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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
ACT Lymphoedema Services Plan
Background Paper and
Implementation
2015 – 2018
March 2015
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
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Modifications
Initial draft for SC meeting 2
Incorporate Steering Committee Comments as
outlined in SC meeting 2 Minutes
Incorporate out of session Steering Committee
Incorporate comments and structure adjustments
from HSPU Senior Manager
Incorporate comments from EC
Consultation draft – including DG and CM
adjustments
Comments from public consultation
GP Advisor
HCCA
Private practitioner
Consumers
ED WP&P
Comments from Steering Committee Meeting
Comments from Steering Committee out of session
Endorsed Final by ACT Health Executive Council
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table of Contents
Steering Committee Stakeholder list...................................................................... 5
Executive Summary ............................................................................................... 6
1.
What is lymphoedema? ................................................................................. 8
1.1 What are the different stages of lymphoedema....................................................... 8
1.2 What are the main principles to lymphoedema management .................................. 9
2.
Current Context ............................................................................................. 9
2.1 The prevalence of lymphoedema .......................................................................... 10
2.2 Local and National policy in context ...................................................................... 11
2.3 ACT lymphoedema services in 2012 ...................................................................... 12
2.4 Barriers and opportunities .................................................................................... 13
3.
Current lymphoedema service provision........................................................ 14
3.1 Primary Prevention .............................................................................................. 17
3.2 Early Detection and Secondary Prevention ............................................................ 17
3.3 Inpatient Services ................................................................................................. 18
3.4 End of life care ..................................................................................................... 18
3.5 Access and Equity ................................................................................................. 18
4.
Purpose and scope of the Plan ...................................................................... 19
5.
Development of the Plan .............................................................................. 20
6.
Trends and projections - Demand for Lymphoedema Services ........................ 21
6.1 Current activity .................................................................................................... 21
6.1 Projected activity ................................................................................................. 29
6.2 Benchmarking ...................................................................................................... 31
6.3 Recommended Focus areas:.................................................................................. 33
7.
Objectives for the future provision of lymphoedema services ........................ 36
7.1 Primary Prevention .............................................................................................. 36
7.2 Early Detection and Secondary Prevention ............................................................ 36
7.3 Lymphoedema Services ........................................................................................ 37
7.4 Research and Education ........................................................................................ 38
7.5 Access and Equity ................................................................................................. 38
8.
Proposed framework for lymphoedema services ........................................... 39
8.1 The Hub ............................................................................................................... 41
8.2 Inpatient services ................................................................................................. 41
8.3 Secondary/Outreach services ............................................................................... 41
8.4 Lymphoedema Services Network .......................................................................... 42
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
8.5 Private Practice .................................................................................................... 42
8.6 General Practice ................................................................................................... 42
8.7 Prevention and Health Promotion......................................................................... 42
8.8 Governance .......................................................................................................... 43
8.9 Patient Pathway ................................................................................................... 43
8.10 Workforce .......................................................................................................... 45
8.11 Resources ........................................................................................................... 45
8.12 Infrastructure ..................................................................................................... 46
8.13 Technology ......................................................................................................... 46
8.14 Research and Data collection .............................................................................. 46
9.
Implementation ............................................................................................ 48
Infrastructure Strategies ............................................................................................ 48
Primary Prevention .................................................................................................... 49
Early Detection and Secondary Prevention ................................................................. 50
Lymphoedema Services .............................................................................................. 51
Research and Education ............................................................................................. 53
10.
Evaluation ................................................................................................ 55
Abbreviations and Glossary of Terms ................................................................... 56
References / Bibliography .................................................................................... 58
APPENDICES.......................................................................................................... 1
Appendix 1: Principles behind the Lymphoedema Services Background Paper and
Implementation Plan ................................................................................................... 1
Appendix 2: Lymphoedema Workforce Plan ................................................................. 1
Appendix 3: Proposed ACT Lymphoedema Services Network representation ................. 1
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Steering Committee Stakeholder list

Deputy Director General, Strategy and Corporate (S&C), ACT Health

Deputy Director General, Health Infrastructure and Planning (HIP), ACT
Health

Senior Manager, Health Services Planning Unit, HIP, ACT Health

Manager, Health Services Planning Unit, HIP, ACT Health

Executive Director, Workforce Policy and Planning, S&C, ACT Health

Executive Director, Cancer, Ambulatory and Community Health Support, ACT
Health

Director Allied Health and Ambulatory Care, Calvary Health Care Bruce

Director Physiotherapy, Calvary Health Care Bruce

Nursing Manager, Southern Area Health, NSW

Chief Allied Health Officer, Canberra Hospital and Health Services (CH&HS),
ACT Health

Physiotherapist and President Australasian Lymphology Association – clinical
nominee, Physiotherapy

Director Community Care Program, CH&HS, ACT Health

Health Care Consumers Association representative

ACT Medicare Local representatives

Vascular Surgeon - clinical nominee, Medical

A/g Director Acute Support, CH&HS, ACT Health

A/g Director Physiotherapy, CH&HS, ACT Health

Director Chronic Disease Management, CH&HS, ACT Health

Services Planners Health Services Planning Unit, HIP, ACT Health
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Executive Summary
The Health Services Planning Unit (HSPU) was tasked with the development of a
Services Plan for the management of people in the Australian Capital Territory (ACT)
region with or who are deemed to be at risk of developing lymphoedema. This
Background Paper and Implementation Plan will commence following endorsement
towards the beginning of 2015 and will provide strategic direction to 2018 and longer
term vision. This plan has been developed to provide direction to address current
issues. There will not be a need to repeat this planning process after the expiration
of the plan.
The objective of the ACT Background Paper and Implementation Plan 2015-2018 is
to articulate a strategic model to ensure available resources are deployed in an
efficient manner to meet increasing demand of clinical services in the ACT region.
Henceforth the document will be referred to as ‘the Plan’.
Core to the Plan are the following principles, drawn from ACT Health’s Ambulatory
Care Framework and International Lymphoedema Framework (ILF) Template for
management document – Developing a lymphoedema service. Services will be:
 Patient centred.
 Multidisciplinary and collaborative.
 Accessible and Equitable.
 Safe and high quality; have a
 Population health approach; and include focus on
 Research and Education
Key health factors identified in the Plan include:
 The number of people in the ACT with lymphoedema is predicted to
significantly increase in the future.
 Obesity increases the risk of developing lymphoedema
 Whilst there is no cure for lymphoedema, the disease is treatable and
progression can be controlled.
 Lymphoedema in its early stages is often symptom free and difficult to
diagnose
Key directions for ACT lymphoedema services to improve access and outcomes for
patient and their families over the next four years:
 Provision of services based in the community to improve equity and
ease of access for specialist lymphoedema services
 Improve knowledge of lymphoedema and its management in the wider
health system and the community to enable earlier diagnosis and
management of lymphoedema symptoms
 Develop strategies in collaboration with the primary care sector to
increase the capacity of GPs to identify patients at risk and provide
prevention education.
 The establishment of an ACT Lymphoedema Services Network to:
o Develop targeted health promotion/awareness strategies for
high risk group and culturally and linguistically diverse
communities (CALD).
o Increase community awareness of lymphoedema risk factors
o Provide support for strategies to address information, training
and ongoing support for General Practitioners (GPs) and Allied
Health Professionals (AHPs) on lymphoedema.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
o Create a care coordination framework for lymphoedema
services in the ACT and work collaboratively with
HealthPathways to achieve improved care co-ordination and
referral processes
o Establish effective/optimal communication channels with
services based in Southern New South Wales Local Health
District (SNSWLHD), and Murrumbidgee Local Health District
(MLHD)
The clinical overlap between lymphoedema and other chronic diseases means that
all programs developed for lymphoedema should be established and delivered in a
collaborative fashion with other chronic disease programs.
The ACT Health Chronic Diseases Strategy 2013-2018 has been developed to
provide the overarching framework for the provision of appropriate programs and
supports to address the increasing prevalence of people at risk of, or living with,
chronic disease in our community. The Strategy highlights opportunities for improved
programs related to lymphoedema services.
The ACT Lymphoedema Background Paper and Implementation Plan 2015-2018
provides an opportunity to plan for integrated services that will best meet the needs
of people with, or at risk of, lymphoedema who also have other chronic conditions. A
focus will be placed on ensuring that services are patient centred and respect the
needs and choices of consumers.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
1.
What is lymphoedema?
Lymphoedema is the accumulation of excessive amounts of protein-rich fluid
resulting in the swelling of one or more regions of the body. It commonly presents in
the limbs however swelling may also affect other areas, for example, the head and
neck, breast or genitalia. This is due to a mechanical failure of the lymphatic system
and occurs when the demand for lymphatic drainage exceeds the capacity of the
lymphatic circulation.
The lymphatic system is a network of vessels and nodes throughout the body that
transports fluid (lymph) from the body tissues back to the bloodstream. The functions
of the lymphatic system are to maintain the volume and composition of the
extracellular fluid in the body and to assist the immune system in destroying bacteria
and removing waste products from the tissues. Lymphoedema is often categorised
by cause and hence divided into two categories:
Primary - Arising due to issues with the formation of lymphatic vessels or nodes
through the body’s development process; or
Secondary - Secondary lymphoedema is the most common type of the condition,
developing following damage to the lymphatic system. The damage may occur as a
result of some cancer treatments including the removal of lymph nodes, following
radiotherapy to lymph node groups or with the progression of malignant disease. The
onset of lymphoedema may be at any time. It may occur within months of the
damage or it may appear years later. Secondary lymphoedema may also arise
without a cancer diagnosis due to conditions such as, but not limited to; Obesity,
tissue trauma, immobility or infection such as lymphatic filariasis. Lymphatic filariasis
is a mosquito born, tropical, parasitic infection uncommon in Australia. The disease
tends to occur in migrants from endemic countries. Multiple mosquito bites are
needed to develop the condition so it tends not to occur in tourists to those areas.
The ILF developed a best practice document1 which brings together research and
consensus on the characteristics and treatment modalities of lymphoedema. This
document highlights that lymphoedema may produce significant physical and
psychological morbidity and that increased limb size can interfere with mobility and
affect body image. Pain and discomfort are frequent symptoms, and increased
susceptibility to acute skin infection can result in frequent hospitalisation and long
term dependency on antibiotics. Lymphoedema is a chronic condition which, at this
time, does not have a cure. With appropriate management symptoms can be
reduced, however if ignored, the symptoms can progress and become difficult to
manage.
1.1 What are the different stages of lymphoedema
Lymphoedema is considered to develop in stages, from mild to severe. Methods of
staging are numerous and inconsistent and range from three to as many as eight
stages. The Australian Lymphology Association (ALA) report that ‘In Australasia, the
most commonly used stage scale is that adopted by The International Society of
Lymphology (ISL) , which identifies the following stages’2-3:
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Stage 0 A latent or subclinical state where swelling is not evident despite impaired
lymph transport.
Stage I This represents early onset of the condition where there is an accumulation
of tissue fluid with higher protein content, which subsides with limb elevation. The
oedema may be pitting at this stage.
Stage II Limb elevation alone rarely reduces swelling and pitting is manifest. In later
Stage II the limb may or may not pit as fat and fibrosis supervenes.
Stage III The tissue is hard (fibrotic) and pitting is absent. Skin changes such as
thickening, hyperpigmentation, increased skin folds, fat deposits and warty
overgrowth develop. Stage III encompasses lymphostatic elephantiasis. At this stage,
the swelling is spontaneously irreversible and usually the limb(s) is very large.
Although these stages are reported to be the most commonly used research,
treatment, data collection and service level planning has not provided any focus on
these stages.
1.2 What are the main principles to lymphoedema
management
Evidence based early interventions require a comprehensive and holistic approach
which is targeted towards the site, stage, severity and complexity of the
lymphoedema. The ILF best practice management document outlines holistic
inclusions for management of lymphoedema1. Comprehensive treatment is likely to
include many or all of the following1, 4:
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Education — verbal and written information about lymphoedema and its
management including risk reduction techniques.
Skin care — a skin care regimen involving meticulous hygiene, regular
moisturising, protection of skin and early identification and management of
skin infections
Exercise — specific exercises designed to enhance the efficiency of the
muscle pump and increase lymph circulation
Compression - specialist bandaging techniques and/or compression
garments
Manual lymphatic drainage (MLD)—use of specific massage techniques
which mobilise the skin and stimulate the lymphatic system
Self lymphatic drainage—self-administered version of MLD
Pain and psychosocial management.
2. Current Context
The population of ACT in 2012 was estimated to be 374,912 and the total catchment
population including the referral base from the Greater Southern Region of NSW
(now Southern NSW Local Health District and Murrumbidgee Local Health District)
was 617,071 at June 20125. The prevalence of lymphoedema in the ACT region is
not documented, however, the literature examined below demonstrates the growing
risks associated with lymphoedema locally. These risks have been growing over
time resulting in pressure on existing lymphoedema services and as these risks
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
continue to grow so will the pressure on lymphoedema services in ACT and the
surrounding region.
2.1 The prevalence of lymphoedema
The prevalence of lymphoedema is difficult to quantify due to a lack of a minimum
data set locally, nationally and internationally6. Additionally the overall international
prevalence of lymphoedema is inflated by lymphatic filariasis infection7 which can
cause difficulty when comparing some statistical results. References cited by the
International Lymphoedema Framework (ILF) outline that the overall prevalence of
lymphoedema/chronic oedema has been estimated at 0.13-2.0% of the population1.
These percentages equate to 802 - 12,341 people when extrapolating from the total
catchment population of the ACT region.
Primary lymphoedema
There is a lack of recent research quantifying the prevalence of primary
lymphoedema, however it is estimated that lymphatic malformation will occur at or
after birth in about one person in 6000 resulting in primary lymphoedema2. This is
the equivalent of 0.0167% of the population or 103 people in the ACT region.
Secondary lymphoedema - Cancer
Across the literature, the main cause of lymphoedema in Western culture is
considered to be treatment for cancer4,8,9. Literature collated by the ILF in 2006 found
that 12-60% of breast cancer patients would experience lymphoedema1. A more
recent systematic review has estimated the rate of incidence to be 21.4% following
breast cancer and across the literature a rate of 20% is generally accepted10,11-13.
The ILF also reported literature indicating lymphoedema rates of 28-47% in patients
treated for gynaecological cancer.
The Australian Institute of Health and Welfare recently published cancer incidence
projections14. It has indicated that in the ACT new cases of cancer are expected to
undergo an annual increase of 4.4% per year from 2009 to 2024. A report in 2011
from ACT Health discussed the cancer incidence and mortality12. The four most
common forms of cancer were reported to be prostate cancer (18%), breast cancer
(15%), colorectal cancer (13%) and melanoma of the skin (10%). These four
cancers are more highly correlated with incidence of lymphoedema due to the
potential for impact on the lymph nodes through the surgical and radiation treatment
process. This report also highlighted that there was a higher risk of developing
cancer at an older age, outlining that 67% of new cases in males and 54% of new
cases in females were found in people aged 60 years and over. Additionally it
reported an average decrease in cancer related mortality of 1.4% for males and 1.2%
for females per year over the period from 1985-2008. These statistics are relevant to
lymphoedema in the ACT as the over 65 population in the ACT is projected to
increase as a proportion from 11.2% to 21.9% to 2056 which is likely to be
accompanied by an increased prevalence of lymphoedema5.
Secondary lymphoedema - Obesity
Research as early as 1957 suggested a relationship between obesity and
lymphoedema15. More recently it has been found that there is a greater risk of a
patient developing lymphoedema with increasing body weight16-17. In fact, it has
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
been shown that persons with a Body Mass Index (BMI) of greater than 30 had three
times the risk of developing lymphoedema following breast cancer surgery compared
to those with a BMI of less than 2518. Furthermore, lymphoedema incidence of up to
74% has been reported for morbidly obese patients (BMI ≥ 40)19.
A report from the Organisation for Economic Co-operation and Development (OECD)
projected the rates obesity and overweight would increase to around 66% of the adult
population by 201920. In 2011/12, of all Australian adults 63% were overweight or
obese with 25% of these being obese21.
Cellulitis
Cellulitis is both a risk for and a risk of lymphoedema41-43. Research published in
2008 found that Lymphatic abnormalities represent an important but unrecognised
problem in patients with leg cellulitis41. Of the patients selected for the study, which
excluded those with prior history of lymphoedema, 43 percent of the patients were
found to have lymph abnormalities. It is proposed in this study that all patients
admitted to hospital with cellulitis should be assessed for the presence of
lymphoedema. Another study found that 18 percent of patients admitted with
erysipelas (cellulitis) had a history of lymphoedema42. Research assessing oedema
as a risk factor for multiple episodes of cellulitis highlights the cyclical nature of the
two conditions whereby cellulitis results in oedema and oedema results in cellulitis43.
Thus, prophylactic measures need to target both the cellulitis and the oedema.
2.2 Local and National policy in context
Obesity and cancer are having an increasing affect on the Australian population.
These issues are recognised and are being targeted in local and national policy. The
ACT Government has implemented a whole of government approach to obesity,
Towards Zero Growth- Healthy Weight Action Plan to endeavour to reduce the trend
of increasing obesity22. The Obesity Management Service has been implemented by
ACT Health to provide assistance to morbidly obese individuals. The 2014/15 budget
statements outlined cancer initiatives which allocated an additional $20M in funding
towards a research partnership with the Australian National University and just over
$1.85M in funding towards expanding lymphoedema services to a planning horizon
of 2018. Further health initiatives have been exercised through the Health
Infrastructure Program which has seen the development of the new Canberra Region
Cancer Centre and the Belconnen Health Centre. Further planning and
developments are also underway.
The Health Infrastructure Program has been and continues to work towards the
relocation of some ambulatory outpatient from hospital sites to the community.
These actions and initiatives have come at a time when local and national
governments are facing significant economic challenges23. Australia is faced with a
growing and ageing population along with improving health technologies with
increasing costs and increased life expectancy24. As a result it is imperative that
health services are structured to enable service provision in an efficient and
sustainable manner.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Service development also needs to consider the implications of national and local
policy. Among others, the policies that were considered in the development of this
document include:

