking togethertowards a statewidepolicy.

Who prescribes?Any minimumqualifications

Physiotherapists,OccupationalTherapists andRegistered Nurses. Nominimumqualifications needed,though DVA, will notreimburse clinicianswho are not healthprofessionals (ieMassage therapists)

No formal policy.Tends to be anOccupational orPhysiotherapist

OccupationalTherapists andPhysiotherapists. Nominimumqualifications otherthan stated degree.

Any Physiotherapist orOccupational Therapistcan prescribe butusually referred toexperienced therapist.For patient to beeligible for the garmentscheme the therapistmust have undertaken aLymphoedemamanagement course.Jobst, LAA orequivalent and shouldbe eligible for fullmembership to theALA.

Medical doctors,Physiotherapists,OccupationalTherapists andRegistered Nurses.

No minimumqualifications otherthan stated degree.

Physiotherapists andOccupationalTherapists.No minimumqualifications otherthan stated degree.

Cost toconsumer?

First one or twogarments free(depending on hospital)

Preventative airlinegarments must be paidfor.

Varies from full cost topatient to full subsidyby hospital.

Varies:Patients of RAHreceive 2 garment per 6months at no costs.

DVA clients receivegarments at no cost.

All other public clientsat other hospitals payfull cost.

$50 per prescription forpensioners (to bereviewed) and healthcare card holders

All others pay full cost(public hospital cost).

Inpatient generally nil.

Through MLCGP,patient pays 40% to60% per garment basedon income level andcost of garments andcosts may be waived inextreme instances.

~60% of publichospitals cover the costfor 2 garments peryear.~20% cover aproportion~20% don’t coveranything

http://hnb.dhs.vic.gov.au/ds/disabilitysite.nsf/pages/pub_aids



44

Private Patients NSW QLD SA Tas Vic WAGovtRebate/Discount?

Nil Nil Nil Nil As above CAEP program(Community Aids andEquipment Program).For low income only,the govt will pay formax of 2 per year.

No of garmentseligible in a year?

Through PADP,patients eligible for twogarments each 6/12.Not based on incomebut a deposit of $100,per order, and then waityour turn for approval.( can be 2 to 4 months )

Varies from none to asmany as required.

Only RAH specify, at 2garments per 6 months.

Up to 4 prescriptionsper year. A prescriptionis usually 2 garmentsbut may be more ifdeemed necessary (leftto therapists’discretion).

6 per year Usually 2

What is currentpractice?

There are three privateSydney hospitalsproviding fulltreatments. Two havelive in accommodationfor patient/ inpatientprograms.

Dependent on eachpractitioner.

No informationprovided.

No outpatient treatmentprogram available atprivate hospitalsPatients may beadmitted by consultantfor CPT by visitinglymph privatepractitionerMost patients referredto public system

DVA will provide upto $2000.00 intreatment and garmentcosts per year.Permission must besought from DVA by apractitioner recognisedby LPEG or the ALA,with a providernumber. Qualifiedremote area Nursepractitioners in remoteareas where there areno other qualifiedphysio or OTpractitioner exists mayapply and be granted aprovider number.Workcare and TACwill provide garmentswith written requestsfrom medicalpractitioner, physio orOT.

Very ad hoc. Privatehospitals do not havestandard treatment. Itis referral based fromthe consultant and thenrelies on thepractitioner. Generallypatients are not referredfor management.

45

Private Patients NSW QLD SA Tas Vic WAIs there a writtenpolicy for thestate?

No No No No No No

Who prescribes?Any minimumqualifications

Physiotherapists,OccupationalTherapists andRegistered Nurses. Nominimumqualifications needed,though DVA, will notreimburse clinicianswho are not healthprofessionals (ieMassage therapists)

Occupational andPhysiotherapists. Nominimum requirementsother than stateddegree.

OccupationalTherapists andPhysiotherapists. Nominimum requirementsother than stateddegree.

Any privatepractitioner (OT andPT) may prescribegarments but would notbe eligible for StateGarment Scheme andpatient would have topay full cost

Usually theLymphoedemapractitioner, ie nurse,OT, Physio, or themedical practitioner, orthe orthotist.As above for DVA,TAC, Work Cover butnil required otherwise

Occupational andPhysiotherapists. Nominimum requirementsother than stateddegree.

Cost toconsumer?

Full with healthinsurance rebates asappropriate.

Full cost to consumer –health benefit rebatesvariable.

