Renal Health Services Plan

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 Modifications 1.1 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 Comments from public consultation 20/1/2015 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

2 ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018

Table of Contents

3 Part 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

Part 2 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

5 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.

Part 3 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

7 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.

Part 4 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.

Part 5 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 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

9 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.

Part 6 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.

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:

 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.

Part 7 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.

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, 11 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

Part 8 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 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 lymphoedema45- 47. 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 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.

13 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.

Part 9 Table 1 – Public lymphoedema services in ACT Location Services provided Number of staff funded for lymphoedema (FTE) Monthly multidisciplinary clinic Monthly education sessions Calvary Hospital 1.75 Physiotherapists Outpatient lymphoedema physiotherapy (Monday-Friday)

Clare Holland Physiotherapy for admitted patients and 0.2 Physiotherapist House Home Based Palliative Care Services

2013-14 0.4 Physiotherapist Outpatient lymphoedema service, Canberra Hospital 0.1 Occupational Therapist occasional inpatient support 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

15 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.

Part 10 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.

Part 11 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.

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.

Part 12 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.

Part 13 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.

Part 14 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

17 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.

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.

19 6. Trends and projections - Demand for Lymphoedema Services Part 15

Part 16 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.

Part 17 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.

Part 18 Table 2: ACT Lymphoedema Services Part 19 Occasions of Service by Hospital by Year

2010/1 2011/1 2012/1 2013/14 1 2 3 Calvary Physiotherapy Lymphoedema 1,289 1,337 702 943 Hospital Lymphoedema Clinic 196 142 42 52 Group Education Classes 80 23 62 48 (Participants)

Total Outpatient 1,565 1,502 806 1043

Canberra Physiotherapy Lymphoedema 143 191 208 Hospital OT Lymphoedema 53 Total Outpatient 143 191 261

Calvary Service events provided to 39 12 Hospital inpatients

CHH home visits (estimated) 72 71 84 CHH inpatients (estimated) 100 113 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.

21 The average direct time per consultation for Calvary Hospital lymphoedema 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).

Part 20 Table 3: ACT Lymphoedema Services Part 21 Occasions of Service by Age Group – 2013/14

Age Canberra Calvary ACT % Age group Hospital Hospita Total Group l of Total 0-9 7 0 7 1% 10-19 0 0 0 0% 20-29 3 8 11 1% 30-39 6 28 34 3% 40-49 37 172 209 16% 50-59 34 228 262 20% 60-69 76 311 387 30% 70-79 58 169 227 17% 80-89 35 124 159 12% 90+ 5 3 8 1% Total 261 1,043 1,304

Part 22 Table 4: ACT Lymphoedema Services Part 23 Occasions of Service by Place of Residence – 2013/14

State Locality Canberr Calvary ACT a Hospital Total Hospital ACT ACT 212 848 1,060 ACT Not Further Defined 2 2 (blank) 2 26 28 ACT Total 214 876 1,090 NSW Yass 4 48 52 Queanbeyan 18 21 39 Potato Point 2 2 Karabar 2 2 Tathra 2 2 Bywong 4 4 Eurobodalla 13 13 Goulburn 13 13 Yarrowlumla Pt A 13 13 Cooma-monaro 2 10 12 Batemans Bay 7 7 Braidwood 6 6 Harden 8 8 Bega Valley 7 7 Boorowa 7 7 NSW NFD 6 6 Young 4 4 Shoalhaven 3 3 (blank) 3 3 Snowy River 1 1 NSW Total 47 157 204 Other AUST Not Further Defined 10 Total all 261 1,033 1,304 % ACT of Total 82% 85% 84% % NSW of Total 18% 15% 16% Part 24

Part 25 Table 5: ACT Lymphoedema Services Part 26 Occasions of Service by Clinic by Visit Type – 2013/14