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National Chronic Disease Strategy
Access Health, the ACT Government’s strategic direction for health care
delivery
ACT Health Corporate Plan
ACT Health Ambulatory Care Framework
ACT Health Primary Health Care Strategy
ACT Chronic Disease Strategy (2013-2018)
ACT Cancer Services Plan (under development)
ACT Clinical Services Plan
National Health and Hospital’s Network Agreement (2010)
National Health and Hospitals Network report
Primary Health Care Reform in Australia – Report to support Australia’s First
National Primary Health Care Strategy (2009)
Closing the Gap – Prime Minister’s Report (2014)
Population Health Division Strategic Framework (2013-2015)
The Cancer Services Plan and the Chronic Disease Strategy establish frameworks
for health services to work collaboratively, particularly in the areas of cancer/post
cancer treatment and primary and secondary disease prevention. An increasing
proportion of patients with lymphoedema, or at risk of developing lymphoedema, also
have other chronic diseases. A recent study assessing the impact of cancer related
lymphoedema showed that these patients displayed an array of co-morbidities
including diabetes, arthritis, cardiac/pulmonary disorder, hypertension and
depression among others25. This plan provides an opportunity to consider integrated
services that will best meet the needs of people with, or at risk of, lymphoedema who
also have other chronic conditions.
2.3 ACT lymphoedema services in 2012
In 2011/12 an ACT-wide lymphoedema service review was commissioned by
Calvary Health Care Bruce (CHCACT), now Calvary Health Care Bruce (CHCB),
and was performed by a group from a range of service providers26. The review
aimed to map existing services and their gaps, benchmark services against
interstate facilities and generate a report to inform and provide recommendations to
executive staff of CHCB and ACT (ACTH).
The review indicated that the current services across the ACT and surrounding
region were unsustainable at current staffing levels. Considerations underpinning
this outlook included the growing number of patients with lymphoedema generally;
the increase in incidence of health conditions associated with the risk of developing
lymphoedema such as cancer and obesity and the growing waiting list for people
accessing services at Calvary Hospital which is currently the main public health
treatment location for lymphoedema. Local and national policy regarding the
management of chronic disease was also considered when assessing the
sustainability and objectives of lymphoedema services.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Issues were outlined for both CHCB and ACTH generally, including; space
restrictions, the requirement for staff to undertake specialist training, workforce
issues and succession planning as well as a lack of formal linkages between
lymphoedema service providers in the region. The absence or inadequacy of
inpatient service provision was also highlighted as an issue.
A lymphoedema focus group was formed by community members after learning
about the review and a survey was performed in 2012 at a lymphoedema forum.
The survey provided opportunity for individuals to comment on current services,
where they are provided and how they could be improved. Responses included
suggestions for:
 More public awareness including information for GPs and AHPs
 Increased staffing
 Reduced wait times
 Access to exercise and nutrition services
 Southside treatment options
 More education for patients and for other health care professionals
2.4 Barriers and opportunities
A scan for literature on best practice lymphoedema models of care and service
delivery has identified some common themes of services, some of which are outlined
by a report from the University of Glasgow49. Services have often been provided
without specific funding for lymphoedema and a broader understanding of
lymphoedema among other professionals has been lacking. There is a common
theme, particularly in European countries, of a shift towards a central specialist hub
supported by practitioners with less expertise in other locations48-50. This concept
has been shown to have been effective in a Copenhagen wound healing centre,
particularly emphasising the multidisciplinary approach52.
Nationally and internationally lymphoedema appears to be an under recognised and
undertreated condition7, 27. A comprehensive review of the practices for the
management of lymphoedema in Australia was performed in 2004 which identified
issues for lymphoedema services at the time28. These issues are still evident in
current lymphoedema services. Identified barriers to greater uptake of early
detection, secondary preventive and treatment activities in primary health care
including GPs and AHPs are:
 Lack of awareness of lymphoedema and its management by health
professionals and the community.
 The adequacy of the GP Management Plan (GPMP) and Team Care
Arrangement (TCA) (formerly Chronic Disease Management Plan) in the
Medical Benefits Schedule to cover the cost of annual health checks.
 Lack of culturally specific materials/strategies to reach disadvantaged
groups.
 Lack of lymphoedema specific prevention/management education
opportunities for health professionals.
 Lack of focus on wellness/self management support.
 High cost of assessment and treatment equipment
It has been shown that it takes significantly longer for diagnosis of primary
lymphoedema when compared to secondary lymphoedema29, 30. The same studies
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
also showed a difference from first signs of symptoms to receiving a diagnosis when
comparing breast-cancer related lymphoedema with those whose secondary
lymphoedema resulted from other causes, the latter tending to take longer to
diagnose.
At present there are limited opportunities for GPs and AHPs to undertake
lymphoedema education and there is reported to be limited coverage of
lymphoedema in many current training curricula. An opportunity exists to advocate
for the inclusion of lymphoedema early detection and management principles into
core curriculum for health professionals.
A strategic planning document produced by the National Health Service in Wales
discussed the service pressures and overarching strategies for services in Wales44.
It provided reference to a benchmark for lymphoedema service provision which
indicated that
the optimum number of lymphoedema patients per therapist in treating all
categories of lymphoedema including prevention, education and awareness
should be 150
The rationale in proposing this ratio took into consideration the chronic and severe
nature of lymphoedema and the need to ensure that therapists maintain their
expertise by seeing a high volume of patients. Although no other benchmarks were
found for optimal staff to patient ratios, this benchmark may be useful in assessing
the pressures in ACT lymphoedema services.
New and recent technologies emerging in health are enabling more efficient
management and screening of various conditions. Bioimpedence spectroscopy (BIS)
and opto electronic perometry (OEP) have been discussed in the literature as being
effective tools for screening and ongoing objective measurement of lymphoedema4547
. BIS is used to measure the extracellular fluid resistance of a limb or body region
and can be used to compare fluid changes over time or between limbs as well as
fluid presence compared to an accepted normal range. OEP is an efficient, accurate
and reproducible way of measuring body segment volume and comparing this
segment volume over time. Historically segment volume has been assessed through
manually measuring limb segments with a tape measure or submersing the limb in a
bucket of water. New medical technologies are continually emerging and although
not all will be appropriate or effective it is necessary to be aware of these
technologies and to assess their clinical relevance and potential benefit.
Implementation of any new technologies should be focussed on improving patient
outcomes
3. Current lymphoedema service provision
Current lymphoedema services across the ACT region are small and links between
the available services have been reported to be infrequent and difficult to maintain
due to service pressures and limited staffing. The treatment of lymphoedema
requires specialised experience and training and, as a result, the services available
to people with lymphoedema are reliant on maintaining staff with appropriate
expertise. The current dispersal of staff means that supervision and succession
planning are difficult to ensure. Additionally, governance structures make
collaboration across services difficult to achieve, for example supervision of clinicians
in New South Wales (NSW) by ACT clinicians or Calvary clinicians by ACT Health
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
clinicians and vice versa. Ease of access is also important for any health service and
hence the location of services is an aspect which will need to be considered in this
plan.
Currently in the ACT the access to treatment is mainly via referral from breast care
nurse, GPs and Medical specialists. These referrals are to the hospital-based or
private lymphoedema therapists who manage care with input from medical specialist
as required. AHPs also refer patients with both cancer related and other oedemas.
In the ACT the waiting times to see the lymphoedema clinicians have been reported
to be long. Patients whose lymphoedema is not managed in a timely manner can be
at risk of development of more complex symptoms which are more difficult to
manage and may increase the risk of hospitalisation.
Patients with primary lymphoedema are often latest to be diagnosed relative to time
from onset of symptoms. Patients can be referred to the lymphoedema specialist
clinic to have their diagnosis checked and confirmed. Assessment includes
observing the presence of swelling, the collection of relevant medical history and may
include the use of ultrasound or lymphoscintigraphy to rule out other causes of
swelling. Once diagnosed the patient is managed in their ACT or regional location
(see table 1) by a lymphoedema trained health professional.
In Australia there is no legislated requirement for a minimum level of training to
provide services for persons living with lymphoedema however the ALA, Australia’s
peak body for lymphoedema practitioners, does require a minimum level of training to
join the National Lymphoedema Practitioner Register. The ALA accredit two levels of
training to cater for the management of non-complex and complex
oedema/lymphoedema.
Calvary Hospital currently offers a monthly specialist multidisciplinary clinic which is
attended by a medical specialist and a physiotherapist, other specialties are invited
however generally not able to attend. The public lymphoedema clinicians in
Canberra operate primarily out of Calvary Hospital, clinicians also operate out of
Canberra Hospital and Clare Holland House (see Table 1). The only public
lymphoedema service offered in south Canberra is located at Canberra Hospital.
There are limited public lymphoedema clinicians in the surrounding regions.
Murrumbidgee Local Health District (MLHD) has a dedicated lymphoedema service
located in Albury which services much of the MLHD region. Wagga Wagga and
Young also have services providing public physiotherapist lymphoedema
management. Southern NSW Local Health District (SNSWLHD) have public
lymphoedema services at Queanbeyan Hospital, Bega and Eurobodalla.
Public services provided in the ACT are inconsistent due to a lack of formal
connection between the publicly provided services and disparity in the costs of
services to the patients. Patients treated in Calvary Hospital are required to pay for
consumables such as bandaging and BIS electrodes. This is in contrast to those at
Canberra Hospital where bandages are free. Patients are required to pay for
compression garments privately or access funding assistance through the ACT
Equipment Scheme if eligible. Public services into the future should be brought in
line so that treatment and cost is consistent regardless of the location of the
treatment provision.
15
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 1 – Public lymphoedema services in ACT
Location
Services provided
Number of staff funded
for lymphoedema (FTE)
Calvary Hospital
Monthly multidisciplinary clinic
Monthly education sessions
Outpatient lymphoedema physiotherapy
(Monday-Friday)
Clare Holland
Physiotherapy for admitted patients and
House
Home Based Palliative Care Services
1.75 Physiotherapists
0.2 Physiotherapist
2013-14
Canberra Hospital
Outpatient lymphoedema service,
occasional inpatient support
0.4 Physiotherapist
0.1 Occupational Therapist
2014-15
0.5 Physiotherapist
Private sector services play an important role in providing care and education to
patients with or at risk of lymphoedema. People with lymphoedema can access a
range of services including but not limited to physiotherapy, occupational therapy,
massage therapy, exercise physiologists, dieticians, psychologists and personal
trainers. Patients requiring lymphoedema specific management can access a range
of private practices in Canberra, the Eurobodalla, Bega, Wagga Wagga and Young.
Education providers such as Canberra Institute of Technology, the University of
Canberra and Australian National University help to increase the knowledge base of
students as well as other professionals and the community. They also play a part in
providing services to clients such as exercise programmes and massage therapy.
GPs provide fundamental health care support to individuals and families and are
usually the first point of contact with the health care system, offering health promotion
and prevention services, consumer and carer focus and diagnosis and management
of health issues.
The role of GPs in the management of people with or at risk of lymphoedema
includes assessment and, if possible, diagnosis and subsequent education,
management or referral to lymphoedema trained clinicians. Education is an
important part of the role of GPs to ensure that patients have the information that
they need to reduce the risks and effects of lymphoedema. Additionally the coordination of multi-disciplinary care may be achieved through the provision of the
GPMP/TCA to enable the potential for Medicare funding support. This may enable
patients to have more choice in where they receive services as it enables subsidised
access to private lymphoedema health professionals.
Currently it is reported that the role of GPs in the overall management of
lymphoedema is underutilised. This may be because of a lack of time or lack of
relevant information or knowledge of the condition and its management. Increased
capacity of GPs to provide early prevention, detection and management of
lymphoedema may improve the outcomes for patients by making services more
16
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
accessible, increasing early education and awareness and reducing overall service
pressures on specialist services.
There is a need for increased provision of information and support, as well as access
to services in relation to wellbeing and fitness and nutrition for people with
lymphoedema.
3.1 Primary Prevention
No evidence was found in the literature regarding preventative measures for primary
lymphoedema. Evidence does, however, exist regarding the use of specific surgical
techniques, where possible, to reduce the risk of developing secondary
lymphoedema. Sentinel lymph node biopsy has been shown to reduce the risk of
subsequent lymphoedema when compared to axillary lymph node dissection in
breast cancer patients31, 32. Although it is possible that similar methods may help to
reduce the risk of lymphoedema in other forms of cancer, no recent publications were
found to demonstrate this theory. Promotion of further research into the surgical
treatment of cancer may help to reduce the risk of lymphoedema as a method of
primary prevention.
Locally and nationally there has been government initiative towards the primary
prevention of overweight and obesity. The ACT Government has committed to
reducing the increase of overweight and obesity in the ACT through the Towards
Zero Growth Health Action Plan22. This initiative and commitment will help the
population generally by promoting healthy eating and healthy lifestyles, and more
specifically to this Plan, help to reduce the risks of patients developing
lymphoedema.
Patients who are referred to the lymphoedema service following cancer treatment are
given education regarding lymphoedema which includes skin care and avoidance
activities regarding the at-risk limb. Increased capacity for GPs to provide education
on the risks of developing lymphoedema may also help to reduce the incidence of
patients developing lymphoedema.
3.2 Early Detection and Secondary Prevention
Lymphoedema, in its early stages, is often difficult to diagnose without specialised
equipment and as such can be missed33. However if detected early and managed
appropriately, the risks and progression of the condition can be reduced and in some
cases may even be reversed34, 35. The implications of investment in early detection
and management are thus significant in terms of quality of life for individuals with
lymphoedema and in a broader sense, the avoidance of both health costs and
decreased productivity and participation in society of people disabled by their
condition. The specialised equipment for detection of lymphoedema known as BIS
(discussed in section 2.4) is currently used at Calvary Hospital in early detection and
ongoing management of clients with lymphoedema. Unfortunately the BIS
equipment is prohibitively expensive for GPs and many private health professionals
given its limited scope of use and as a result is not highly utilised elsewhere.
Utilisation of other new technologies such as OEP could be considered and
assessed for its relevance and potential to improve service quality and efficiency.
17
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Secondary prevention activities are implemented for people who are identified as at
risk, especially those who present following treatment for cancer. These activities
are mainly related to education and general patient wellness including leading an
active lifestyle and eating well. Specific education regarding avoidance activities
such as having injections on the contra lateral limb already regularly occurs for breast
cancer patients. This kind of education occurs for other patients also, however as
the referral pathways are not yet as well defined for other forms of cancer some of
these patients may not yet be receiving the right information at the right time.
Development of improved referral pathways and information packages should focus
on ensuring that patients receive timely assessment and education. Pathways and
information packages should consider the needs of CALD communities.
Local and national activities and policies which have been put in place to promote
early detection and screening for cancers is likely to reduce the risks associated with
lymphoedema as cancers are detected earlier resulting in less traumatic treatment
outcomes.
3.3 Inpatient Services
Currently management by lymphoedema trained clinicians for inpatients with
lymphoedema are limited or do not exist due to service pressure limiting availability
of these clinicians when required. Additionally, patients with lymphoedema whose
needs are not met in the community can result in complications which lead to
hospitalisation. There is a need to facilitate or provide services in the inpatient
setting. Earlier intervention in this setting may help to reduce inpatient length of stay
and reduce the impacts of associated co-morbidities such as cellulitis. Patients
should be given the choice of where they are referred to following discharge. This
may include private or public services, nutrition services or exercise services among
others. The provision of education materials in this setting will help to empower
patients to manage their own health when they are discharged.
3.4 End of life care
End of life care can involve management for lymphoedema. It is essential that
patients are involved in decision making about medical support options and that they
are aware that the decision is reversible. A lymphoedema trained health professional
based at Clare Holland house provides lymphoedema management for patients in
this setting and through home base palliative care services. This is, however a
limited service and as such standard protocols and the development of pathways to
address end of life care for patients suffering lymphoedema are required in the ACT.
This work should be aligned with palliative care strategies and initiatives in
accordance with the standards developed by Palliative Care Australia.
3.5 Access and Equity
ACT Health has a standing priority to improve and target vulnerable and
disadvantaged individuals and communities. Whilst there is a lack of specific
information and data on equity of service provision and access to services for people
with lymphoedema in the ACT, there is evidence of general inequity of health service
access and outcomes in the ACT. Social research conducted by the ABS for the
18
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
ACT suggests that compared to higher income groups, the lower income quintiles in
the ACT have:





worse health status
higher levels of disability/long term health conditions
more difficulty accessing services
are less able to get support in times of crisis and
lower levels of general trust and trust in the health system.
This plan aims to ensure that the needs of vulnerable and disadvantaged individuals
and communities are reflected in strategies that target access and equity. Relevant
policy such as the National Closing the Gap: Aboriginal and Torres Strait Islander
Health Campaign and the ACT Health Multicultural Coordinating Framework will help
to guide the development of strategies, referral pathways and information
dissemination through the implementation of this plan53.
4. Purpose and scope of the Plan
The outlined context and 2014/15 budget statements for lymphoedema services has
lead to a project that will deliver this one off Lymphoedema Services Plan. The
purpose of the Plan is to provide strategic directions for lymphoedema service
development to meet increasing service pressures for the period 2015 to 2018 and
beyond. This Plan aims to focus on the way services in the ACT can best respond to
meet the needs of people in the ACT and surrounding region living with
lymphoedema. It articulates a model of service delivery that will meet current and
future demand and considers the impact of services and population from the
surrounding region.
This Plan has a four year horizon to reflect the 2014/15 Budget Statements horizon
and in recognition that system wide change does not occur quickly and that time for
consolidation will be required for the benefits to be realised. The growth funding will
continue as recurrent funding following the end date of the plan in 2018 which will
enable continued service quality and improvement.
There is an associated implementation plan detailing objectives and actions required
to implement the strategic directions proposed within the plan.
During the planning process the following principles for service development were
approved by the Steering Committee to guide the development of the Lymphoedema
Services Background Paper and Implementation Plan. These principles were drawn
from ACT Health’s Ambulatory Care Framework and the ILF Template for
management document – Developing a lymphoedema service36,37.
Services will be:






Patient centred.
Multidisciplinary and collaborative.
Accessible and Equitable.
Safe and high quality; have a
Population health approach; and include focus on
Research and Education
These principles are covered in more detail in Appendix 1.
19
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
The Plan discusses how it is envisaged ACT public health services will articulate with
private sector services within the ACT and surrounding region whilst advising on
gaps or duplication in patient care and services. Strategic approaches to workforce
issues and implications will be proposed to overcome current and future issues.
Strategic directions will be considered in regards to technology, teaching, education,
collaboration, research and innovation for lymphoedema services to improve
efficiency and sharing of knowledge. Directions and approaches taken throughout
the implementation of this plan should always be focussed on ensuring that services
are delivered in a way which is patient focussed, supports choice and empowerment
and respects the needs of all patients including CALD communities.
Lymphoedema professionals are well placed to understand and provide care to
patients with this condition, as such, this Services Plan does not review the current
Model of Care or Standard Operating procedures for lymphoedema service provision
or assess clinical practice processes for the treatment of lymphoedema. Throughout
implementation of the plan, these aspects of service provision will continue to be
monitored and improved. Improvements may occur through strategies identified by
the services or through the standard quality assurance practices of the lymphoedema
services team/s. To ensure person centered care, the development of these
procedures and care models would benefit from consumer input.
5. Development of the Plan
ACT Health’s broad policy document ‘Health Directorate Corporate Plan 2012-2017’
demonstrates the ACT Government’s core principles and commitment to further
improving the health of people living in the Canberra region38. This document, along
with the Clinical Services Plan 2014-2018, currently under development, are key
documents that underpin the future direction for health services by providing
guidance to ensure that people have equitable access to the right type of health
care39.
It is essential to the success of these plans that health services are provided in
partnership with consumers, government agencies, GPs and other private health
care providers and non-government organisations. The management of chronic
disease is highlighted as a priority area for attention. The ACT Chronic Disease
Strategy 2013 – 2018 sets the direction for chronic disease prevention, detection and
management in the ACT40. As lymphoedema falls under the umbrella of chronic
conditions this Plan should align with the chronic disease management strategy.
This Plan is being developed through consultation with clinicians, consumers,
support and advocacy groups, government divisions and policy makers. Comments
from consultations with consumers, providers and clinicians have been considered
for inclusion in this document to enable completion.
20
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
6. Trends and projections - Demand for
Lymphoedema Services
6.1 Current activity
Lymphoedema specific services in the ACT are largely delivered on an outpatient, or
non admitted, basis. As described above the majority of services are delivered from
Calvary Hospital, with limited service provision at Clare Holland House (CHH) and at
Canberra Hospital.
In addition, a number of patients each year require admission to hospital due to
complicating factors such as cellulitis, sepsis or infection. These patients are
generally not provided lymphoedema management by the lymphoedema trained staff
due to limited staffing trained in this area of management.
Outpatient or Non Admitted Activity
There have been a number of data quality issues with non admitted lymphoedema
patient data over recent years making it difficult to consistently collect, analyse and
monitor activity. There are inconsistencies with manual data collections compared
with published data (outpatient minimum data set); incomplete data due to
implementation of a new patient administration system; and, lymphoedema activity
data that is collected but not able to be separately identified from other service
activity.
The following table (Table 2) presents recent data available. Calvary physiotherapy
lymphoedema, lymphoedema clinic and group education activity for 2012/13 and
2013/14 have been sourced from the outpatient minimum dataset (OPMDS).
Canberra Hospital occupational therapy lymphoedema activity for 2013/14 has been
sourced from the OPMDS. Calvary data for 2010/11 and 2011/12 were supplied by
the service and sourced from a previous patient administration system. Canberra
Hospital Physiotherapy data was supplied by the service from manually collected
data.
21
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 2: ACT Lymphoedema Services
Occasions of Service by Hospital by Year
Calvary
Hospital
2010/11
2011/12
2012/13
2013/14
1,289
1,337
702
943
196
142
42
52
80
23
62
48
1,565
1,502
806
1043
Physiotherapy Lymphoedema
143
191
208
OT Lymphoedema
Total Outpatient
143
191
53
261
Physiotherapy Lymphoedema
Lymphoedema Clinic
Group Education Classes
(Participants)
Total Outpatient
Canberra
Hospital
Calvary
Hospital
Service events provided to
inpatients
CHH home visits (estimated)
CHH inpatients (estimated)
39
12
72
100
71
113
84
94
In summary, in 2013/14 at Calvary Hospital there were 995 occasions of service
provided to 363 patients through the lymphoedema clinic and lymphoedema
physiotherapy services; six group education sessions with a total of 48 participants;
and an estimated 178 service events provided to Clare Holland House inpatients and
home based palliative care patients. At Canberra Hospital, 208 occasions of service
were provided to 73 patients by physiotherapy services and 53 occasions of service
provided to 30 patients by occupational therapy for lymphoedema patients. One
patient was seen by both Calvary Hospital and Canberra Hospital staff. Due to the
inconsistency of data, it is not possible to draw any trends from the activity.
A number of observations can however be made from analysis of the 2013/14 activity
data from the Outpatient Minimum Dataset (Calvary Hospital physiotherapy
lymphoedema clinic and education classes, lymphoedema clinic and Canberra
Hospital occupational therapy and physiotherapy lymphoedema clinics).

The majority (60%) of patients are aged 60 years and over (Table 3).

Inflows from NSW account for around 16% of activity (Table 4).

Excluding group education services, there were 1,256 occasions of service.
This activity represented 465 individual patients, averaging to 2.7 occasions
of service per individual. 21% of activity relates to initial, new or walk in
consults and 79% of activity relates to review or follow up consultations
(Table 5).

Consultation times are lengthy, reflecting the complexity of care required for
patients. The average direct time per consultation for Canberra Hospital
occupational therapy and physiotherapy is 50 and 66 minutes respectively.
The average direct time per consultation for Calvary Hospital lymphoedema
22
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
clinic 66 minutes and physiotherapy lymphoedema clinics 68 minutes (Table
5).

A total of three occasions of service were provided to aboriginal patients, two
physiotherapy sessions and one group education session, representing 0.3%
of activity.

