1. the Yuendumu/Lajamanu Dialysis Services Feasibility Study 3
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Lajamanu Dialysis Support Service Feasibility Study
Final Report March 2009
Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation Table of Contents
1. The Yuendumu/Lajamanu Dialysis Services Feasibility Study 3 2. Executive Summary 4 2.1 Key Findings 5 3. Background 6 3.1 The WDNWPT Story 6 3.2 WDNWPT Services for Yanangu families 7 3.3 WDNWPT Structure 8 3.4 WDNWPT Dialysis Service Model 9 3.5 Membership of Current WDNWPT Governing Committee 10 4. Renal Patient Data for Lajamanu and Surrounding Communities 11 4.1 Current Renal Patient Numbers for Lajamanu Region 12 4.2 Chronic Kidney Disease (CKD) Figures for Lajamanu Region 12 4.3 Interpreting CKD Data 12 5. Consultations 13 5.1 Consultations 13 5.2 Process for Consulting Renal Patients, Family and Community 14 Members 5.3 Summary of Issues 14
6. Resolution to Kurra Aboriginal Corporation 16 6.1 Resolution 6.2 Proposed budget 16
7. Feasibility Study Conclusion 17 8.Glossary 18
ATTACHMENTS A. Report by Jeff Hulcombe 19
B. Duty statement for Project Development Manager 38
2 1. The Yuendumu/Lajamanu Dialysis Services Feasibility Study
The existence of the Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation’s (WDNWPT) Kintore renal facility is well known to dialysis patients and their families across Central Australia. The success of this model is something that other remote communities are keen to understand in order to explore options for renal dialysis services for their own community members. To this end the Kurra Aboriginal Corporation agreed in early 2007, to set aside $30,000 for the Central Land Council to appoint a consultant to conduct a feasibility study on the provision of dialysis support services for Warlpiri patients from Lajamanu, Yuendumu and surrounding Warlpiri communities. WDNWPT was appointed to carry out the study drawing on its relevant expertise and experience.
The feasibility study required that WDNWPT form a ‘kidney committee’ of patients and key community members and, with the help of this committee, provide information to patients and community members about current services provided by the Alice Springs Renal Dialysis Unit and WDNWPT, listen to their ideas and priorities with regard to dialysis services, consult government and non-government agencies and then develop dialysis support options and provide costings for those options. The study team with the kidney committee was required to prioritise up to five dialysis service options to be presented to the Kurra Aboriginal Corporation in March, 2008.
3 2. Executive Summary
The Yuendumu Feasibility Study commenced in October 2007 and was completed prior to the Kurra Aboriginal Corporation meeting in Lajamanu on the 11th of March 2008. The study was conducted by Megan Hoy and Georgia Stewart as employees of Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation.
Early in the work it became obvious that it would be difficult to provide services for both Yuendumu and Lajamanu communities and patients through the same model. It was decided to provide two separate processes and reports. Whilst Yuendumu Dialysis patients and their families move to Alice Springs to receive treatment, Lajamanu patients dislocate to both Katherine and Darwin.
This report addresses issues and priorities for the Lajamanu region only. A separate report for Yuendumu was presented to Kurra in March 2008 and considerable work has been undertaken towards establishing dialysis services in Yuendumu.
In accordance with the Study contract, detailed consultations were conducted with dialysis patients, family members and other community members in Lajamanu, Katherine and Darwin. These discussions by Jeff Hulcombe for WDNWPT were held in November 2008. Discussions with key stakeholders including: Katherine West Health Board, The Northern Territory Government Health Department and the Commonwealth government also occurred.
2.1 Key Findings
From the commencement of this study it was apparent that Lajamanu dialysis options would be quite different from the service model accepted in Yuendumu. Geographical isolation, disparate patient groups in Katherine and Darwin and an unclear catchment area added to the complications. Whilst WDNWPT had been able to auspice patient support and return to country services from Alice, this would not be possible for Lajamanu.
Our consultations found overwhelming good will and enthusiasm from community members and community organizations alike for the establishment of social support and dialysis service in Lajamanu. There was also support from the Nightcliff renal unit nursing staff to assist with staffing the service (however, much work would need to be done before such a partnership could be established).