Educ. % Visit type (excl PT Lymphoedema Clinic OT Lymphoedema Clinic Lymphoedema Clinic Physio Lymphoedema Group groups) OOS Type of OOS DIREC Av OOS DIREC Av OOS DIRE Av OOS DIRECT Av Visit T Units Direct T Units Direct CT Direct Units Of Direct Of Units Of Units Units Units Service Units Service Of Service Of Of Of (mins) Of (mins) Service (mins) Servic Servic Service Service (mins) e e (mins) (mins) (mins) (mins) Initial Consult 45 2,985 66 45 4% New - Long 39 3,510 90 34 1,717 51 133 11,844 89 206 16% New - Short 6 418 70 6 0% Review 169 10,140 60 19 959 50 7 451 64 795 51,003 64 990 79% Follow Up 1 74 74 1 0% Walk-In 8 343 43 8 1% Group 48 48 Total 208 13,650 66 53 2,676 50 52 3,436 66 943 63,682 68 48 1,304 Total individual occasions of service 1,256

Part 27

Part 28 Table 6: ACT Lymphoedema Services Part 29 Full time equivalent staff to patient ratio – 2013/14

Location Staff Patients Ratio Calvary Hospital 1.75 363 1:207

Canberra Hospital 0.1 30 1:300 Occupational therapy Canberra Hospital 0.4 73 1:183 Physiotherapy Total Lymphoedema 0.5 103 1:206 Service – Canberra Hospital

Part 30 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.

Part 31 Part 32 Table 7: Calvary Hospital Physiotherapy Lymphoedema – Part 33 Waiting List Information Data Source: ACTPAS

ACTPAS Cat 1 ACTPAS Cat 2a ACTPAS Cat 2 ACTPAS Cat 3 Total High-Medium Medium-Low No. of Urgent High Priority Priority Priority patients on Response Time: 4 Response Time: 24- Response Time: Response Time: Waiting Hrs 48 Hrs Up to 6 weeks Up to 2 months List Month No. of Current No. of Current No. of Current No. of Current patients Waiting patients on Waiting patients Waiting patients Waiting on Time waiting list Time on Time on Time waiting waiting waiting list list list 1 6 - 7 May-14 N/A N/A 2 weeks 53 8 weeks 7 61 suspended months

8 - 10 6 Jun-14 Nil N/A Nil 2 weeks 37 7 44 weeks months 7 - 9 6 Jul-14 Nil N/A Nil 2 weeks 26 7 33 weeks months 9-12 4-5 Aug-14 Nil N/A Nil 2 weeks 45 8 53 weeks months

Part 34

Part 35 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 .

Part 36 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 HIT Othe Tota HIT Othe Tota HIT Othe Tota Year H r l H r l H r l % 2013/1 4 5 27 32 8 9 17 13 36 49 2 2012/1 3 4 23 27 12 5 17 16 28 44 3 2011/1 2 4 35 39 9 2 11 13 37 50 2 2010/1 1 8 27 35 8 11 19 16 38 54 3

Primary Diagnosis - Cellulitis Canberra Hospital Calvary Hospital ACT Public Total Fin HIT Othe Tota HIT Othe Tota HIT Othe Tota Year H r l H r l H r l % 2013/1 4 80 303 383 138 112 250 218 415 633 3 2012/1 3 61 306 367 142 114 256 203 420 623 3 2011/1 2 37 242 279 133 127 260 170 369 539 3 2010/1 1 26 253 279 125 122 247 151 375 526 2

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.

Part 37 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

Primary Diagnosis: Lymphoedema Canberra Hospital Calvary Hospital ACT Public Total Bed HITH Bed HITH Bed HITH Stay Type Episodes days days Episodes days days Episodes days days Day Only 5 5 0 2 2 0 7 7 0 Overnight 27 218 35 15 75 31 42 293 66 Total 32 223 35 17 77 31 49 300 66 % day only 16% 12% 14% O'N ALOS 6.8 2.9 5.4 Equiv O'N beds 0.6 0.1 0.7

Primary Diagnosis: Cellulitis Canberra Hospital Calvary Hospital ACT Public Total Bed HITH Bed HITH Bed HITH Stay Type Episodes days days Episodes days days Episodes days days Day Only 39 39 0 30 30 0 69 69 0 Overnight 344 2,024 461 220 1,434 769 564 3,458 1,230 Grand Total 383 2,063 461 250 1,464 770 633 3,527 1,230 % day only 10% 12% 11% O'N ALOS 4.5 3.0 4.0 Equiv O'N beds 5.0 2.1 7.2

Part 38 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.