The full time equivalent staff to patient ratio was 1:207 and 1:206 in Calvary
Hospital and Canberra Hospital respectively (Table 6).
Table 3: ACT Lymphoedema Services
Occasions of Service by Age Group – 2013/14
Age
group
0-9
10-19
20-29
30-39
40-49
50-59
60-69
70-79
80-89
90+
Total
Canberra Calvary
Hospital Hospital
7
0
3
6
37
34
76
58
35
5
261
0
0
8
28
172
228
311
169
124
3
1,043
ACT
Total
7
0
11
34
209
262
387
227
159
8
1,304
% Age
Group
of Total
1%
0%
1%
3%
16%
20%
30%
17%
12%
1%
23
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 4: ACT Lymphoedema Services
Occasions of Service by Place of Residence – 2013/14
State
Locality
ACT
ACT
ACT Not Further Defined
(blank)
ACT Total
NSW
NSW Total
Other
Total all
Yass
Queanbeyan
Potato Point
Karabar
Tathra
Bywong
Eurobodalla
Goulburn
Yarrowlumla Pt A
Cooma-monaro
Batemans Bay
Braidwood
Harden
Bega Valley
Boorowa
NSW NFD
Young
Shoalhaven
(blank)
Snowy River
Canberra Calvary
Hospital Hospital
212
848
2
2
26
214
876
4
48
18
21
2
2
2
4
13
13
13
2
10
7
6
8
7
7
6
4
3
3
1
47
157
AUST Not Further Defined
% ACT of Total
% NSW of Total
261
82%
18%
1,033
85%
15%
ACT
Total
1,060
2
28
1,090
52
39
2
2
2
4
13
13
13
12
7
6
8
7
7
6
4
3
3
1
204
10
1,304
84%
16%
24
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 5: ACT Lymphoedema Services
Occasions of Service by Clinic by Visit Type – 2013/14
Type of Visit
PT Lymphoedema Clinic
OT Lymphoedema Clinic
OOS
DIRECT
Units Of
Service
(mins)
Av
Direct
Units
Of
Service
(mins)
OOS
DIRECT
Units Of
Service
(mins)
Av
Direct
Units
Of
Service
(mins)
39
3,510
90
34
1,717
51
169
10,140
60
19
959
50
Initial Consult
New - Long
Lymphoedema Clinic
Educ.
Group
OOS
Physio Lymphoedema
OOS
DIRECT
Units Of
Service
(mins)
Av
Direct
Units
Of
Service
(mins)
45
2,985
66
OOS
DIRECT
Units Of
Service
(mins)
Av
Direct
Units
Of
Service
(mins)
133
11,844
89
Total
OOS
% Visit
type
(excl
groups)
45
4%
206
16%
6
418
70
6
0%
795
51,003
64
990
79%
Follow Up
1
74
74
1
0%
Walk-In
8
343
43
8
1%
New - Short
Review
7
451
64
Group
Total
208
13,650
66
53
2,676
50
52
3,436
66
943
63,682
68
48
48
48
1,304
Total individual occasions of service
1,256
25
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 6: ACT Lymphoedema Services
Full time equivalent staff to patient ratio – 2013/14
Location
Calvary Hospital
Canberra Hospital
Occupational therapy
Canberra Hospital
Physiotherapy
Total Lymphoedema Service
– Canberra Hospital
Staff
1.75
Patients
363
Ratio
1:207
0.1
30
1:300
0.4
73
1:183
0.5
103
1:206
Waiting Times for Outpatient Lymphoedema Services
Waiting time information was available for the physiotherapy lymphoedema service at
Calvary Hospital (Table 7). At the end of August there were 53 patients waiting to
access physiotherapy lymphoedema services – 45 category two and 7 category
three. Both category two and three patients are waiting considerably longer than
benchmark response times with category two patients waiting 9-12 weeks
(benchmark - 6 weeks) and category three patients waiting 4-5 months (benchmark 2 months) to access services.
Table 7: Calvary Hospital Physiotherapy Lymphoedema –
Waiting List Information
Data Source: ACTPAS
Month
ACTPAS Cat 1
ACTPAS Cat 2a
Urgent
High Priority
Response Time: 4
Hrs
No. of
Current
patients Waiting
on
Time
waiting
list
Response Time: 2448 Hrs
No. of
Current
patients on Waiting
waiting list
Time
ACTPAS Cat 2
High-Medium
Priority
Response Time:
Up to 6 weeks
No. of
Current
patients Waiting
on
Time
waiting
list
ACTPAS Cat 3
Medium-Low
Priority
Response Time:
Up to 2 months
No. of
Current
patients Waiting
on
Time
waiting
list
Total
No. of
patients
on
Waiting
List
May-14
N/A
N/A
1
suspended
2 weeks
53
8 weeks
7
6-7
months
61
Jun-14
Nil
N/A
Nil
2 weeks
37
8 - 10
weeks
7
6
months
44
Jul-14
Nil
N/A
Nil
2 weeks
26
7-9
weeks
7
6
months
33
Aug-14
Nil
N/A
Nil
2 weeks
45
9-12
weeks
8
4-5
months
53
26
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Inpatient Activity
As noted earlier, the majority of lymphoedema targeted services are provided on an
outpatient basis. However due to complications or patients not receiving timely
management in the community, a number of patients end up requiring admission to
hospital to stabilise and treat their lymphoedema and associated complications such
as cellulitis. Additionally, as outlined in the literature, those admitted to hospital with
cellulitis may benefit from assessment/screening and management for
oedema/lymphoedema.
Increased services, early diagnosis and efficient management of lymphoedema may
help to prevent some of these hospital admissions. Other admissions where cellulitis
or lymphoedema are a secondary or subsequent diagnosis would need treatment
however these admissions would not be preventable through increased outpatient
lymphoedema services.
In 2013/14 there were 49 inpatient episodes to ACT public hospitals where the
primary diagnosis was for lymphoedema and 633 inpatient episodes where the
primary diagnosis was for cellulitis (Table 8).
Lymphoedema admissions have decreased since 2010/11 by an average of 3% per
annum, down from 54 episodes to 49 episodes in 2013/14.
The number of cellulitis admissions overall have increased – average of 6.4% per
annum over the last three financial years. At Canberra Hospital admissions have
increased at an average of 11% per annum (from 279 episodes in 2010/11 to 383
episodes by 2013/14) while admissions to Calvary Hospital for cellulitis have
essentially remained constant.
Of the 633 cellulitis episodes in 2013/14, 15 (or 2.3%) related to Aboriginal and
Torres Strait Islander patients.
In 2013/14, of patients admitted for lymphoedema 27% had part of their inpatient
care provided through the Hospital in the Home (HITH) Program and 34% of patients
admitted for cellulitis had part of their inpatient care provided through the HITH
program. The number of cellulitis patients receiving part of their care though HITH
has increased considerably from 151 episodes in 2010/11 to 218 episodes in
2013/14 – an average of 13% per annum. This may reflect changing models of
service delivery as patients receive care either in their own home or return to hospital
for follow up care such as dressings in an ambulatory setting .
27
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 8: Inpatient Episodes – 2010/11 to 2013/14 by Hospital
Data Source: Admitted Patient Care Dataset
Primary Diagnosis - Lymphoedema
Canberra Hospital
Calvary Hospital
ACT Public Total
Fin
Year
2013/1
4
2012/1
3
2011/1
2
2010/1
1
Othe
r
Tota
l
5
27
32
4
23
4
8
HIT
H
Othe
r
Tota
l
%
HIT
H
13
36
49
27%
17
16
28
44
36%
2
11
13
37
50
26%
11
19
16
38
54
30%
Othe
r
Tota
l
8
9
17
27
12
5
35
39
9
27
35
8
HIT
H
HIT
H
Primary Diagnosis - Cellulitis
Canberra Hospital
Calvary Hospital
ACT Public Total
Fin
Year
2013/1
4
2012/1
3
2011/1
2
2010/1
1
Othe
r
Tota
l
80
303
383
61
306
37
26
HIT
H
Othe
r
Tota
l
%
HIT
H
218
415
633
34%
256
203
420
623
33%
127
260
170
369
539
32%
122
247
151
375
526
29%
Othe
r
Tota
l
138
112
250
367
142
114
242
279
133
253
279
125
HIT
H
HIT
H
In 2013/14 the average overnight length of stay in hospital for lymphoedema patients
was 6.8 days at Canberra Hospital and 2.9 days at Calvary Hospital. On average the
equivalent of less than one overnight bed is occupied at anytime by lymphoedema
patients at either Canberra or Calvary Hospitals (Table 9). For example, those
whose primary admission cause is lymphoedema who are suffering sepsis will have
a considerably longer stay than those with a diagnosis that is of less risk.
Differences in admission criteria may therefore skew the length of stay data for either
location.
The average length of stay for patients admitted for cellulitis in 2013/14 was 4.5 days
at Canberra Hospital and 3 days at Calvary Hospital. On average the equivalent of
five overnight beds are occupied at anytime by cellulitis patients at Canberra Hospital
and two overnight beds at Calvary Hospital. The equivalent of an additional 4
overnight beds is being managed through the HITH program.
These patients require lymphoedema support while they are inpatients and ultimately
through enhanced service outpatient provision, the number of admissions should
decrease. It is anticipated that, for patients who end up being admitted,
lymphoedema support may help to reduce the length of stay or help reduce the risk
of subsequent re-admission for the same condition as indicated in the literature42.
28
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 9: Inpatient Activity – 2013/14
Data Source: Admitted Patient Care Dataset
% day only = day only episodes/total episodes
O’NALOS = overnight average length of stay excluding HITH days
Equiv O’N beds = overnight bed days – HITH days/365/85% occupancy
Stay Type
Day Only
Overnight
Total
% day only
O'N ALOS
Equiv O'N
beds
Stay Type
Day Only
Overnight
Grand
Total
% day only
O'N ALOS
Equiv O'N
beds
Primary Diagnosis: Lymphoedema
Canberra Hospital
Calvary Hospital
ACT Public Total
Bed HITH
Bed HITH
Bed HITH
Episodes
days
days Episodes
days
days Episodes
days
days
5
5
0
2
2
0
7
7
0
27
218
35
15
75
31
42
293
66
32
223
35
17
77
31
49
300
66
16%
12%
14%
6.8
2.9
5.4
0.6
0.1
0.7
Primary Diagnosis: Cellulitis
Canberra Hospital
Calvary Hospital
ACT Public Total
Bed HITH
Bed HITH
Bed HITH
Episodes
days
days Episodes
days
days Episodes
days
days
39
39
0
30
30
0
69
69
0
344 2,024
461
220 1,434
769
564 3,458 1,230
383
10%
2,063
461
250
12%
1,464
770
633
11%
3,527
4.5
3.0
4.0
5.0
2.1
7.2
1,230
6.1 Projected activity
As noted earlier, due to data quality issues it isn’t possible to draw any trends from
recent historical data. A number of assumptions need to be made to estimate future
demand for services.
Service Planning Assumptions
Outpatient/Non admitted Services

Waiting list – one off adjustment that all patients currently on the waiting list will
access services and that each patient will receive the current average of 2.8
occasions of service. With the enhancement of staff, all patients will receive
access to service in a timely manner.

Minimum model – that existing activity will grow in line with population
projections, adjusting for the age profile of current patients, 1.5% per annum.
29
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018

Maximum model – that it is reasonable to expect demand for services linked with
growth in cancer incidence. While this will not apply to all patients, a reasonable
upper limit to model, 4.4% per annum.

Prevented inpatient activity – with the increase in staffing capacity, a proportion of
inpatient episodes should be prevented which would be reflected as additional
activity in the lymphoedema service. This assumption is explained in more detail
below. Each inpatient prevented and accessing outpatient services would receive
the current average of 2.8 occasions of service.
Inpatient Activity

Currently there is little or no support provided to inpatients with a primary
diagnosis of lymphoedema or cellulitis and this need should reasonably be met
with at least one occasion of service provided for each episode.

Minimum model – ACT public sector overnight inpatient activity is projected to
grow at 2.4% per annum1. It is assumed that lymphoedema episodes will remain
at 2013/14 levels. Cellulitis admissions to grow at the ACT average of 2.4% per
annum.

Maximum model – Cellulitis admissions have been growing on average at 6.4%
per annum.

Prevented inpatient activity - with additional resources providing enhanced
outpatient services, inpatient admissions should reduce. The difference in
episodes between growth at 2.4% and 6.4% is set as a notional target for
prevention of admissions.