From WDNWPT’s experience, the fundamentals for a successful project at Lajamanu appear to be in place. Most significant is community enthusiasm and engagement.
There are however a number of critical issues which were beyond WDNWPT’s resources to resolve. These include;
Who would auspice the project?
4 What other external funding or other forms of assistance could be available to assist this project eg. Central Desert Shire, the Commonwealth Government, Katherine Western Health Board (KWHB), Department of Health and Community Services (DHCS). What would be the catchment area for clients? How could patient support and return to country programs be instigated which addresses the dispersed nature of clients between Katherine and Darwin. How self care may be promoted and best incorporated into the service. Location of the dx facility. Matters of staff recruitment and accommodation. Whether a governing committee is required and if so how will it be established? Is a separate incorporation desired or required?
RECOMMENDATION:
WDNWPT recommends that Kurra appoints a part time project officer in either Katherine or Darwin to work with a kidney committee and patients and present back to the Kurra meeting in September a detailed plan.
Please see attached budget.
5 3. Background
3.1 The WDNWPT Story In the 1990’s community members from Kiwirrkurra, Mt Liebig and Kintore were already talking about the difficulties for communities and families of an increasing number of Yanangu being forced to move to Alice Springs for renal dialysis treatment. They were concerned about these people missing country and family, not being able to do what they should be doing out in their communities and on country-teaching their children and grandchildren.
Senior Kintore community leader Mr Zimran, had started dialysis and understood, through first hand experience, the challenges and sadness facing renal dialysis patients as a result of dislocation and the consequent loss of cultural engagement and connection to family and country. He understood the enormous implications of this phenomenon for cultural continuity and well-being. Although kidney disease is now expanding to affect younger community members, the largest proportion of those with end-stage renal failure tend to be in their late forties and beyond. This group possesses the richest understanding and knowledge of language and traditional culture and is responsible for transferring that knowledge to younger generations, those “coming up behind”. Their permanent removal from their communities fractures this process and creates significant stress for individuals who are unable to meet their cultural obligations and feel a tremendous sense of loneliness and despair. Apart from the severe dislocation suffered by individuals who face homelessness, loneliness and the shame of living on other people’s traditional country, this group recognized the terrible loss to their own community’s pool of knowledge of family (walytja), country (ngura), stories (tjukurrpa) and ceremonies (tulku). These elements are the determinants of Yanangu well-being and the obligation to know (kulintjaku) and learn (nintintjaku) is the very basis of Yanangu Law. Mr Zimran and other senior community members started talking to Papunya Tula and Sothebys and NT politicians like Peter Toyne about getting dialysis machines out in Kintore. In order to raise funds, a unique partnership was formed between Yanangu, sympathetic members of the Aboriginal Art industry and local politics, and community controlled health services. Papunya Tula Artists Pty Ltd. then commissioned four remarkable collaborative paintings by senior Pintupi men and women in Kintore and Kiwirrkura. These were auctioned by Sothebys along with a range of donated works at the Art Gallery of NSW in Sydney, November 2000. The auction raised over AUS$1 million and was used to establish our organisation, The Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corp Inc. (WDNWPT). This name loosely translates as “Making all our families well”, in recognition of Yanangu desire to mitigate the extent to which kidney disease threatens the preservation of Walytja or extended familial relatedness at a fundamental level. After the auction, WDNWPT started its ‘Return to Country’ program, getting people home for overnight visits between dialysis treatments. Shortly after, the patient support program commenced to help improve the quality of life for patients in Alice Springs through advocacy, activities to relieve boredom like picnics and the renal choir, assistance with negotiating town-based services and case management support for patients with complex needs. Our dialysis house in Alice Springs, providing additional renal facilities and support to Western Desert 6 patients since 2004 3.2 WDNWPT Services for Yanangu Families
In April 2004, the organisation opened the first remote renal dialysis clinic in Central Australia at Kintore. Since then we have been returning people home for dialysis holidays each year of between two and six weeks, and providing alternative dialysis facilities and patient support in Alice Springs from a converted suburban house. Patient support includes advocacy, housing, linking clients with other services, case management for high needs clients, strong partnerships with organisations and agencies eg. Palliative care, NT Shelter, Tangentyere, Red Cross, Centrelink, Aboriginal Hostels etc. as well as recreational activities such as the renal choir and bush medicine workshops.