 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 29 ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018

Part 39 Table 10: ACT Lymphoedema Services - Projected Activity Part 40 Occasions of Service/Service Events by Year Hospital Clinic/Service Status 2013/1 Waitin Adjusted 2021/2 2021/2 4 g List Baseline 2 Min. 2 Max. Adj. Growth Growth Calvary Physiotherapy existin 943 148 1,091 1,229 1,540 Hospital Lymphoedema g existin 52 52 59 73 Lymphoedema Clinic g Additional Physiotherapy - new 304 304 prevented inpatient activity Total Outpatient 995 148 1,143 1,288 1,614

Group Education Classes existin 6 6 7 8 (No.) g Group Education Classes existin 48 48 54 68 (Participants) g

Service events provided to 267 319 319 inpatients new

CHH home visits existin 84 84 95 119 (estimated) g existin 94 94 106 133 CHH inpatients (estimated) g

Canberra Physiotherapy existin 208 208 234 294 Hospital Lymphoedema g existin 53 53 60 75 OT Lymphoedema g Additional Physiotherapy - new 465 465 prevented inpatient activity Total Outpatient 493 0 760 1,340 1,480

Service events provided to 415 495 495 inpatients new Total ACT public activity (excluding group 1,666 148 2,763 3,642 4,159 sessions) Variance to 2013/14 1,976 2,493 % Variance to 119% 150% 2013/14

Part 41 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. 30 ACT Lymphoedema Background Paper and Implementation Plan 2015 - 2018

Service St Catchment Patients Occasions Waiting list aff population of service

ACT including 2. 617,071 423 + 1430 Up to 6 months CH, CHH & 65 patients not CHCB F identified at T CH E

Monash Health 1 Undefined 700 ongoing 1291 6-8 weeks F 500 Breast T screening E

Royal Hobart 1 ~250,000 80-90 + one Unknown 1-2 weeks Hospital F off T screening E

Goulburn Valley 6 Undefined 100-110 Unknown 2-4 weeks Health hr patients/yea s / r w ee k = 0. 16 F T E Greenwich 0. Lower north Unknown ~84 / year None currently 2 shore

Part 42 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

Part 43 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.

Part 44 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

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.

Part 45 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

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.

Part 46 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.

Part 47 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

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

Part 48 7.1 Primary Prevention Part 49 Objective: That lymphoedema services contribute to a planned strategy of integrated chronic disease primary prevention program focusing on nutrition and physical activity. Part 50 Part 51 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.

Part 52 7.2 Early Detection and Secondary Prevention Part 53 Objective: To provide an optimal integrated service in lymphoedema detection and management. Part 54 Part 55 Actions:  Increase community awareness of lymphoedema risk factors and management of complications and assessment options through

establishment 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).

Part 56 7.3 Lymphoedema Services Part 57 Objective: Establish a sustainable multidisciplinary service to meet needs of lymphoedema patients in an environment with a community health focus. Part 58 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.

 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.

Part 59 7.4 Research and Education Part 60 Objective: There will be a strong research component across all lymphoedema services within the ACT supporting and informing the delivery of clinical lymphoedema services.

Part 61 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.

Part 62 7.5 Access and Equity Part 63 Objective: There will be a greater focus on improving access and equity across all lymphoedema services within the ACT and surrounding regions

Part 64 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. 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.

Figure 1 – Lymphoedema Framework

Part 65 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.

Part 66 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.

Part 67 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 cancer survivors and as such these connections should consider the equity of access for other minority community groups.

Part 68 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.

Part 69 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.

Part 70 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.

Part 71 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. 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.

Part 72 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.

Part 73 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 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

Part 74 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.

Part 75 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 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.

Part 76 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.

Part 77 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.

Part 78 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.

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.