Full cost Full cost See above in ‘CurrentPractise’

Full cost

GovtRebate/Discount?

Private HealthInsurance






No of garmentseligible in a year?

As per individualPrivate HealthInsurance policies.

As per individualPrivate HealthInsurance policies



DVA—Limit of$2000.00 Per year forall aspects of treatment.Work cover and TAC –PERMISSIONNEEDEDHealth funds – all havevarying limits,depending on level ofmembership.


45

Appendix 5Tasmanian Lymphoedema Garment Scheme

46

LYMPHOEDEMA GARMENT SCHEME

GUIDELINES

September 2000

47

CONTENTS

Page1. BACKGROUND 31.1 Introduction 3

1.2 Scope of the Guidelines 3

1.3 Outcomes 4

1.4 Access and Equity 4

2. ELIGIBILITY 42.1 Eligibility Criteria 4

2.2 Clients not Eligible for Financial Assistance 5

3. ENTITLEMENTS 53.1 Provisions under the Scheme 5

3.2 Private Health Funds 6

4. CLIENT CONTRIBUTION 65. SPECIAL PROVISIONS 66. ADMINISTRATIVE PROCESSES 77. GENERAL ADMINISTRATION 87.1 Complaints 8

7.2 Information to Consumers 9

7.3 Records /Data Collection 9

7.4 Review of Policy and Guidelines 9

48

LYMPHOEDEMA GARMENT SCHEME

GUIDELINES

1. BACKGROUND

1.1 IntroductionThe Lymphoedema Garment Scheme aims to ensure equitable access to compressiongarments for all Tasmanians with lymphoedema who have been assessed by qualifiedtherapists as in need of garments in the treatment of their condition. This is achievedthrough the provision of financial assistance to those with demonstrated need for assistance.

Lymphoedema is an incurable medical condition characterised by swelling of areas of thebody which develops due to a decrease in the ability of the lymphatic system to drain awayfluids and proteins from the tissues. While some people presenting for service requireeducation services only, many require compression garments for the affected limbs thatmay need to be worn 24 hours a day, and are often required for the remainder of their lives.

The Lymphoedema Garment Scheme guidelines are consistent with the StatewideCommunity and Health Equipment Scheme Policy (CHES). This policy provides aframework for a range of aids, appliances and equipment schemes administered by theDepartment of Health and Human Services.

It is intended that this Scheme will be supported through the building and support ofeffective, client-focussed relationships among allied health professionals in both the publicand private sectors.

Financial assistance provided by the Lymphoedema Garment Scheme is funded exclusivelyby the Department of Health and Human Services.

The Scheme is administered by Allied Health Services in each of the three major publichospitals in Tasmania.

1.2 Scope of the Guidelines

The Guidelines outline:

• intended outcomes of the Lymphoedema Garment Scheme;

• eligibility criteria for financial assistance under the scheme;

• provisions under the scheme;

• the process for accessing financial assistance under the scheme;

• administration processes; and

• complaints mechanism.

49

1.3 OutcomesThese guidelines are directed to the achievement of:1. Timely access to financial assistance towards the purchase of lymphoedema

compression garments.2. Current and consistent information for clients statewide to assist them in accessing

appropriate garments.3. Clinicians trained in the management of lymphoedema to assess a client’s condition

and measure, prescribe and fit appropriate compression garments. To be eligible toprescribe garments that will attract a subsidy under this Scheme, the therapist shall:• be a full member or eligible for full membership of the Australasian Lymphology

Association, which includes allied health professionals and nurses (refer attached);and

• have completed a recognised specialist lymphoedema training program1 such asthat provided by Beiersdorf-Jobst or the Lymphoedema Association of Australia;and

• be currently providing health services on a regular basis to people withlymphoedema, in Tasmania.

4. A complaints mechanism for clients who wish to appeal or complain about decisions

or services related to the Scheme.

1.4 Access and EquityTasmanian residents are able to access financial assistance on an equitable basis regardlessof place of residence.

! Equity is managed by providing the best outcome for clients within the constraintsof available resources.

! Financial assistance is offered to those with demonstrated need.

2. ELIGIBILITY2.1 Eligibility CriteriaClients accessing garments will be eligible for financial assistance under the LymphoedemaGarment Scheme if they meet the following criteria:

1. Clients are assessed by a recognised therapist (refer 1.3.3) as requiring compressiongarment/s for the management of their lymphoedema.