Total projected inpatient activity assumes lymphoedema episodes will remain at
current levels and cellulitis admissions will grow at 2.4% per annum.
Model outcomes
The following table (Table 10) presents the modelling outcomes of the above
assumptions. Allowing for growth in existing services and identification of unmet
need, it is estimated that total service events might increase from a current baseline
of 1,662 occasions of service to between 3,600 and 4,200 occasions of service by
2021/22. The activity is assumed to continue to be delivered from the existing
hospital sites. As the new service model is developed some of this future activity, will
be identified as non complex, will move to community locations.
1
ACT Acute Inpatient Model overnight activity excluding unqualified babies
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Table 10: ACT Lymphoedema Services - Projected Activity
Occasions of Service/Service Events by Year
Hospital
Clinic/Service
Calvary
Hospital
Physiotherapy
Lymphoedema
Lymphoedema Clinic
Additional Physiotherapy prevented inpatient activity
Total Outpatient
Group Education Classes
(No.)
Group Education Classes
(Participants)
Canberra
Hospital
Status
2021/22
Min.
Growth
1,229
2021/22
Max.
Growth
1,540
52
59
304
73
304
1,143
1,288
1,614
6
6
7
8
48
48
54
68
267
319
319
84
84
95
119
94
94
106
133
208
208
234
294
53
53
60
465
75
465
760
1,340
1,480
415
495
495
2,763
3,642
4,159
Variance to
2013/14
% Variance to
2013/14
1,976
119%
2,493
150%
943
existing
existing
new
Waiting
List
Adj.
148
52
995
148
Adjusted
Baseline
1,091
existing
existing
Service events provided to
inpatients
new
CHH home visits
(estimated)
CHH inpatients (estimated)
existing
existing
Physiotherapy
Lymphoedema
OT Lymphoedema
Additional Physiotherapy prevented inpatient activity
Total Outpatient
2013/14
existing
existing
new
Service events provided to
new
inpatients
Total ACT public activity (excluding group
sessions)
493
1,666
0
148
6.2 Benchmarking
Benchmarking against other services has proven to be difficult for similar reasons to
those demonstrated above. Due to the lack of a standard minimum data set for
lymphoedema there is inconsistent access to data for services throughout the
country. Additionally services provide care to undefined regions based on need
alone and hence do not have specific catchment areas. Services are consistently
reported to be short staffed and hence finding time to collect and analyse or share
data is difficult. Table 11 shows services that provided response to contact and how
they compare to services in ACT. No assumptions have been made regarding
comparison due to the differences in service type, patient type and population
numbers.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Service
Staff
Catchment
population
Patients
Occasions
of service
Waiting list
Description of Service
ACT
including
CH, CHH
& CHCB
Monash
Health
2.65 FTE
617,071
1430
Up to 6
months
Complex management to primary and secondary
lymphoedema patients. Public service provision, mostly
free, some consumables charged at a cost.
1 FTE
Undefined
423 +
patients not
identified at
CH
700 ongoing
500 Breast
screening
1291
6-8 weeks
Royal
Hobart
Hospital
Goulburn
Valley
Health
Greenwich
1 FTE
~250,000
80-90 + one Unknown
off screening
1-2 weeks
Service 4 days per week. Cancer lymphoedema patients
only, screening and treatment. Screening post breast
cancer is 6 times over 2 years and then discharged if no
symptoms present. Services are free.
4-6 patients per day are seen, primary and secondary
lymphoedema.
6 hrs
/week =
0.16 FTE
0.2
Undefined
100-110
Unknown
patients/year
2-4 weeks
Lower north
shore
Unknown
None
currently
~84 / year
Primary and secondary lymphoedema management.
Patient education, assessment and advice. Mostly noncomplex management, limited bandaging service.
Cancer and palliative care lymphoedema management 8
hours per week
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
6.3 Recommended Focus areas:
Bringing together the research, data, stakeholder input and benchmarking activities
there are four areas of focus that have been identified where we may be able to
influence outcomes for consumers of lymphoedema services in the ACT region,
these are:
a. Improved data collection to enable better analysis of service provision quality
and efficiency and to guide strategic decision making
b. Reduced staff to patient ratio in line with published benchmarks to assist in
reducing the waiting list and enable quality improvement activities; and
c. To target gaps in current service profile to ensure better access and
outcomes for consumers
d. Building capacity in General Practice to provide education and preventative
care
a. Improved data collection
It is evident locally and nationally that the data collection for lymphoedema services
is limited which makes service utilisation analysis and projections difficult to quantify
in an accurate manner. This is also relevant for analysing service efficiency and
patient outcomes. As such it is difficult to definitively quantify the required resources
looking into the future. By improving the data collection it will improve the capacity to
identify where services are most required. For example, identifying where there may
be increases in average BMI or increases in psychosocial complexities may help to
guide treatment strategies, referral pathways or multidisciplinary activities to help to
improve guidance in diet and exercise protocols or psychological coping
mechanisms.
In considering an objective of improved data collection and how staffing profiles may
influence this, allowance for administration staffing should be included to enable
support for this improved data collection as well as patient management. This will
help to identify areas where services can be best targeted and where efficiencies can
be gained with the aim of improving service outcomes for consumers. Objectives for
the future should include consideration for ways to best collect data on lymphoedema
to represent screening, education, non-complex, and complex management as well
as service location, waiting list numbers, prevalence, co-morbidities and outcomes.
This may also enable the development of a matrix of service provision which more
comprehensively maps out the patient journey to enable patients to be seen in the
right place at the right time by the right people. With time this should ensure greater
involvement of the private sector and GPs.
b. Reduced staff to patient ratio:
There is no widely adopted benchmark; however the Welsh Government has
concluded through a review performed by their Cancer Services Commissioning
Group that the optimal staff to patient ratio for lymphoedema services is 1:150. While
staff to patient ratio is not considered the best measure of service need because of
the differences in population demographics, it has been a useful aspect in the
assessment of potential causes of service pressures. The ratio in Wales was
proposed for a clinician providing services to all levels of lymphoedema including
33
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
screening, management and education. This also factors in the complex nature of
the condition and the need for staff to see a range of patients and still have time and
access to further education and quality improvement activities. Although the data
presented is not complete across all of the services provided, the data that is
available can be utilised to paint a picture of the current staff to patient ratio.
The staff to patient ratio at Calvary Hospital is 1:207 and 1:206 at Canberra Hospital.
When combining the patient and staff numbers from the two service locations the
staff to patient ratio is 1:207. This is 38% over the Welch benchmark optimum of
1:150. The resultant service pressure may be reflected in the current waiting list
data.
Calvary hospital lymphoedema service reported 53 people on the waiting list at the
end of August 2014. This represents nearly 15% of the total 2013/14 Calvary
hospital patient numbers (363) waiting for lymphoedema services. In the four months
to August, category 3 (low risk) patients were waiting up to 7 months for treatment,
over 3 times longer than the maximum benchmark response time for this category.
Category 2 (medium risk) patients represented the largest portion of people on the
wait list and in the four months to August 26-53 patients were waiting 7 to 12 weeks
for treatment where 6 weeks was the maximum benchmark.
Increased waiting time may result in risk of the lymphoedema symptoms becoming
worse which in turn can result in reduced independence and functionality, increased
risk of hospitalisation and increased complexity of management of symptoms. The
physical and psychosocial impact on the patient may be negative which may result in
increased risk of co-morbidities such as depression, increased weight and
dependence on care supports.
Using the Welsh benchmark staff to patient ratio, at the current reported number of
patients an additional 0.86 FTE clinicians would be required. This would grow to
0.97-1.21 FTE by 2021/22 at the projected minimum and maximum growth rate of
1.5% and 4.4% respectively. This does not factor in current patient numbers and
staff at CHH due to the lack of patient data in this location. With an increase in
staffing numbers services will aim to reduce the waiting list which will result in more
timely management of patients at risk and improve patient outcomes, quality of life
and reduce the risk of hospitalisation and associated co-morbidities.
In projecting staffing levels, increases to the base line should also be considered with
projected growth rates into the future. If current base line level patient volumes and
staffing levels (2.45 FTE) are subjected to growth projections (1.5-4.4%) then by
2021/22 it could be projected that staffing levels would need to increase by 0.31-1.01
FTE.
c. Target gaps in service profile
Inpatient management is the main area where lymphoedema services are not being
provided and where it may be of benefit both for people with lymphoedema and
people with cellulitis. Best practice processes presented in the literature indicate that
all patients admitted for cellulitis should be assessed for and educated about
oedema/lymphoedema. Assessment may be best achieved by a lymphoedema
clinician using technologies such as BIS or OEP however a broader staff base with
the skills and knowledge in lymphoedema assessment and education may improve
the outcomes for this patient group. A lymphoedema clinical educator from the hub
34
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
would provide education to ward staff and community based clinicians to enable a
broader more sustainable staff base with the skills in identifying and providing low
complexity treatment/education to patients with this condition. The screening
activities and management of admitted patients identified to have lymphoedema
would be best achieved by lymphoedema trained clinicians. In the 2013/14 financial
year there were a total of 682 inpatient admissions. This is projected to increase to
814 admissions by 2021/22. If each of these patients requires a one hour
assessment this would equate to 814 clinical hours or 0.72 FTE based on current
clinical capacity. Additionally, on the basis of the research by Dupuy et.al. 18% of
the patients would be likely to have symptoms of oedema/lymphoedema which may
require further management.
d. Building capacity in General Practice to provide education and
preventative care
Australian literature in 2004 has highlighted a need for increased health professional
awareness of lymphoedema. It also discussed the relevance of the Medical Benefits
Schedule and opportunities for education for health professionals. Reports have
indicated that the issues present in 2004 have not changed considerably. Increased
knowledge of lymphoedema and its management by health professionals including
GPs more broadly would help by increasing the early diagnosis opportunities and
patient awareness.
Capacity building will be achieved through education. A role of the clinical educator
staff member will be to liaise with Medicare Local (Primary Health Networks from
2015) to create opportunities for education of GPs and AHPs regarding
lymphoedema and its management, this should actively consider the utilisation of
Health Pathways. This increased knowledge at the primary care level will enable
more opportunities for education of clients and will aid in the promotion of activities
which reduce the risk of lymphoedema. These may include advice on maintaining
healthy weight, promotion of exercises, reduction of known risk activities and referral
to other health professionals or programmes. The education of GPs should also
include materials outlining options for referrals to supported gym classes (private,
public and through education facilities), public and private health professionals and
appropriately trained professionals such as pharmacy provided compression
garments and massage therapists. Increased capacity to provide support at the
primary care level will improve patient outcomes by providing services that are easier
to access, as well as decreasing pressure on specialist services by providing more
options for lower risk/complexity individuals. Consumers also have a role in
recognising and addressing risk. Increased opportunity for education of consumers
will support their ability to be involved and responsible for their own health needs and
risks.
Focus area conclusions
Given the projections and modelling considerations, by 2021/22, the projected
additional clinical staffing required would be 2.0-2.94 FTE with additional
administration support. This level of additional staffing can be achieved with the
budgeted increase in funds proposed in the 2014/15 budget statements. Additional
equipment and consumables required to support this increase will also be achievable
within the proposed budget. Implementing this level of staffing earlier on would
35
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
facilitate work towards service improvement, models of care, standard operating
procedures, research processes and broader education which will enable a more
efficient and larger workforce to deal with service growth into the future without the
requirement for additional funding. Education of GPs may increase their capacity to
be involved in lymphoedema service provision. This will be an early objective for the
lymphoedema service which may enable a long term solution for the growing number
of people with lymphoedema.
A workforce planning workshop has been undertaken and a Workforce Plan
(Appendix 2) has been developed. This Plan discusses the most appropriate skill
mix to enable services to be provided in a manner that is efficient and of high quality
and produces the best outcomes for the consumers of this service.
7. Objectives for the future provision of
lymphoedema services
The following objectives have been formed in the context of planning to deliver
services through 2015-2018 and beyond. This will allow people in the ACT region
with lymphoedema, or who are at risk of lymphoedema, to maintain their
independence and participate as fully as possible in their community by ensuring
access to:


A coordinated and integrated range of prevention/screening and treatment
services.
Advice, information and support to assist them to make informed decisions
about their health care.
This will be supported by the establishment of a lymphoedema Services Network
which will facilitate collaborative and coordinated services
7.1 Primary Prevention
Objective: That lymphoedema services contribute to a planned strategy of
integrated chronic disease primary prevention program focusing on nutrition
and physical activity.
Actions:
Given that specific primary prevention of lymphoedema is not currently evident in the
literature, the main consideration for primary prevention which may provide benefit to
people with lymphoedema is that of a planned strategy of primary prevention efforts
related to chronic diseases.
7.2 Early Detection and Secondary Prevention
Objective: To provide an optimal integrated service in lymphoedema detection
and management.
Actions:
 Increase community awareness of lymphoedema risk factors and
management of complications and assessment options through establishment
36
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018








of partnerships and connections with primary health care providers including
GPs and organisations such as Medicare Local (to be Primary Health
Networks from 2015).
Improve connections and referral pathways between services who provide
treatment to at-risk individuals such as cancer surgeons, radiation oncologists
and obesity management services. This may be promoted through alignment
with the Health Pathways Portal.
Provide targeted screening of at-risk individuals.
Provide support through a variety of strategies to address information, training
and ongoing support for health care professionals on lymphoedema.
Ensure increased emphasis on self-management
Integration of lymphoedema management with broader chronic disease
programs – such as the Obesity Management Service and the ‘towards zero
growth’ initiative. Referral to GPs for management/coordination of chronic
health conditions will help to improve outcomes.
Identify partners for network establishment within the community –
government, non-government organisations and community groups.
Development of programs that are culturally sensitive.
Develop pathways to enable prompt referral of patients to access BIS
assessment efficiently (ideally without full consultation by lymphoedema
specialists).
All programs for lymphoedema should be established and delivered in a collaborative
fashion with those for obesity and cancer in recognition of the strong clinical overlap.
The ACT Health Chronic Conditions Strategy 2013-2018 highlights opportunities for
improving programs which are relevant to lymphoedema Services (Priority 2 –
Improve access and 3 – Better support those in the community).
7.3 Lymphoedema Services
Objective: Establish a sustainable multidisciplinary service to meet needs of
lymphoedema patients in an environment with a community health focus.
Actions:
 Recruit additional staff: including consideration for medical specialist
requirements, allied health staff, allied health assistants and administrative
services officers to deliver multi-disciplinary services to lymphoedema
patients and provide education across the sector
 Establish alternate locations to hospital for outpatient services (e.g.
community health centres).
 Provide more accessible management for people requiring treatment in the
inpatient setting
 Harness skills of trained people who don’t wish to participate in the full time
workforce.
 Improve and facilitate the dissemination of information across disciplines
and clinical specialty areas to enable broader and more accessible services
and improved workforce planning
 Create a care coordination model which would include a summary record /
framework for clinical communication for patients which is integrated,
coordinated and used in collaboration with other services.
37
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018

Create a public list of private service providers with appropriate
lymphoedema qualifications and identify referral pathways which can be
documented on HealthPathways.

Collect and maintain a minimum data level which reflects active patient
numbers, screening patient numbers, lymphoedema stage information,
occasions of service and service location.
7.4 Research and Education
Objective: There will be a strong research component across all lymphoedema
services within the ACT supporting and informing the delivery of clinical
lymphoedema services.
Actions:
 Identify opportunities to build upon existing education relationships with
universities, CIT, private practice and other education centres as well as
private practice
 Ensure that clinical research is an integral part of employees’ roles
 Ensure that provision of clinical education of staff and students is an integral
part of employees role
 Identify and adopt IT infrastructure to support this research
 Provision for student placements, allied health rotation and allied health
assistants rotation
 Create opportunities for multidisciplinary education workshops and integrate
with private practice through clinical collaboration and education.
 Include consumers in the research process
Ongoing research will continue to inform protocols and establish a growing body of
evidence on best practice. The services will actively participate in education and
training and allow for up-skilling, on the job learning and dissemination of knowledge
throughout the health sector.
7.5 Access and Equity
Objective: There will be a greater focus on improving access and equity across
all lymphoedema services within the ACT and surrounding regions
Actions:
 Develop innovative models of care which consider methods to improve
access for remote individuals such as E-health or tele-health models.
 Ensure that there is consistency across services provided and costs to
patients across all publicly provided services
 Ensure that patients who are transitioning in and out of inpatient care have
improved access to lymphoedema services and communication and referral
pathways are clear and streamlined.
 Develop services and education modalities which are culturally sensitive
and consider the needs of minority groups such as the Aboriginal and
Torres Strait Islander people.
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ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
8. Proposed framework for lymphoedema services
Public lymphoedema services for the ACT are predominantly provided within the
hospital environment. This plan proposes a framework for a network of services
within which a larger focus will be aimed towards delivery of services in the
community.
ACT Health has identified a need to shift the focus of services from the hospital to
community environment so that access can be improved by providing services closer
to where people live and also to make the most efficient use of health resources. It is
expected that an expanded and holistic lymphoedema service would reduce the
lymphoedema related admissions, however this does not preclude this Services Plan
from considering the access of inpatients to lymphoedema services. This shift needs
to be balanced by improved capacity for inpatients to access services.
The establishment of a Lymphoedema Service Network supported by appropriate
communication services and information technology infrastructure will allow
lymphoedema services to follow this strategic direction. This may consider the
utilisation of the eHealth record system as it increases in function and utilisation
locally and nationally.
Given the comparatively low volume of staff and patients for this condition the plan
needs to consider the efficiency of complex versus non-complex services, and how
and where these services can be provided.
This will be done by:
 A ‘Hub and Spoke’ model whereby complex cases are treated in a core
location and the non-complex cases can be treated in the satellite locations
such as community health centres.

Consideration of where the hub is best located, if it is deemed that the current
Hub should move location through the duration of the Plan. This could
include consideration for shifting to a new facility as a part of the investment
into the Health Infrastructure Program.

Identifying and implementing new communications systems and appropriate
clinical information systems to support the delivery of lymphoedema services
across the network of lymphoedema services providers and locations.

Improving and expanding on methods of education and service delivery for
remote patients.