Part 79 Infrastructure Strategies Part 80 Objective One: Establish governance structures to facilitate implementation of Lymphoedema Services Plan

Part Part 82 Improvement Action Part 83 Lead Responsibility Part Part 85 Funding Part 86 Performa 81 84 nce Measures Timef r a m e 1. Establish ACT Lymphoedema The Senior lymphoedema clinician Early 1 Lymphoedema 1 Services Network 2015 Services Network governance and clinical governance structures implemented – Patients report improved clarity and consistency of services 48 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan 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

49 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Part 87 Primary Prevention Part 88 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. Par Part 90 Improvement Action Part 91 Lead Responsibility Part Part 93 Funding Part 94 Performa t 89 92 nce Measures Timef r a m e 2.1 Establish and maintain linkages to ACT Lymphoedema Services Network 2015 1 Lymphoedema Health health promotion strategy Services Network development contributes to a planned strategy of integrated chronic disease primary prevention program. Information pamphlets are developed and distributed 2.2 Develop targeted health Lymphoedema Services Network 2015 2 Strategies and promotion/awareness strategies for resources developed high risk groups including low socio- which are suitable for economic status, Aboriginal and Torres culturally and Strait Islander peoples and their linguistically diverse primary health care providers communities – Consumers and their care providers report better access and awareness

Part 95

50 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Part 96 Early Detection and Secondary Prevention Part 97 Objective Three: To provide an optimal integrated service in lymphoedema detection and management. Par Part 99 Improvement Action Part 100 Lead Responsibility Part Part 102 Funding Part 103 Performa t 98 101 nce Measures Timef r a m e 3.1 Increase community awareness of Lymphoedema Services Network 2015/ 1 Partnerships lymphoedema risk factors and 16 established with management of complications and organisations assessment options through delivering community establishment of partnerships and awareness programs. connections with primary health care Education groups are providers including GPs and run in more locations, organisations such as Medicare are run more Local/Primary Health Networks and frequently and Dragons Abreast. attendance increases 3.2 Improve connections and referral Lymphoedema Services Network and 2015/ 2 Connections to pathways between services who the senior lymphoedema clinician 16 related services provide treatment to at-risk individuals initiated. Referral such as cancer surgeons, radiation pathways developed oncologists and the Obesity – including Management Service information developed with HealthPathways. At risk individuals are referred at the appropriate time 3.3 Provide targeted screening services of Lymphoedema Services 2015- 2 Screening schedule at-risk individuals 2018 developed, increased referral and uptake of screening services resulting in earlier detection and 51 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan management for consumers 3.4 Provide support through a variety of Lymphoedema Services Network and 2015/ 2 Resources developed strategies to address information, the senior lymphoedema clinician 16 to support to GPs and training and ongoing support for health AHPs. Education care professionals on lymphoedema sessions are run for professionals 3.5 Ensure increased emphasis on self- Lymphoedema Services Network 2015/ 2 Resources developed management 16 to improve education and support and empower consumer to self manage 3.6 Integration of lymphoedema Lymphoedema Services Network 2015/ 2 Connections management with broader chronic 16 established and disease programs – such as the resources developed. Obesity Management Service and the Consumers are ‘towards zero growth’ initiative referred to the right services when required if they choose. Increased number of referrals to other services where appropriate 3.7 Identify partners for network Lymphoedema Services Network 2015- 2/3 Network established establishment within the community – 2018 and connections both government, non-government and established with community organisations organisations. Improved information sharing, referral pathways and outcomes for patients 3.8 Development of programs that are Lymphoedema Services Network 2015- 2 Programs and culturally sensitive 2018 resources developed which are culturally sensitive

52 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Part 104 Lymphoedema Services Part 105 Objective Four: Establish a sustainable multidisciplinary service to meet needs of lymphoedema outpatients in an environment with a community health focus