2. Clients are ineligible to receive financial assistance with the purchase oflymphoedema compression garments from any other government funded programand have not received compensation in respect of the condition for which thegarment has been prescribed (refer Section 2.2 for further details).

3. Clients are permanent residents of Tasmania (permanency is determined by theclient having resided in Tasmania continuously for more than three months in theperiod prior to applying for assistance through Scheme).

4. Clients hold, or are eligible for, any of the following:

• a Health Care Card

1 Recognised by the Allied Health Services of the major Tasmanian public hospitals

50

• a Pensioner Concession Card

• an Interim Concession Card

Applicants must generally meet all four criteria to be eligible for financial assistance underthe Scheme. However if the applicant can demonstrate genuine financial hardship, yet doesnot meet the third or fourth criterion above, they may qualify for assistance under theSpecial Provisions clause contained in these guidelines (refer Section 5).

Note: Independent of the client’s eligibility, if the recognised therapist fails to abide bythe requirements of the Scheme, as outlined in Section 6, financial assistance to theclient may be at risk.

2.2 Clients not Eligible for Financial Assistance1. Veterans

The Commonwealth Department of Veterans Affairs (DVA) provides War Veterans,spouses and/or dependents who may be eligible for disability pensions, allowances andmedical treatment with aids, home modifications and equipment through theRehabilitation Appliances Program (RAP). Clients eligible for assistance through theRAP are therefore not eligible for assistance through this Scheme.

2. Compensable / MAIB Clients Compensable clients are ineligible for assistance from this Scheme with respect to thedisability for which they have been compensated.

3 ENTITLEMENTS3.1 Provisions under the Scheme In order to ensure effective utilisation of resources, where clients receive financialassistance through the Scheme, the therapist must prescribe the most economical garmentsthat are appropriate.

The procedure for accessing assistance is outlined in Section 3.6, following. Clients who meet the eligibility criteria (as outlined in Section 2.1) will normally beeligible for financial assistance towards the cost of their garments.

Eligible clients are entitled to financial assistance for a maximum of four prescriptions eachfinancial year.

While there is no upper limit to the level of financial assistance provided to an individualclient for the purchase of compression garments, the prescribing therapist may be requiredto justify the frequency and types of garments prescribed. The Department reserves theright to refuse some or all of the financial assistance requested if the Allied Health ServicesManager of the relevant hospital is not convinced of the validity of the claim.

3.2 Private Health Funds Clients with private health insurance, should apply for assistance through theLymphoedema Garment Scheme in the first instance. The client contribution will apply.Depending on the fund and table of cover, clients may be eligible to receive a rebate for aportion of the client contribution and/or a portion of any gap between the assistanceprovided through the scheme and the cost of garments.

51

Clients should contact their insurance fund for further details.

4. CLIENT CONTRIBUTION Client contributions are based on the principle that it is fair and equitable that those clientswho have a capacity to contribute towards the cost of medical equipment, aids andappliances do contribute.

A client contribution of $50.00 per prescription is required. A prescription may cover oneor more individual garment items required by a client, as defined by the recognisedtherapist at the time of clinical assessment. If the client is assessed as needing to wear agarment for 24 hours a day, a second identical garment (i.e. one on and one off forlaundering) may be prescribed.

Should the total cost of a prescription be less than $50.00, the prescription will not besubsidised and the client will be expected to pay the full amount.

Inability to pay the $50.00 contribution will not be used as a basis for refusing service to aclient who has been assessed as requiring assistance (refer to Section 5: special Provisions).

5 SPECIAL PROVISIONS The Special Provisions facility may be accessed in two circumstances:

• a client who does not meet all four eligibility criteria may demonstrate need forfinancial assistance; or

• a client who is unable to afford the $50.00 client contribution per prescription mayapply for exemption or may request to pay by instalments.

In these circumstances the client must provide additional information to support anassessment under the special provisions facility.

Requests for special provisions must be made in writing to the Allied Health ServicesManager of the relevant hospital, utilising the Special Provisions Assessment form,detailing the applicant’s financial situation as well as mitigating circumstances forconsideration. It is the client’s responsibility to disclose the required information. Refer toStep 7 of Section 6: Administrative Procedures for further detail.