Increased collaboration or representation of a range of allied health
professionals in line with the objective of multidisciplinary care.
The framework represented in Figure 1 aims to reduce current duplication and
increase efficiency by providing one ‘Hub’ where lymphoedema staff have access to
support, training and education by creating a critical mass of staff to enable this.
Training, support and outreach services to community centres, inpatient services,
surrounding regions and GPs can be best provided through one centre which can
develop models of care and perform research into best practice concepts. This
framework is explained in further detail below.
39
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
Figure 1 – Lymphoedema Framework
40
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
8.1 The Hub
The current core location for lymphoedema services is CHCB. During the
development of this Plan the Steering Committee has seen no reason to change the
core location and as such it is proposed that the lymphoedema hub would be
established at CHCB. This will enable growth of the services in a structured and
supported manner where equipment and facilities already exist for comprehensive
lymphoedema management. Multidisciplinary clinics will continue to run at CHCB
with greater involvement from a broader healthcare workforce. Research and
education will be a core element required by the team members in the lymphoedema
Hub.
It was identified through stakeholder engagement that there is a potential risk of a
lack of space at CHCB while increasing services in this location. Stakeholders also
expressed concerns regarding issues of governance for staff based at Calvary
Hospital providing services, education and support in other locations such as the
community health centres. It is hoped that the concerns regarding governance would
be reduced and avoided through the introduction of a lymphoedema network as
discussed in sections 8.4, 8.8 and 9. Stakeholders have agreed that it may be
necessary to consider alternate locations for this ‘Hub’ through the timeframe of this
Services Plan. Any change of location should consider the Ambulatory Care
Framework which discusses the transition of ambulatory services towards community
based locations36.
8.2 Inpatient services
Connections will need to be made within the hospital setting. Inpatients requiring
lymphoedema management will be afforded improved access to lymphoedema
services through mobile lymphoedema specialists from the hub that will provide
support and education to existing acute care staff. Inpatient support at Canberra
Hospital will be provided by staff based at Canberra Hospital. Continuity of care will
be ensured through referral to appropriate outpatient, community or private services
on discharge.
8.3 Secondary/Outreach services
An early objective of this specialist ‘hub’ will be to develop connections with the
community health centres, regional services, private practice and community
organisations. These connections will enable lymphoedema specialist staff from the
hub to provide education and support more broadly to improve health professional
and community knowledge of the condition and management of lymphoedema.
Mobile lymphoedema staff from the hub will attend clinics in the health centres and
provide education and support to health professionals in these areas as well as
providing patient care. Community based services will focus on early
detection/screening services well as non-complex lymphoedema management.
Providing these services in community centres will facilitate patient-centred care by
improving access and equity. Connections with relevant community organisations
may enable greater knowledge sharing through group education and information
sessions. There is greater representation of community groups who support breast
41
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
cancer survivors and as such these connections should consider the equity of access
for other minority community groups.
8.4 Lymphoedema Services Network
The Lymphoedema Services Network will be formed following endorsement of this
Plan. The lead role of the network will be decided by the network and this is
dependent on the recruitment of the lead clinician by Calvary Hospital. The
Lymphoedema Services Network will work collaboratively to continue to break down
barriers between services, develop referral pathways and information sharing
avenues including the collaborative development of pamphlets and handouts. The
Network will help to resolve service wide issues and connect with the public and
private sectors and community organisations both locally and in NSW. This work
should integrate with HealthPathways to help share information and referral
pathways with GPs. Actions and activities performed by the Lymphoedema Services
Network will be undertaken with the goal of improving patient centred care and
patient outcomes.
8.5 Private Practice
There is currently some capacity for complex and non-complex lymphoedema
management in the private sector. Increased capacity for service provision from
private practice allied health clinicians with appropriate training and experience may
result from increased education and promotion of the use of the GPMP/TCA. Private
practitioners have an important role in providing lymphoedema care which
contributes to an efficient and sustainable service in ACT and the surrounding region.
Private practice also offer exercise-based services for persons with lymphoedema.
Exercise has been shown to have positive effects on those with lymphoedema and
the effects on health more broadly are well known. It will be important to ensure that
exercise recommendations and referrals are offered to patients with or at risk of
lymphoedema.
8.6 General Practice
GPs will play an important role through identification/screening of at-risk individuals
and timely referral of these individuals for assessment and intervention. GPs will
play an important role in education of at-risk individuals as well as by providing
GPMP/TCA to appropriate individuals to enable access to Medicare subsidised allied
health intervention. Clear pathways and referral processes will need to be developed
and integrated with the Health Pathways portal.
8.7 Prevention and Health Promotion
The Breast Cancer Shared Care Guidelines currently being implemented proposes
greater involvement of GPs in the follow up of early breast cancer patients. This will
mean that there is increased need for GPs to access education to ensure that they
are monitoring and providing education to patients who are at risk of lymphoedema.
42
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
This could occur in parallel to specialised screening which will be provided by the
lymphoedema services.
The ACT lymphoedema service will place increased emphasis on its role in
supporting GPs and AHPs in the prevention, early detection and management of
lymphoedema by providing increased education and skills development as well as
guidance through clinical protocols and supporting the development of
HealthPathway.
The overlap in risk factors between lymphoedema and other chronic diseases means
that a planned strategy of primary prevention efforts related to chronic diseases is
likely to be of benefit to people with lymphoedema. Current ACT primary prevention
activities for chronic disease include general and targeted awareness around
nutrition and physical activity. Management of persons with or at risk of
lymphoedema will involve patient information and referral to the right health services
and professions. Referral to services such as exercise groups and nutritionists will
help to improve patients wellbeing and health outcomes.
Consumers have a role in recognising and addressing risk. The lymphoedema
service and services network will aim to improve consumer health literacy alongside
other health promotion and health literacy activities. Improved consumer health
literacy will help by reducing behaviours and lifestyles which increase risk of
developing lymphoedema and by enabling self monitoring and early referral.
8.8 Governance
Implementation of this framework, which will extend beyond the current boundaries of
the Canberra and Calvary Hospital lymphoedema services, will require a review of
the governance structures. It will be supported by a network of public and private
clinical services to oversee the implementation of the plan and the proposed service
structure. This network will support and enable service provision across the
boundaries of Calvary Health Care Bruce and ACT Health and help to break down
barriers to facilitate this change. A change of current governance over lymphoedema
services may also be required following the completion of the ACT Health Allied
Health Review.
Implementation of the Plan will be overseen by the Lymphoedema Services Network
to ensure that implementation occurs, is monitored and adjusted as appropriate over
the life of the Plan.
8.9 Patient Pathway
The patient pathway has been illustrated below in Figure 2. This pathway reflects the
three tiered approach illustrated in Figure 1. Inclusion of the lymphoedema stages
has been attempted to try to reflect where each stage of lymphoedema fits into the
model. Tier one, including GPs, AHPs and treating medical specalists will identify
patients who are at risk of developing lymphoedema (Stage 0 lymphoedema). At
this tier, secondary prevention initiatives should be put in place, including education
and advice regarding pro-active ways to reduce the risk of developing lymphoedema.
A referral should be made to services (tier two) which have access to screening
technology such as BIS. The designated community health centres will be equipped
with this technology to enable screening of patients at risk. Regional services and
43
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
private practice may also provide screening services. Education and support to
clinicians in these locations will be provided by a clinical educator and patient
services will be provided by mobile lymphoedema specialist staff from the
lymphoedema hub. In addition to screening, patients will be provided with further
education. Screening and secondary prevention should include a multidisciplinary
approach to care. Group education sessions will be run from the community centres.
Patients who have or go on to develop lymphoedema (Stage I and II lymphoedema)
should be referred to be treated in the community centres, private practice or at
regional services.
If the lymphoedema condition is deteriorating, becomes complex (Stage III
lymphoedema) or complicated by comorbidities, the patient will be referred on to the
lymphoedema hub (tier three), currently at Calvary Hospital. Patients will receive
further education, and complex management of their condition. A multidisciplinary
clinic will be run from this location with a medical specialist for the menagement of
difficult complex cases. Patients will be referred back to tier two services for regular
maintainance once the complexity of their condition has reduced. For patients who
do not require input from the medical/mulstidisciplinary clinic, there is some capacity
for complex lymphoedema care in the private sector.
The outpatient lymphoedema services at Canberra Hospital will cease and will
transition to community location/s. Inpatient lymphoedema related services at
Canberra and Calvary Hospitals will be provided by clinicians based at or near those
locations. Education of other staff at the hospitals will be managed by lymphoedema
staff from the Hub or Canberra Hospital with the support of the lead clinician at the
Hub.
Figure 2 – patient pathway
Tier one
Tier two
Tier three
*Note: Private practice has some capacity to manage complex cases
**Inpatients may be managed and referred into this pathway if appropriate
44
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
8.10 Workforce
A sustainable and multidisciplinary skilled workforce will be required to allow the
proposed framework of lymphoedema services to be implemented.
A workforce planning workshop was undertaken to identify the appropriate skillmix of
staffing to ensure that patients receive the right mix of care and that staff are
receiving the right level support and education that is required. This resulted in the
developedment of a Lymphoedema Workforce Plan attached as Appendix 2. It was
identified that a maximum of 70% of the growth funding would be spent on FTE
increase. This would enable the remainder of the funds to provide capacity to deliver
services including but not limited to equipment, education and operational costs such
as consumables.
The model is innovative in its approach to employment arrangements and involves
staff being rostered to multiple locations whilst being contracted to the organisation
providing the ‘Hub services’. The current funding for Canberra Hospital and Health
Services will remain, with outpatient services currently provided at Canberra Hospital
shifting to community health centre/s or other identified ambulatory centres. Service
provision will be flexible to ensure that services are provided in an efficient way that
meets the needs of the community.
The increase in FTE at the Hub will include the addition of a senior clinician/service
manager who will co-ordinate the service, education including materials development
and quality improvement activities. The senior clinician will have an active role in the
Lymphoedema Services Network. Addition of administrative support will enable
clinicians to be fully focussed on their clinical roles. Recruitment should be open to
allied health clinicians who have Australian Health Practitioner Regulation Agency
Registration.
Implementation of the proposed lymphoedema services model will need to consider
the governance structure which oversees professional issues and may need to
undergo change to support the staff of varying disciplines and to support staff who
will deliver services in the community.
Although many of the issues in this Services Plan point to a need to increase
workforce numbers, strategies aimed at reducing fragmentation and improving
efficiency in the workforce need to be considered. Education and training for
identified community based services will be required to enable a larger, more
sustainable knowledge base through these services. Greater capacity for the private
sector to provide lymphoedema services will need to be encouraged and promoted
and in line with this, greater collaboration and communication between service
providers.
8.11 Resources
The proposed hub and spoke model will result in the required acquisition of
equipment and consumables for screening and treatment services within the
allocated budget. Consumables such as bandaging and electrodes for BIS screening
are fundamental to the service. Currently, across the public lymphoedema services,
there is inconsistency of costs to patients for consumables such as BIS and
bandaging. These consumables should be provided consistently across public
45
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
lymphoedema services and in line with current ACT Health fees and charges
policies. Compression garments will not be funded by the lymphoedema service.
Spokes with lymphoedema trained clinicians such as identified Health Cantres and
Canberra Hospital will require BIS devices for the provision of screening services. It
will be necessary to factor these into consideration of how the allocated budget will
be appropriately utilised and spread between increased staffing needs, equipment
and consumables.
8.12 Infrastructure
Currently lymphoedema services are provided from the Calvary Hospital outpatient
clinics, Clare Holland House and CH outpatient clinics. Since demand projections
suggest there will be a need for increased staffing, there will be an associated need
for physical capacity for lymphoedema services into the future. As previously
mentioned, current services are already suffering space restrictions. Utilisation of
space in the new health centres has been explored. Further work and collaboration
will need to occur as a part of implementation to manage a shift of spoke services
into these locations. It may be necessary to consider alternate locations for this ‘Hub’
through the timeframe of this Services Plan.
8.13 Technology
The establishment of a Lymphoedema Services Network and movement of services
to the community is dependent upon enabling communications services across
campuses and implementing Information Technology infrastructure.
Effective management of chronic diseases will require information systems that
assure ready access to key data and patient clinical information. The complexities of
lymphoedema patients’ conditions require that access to all patient related
information be at the fingertips of the health care provider in order to deliver
comprehensive health services. Local and national initiatives are working toward
harnessing information technology to this end.
Newer technologies are already being utilized in the region for assessment,
screening and treatment for lymphoedema. Technology such as BIS and laser
treatment have been found to be effective and further utilization of these technologies
and newer technologies as they arise will benefit the screening and treatment of
lymphoedema.
8.14 Research and Data collection
Data on patient participation, service delivery and patient outcomes needs to be
collected as a routine element of the enhanced services. Not only is that necessary
to ensure the adequacy and quality of service delivery, but is a vital basis for any
research and performance improvement. Sufficient resources, such as
administration support, needs to be allocated to the collection of such data from the
outset and be maintained subsequently.
46
ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
As an ACT Health funded service, Calvary lymphoedema staff should have access to
the ACT Health Research Office for advice and support regarding research
processes and publications.
47
9.
Implementation
Implementation of the plan will require a planned and staged process. Implementation should be flexible and adaptive to the changing needs of
lymphoedema consumers and as such service approach and locations may need to be continually assessed, mapped and modified.
The Lymphoedema Services Network will form following the finalization of the steering committee and planning process. The final steering
committee meeting will provide an opportunity to elect a chair for the lymphoedema services network. The role of the network will be to begin
implementation of the plan and to resolve any issues arising. The proposed membership is listed in Appendix 3.
The senior lymphoedema clinician will undertake the role for the continuation of the Lymphoedema Services Network (LSN),
At the end of 2016 and 2018 the Lymphoedema Services Network, coordinated by the senior lymphoedema clinician, will perform a review to
assess the progress of the plan to ensure that effective implementation of the plan is achieved.
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan.
Infrastructure Strategies
Objective One: Establish governance structures to facilitate implementation of Lymphoedema Services Plan
Improvement Action
1.1
Establish ACT Lymphoedema Services Network
Lead
Responsibility
The Senior
lymphoedema
clinician
Timeframe
Funding
Performance Measures
Early 2015
1
Lymphoedema Services
Network governance and
clinical governance
structures implemented –
Patients report improved
clarity and consistency of
services
Funding column legend:
1 = Can be implemented using existing resources
2 = Can be implemented within “Growth” funding
3 = Requires additional recurrent funding
4 = Requires capital funding
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
48
Primary Prevention
Objective Two: That the Lymphoedema Services Network contributes to a planned strategy of integrated chronic disease primary
prevention program focusing on nutrition and physical activity.
Improvement Action
Lead
Timeframe
Funding Performance Measures
Responsibility
2.1
Establish and maintain linkages to ACT Health health
Lymphoedema
2015
1
Lymphoedema Services
promotion strategy development
Services Network
Network contributes to a
planned strategy of
integrated chronic disease
primary prevention
program. Information
pamphlets are developed
and distributed
2.2
Develop targeted health promotion/awareness strategies Lymphoedema
2015
2
Strategies and resources
for high risk groups including low socio-economic status,
Services Network
developed which are
Aboriginal and Torres Strait Islander peoples and their
suitable for culturally and
primary health care providers
linguistically diverse
communities – Consumers
and their care providers
report better access and
awareness
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
49
Early Detection and Secondary Prevention
Objective Three: To provide an optimal integrated service in lymphoedema detection and management.
Improvement Action
Lead
Timeframe
Funding
Responsibility
3.1
Increase community awareness of lymphoedema risk
Lymphoedema
2015/16
1
factors and management of complications and
Services Network
assessment options through establishment of
partnerships and connections with primary health care
providers including GPs and organisations such as
Medicare Local/Primary Health Networks and Dragons
Abreast.
3.2
Improve connections and referral pathways between
services who provide treatment to at-risk individuals such
as cancer surgeons, radiation oncologists and the
Obesity Management Service
Lymphoedema
Services Network
and the senior
lymphoedema
clinician
2015/16
2
3.3
Provide targeted screening services of at-risk individuals
Lymphoedema
Services
2015-2018
2
3.4
Provide support through a variety of strategies to address
information, training and ongoing support for health care
professionals on lymphoedema
2015/16
2
3.5
Ensure increased emphasis on self-management
Lymphoedema
Services Network
and the senior
lymphoedema
clinician
Lymphoedema
Services Network
2015/16
2
Performance Measures
Partnerships established
with organisations
delivering community
awareness programs.
Education groups are run
in more locations, are run
more frequently and
attendance increases
Connections to related
services initiated. Referral
pathways developed –
including information
developed with
HealthPathways. At risk
individuals are referred at
the appropriate time
Screening schedule
developed, increased
referral and uptake of
screening services
resulting in earlier detection
and management for
consumers
Resources developed to
support to GPs and AHPs.
Education sessions are run
for professionals
Resources developed to
improve education and
support and empower
consumer to self manage
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
50
3.6
Integration of lymphoedema management with broader
chronic disease programs – such as the Obesity
Management Service and the ‘towards zero growth’
initiative
Lymphoedema
Services Network
2015/16
2
3.7
Identify partners for network establishment within the
community – both government, non-government and
community organisations
Lymphoedema
Services Network
2015-2018
2/3
3.8
Development of programs that are culturally sensitive
Lymphoedema
Services Network
2015-2018
2
Connections established
and resources developed.
Consumers are referred to
the right services when
required if they choose.
Increased number of
referrals to other services
where appropriate
Network established and
connections established
with organisations.
Improved information
sharing, referral pathways
and outcomes for patients
Programs and resources
developed which are
culturally sensitive
Lymphoedema Services
Objective Four: Establish a sustainable multidisciplinary service to meet needs of lymphoedema outpatients in an environment with
a community health focus
Improvement Action
Lead
Responsibility
Lymphoedema
Services Network
Lymphoedema
Hub/Service
Management
Timeframe
Funding
Performance Measures
2015
2/3
4.2 Establish alternate locations to hospital for outpatient
services and for the lymphoedema hub (e.g. community
health centres)
Lymphoedema
Services Network
2015/16
2
4.3 Provide more accessible management for people
requiring treatment in the inpatient setting
Lymphoedema
Services Network
2015-2018
2/3
Additional staff recruited,
education provided to
community service
providers, sustainable
multidisciplinary service
developed
Lymphoedema outpatient
services moved to
community based settings
where appropriate
Referral pathways
developed and inpatient
patients are able to
4.1 Recruit additional staff: including consideration for
medical specialist requirements, allied health staff, allied
health assistants and administrative services officers to
deliver multidisciplinary services to lymphoedema
patients and provide education across the sector
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
51
access/receive
lymphoedema
management. Increased
inpatient lymphoedema
contact episoldes
Flexible employment
options are offered
4.4 Harness skills of trained people who don’t wish to
participate in the full time workforce.
Lymphoedema
Service
Management
2015
2/3
4.5 Improve and facilitate the dissemination of information
across disciplines and other clinical specialty areas to
enable broader and more accessible services and
improved workforce planning
4.6 Create a care coordination model which would include a
summary/record framework for clinical communication
for patients which is integrated, co-ordinated and used in
collaboration with other services
Lymphoedema
Services Network
2015-2018
2
Resources developed,
methods for education and
support established
Lymphoedema
Services Network
2015-2018
2
4.7 Create, maintain and publish a public list of private
service providers with appropriate lymphoedema
qualifications
Lymphoedema
Services Network
2015
1/2
Framework established
and clinical communication
resources integrated.
Patients information is able
to be shared between
services where appropriate
List of private
lymphoedema services
publicly available
4.8 Collect and maintain a minimum data level which reflects
active patient numbers, screening patient numbers,
lymphoedema stage information, occasions of service
and service location.
Lymphoedema
services and
services network
2015
1/2
ACTPAS clinics setup for
all locations, data
collection and
management SOP
developed and put into
effect
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
52
Research and Education
Objective five: There will be a strong research component across all lymphoedema services within ACT Health supporting and
informing the delivery of clinical lymphoedema services
Improvement Action
Lead
Responsibility
Lymphoedema
Services Network
Timeframe
Funding
Performance Measures
Ongoing
1/2
Opportunities identified
and further connections
established.
Lymphoedema education
being provided
collaboratively
Number of publications
5.1
Identify opportunities to build upon existing education
relationships with universities, CIT, private practice and
other education centres
5.2
Ensure that clinical research is an integral part of relevant
employees’ roles
Ensure that provision of clinical education of staff and
students is an integral part of employees role
Lymphoedema
Services Network
Lymphoedema
Services Network
Ongoing
2/3
Ongoing
2
5.4
Identify and adopt IT infrastructure to support research
and service delivery
Lymphoedema
Services Network
Ongoing
2/3
5.5
Provision for student placements, allied health rotation
and allied health assistants rotation
Lymphoedema
Services Network
Health Directorate
Ongoing
2/3
5.3
Staff involved in educating
activities of students and
other staff
IT infrastructure identified
and adopted where
appropriate
Rotational staff put into
place
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
53
Access and Equity
Objective six: There will be a greater focus on improving access and equity across all lymphoedema services within the ACT and
surrounding regions
Improvement Action
Lead
Responsibility
Lymphoedema
Services Network
Timeframe
Funding
Performance Measures
2018
2/3
Models of care developed
and implemented,
improved access methods
implemented. Remote
individuals are receiving
care with less travel
requirements
Lymphoedema services
network established and
consistent services
provided. Consumables
such as BIS and
electrodes and bandaging
are provided for free as a
part of the service
Referral pathways
developed and inpatient
patients are able to
access/receive
lymphoedema
management. Inpatient
lymphoedema contact
episodes increase
6.1
Develop innovative models of care which consider
methods to improve access for remote individuals such
as E-health or tele-health models.
6.2
Ensure that there is consistency across services provided
and costs to patients across all publicly provided services
Lymphoedema
Services Network
2018
2
6.3
Ensure that patients who are transitioning in and out of
inpatient care have improved access to lymphoedema
services
Lymphoedema
Services Network
2018
2
Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan
54
10. Evaluation
The service will report yearly through the CHCB management structure and the
director of Community Care Program ACTH. Reports will be on services provided,
milestones achieved and current outlook. The service will undergo a major evaluation
review after two years in the second half of 2016. This will include:




Input evaluation reviewing the program structure, referrals, staffing and
resources.
Process evaluation including policy, standard operating procedures, referrals,
intake, case management, patient pathways, communication, team function and
client satisfaction with the process.
Impact evaluation including measures of clinical effectiveness, patient and other
customer satisfaction, and the impact of policy, education and staff and
community development activities. The effect on inpatient numbers will form a
part of this evaluation.
Ongoing evaluation of the activities of the ACT Lymphoedema Services Network
The service will also engage in continuous quality improvement both internally and in
line with ACTH and CHCB quality and safety activities.
The expansion of lymphoedema services provides an excellent opportunity for
research and quality improvement in the management of lymphoedema, service
design and translation of evidence into practice. The service will be involved in
research by working in collaboration with education and research institutions and
private practice among others. Staff and students involved in the service will be
encouraged to participate in quality improvement and research.
55
Abbreviations and Glossary of Terms
ABS
Australian Bureau of Statistics
ACT
Australian Capital Territory
ACTH
Australian Capital Territory Health
AHS
Area Health Service
AIHW
Australian Institute of Health and Welfare
ALA
Australasian Lymphology Association
BMI
Body Mass Index
BIS
Bioimpedence Spectroscopy
CALD
Culturally and Linguistically Diverse
CH
Canberra Hospital
CHH
Clare Holland House
CHC
Community Health Centre
CHCB
Calvary Health Care Bruce
DDGS&C
Deputy Director General of Strategy and Corporate (ACT
Health)
DRG
Diagnosis Related Group
Equiv O’N beds
Equivalent Over Night Bed Days
FTE
Full Time Equivalent
GPMP
General Practitioner Management Plan
HITH
Hospital In The Home
HSPU
Health Services Planning Unit
ILF
International Lymphoedema Framework
ISL
International Society of Lymphology
LSN
Lymphoedema Services Network
MLD
Manual Lymphatic Drainage
56
MLHD
Murrumbidgee Local Health District
NSW
New South Wales
OECD
Organisation for Economic Co-operation and Development
OEP
Opto-electronic perometry
O’NALOS
Over Night Average Length of Stay
OPMDS
Outpatient Minimum Data Set
SNSWLHD
Southern New South Wales Local Health District
TCA
Team Care Arrangement
57
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Ward, LC; Bunce, IH; Cornish, BH; Mrolo, BR; Thomas, BJ and Jones, LC; Multifrequency bioelectrical impedance augments the diagnosis and management of
lymphoedema in post-mastectomy patients. European Journal of Clinical Investigation.
1992, 22, 751-754.
34.
Australasian Lymphology Association: ALA Position Statement - Monitoring for the
early detection of breast cancer related lymphoedema. http://www.lymphoedema.org.au
35.
Stout Gergich, NL; Pfalzer, LA; McGarvey, C; Springer, B; Gerber, LH; and Soballer,
P. Preoperative assessment enables the early diagnosis and successful treatment of
lymphoedema. Cancer 2008 Jun 15;112(12):2809-19
36.
ACT Health – Ambulatory Care Framework 2012. http://www.health.act.gov.au
37. International Lymphoedema Framework: Developing a Lymphoedema Service. 2007.
http://www.lympho.org/
38.
ACT Health – Health Directorate Corporate Plan 2012-2017
http://www.health.act.gov.au
39.
ACT Health – Clinical Services Plan 2014-2018. (Under development)
http://www.health.act.gov.au
40.
ACT Health – ACT Chronic Disease Strategy 2013-2018.
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41.
Soo, JK; Bicanic, TA; Heenan, S; Mortimer, PS; Lymphatic abnormalities
demonstrated by lymphoscintigraphy after lower limb cellulitis. British Journal of
Dermatology, 2008, 158, 1350-1353
42.
Dupuy, A; Benchikhi, H; Roujeau, JC; Bernard, P; Valliant, L; Chosidow, O; Sassolas,
B; Guillaume, JC; Grob, JJ; Bastuji-Garin, S; Risk Factors for erysipelas of the leg (cellulitis):
case-control study. BMJ 1999, 318, 1591-1594
43.
Cox, NH; Oedema as a risk factor for multiple episodes of cellulitis/erysipelas of the
lower leg: a series with community follow-up. British Journal of Dermatology, 2006, 155, 947950
44.
Welsh Government - Strategy for lymphoedema services in Wales, designed for
lymphoedema (2009) http://www.wales.gov.uk/
45.
Ward, LC; Czerniec, S; & Kilbreath, SL; Operational Equivalence of Bioimpedance
Indices and Perometry for the Assessment of Unilateral Arm Lymphoedema. Lymphatic
Research and Biology. June 2009, 7(2): 81-85.
46.
Moseley, AL; Piller, N; Cariati, C; Combined opto-electronic perometry and
bioimpedence to measure objectively the effectiveness of a new treatment intervention for
chronic secondary leg lymphoedema. Lymphology, 35, 4 (2002).
47.
Armer, ML; Stewart, BR; A comparison of four diagnostic criteria for lymphoedema
in a post-breat cancer population. Lymphatic Research and Biology, 2005, 3(4), 208-217
48.
Morgan, P & Moffatt, C; The Lymphoedema Framework Project (2006) The
National Lymphoedema Supplement.
49.
Lymphoedema Ireland – Submission to the expert panel on medical need for
medical card eligibility http://www.lymphireland.com/
60
50.
St Oswald’s Hospice – St Oswald’s Hospice Quality Account 2013
http://www.stoswaldsuk.org/
51.
Sneddon, MC: Lymphoedema: service provision and needs in
Scotland. (2008) Project Report. University of Glasgow.
52.
Birkballe, S; Karlsmark, T; Noerregaard, S & Gottrup F. A new concept of a
multidisciplinary lymphoedema centre: established in connection to a department of
dermatology and the Copenhagen wound healing centre. British Association of
Dermatologists 2012, 167, pp116-122.
53.
ACT Health – Multicultural Coordinating Framework. http://www.health.act.gov.au
61
APPENDICES
Appendix 1: Principles behind the Lymphoedema Services
Background Paper and Implementation Plan
ACT Health
Ambulatory Care
Principles
Patient Centred
Lymphoedema Services Background Paper and Implementation Plan key
Elements






Multidisciplinary
and Collaborative



Accessible




Safe and High
Quality







Population Health

Efficiency of service and patient centred care
Informed choice and discussion of treatment options
Maintaining independence
Confidentiality and respect.
Patients should be encouraged to play an active role in their management
and treatment.
Patients with Chronic Lymphoedema should have the opportunity to find
work and if needed, assistance should be provided to help them achieve
this objective.
Patients should be provided with appropriate access to multidisciplinary
care and GP care.
When a patient presents to a service requiring related Cancer treatment
(i.e. treatment affecting the lymph nodes), a referral should be made to the
lymphoedema service as soon as possible to allow pre-operative baseline
measurements to be taken.
When a patient presents with morbid obesity, a referral should be made to
the lymphoedema service for assessment.
Early referral and early assessment and management
Waiting period for treatment should be in accordance with clinical priority
policy which should reflect clinical need.
Patients with lymphoedema should receive appropriate treatment
regardless of health insurance status.
Transport to and from the lymphoedema service would normally be the
responsibility of the individual, service options should be considered for
those who cannot afford the cost of transport or are unable to access
transport.
Adequate treatment facilities and appropriately trained staff
Best practice and total patient care.
Compression therapies should be explained and the restrictions on lifestyle
understood by patients before a decision is made on which treatment to
use.
Patients should be fully informed about the importance of diet and healthy
weight and be referred for further diet management if required.
Patients should be fully informed about the importance of exercise and
healthy weight and be referred for further exercise management if required.
Patients should be able to choose whether to accept or refuse treatments
that are offered and should have palliative care offered as a treatment
option if required.
Health care professionals should be vigilant for possible complications and
risks and should monitor to avoid adverse outcomes
Early lymphoedema diagnosis.
1
Approach