Part Part 107 Improvement Action Part 108 Lead Responsibility Part Part 110 Funding Part 111 Performa 106 109 nce Measures Timef r a m e 4. Recruit additional staff: including Lymphoedema Services Network 2015 2/3 Additional staff 1 consideration for medical specialist Lymphoedema Hub/Service recruited, education requirements, allied health staff, allied Management provided to health assistants and administrative community service services officers to deliver providers, sustainable multidisciplinary services to multidisciplinary lymphoedema patients and provide service developed education across the sector 4. Establish alternate locations to hospital Lymphoedema Services Network 2015/ 2 Lymphoedema 2 for outpatient services and for the 16 outpatient services lymphoedema hub (e.g. community moved to community health centres) based settings where appropriate 4. Provide more accessible management Lymphoedema Services Network 2015- 2/3 Referral pathways 3 for people requiring treatment in the 2018 developed and inpatient setting inpatient patients are able to access/receive lymphoedema management. Increased inpatient lymphoedema contact episoldes 4. Harness skills of trained people who Lymphoedema Service Management 2015 2/3 Flexible employment 4 don’t wish to participate in the full time options are offered 53 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan workforce.

4. Improve and facilitate the Lymphoedema Services Network 2015- 2 Resources 5 dissemination of information across 2018 developed, methods disciplines and other clinical specialty for education and areas to enable broader and more support established accessible services and improved workforce planning 4. Create a care coordination model Lymphoedema Services Network 2015- 2 Framework 6 which would include a summary/record 2018 established and framework for clinical communication clinical for patients which is integrated, co- communication ordinated and used in collaboration resources integrated. with other services Patients information is able to be shared between services where appropriate 4. Create, maintain and publish a public Lymphoedema Services Network 2015 1/2 List of private 7 list of private service providers with lymphoedema appropriate lymphoedema services publicly qualifications available

4. Collect and maintain a minimum data Lymphoedema services and services 2015 1/2 ACTPAS clinics setup 8 level which reflects active patient network for all locations, data numbers, screening patient numbers, collection and lymphoedema stage information, management SOP occasions of service and service developed and put location. into effect

Part 112

54 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Part 113 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

Par Part 115 Improvement Action Part 116 Lead Responsibility Part Part 118 Funding Part 119 Performa t 117 nce Measures 114 Timef r a m e 5.1 Identify opportunities to build upon Lymphoedema Services Network Ongoi 1/2 Opportunities existing education relationships with ng identified and further universities, CIT, private practice and connections other education centres established. Lymphoedema education being provided collaboratively 5.2 Ensure that clinical research is an Lymphoedema Services Network Ongoi 2/3 Number of integral part of relevant employees’ ng publications roles 5.3 Ensure that provision of clinical Lymphoedema Services Network Ongoi 2 Staff involved in education of staff and students is an ng educating activities of integral part of employees role students and other staff 5.4 Identify and adopt IT infrastructure to Lymphoedema Services Network Ongoi 2/3 IT infrastructure support research and service delivery ng identified and adopted where appropriate 5.5 Provision for student placements, allied Lymphoedema Services Network Ongoi 2/3 Rotational staff put health rotation and allied health Health Directorate ng into place assistants rotation

55 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Part 120

56 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan Access and Equity Part 121 Part 122 Objective six: There will be a greater focus on improving access and equity across all lymphoedema services within the ACT and surrounding regions Part 123 Par Part 125 Improvement Action Part 126 Lead Responsibility Part Part 128 Funding Part 129 Performa t 127 nce Measures 124 Timef r a m e 6.1 Develop innovative models of care Lymphoedema Services Network 2018 2/3 Models of care which consider methods to improve developed and access for remote individuals such as implemented, E-health or tele-health models. improved access methods implemented. Remote individuals are receiving care with less travel requirements 6.2 Ensure that there is consistency across Lymphoedema Services Network 2018 2 Lymphoedema services provided and costs to patients services network across all publicly provided services established and consistent services provided. Consumables such as BIS and electrodes and bandaging are provided for free as a part of the service 6.3 Ensure that patients who are Lymphoedema Services Network 2018 2 Referral pathways transitioning in and out of inpatient care developed and have improved access to inpatient patients are lymphoedema services able to 57 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan access/receive lymphoedema management. Inpatient lymphoedema contact episodes increase

58 Actions with a timeframe of 2015-2018 are expected to be considered be implemented incrementally through the course of the Plan 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.

