ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018
ACT Lymphoedema Services Plan
Background Paper and Implementation
2015 – 2018
March 2015
Version Control:
Version / Date / Modifications1.1 / 11/08/2014 / Initial draft for SC meeting 2
1.2 / 19/08/2014 / Incorporate Steering Committee Comments as outlined in SC meeting 2 Minutes
1.3 / 22/09/2014 / Incorporate out of session Steering Committee
1.4 / 09/10/2014 / Incorporate comments and structure adjustments from HSPU Senior Manager
1.5 / 11/11/2014 / Incorporate comments from EC
1.6 / 16/12/2014 / Consultation draft – including DG and CM adjustments
1.7 / 20/1/2015 / Comments from public consultation
GP Advisor
HCCA
Private practitioner
Consumers
ED WP&P
1.8 / 11/02/2015 / Comments from Steering Committee Meeting
1.9 / 26/02/2015 / Comments from Steering Committee out of session
2.0 / 18/03/2014 / Endorsed Final by ACT Health Executive Council
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
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
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
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.
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.
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:
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:
· 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 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.