The WDNWPT Purple House, Alice Springs
As the project has grown we have added more services. We currently have a GP clinic two mornings each week and are looking to add a podiatry and Occupational Therapy Service in the coming months.
The main goal of WDNWPT is hence to significantly improve the quality of life of Yanangu on dialysis by supporting them holistically in Alice Springs through our Patient Support Program and by providing them with the opportunity to return home as frequently as possible, for short as well as extended stays.
When WDNWPT started we were supporting just seven renal patients and their families. In seven years that number has grown to 40 and, according to recent data on kidney disease in the region, will continue to grow dramatically.
The benefit of establishing WDNWPT early on is that new renal patients are able to gain immediate benefit from the project and have some support and relief during the early period of dislocation and loneliness after arriving in Alice Springs. They are also able to look forward to organised visits home for short stays between dialysis as well as extended periods on dialysis in Kintore.
A thorough and detailed evaluation of this program released in 2006, demonstrated its success and cost-effectiveness and has enabled WDNWPT to negotiate successfully for Government funding for nurses’ wages, three dialysis machines and some capital infrastructure, including our small dialysis house in Alice Springs and two vehicles.
7 3.3 WDNWPT Structure Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (WDNWPT) is an Aboriginal Corporation under the Aboriginal Councils and Associations Act 1976 and is a registered not-for-profit organisation. The membership of the organisation is open to all adult Aboriginal people (Yanangu) living permanently in the Haasts Bluff Land Trust and Kiwirrkurra Community in the Western Desert Region of Central Australia. The WDNWPT Governing Committee is made up of 12 Yanangu members who are drawn evenly from the area of its membership. The Committee members are elected annually at an Annual General Meeting. Despite being geographically dispersed, Yanangu maintain strong links through kin, language and extended family networks, alongside shared rights in country. Currently WDNWPT patients are drawn from a diverse range of Western Desert communities including Mt Liebig, Hermannsburg, Haasts Bluff, Papunya, Mt Liebig, Walungurru (Kintore), Docker River and Nyirripi in the Northern Territory and Kiwirrkurra, Tjukula, Blackstone and Warakurna in Western Australia. The membership of this WDNWPT client group is determined by the Yanangu Governing Committee and is based on family relationships.
8 3.4 WDNWPT Dialysis Service Model
Alice Springs
Purple House (owned by WDNWPT) with two dialysis machines and 1.2 nursing positions
Manager (fulltime)
Patient Support Program- fulltime position
Admin worker (part-time)
Trainee Aboriginal Healthworker
GP Clinic-2 mornings per week
Return to Country Program
Kintore
Dialysis room with one machine Nurse’s accommodation
Nurse (fulltime) 4WD
3. 5 Membership of Current Governing Committee
9 Marlene Spencer Nampitjinpa (Chairperson), Bobby West Tjuparrula (Vice Chair), Marilyn Nangala (Public Officer), Irene Nangala, Pilita Napurrula, Desma Napaltjarri, Audrey Turner Nampitjinpa, Warren Eddy and Kai Kai (Barbara) Reid, Bundi Rowe Tjupurrula
Marlene Spencer Nampitjinpa, WDNWPT Chairperson
10 4. Renal Patient Data for Lajamanu and Surrounding Communities
4.1 Current Renal Patient Numbers for Lajamanu Region
In November 2008 there were 12 renal patients from the Lajamanu Region, 2 receiving Peritoneal Dialysis and 10 Haemodialysis.