The principles of special provisions under the Scheme are that:

1. the circumstances faced by a person are likely to result in that person (and/or theirdependents) being unable to have the basic necessities of life (e.g. food, clothing,shelter) if lymphoedema garments are purchased without financial assistance; and

2. no other person or agency has responsibility to assist the applicant to reduce the levelof hardship.

Should a client request special consideration due to the high expense of garments requiredto treat their condition, assessment will be undertaken on a case-by-case basis with anysubsidy calculated on the income/expenditure statement provided by the client. To helpensure equity in decision-making all financial assessments will be done centrally.

The principles for assessment include:

• fairness to applicants;

• consistency/reliability in decisions; and

• administrative simplicity for both the Department and the applicant.

52

If financial assistance is refused under Special Provisions, applicants are able to use theappeals and complaints mechanism to have their case further considered. (Refer to Section7)

Where discretion is applied to accept or reject a claim for special provisions, reasons forthe decision are to be noted and attached to the Special Provisions Assessment form.Copies of the Special Provisions Assessment forms are then to be kept by the Allied HealthManager of the relevant hospital.

6 ADMINISTRATIVE PROCESSES Note: Following a clinical assessment, the client must return to the same therapist (oranother registered therapist in the same practice) for fitting to ensure that the garmentsmeet the clinical needs of the client. The following steps outline the procedure to assist clients who wish to apply for financialassistance with the purchase of compression garments to be used for treatment oflymphoedema.

1. The prescribing therapist must meet the criteria outlined in Section 1.3.3.

2. The client should normally meet the four eligibility criteria outlined in Section 2.1 ormay apply for consideration under the Special Provisions clause.

3. The prescribing therapist is to provide details of the garment prescription for each clientrequesting financial assistance through the Scheme on a Notification of Intention toSupply form. The back of the form is to be completed by the client. This form is to beforwarded to the Allied Health Services Manager of the hospital closest to the client’splace of residence for review.

4. In some instances, in order to make a decision concerning the eligibility for subsidy, theSpecial Provisions Assessment Officer may request additional information from theprescribing therapist. This may occur particularly in the cases of the small number ofclients who have been clinically assessed by their therapist as requiring non-standard(i.e. custom-made) garments. It is the responsibility of the prescribing therapist to meetsuch a request. Due to the potential high cost of some custom-made garments, inexceptional circumstances, the Allied Health Services Managers reserve the right torequest a second clinical assessment to be undertaken by a Departmental therapist.

5. The client will be informed of the outcome of the request for financial assistance andthe level of subsidy that will be provided (less the required client contribution) normallywithin five working days of receipt of the Notification of Intention to Supply form.Should the level of funding be less than that requested an explanation for the decisionwill be provided. The Department will provide the subsidy on receipt of a copy of theclient’s invoice from the supplier together with a Confirmation of Correct Fitting slipfrom the therapist.

6. The Department can accept no responsibility for the treatment and the supply ofgarments to a client of a private therapist. The private therapist is responsible for themeasurement, prescribing, ordering and fitting of garments. Subsequent to the fitting ofa garment, should it be assessed as unsuitable for the client, costs associated with itspurchase are not the responsibility of the Department. In this instance the client willprobably need to be re-measured for the garment. Once a satisfactory result is obtainedthe invoice and the Confirmation of Correct Fitting slip should be forwarded to theDepartment. If more than one invoice relates to a single prescription the clientcontribution remains at $50 per prescription providing the prescription is finalisedwithin a month of the client’s assessment. This may occur when a prescription is only

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partly filled due to unsatisfactory fitting of one or more items that need to be re-ordered.

7. A further instance in which additional information will be requested is for clients whoapplies for consideration under the Special Provisions clause. In this instance, the clientwill be asked to complete Special Provisions Assessment form as described in Section5, above. Clients may be contacted by a member of the Department by telephone ifadditional detail is needed. Clients will normally be informed of the outcome of aSpecial Provisions assessment within five days of receipt of the application form by theDepartment.

8. Clients receiving clinical services within the public sector will have their garmentsordered, fitted and supplied directly by a recognised therapist. The client contributionwill not be required until the therapist is satisfied with the fit of the garments provided.

7 GENERAL ADMINISTRATION7.1 Complaints mechanism All clients have the right to appeal if they disagree with any decision made in relation to theLymphoedema Garment Scheme. The appeals process in relation to eligibility for financial assistance shall be:

Client " Allied Health Services Manager of relevant hospital " CEO "Director,Hospitals and Ambulance Division " Minister

and/or

Client" Health Complaints Commission.