Reducing the risks associated with progression of Lymphoedema
Both short and long term planning to provide the necessary infrastructure
for care of patients should include consumer input
Increased involvement of GPs and AHPs in education for persons at risk
2
Appendix 2: Lymphoedema Workforce Plan
Lymphoedema Workforce Plan
[VERSION 1.4]
1
Lymphoedema Workforce Plan
CONTENTS
1.
Background
4
2.
Current Structure
4
3.
Analysis of Workforce Skills
5
4.
Future Structure
6
5.
Education / Qualification Requirements
7
6.
Issues and Challenges
8
2
Review and Amendment History:
Version number
Issue date
Details
Version 1.0
Initial Draft
completed by WPPU
following the
Workforce Planning
Subcommittee
Version 1.1
Incorporating
collaborated input
with HSPU and
WPPU
Version 1.2
11 Nov 2014
Incorporating input
from:
ALA President,
Wound management
Nurse Practitioner, &
Director of
Physiotherapy CHCB
Version 1.3
22 January 2015
Incorporating input
from HSPU manager
Version 1.4
20 February 2015
Incorporating input
from:
Director of
Physiotherapy CHCB,
& Lymphoedema
Steering Committee
Author
3
Background
This Lymphoedema Workforce Plan has been developed by the ACT Health
Workforce Policy and Planning Unit in conjunction with the Health Services Planning
Unit. Consultation was also undertaken with members of the Lymphoedema Steering
Committee and division representatives through a workforce workshop.
Strategic workforce planning concepts aimed at improving efficient and effective
service delivery by the expert workforce are considered in this workforce plan. This
plan has been developed as part of the review of the ACT lymphoedema services
and the ACT Government allocation of growth funds for the service. The funds
required for workforce, taking into consideration the growth of services and
associated costs provides a benchmark of a maximum of 70% of the growth funding
be spent on FTE increase, enabling the remainder of the funds to provide capacity to
deliver services e.g. equipment, operational, education & system support costs.
The highest cost involved with delivery of expanded services is the creation of a
critical mass of expert clinicians. Therefore, it is important that an increase in the total
workforce numbers is balanced by a focus on efficiency in delivery of services across
ACT in multiple settings to support the new Lymphoedema framework (ACT
Lymphoedema Service Plan- Section 11).
Current Structure
The current workforce model (Table 1) with 1.75 full time equivalent (FTE) “expert”
staff at Calvary Hospital, 0.5 FTE “expert” staff at Canberra Hospital and 0.2 FTE
“expert” at Clare Holland House (CHH) is not sustainable for the new service delivery
model.
Table 1: Current Staff Disbursement
Calvary Hospital
Clare Holland House
Canberra Hospital
1.75 FTE = 64.3 hours
per week
0.2 FTE = 7.35 hours per
week
0.5 FTE = 18.4 hours per
week
Waiting lists to access the Lymphoedema Service typically vary from 2 weeks for
high priority patients, 7-9 weeks for medium priority patients and 6 months for low
priority patients. This service model will aim to reduce the wait for services and
provide non-complex care closer to the home with complex care being managed at a
designated hub within the ACT.
4
Analysis of Workforce Skills
As at November 2014, ACT Lymphoedema Service has a total of 2.45 FTE clinicians
located across Calvary Public Hospital, Canberra Hospital and CHH.
The analysis in the Lymphoedema Background Paper and Implementation Plan
2015-2018 has identified the need for an increase of up to 3.30 FTE (including up to
1 FTE administrative support) to a total of 5.75 FTE (see Figure 1). This increase will
provide capacity for the service to have a multidisciplinary team with partial FTE
capacity for management and education of the broader team. The provision of up to
1 FTE administrative support will enable expert clinicians to be fully focussed on
clinical roles.
Figure 1: Staff Disbursement
Centralised Hub
Hospital/Inpatient
Community
Up to 5.75 FTE total including:
Lead clinician / manager /
educator/ patient planner (up to
1 FTE)
Specialised trained staff (3.70
FTE)
Administration Assistant (up to
1FTE)
0.05 FTE dietician
Education
Bandage skill sets
Service provision
Community outreach
services via rostered service
provision from the Hub
Education
Nurse – bandaging skills
Regional staff connections
and education
The proposed service expansion includes funding for 0.05 FTE to engage a dietician
for one four-hour session monthly in the multidisciplinary Lymphoedema Clinic for
complex cases. This is as a result of consultation with the current expert group who
have identified the need to have a dietician involved with the clinic. This will allow an
opportunity for patients to have a consultation and assessment as obesity is a major
co-morbidity with the disease.
The existing funding to Canberra Hospital and Health Services (0.5FTE) for the
delivery of lymphoedema clinicians at Canberra Hospital may require a Service Level
Agreement to clarify the contract / employee responsibility and the connection to the
Hub e.g. specified hours for training and support. It is expected that this position will
shift to performing an inpatient function and outpatient services will shift to the
community health centres, managed by the Hub.
5
Future Structure
The proposed workforce “Hub and Spoke” model (Figure 2), has the lymphoedema
service located as the centre of the model, the Hub (located at Calvary Hospital), with
concentric circles radiating from the Hub to encompass hospital inpatients and then
community-based clients.
Figure 2: Hub and Spoke Model:
COMMUNITY
HOSPITAL
HUB
INPATIENTS
The model will be innovative in the approach to employment arrangements, and will
involve staff being rostered to multiple locations whilst contracted to the organisation
providing the “Hub services”. The rotational employees will be based at the Hub and
then rostered to work at differing locations as per the needs of the community, for
example, Monday – Tuggeranong Health Centre, Tuesday - Gungahlin Health
Centre, Wednesday – Tuggeranong Health Centre, Thursday – Gungahlin Health
Centre, Friday – Hub, including multidisciplinary Lymphoedema Clinic.
To ensure adequate support is provided to staff delivering lymphoedema services
through the Hub and to ensure consistent services to patients, it is proposed that
staff will utilise rooms at one health centre on the north side and one on the south
side. This will be assessed and flexibly managed by the Lymphoedema Services
Network, proposed in the Lymphoedema Background Paper and Implementation
Plan, to ensure that the service is not stretched to provide services at too many
locations while still providing patient centred care closer to the patient’s home.
The provision of an expert workforce who are able to be rostered on a rotational
basis to Community Health Centres and hospital inpatient services will allow for the
improved delivery of services, as well as ongoing support and education for staff
such as wound care nurses.
In other jurisdictions throughout Australia, either Occupational Therapists or
Physiotherapists act as the Lead Clinician role for lymphoedema services (see
National
Lymphoedema
Practitioner
Register
(NLPR)
guidelines
at:
http://www.lymphoedema.org.au/ALA/About_The_Register/NLPR_Guidelines/ALA/A
bout_the_Register/NLPR_Guidelines.aspx?hkey=25e8f9a2-06b7-49bd-a6b9b417c95e7b47 )
The management structure will need to be flexible to enable the possibility of this
multidisciplinary team approach.
6
Community referrals are currently all processed through Community Health Intake;
lymphoedema referrals will also follow this process and be forwarded to the Hub for
triaging. Referral will be accepted from GPs and health professionals as well as
through self-referral. As appropriate, patients identified as non-complex will be
scheduled for assessment at one of the identified community locations; complex
cases will be managed at the Hub and referred to community locations when
appropriate. Referral to private practice will be actively considered for each patient.
Referrals to other services are an important pathway as obesity and other comorbidities often run concurrently with lymphoedema. The general referral pathway
to a dietitian has a reported approximate 6 week wait. Utilising some of the funding to
have a dietitian attend the Lymphoedema Clinic at Calvary Hospital on a monthly
basis would be beneficial, as discussed above.
Patients requiring input from other disciplines such as exercise physiology or
psychology will also benefit from improved referral pathways to existing services.
These referral pathways will be developed by the Lymphoedema Services Network.
For the purposes of succession planning, consideration should be given to a
continued rotational “training position” for either a Physiotherapist or Occupational
Therapist who may in the future undergo external specialist training. This position
would be based at the Hub.
Education / Qualification Requirements
In order to provide a sustainable service, the Hub will be managed by a lead clinician
who will also coordinate and provide education to staff within the lymphoedema
service and other relevant stakeholders. The lead clinician/s will be required to have
completed as a minimum the Level 2 Australasian Lymphoedema Association (ALA)
accredited course. The National Lymphoedema Practitioner Register (NLPR)
guidelines state that the course is open to all Allied Health Professionals, Nursing
and Medical staff who have Australian Health Practitioner Regulation Agency
registration as a pre-requisite.
Expert clinical staff should have a minimum of a Level 1 ALA accredited course and
be eligible for NLPR registration.
5.1
Compression bandaging
Applying compression bandaging to many lymphoedema patients is vital to
ensure good outcomes. This is highly skilled work that can have severe
adverse outcomes if performed incorrectly. Community nurses bandage to the
knee level for lymphoedema patients; nurses working in ACT hospitals are not
providing compression bandaging or Coban treatment. The education
component for bandaging provided by staff is very important as the benefits
flow on to the patient in many ways and also assist wound management.
The skill of bandaging is not in the university curriculum for most trainee
nurses. Community nurses in the Community Care Program are educated and
credentialed in applying compression bandaging in their first two weeks of
orientation to the community. It would greatly benefit patients if nurses in the
acute care setting are also skilled in applying compression bandaging to ensure
best practice and continuum of care.
Currently wound education modules are run monthly for nursing staff and there
are a number of workshops, including half-day workshops on compression
7
bandaging at the Staff Development Unit. ACT Health and Calvary facilities
may benefit by having these education sessions occurring regularly at ward
level and identifying and educating a Clinical Champion from each ward.
5.2
Compression garments
Compression garments are a fundamental treatment of patients with long-term
lymphoedema or for some patients with Deep Vein Thrombosis (DVT).
Assessing and measuring for compression garments is a highly specialised
skill, currently being provided by trained clinicians at Calvary and Canberra
Hospitals.
Thromboembolism-deterrent (TED) stockings play no role in managing
lymphoedema or chronic venous hypertension. They are merely a prophylaxis
as opposed to compression garments that provide therapeutic treatment.
Patients who have had DVT may require compression garments for a number
of years. This highly specialised service is currently provided by Charnwood
Pharmacy who have three staff trained in the process.
Issues and Challenges
Table 2 lists issues and challenges identified by stakeholders, with mitigation
strategies aimed at reducing the risk associated with these issues and challenges.
8
Table 2: Issues and Challenges
Issues and challenges
Operational Challenges
Additional professional
requirements if the
Lymphoedema Service employs
more than one discipline under
the one line manager.
Currently 1 staff member is
employed at Canberra Hospital
and Health Services and has a
0.5 FTE. The main concern is this
staff member is unsupported and
there is no succession planning.
Recruitment time frames are slow
and utilising funds in the 2014/15
financial year would be beneficial.
A Service Level Agreement is
required to enable staff employed
by Calvary to work at multiple
Community Health Centres
across the ACT.
Existing physical barriers/silos
between ACT Health & CHCB, as
Risk mitigation strategies
Person responsible
Physiotherapists who work in the ‘Hub’ are currently governed by the
Director of Physiotherapy at Calvary Health Care Bruce (CHCB).
Lymphoedema training through Australasian Lymphology Association is
not discipline-specific and as a result lymphoedema professionals may
come from professional disciplines other than Physiotherapy. The
Director of Physiotherapy will therefore be responsible for ensuring that
all registration & other professional requirements are met and may have
to liaise with the relevant discipline heads (eg. Director of Occupational
Therapy).
Acute Support Physiotherapy have provided further information to
advise that there are two staff members employed to perform a total of
0.5FTE of lymphoedema support. This helps to manage issues of
succession planning.
These staff members would continue to work from CHHS and manage
a lymphoedema case-load and report to the hub for team meetings,
education and support. A Service Level Agreement for lymphoedema
services will be developed between ACT Health and Calvary Health
Care Bruce.
Health Services Planning Unit (HSPU) is working collaboratively with
stakeholders to try to facilitate efficient processes to complete the
services plan and enable subsequent recruitment to occur.
The Workforce Plan and Lymphoedema Services Background Paper
and Implementation Plan 2015-2018 outline the concepts underpinning
the cross-service provision of care. Health Services Planning Unit will
collaborate with CHCB and ACTH executives to develop a Service
Level Agreement.
Executive Directors and division managers supporting this model will
assist in breaking down these barriers/silos; the Service Level
Relevant Executive to the
Director of Physiotherapy,
CHCB
Relevant ACTH and CHCB
Executives
HSPU
Relevant ACTH and CHCB
Executives
Relevant ACTH and CHCB
executives and managers
9
well as inpatient & communitybased services.
Room availability to deliver
services and store equipment at
Community Health Centres will
need to be sourced
Agreement will incorporate a collaborative partnership between ACT
Health & CHCB and between inpatient & community-based services.
HSPU has met with executives and managers to begin the process of
identifying potential service locations and required resources for this
purpose. This will need to be progressed by the lymphoedema service
manager/lead clinician and Lymphoedema Services Network as a part
of implementation.
Information Technology Challenges
Information Technology issues
HSPU and WP&PU have met with the E-Health department to discuss
exist on a practical level in terms
this issue. Calvary staff will be able to be set up with access to the ACT
of login access & ACTPAS
Health instance of ACTPAS as a part of implementation of the service.
functionalities. Calvary staff are
The lymphoedema service manager/lead clinician will work
unable to log in within ACT Health collaboratively with Calvary and ACT Health IT staff to enable this to
facilities and they do not have
occur.
access on ACTPAS to patients
registered by ACT Health staff or
to any clinics set up by ACT
Health.
CHHS physiotherapy staff who
This issue can be similarly managed to above.
are currently required to work
away from the hospital are given
multiple ACTPAS identities to
assist with access issues and to
ensure data captured is the right
cost centre. This is more difficult
with Calvary IT.
Staff are unable to access
As above, the lymphoedema service manager/lead clinician will work
Concerto and CRIS and both of
collaboratively with the E-Health and Clinical records unit to work
these programs would benefit
through this issue as a part of implementation.
staff access to patient details.
Other Challenges
The skill of bandaging has
WP&PU are corresponding with Judith Barker, Nurse Practitioner in
Lymphoedema Services
Network and Lymphoedema
service manager/lead
clinician.
Lymphoedema service
manager/lead clinician & EHealth Support.
Lymphoedema service
manager/lead clinician & EHealth Support.
Lymphoedema service
manager/lead clinician & EHealth Support.
WP&PU
10
dropped off the agenda for trainee
nurses. Nurses in the acute care
setting need to be trained and
credentialled in compression
bandaging.
Service gap at Calvary John
James Hospital.
The newly opened Obesity
Management Service (OMS) at
Belconnen Health Centre is
reported to have closed its books
one month after opening due to
high demand which may delay the
referral process to dietitians.
Staff transport between locations
including vehicle and taxi
requirements is a concern at
CHCB where these resources are
not readily available.
Wound Management, to assess whether an increase in education can
occur.
The Lymphoedema Services Network may make connections with
Calvary John James to establish opportunities for collaboration or
education.
Correspondence with staff at the OMS has indicated that they are still
receiving new referrals. The implementation of a dietician in the
Lymphoedema Clinic may help to reduce the impact of any potential
delays in the referral processes.
Lymphoedema Services
Network
Staff will be rostered for shifts at different buildings, therefore reducing
the need to have vehicle and taxi subsidy. Budgeted resources may
need to be utilised for taxi or vehicle use at times when transport is
required.
Lymphoedema service
manager/lead clinician
Lymphoedema service
manager/lead clinician
11
Appendix 3: Proposed ACT Lymphoedema Services Network
representation
ACT Health – Hospital and Health Services representative
ACT Health – Aged Care & Rehabilitation Services representative
Health Care Consumers Association – ACT Consumer representation
Primary Health Networks representative (previously Medicare Local)
Greater Southern Area Health Service representative
ACT Health - Allied Health Representative
ACT Health - Nursing Representative
Calvary health Care Bruce - Hospital representative
SNSW LHD representative
M LHD representative
Non-government organisation representative
Clinical representatives
Private practice representative
The above proposed membership list is indicative only and will be amended by the
Lymphoedema Service Network once established.
1