Gender Surname First Name Community Status F Kalkarindji PD M Kalkarindji PD
M Pigeon Hole Hdx darwin F Binjari Hdx Darwin M Yarralin Hdx Darwin F Yarralin Hdx Darwin F Lajamanu Hdx Darwin F Binjari Hdx Darwin F Lajamanu Hdx Darwin F Kalkarindji Hdx Darwin F Binjari Hdx Katherine M Lajamanu Hdx Katherine
4.2 Chronic Kidney Disease (CKD) Figures for Yuendumu, Willowra, Nyirripi and Yuelamu
As with most remote Central Australian communities, the chronic kidney disease (CKD) figures for Lajamanu and the surrounding communities show a strong upward trend in the next few years. There are currently 14 people known to the Renal Unit in Darwin from the region who have failing kidneys. Staff at Lajamanu clinic stated there were many more people with failing kidneys who do not appear on this list. Their list contains 36 names. As kidney failure is often asymptomatic, it is likely there are also people with failing kidneys who have never been tested.
4.3 Interpreting CKD Data
The Renal Dialysis Unit CKD table below represents the most current information available on chronic kidney disease for individuals from Lajamanu and surrounding communities. The data depends on blood tests taken in remote communities. Some community members may not attend clinic regularly so the dates of their last blood test may be quite old.
11 Gender Community eGFR M Binjari 24 F Daguragu 20 F Kalkarindji 17 F Kalkarindji 22 F Kalkarindji 26 M Kalkarindji 12 M Kalkarindji 32 F Lajamanu 27 F Lajamanu 17 F Lajamanu 21 F Lajamanu 22 M Lajamanu 31 F Lajamanu 15 M Lajamanu >60
CKD Data supplied by Nightcliff RDU, November 2008
All individuals referred to in the table have a GFR of less than 60. GFR (ml/min) refers to glomerular filtration rate or the amount of urine being processed by a single cell in the kidney. People with a GFR below 60 are considered to have chronic kidney disease. There are many factors that can influence how soon or whether a person with a low GFR will end up on dialysis. These include; What type of kidney disease the person suffers How actively they are being managed for high blood pressure, diabetes, medication and diet. Generally speaking, those with a GFR below 30 are at a high risk of starting dialysis within two years, while those with a GFR between 30 and 60 are at a high risk of starting dialysis between two and five years. It is hoped that the development of renal dialysis support services for renal patients and their families will ensure a demonstrable improvement in the quality of life of existing and future renal dialysis patients and will have the added benefit of providing opportunities for focusing greater attention on preventative options for kidney disease within these communities. Our experience in Kintore has shown that the presence of the dialysis unit in the community provides an educational function in the alleviation of future kidney disease through an earlier awareness of symptoms and preventative measures, and in the demystification of options for patient care. As we have learned from our experience the most powerful way to communicate information about renal disease and treatment is
12 through the presence of the patients themselves. The presence of the dialysis machine also enables people to see the reality of life on dialysis treatment and provides opportunities for building awareness about kidney disease and preventative options.
5. Consultations
A range of consultations were undertaken in a variety of settings throughout the Feasibility Study.
Full details are contained by the report written by Jeff Hulcombe (Appendix 1)
Discussions were held with;
Lajamanu:
Mr William Lewis, Chair of Central Desert Shire
Lajamanu community members
Temporary CEO David Stokes
Government Business Manager, Dean Gooda
Staff at Lajamanu clinic
Yapa staff at Lajamanu school.
Katherine
Katherine West Health Board
Dialysis patients
Darwin
Dialysis patients
Clinical Nurse Manager for Nightcliff Renal Unit
13 5.2 Process for Consulting Renal Patients, Family and Community Members
At the start of all consultations with family, renal patients and relevant services we presented the WDNWPT model as a simple, colourful diagram and explained the long process of developing the organisation, from early discussions about the impacts of kidney disease that started in the Western Desert during the 1990’s, through to the establishment of the Kintore dialysis clinic in 2004.
Throughout consultations we were careful to explain that the process of developing WDNWPT was a slow and sometimes difficult one which had met with significant opposition in the early days. We hope that, in prioritising a basic model, the patients and families that we spoke to were doing so with a realistic and informed understanding of what might be possible and the level of energy and passion that would be required for the outcomes of the feasibility study to bear fruit.
To aid our consultations we used simple pictorial diagrams throughout to assist people to visualize their future dialysis service.