All appeals in relation to clients obtaining financial assistance should be reported directly tothe Allied Health Services Manager of the relevant hospital.

Complaints are managed according to the Hospitals and Ambulance Service ComplaintsPolicy. All formal complaints received in writing should be acknowledged in writing by theaddressee within 5 working days.

7.2 Information to Consumers An information brochure will be available from the Department for any person who wishesto obtain information about the Lymphoedema Garment Scheme. Brochures will beavailable from Breast Cancer Support Services and volunteers, Community Health Centres,surgeons, hospital wards and general practitioners.

This information will be reviewed annually by the Review Committee to ensureinformation remains consistent and current throughout the state.

7.3 Records / Data Collection As part of their responsibilities to the client, should a client wish to access financialassistance through the Scheme, the specialist therapist who measures and prescribes thegarments should undertake to complete the following forms and provide additionalinformation as requested by the Allied Health Managers or delegates:

• Notification of Intention to Supply form

• Confirmation of Correct Fitting form

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This information will assist in monitoring and evaluating the scheme, including demandand expenditure. (Minimum data set to be determined as a result of further work on thedevelopment of clinical guidelines and protocols.)

7.4 Review of Policy and Guidelines The Review Committee will be made up of the following stakeholders:• Allied Health Managers from each of the three major public hospitals• Representatives of Departmental allied health specialist clinicians• Representative, Divisional Support Unit, Hospitals and Ambulance Service• Representative, Cancer Council of Tasmania• Consumer/consumer advocate representatives The membership and representation of this committee will be reviewed annually.

The role of the Review Committee will be to review annually:• policy and guidelines, including eligibility criteria, client contributions and

provisions under the scheme• information brochure• quality improvement activities• complaints and other feedback.

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Appendix 6Victorian Lymphoedema Compression Garment Program

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Victorian Lymphoedema Compression Garment Program

The Compression Garment Program is funded by the Victorian Department of HumanServices and administered by the Lymphoedema Clinic at the Mercy Hospital for Women.The program has been operating since 1997 for people who are diagnosed withlymphoedema. It endeavours to provide financial assistance for the purchase ofcompression garments to people who are pension holders or low income earners. Thefinancial assistance given pays part of the cost of the garment. The remaining cost is metby the person.

Who is eligible?

A person must be a permanent resident of Victoria who is currently receiving a pension or alow income earner who has been medically assessed as having primary of secondarylymphoedema. People are ineligible- if they reside in a Commonwealth Funded Aged Care Service- if they are receiving any assistance from other sources such as TAC or Workcare.- If they are eligible for super extras from a private health insurance fund.

How do I apply for this assistance?

Application forms are available from the Compression Garment Program at the MercyHospital for Women, from your Lymphoedema Therapist or on the web site. www.compression-programvic.orgThe application form needs to be completed by the medical practitioner who diagnoseslymphoedema and the lymphoedema therapist providing your treatment.Lymphoedema Therapists must be eligible for membership of the Victorian PractitionersGroup.The application form includes a Declaration of Income which needs to be completed with awillingness to supply any further financial information if necessary.

The completed form is sent to : Lymphoedema Compression Garment Program Level 7 Mercy Hospital for Women Clarendon St East Melbourne, 3002

or Fax on (03)9270 2256

If you have any difficulties completing the form, or further questions please do not hesitateto ring the program on (03) 9270 2754

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How is the assessment made?

The financial assessment is made on the basis of your income and the cost of the garmentsthat have been recommended for you. Consideration will be given to extenuatingcircumstances. Applications are processed within two weeks. Both you and yourlymphoedema therapist will be notified of the result of the assessment.

If you do not agree with the result of your assessment and would like to appeal, pleasecontact the Co-ordinator of the Lymphoedema Compression Garment Program on (03)9270 2754.

Ordering Garments

Your therapist will discuss with you the most appropriate garment for your needs. Areferral is made to the supplier (approved by the Program). In most cases the supplier willrequire the patient’s contribution when the garment is ordered. The Program will beinvoiced to pay the remainder of the cost.

Your therapist will advise you when you need to replace your garment. You may need tocheck with the therapist when you consider that replacement garments are needed. Whenfurther garments need to be ordered a clinical assessment will be required and yourtherapist will need to advise the Lymphoedema Compression Garment Program.You will need to complete a financial assistance form every 12 months to remain in theprogram.