59 Part 130 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

MLHD Murrumbidgee Local Health District

60 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

61 Part 131 References / Bibliography

1. International Lymphoedema Framework: Best Practice for the Management of Lymphoedema. International Consensus. London: MEP Let. 2006 http://www.lympho.org/

2. Australasian Lymphology Association: What is Lymphoedema? http://www.lymphoedema.org.au/

3. International Society of Lymphology: The diagnosis and Treatment of peripheral lymphoedema: 2013 consensus document of the International Society of Lymphology. http://www.u.arizona.edu/

4. National Breast and Ovarian Cancer Centre Review of Research Evidence on Secondary Lymphoedema: Incidence, Prevention, Risk Factors and Treatment. March 2008. http://canceraustralia.gov.au/

5. ACT Health – ACT Chief Health Officer’s Report 2014. http://www.health.act.gov.au

6. International Lymphoedema Framework: The Way forward; focus document. 2010. http://www.lympho.org/

7. Keast, DH; Despatis, M; Allen, JO & Brassard, A; Chronic oedema/lymphoedema: under-recognised and under-treated. International Wound Journal, February 2014.

8. Rockson, SG & Rivera, KK; Estimating the Population Burdon of Lymphoedema. New York Academy of Sciences. 1131:147-154, 2008.

9. Mehrara, BJ & Greene, AK; Lymphoedema and Obesity: Is there a link? Plastic and Reconstructive Surgery, July 2014.

10. DiSipio, T; Rye, S; Newman, B & Hayes, S; Incidence of unilateral arm lymphoedema after breast cancer: a systematic review and meta-analysis. Lancet Oncology, 2013; 14: 500- 515

11. Erickson, VS; Pearson, MI; Ganz, PA; Adams, J; & Kahn, KL: Arm edema in breast cancer patients. Journal of the National Cancer Institute 2001; 93: 96-111

12. ACT Health – Cancer in the ACT, Incidence and Mortality 2011 http://www.health.act.gov.au

13. Petrek, JA; & Heelan, MC: Incidence of Breast Carcinoma-related lymphoedema. Cancer, 1998; 83 (Supplementary American): 2776-81.

14. Australian Institute of Health and Welfare: Radiation oncology areas of need, cancer incidence projections 2014-2024. http://www.aihw.gov.au/

15. Trevez, N. An Evaluation of the Etiological Factors of Lymphoedema Following Radical Mastectomy, An Analysis of 1,007 Cases. Cancer May-June 1957

16. McLaughlin, SA; Wright, MJ; Morris, KT et al. Prevalence of lymphoedema in woman with breast cancer 5 years after sentinel lymph node biopsy or axillary dissection: Objective measurements. Journal of Clinical Oncology. 2008, 26: 5213-5219

17. Werner, RS; McCormick, B; Petrek, J; et al. Arm edema in conservatively managed breast cancer: Obesity is a major predictive factor. Radiology. 1991, 180: 177-184

62 18. Helyer, LK; Varnic, M; Le, LW; Leong, W & McCready, D. Obesity is a risk factor for developing postoperative lymphoedema in breast cancer patients. Breast Journal. 2010, 16: 48-54

19. Fife, CE & Carter, MJ. Lymphoedema in the Morbidle Obese Patient: Unique Challenges in a Unique Population. Ostomy Wound Management. 2008, 54(1): 44-56

20. Sassi, F; Devaux, Marion; Cecchini, Michele & Rusticelli, E. OECD Health Working papers No. 45 – The obesity epidemic: analysis of past and projected future trends in selected OECD countries. Directorate for employment, labour and social Affairs. Organisation for economic co-operation and development. http://www.oecd.org

21. Australian Bureau of Statistics: Australian Health Survey, first results 2011-12. http://www.abs.gov.au

22. ACT Health – Towards Zero Growth, Healthy Weight Action Plan. http://www.health.act.gov.au

23. ACT Government – Budget 2014-2015, Budget Paper 1 Speech http://apps.treasury.act.gov.au/

24. Australian Business Council of Australia – Long-term funding of health and ageing: the rising pressure on commonwealth and state budgets http://www.bca.com.au

25. Cheville, AL; Almoza, M; Courmier, JN; & Basford, JR; A Prospective Cohort Study Defining Utilities Using Time Trade-Offs and the Euroqol-5D to Assess the Impact of Cancer- Related Lymphoedema. Cancer, August 1, 2010, 116(15) : 3722-31.

26. Calvary Health Care ACT – ACT-wide Lymphoedema Services Review 2012

27. Piller, N. Lymphoedema and the impact of social and societal factors – can we do better? Journal of Lymphoedema. 2013, Vol 8, No 2

38. Review of current practices and future directions in the diagnosis, prevention and treatment of lymphoedema in Australia. February 2004. Report to the Australian Health Ministers’ Advisory Council.

29. Sitzia, J; Woods, M; Hine, P; Williams, A; Eaton, K & Green, G. Characteristics of new referrals to twenty-seven lymphoedema treatment units. European Journal of Cancer Care. 1998, Vol 7

30. Victorian Government, Department of Human Services. (2005) A review of lymphoedema services in Victoria. Sept 2003-June 2004.

31. McLaughlin, SA; Wright, MJ; Morris, KT; Giron, GL; Sampson, MR; et al.; Prevalence of Lymphoedema in Woman with Breast Cancer 5 years After Sentinal Lymph Node Biopsy or Axillary Dissection: Objective Measurements. Journal of Clinical Oncology 2010, Vol 26, No 32, 5213-5219

32. Kell, MR; Burke, JP; Barry, M; Morrow, M; Outcome of axillary staging in early breast cancer: a meta-analysis. Breast Cancer Research and Treatment, 2010, 120, 441-447

33. Ward, LC; Bunce, IH; Cornish, BH; Mrolo, BR; Thomas, BJ and Jones, LC; Multi- frequency bioelectrical impedance augments the diagnosis and management of lymphoedema in post-mastectomy patients. European Journal of Clinical Investigation. 1992, 22, 751-754.

63 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. http://www.health.act.gov.au

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, 947- 950

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/

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.

64 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

65 Part 132 APPENDICES

Part 133 Appendix 1: Principles behind the Lymphoedema Services Background Paper and Implementation Plan Part 134 ACT Lymphoedema Services Background Paper and Implementation Plan key Health Elements Ambulatory Care Principles Part 135 Patient  Efficiency of service and patient centred care Centred  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. Part 136 Multidi  Patients should be provided with appropriate access to multidisciplinary sciplinary care and GP care. and  When a patient presents to a service requiring related Cancer treatment Collaborative (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. Part 137 Access  Early referral and early assessment and management ible  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. Part 138 Safe  Adequate treatment facilities and appropriately trained staff and High  Best practice and total patient care. Quality  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

66 option if required.  Health care professionals should be vigilant for possible complications and risks and should monitor to avoid adverse outcomes Part 139 Populat  Early lymphoedema diagnosis. ion Health  Reducing the risks associated with progression of Lymphoedema Approach  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

Part 140

67 Part 141 Appendix 2: Lymphoedema Workforce Plan

Part 142

Lymphoedema Workforce Plan

Part 143

Part 144

Part 145 [VERSION 1.4]

68 Lymphoedema Workforce Plan

CONTENTS

Review and Amendment History: Version number Issue date Details Author 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

69 Part 146 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).

Part 147 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 0.2 FTE = 7.35 hours per 0.5 FTE = 18.4 hours per per week week 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.

Part 148 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: Education Community outreach services Lead clinician / manager / educator/ Bandage skill sets via rostered service provision patient planner (up to 1 FTE) Service provision from the Hub Specialised trained staff (3.70 FTE) Education Administration Assistant (up to 1FTE) Nurse – bandaging skills 0.05 FTE dietician 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.

71 Part 149 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:

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/About_the_Regis ter/NLPR_Guidelines.aspx?hkey=25e8f9a2-06b7-49bd-a6b9-b417c95e7b47 ) The management structure will need to be flexible to enable the possibility of this multidisciplinary team approach. 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 co-morbidities 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.

Part 150 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 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.

Part 151 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.

73 Table 2: Issues and Challenges

Issues and challenges Risk mitigation strategies Person responsible Operational Challenges Additional professional requirements if the Physiotherapists who work in the ‘Hub’ are currently Relevant Executive to the Lymphoedema Service employs more than governed by the Director of Physiotherapy at Calvary Health Director of Physiotherapy, one discipline under the one line manager. Care Bruce (CHCB). Lymphoedema training through CHCB 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). Currently 1 staff member is employed at Acute Support Physiotherapy have provided further Relevant ACTH and CHCB Canberra Hospital and Health Services and information to advise that there are two staff members Executives has a 0.5 FTE. The main concern is this staff employed to perform a total of 0.5FTE of lymphoedema member is unsupported and there is no support. This helps to manage issues of succession succession planning. 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. Recruitment time frames are slow and Health Services Planning Unit (HSPU) is working HSPU utilising funds in the 2014/15 financial year collaboratively with stakeholders to try to facilitate efficient would be beneficial. processes to complete the services plan and enable subsequent recruitment to occur. A Service Level Agreement is required to The Workforce Plan and Lymphoedema Services Relevant ACTH and CHCB

74 enable staff employed by Calvary to work at Background Paper and Implementation Plan 2015-2018 Executives multiple Community Health Centres across outline the concepts underpinning the cross-service the ACT. provision of care. Health Services Planning Unit will collaborate with CHCB and ACTH executives to develop a Service Level Agreement. Existing physical barriers/silos between ACT Executive Directors and division managers supporting this Relevant ACTH and CHCB Health & CHCB, as well as inpatient & model will assist in breaking down these barriers/silos; the executives and managers community-based services. Service Level Agreement will incorporate a collaborative partnership between ACT Health & CHCB and between inpatient & community-based services. Room availability to deliver services and HSPU has met with executives and managers to begin the Lymphoedema Services store equipment at Community Health process of identifying potential service locations and Network and Lymphoedema Centres will need to be sourced required resources for this purpose. This will need to be service manager/lead progressed by the lymphoedema service manager/lead clinician. clinician and Lymphoedema Services Network as a part of implementation. Information Technology Challenges Information Technology issues exist on a HSPU and WP&PU have met with the E-Health department Lymphoedema service practical level in terms of login access & to discuss this issue. Calvary staff will be able to be set up manager/lead clinician & E- ACTPAS functionalities. Calvary staff are with access to the ACT Health instance of ACTPAS as a Health Support. unable to log in within ACT Health facilities part of implementation of the service. The lymphoedema and they do not have access on ACTPAS to service manager/lead clinician will work collaboratively with patients registered by ACT Health staff or to Calvary and ACT Health IT staff to enable this to occur. any clinics set up by ACT Health. CHHS physiotherapy staff who are currently This issue can be similarly managed to above. Lymphoedema service required to work away from the hospital are manager/lead clinician & E- given multiple ACTPAS identities to assist Health Support. 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 Concerto and As above, the lymphoedema service manager/lead clinician Lymphoedema service CRIS and both of these programs would will work collaboratively with the E-Health and Clinical manager/lead clinician & E-

75 benefit staff access to patient details. records unit to work through this issue as a part of Health Support. implementation. Other Challenges The skill of bandaging has dropped off the WP&PU are corresponding with Judith Barker, Nurse WP&PU agenda for trainee nurses. Nurses in the Practitioner in Wound Management, to assess whether an acute care setting need to be trained and increase in education can occur. credentialled in compression bandaging. Service gap at Calvary John James Hospital. The Lymphoedema Services Network may make Lymphoedema Services connections with Calvary John James to establish Network opportunities for collaboration or education. The newly opened Obesity Management Correspondence with staff at the OMS has indicated that Lymphoedema service Service (OMS) at Belconnen Health Centre they are still receiving new referrals. The implementation of manager/lead clinician is reported to have closed its books one a dietician in the Lymphoedema Clinic may help to reduce month after opening due to high demand the impact of any potential delays in the referral processes. which may delay the referral process to dietitians. Staff transport between locations including Staff will be rostered for shifts at different buildings, therefore Lymphoedema service vehicle and taxi requirements is a concern at reducing the need to have vehicle and taxi subsidy. manager/lead clinician CHCB where these resources are not readily Budgeted resources may need to be utilised for taxi or available. vehicle use at times when transport is required.

76 Part 152 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.

Part 153