5.3 Summary of Issues
Lajamanu Community
Given that at the moment there are only four listed renal clients as being from Lajamanu it is conceivable that a supported dialysis machine (or two) located in Lajamanu could provide extended periods of time at home for these patients. However, given the current data on the numbers of those who should either already be on dx treatment or are nearing its requirement, such an ability would reduce as the need to access such a facility grows. All currently listed Lajamanu renal clients are keen and supportive of a renal facility at Lajamanu. However before proceeding there are issues to be resolved. Issues at Lajamanu which require a level of resolution to facilitate the Yapa initiative are;
Renal Committee:It is important that a ‘kidney’committee be established.The committee is important to drive the project, advise staff and ensure community ownership.
Renal facility:Some sort of facility will need to be constructed. This could be purpose built or the purchase of the mobile demountable similar to that utilised by the NT Department of Health and Community Services (DHCS). Cost of one of these demountables is in the vicinity of $350,000 installed. Council identified vacant space beside the current clinic which has essential services supplied. However KWHB indicated that they have utilised this space in their future clinic plans. NB KWHB should inform council and/or shire of this. The allocation of this area for such a facility does not exist on the current Service Land Availability Plan (SLAP) for Lajamanu. Another site was indicated behind the existing clinic (lot 282) where a dx facility could be located. This site I was told also has essential services supplied but no road access, although I was informed this would not be a major exercise to rectify.
14 Renal Nurse: There is an international shortage of renal nurses. One could therefore presume that it would be hard to find experienced and culturally safe renal nurses willing to work in Lajamanu. However, WDNWPT’s experience shows that there are very few opportunities for Renal Nurses to work outside the hospital system and that the problems of recruitment and retention are not insurmountable.
Staff accommodation: Is a major issue across all sectors at Lajamanu. Council indicated a number of old sites which with work could be useful. Of these the best was a burnt out duplex (lot 292) opposite the airstrip. A quote to repair one side of this duplex, given last year by a builder by the name of Cliff, who does periodic work at Lajamanu, came in at $120,000.00. However on inspection it appears that more damage has been since this quote so presumably the figure would now be higher.
Patient accommodation: As noted below this was perhaps the most central concern for the majority of patients interviewed. However if funds were available it would appear logical that the duplex mentioned above be renovated in total and could solve the issue of both staff and patient accommodation.
Auspicing organisation: This issue is perhaps the first matter which needs to be resolved to begin to advance this project in a clear direction. More specifically Lajamanu people and the Kurra association need to decide whether to incorporate separately (as per Yuendumu) or utilise the capacity and resources available through KWHB (see KWHB below). The issue of amount and level of control over funds will probably be the determining factors which dictate the outcome here. In the interim, WDNWPT is offering to support a project officer to do the first 6 months of ground work. This means work could start almost immediately.
Patient liaison and support: While not specifically discussed at Lajamanu it is a matter which will require some further thought and discussion as to what is required and what is possible.
Central Desert Shire (CDS), Government Business Manager GBM) and Lajamanu Community.
Responses from both thus far have been supportive and encouraging and their ongoing support will be vital to this project. While things are still so much in the early formative stages of his project it is difficult to allocate specific tasks to these insitutions. The CDS’s continued commitment to the allocation of the lot 292 for accommodation is important. Securing this lot from further damage would also be of assistance. Moreover there could be other contributions in terms of subsidised power and water charges to whatever service evolves in Lajamanu. It was mentioned to me that the Lajamanu Social Club could contribute funds to assist the project. I also understand the community has three airplanes at it’s disposal. Perhaps discounted airfares for renal clients could be a consideration.
15 In addition there are a number of major financial areas where contribution to the project would be greatly appreciated and which would indicate the cooperative and collaborative nature of this exercise. They are;
Employment of project staff both at Lajamanu and/or Katherine. Construction of renal and client staff accommodation at Lajamanu and/or Katherine. Construction of renal facility at Lajamanu and /or Katherine. Administration costs Travel assistance
6. Resolution to Kurra Aboriginal Corporation March, 2009
6.1 The Resolution
Kurra Aboriginal Corporation agrees to provide funding to employ a Project manager for an initial 6 month period. It is proposed that The Project Manager will initially be employed by the Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (WDNWPT) and be based in Katherine or Darwin to enable the following preliminary work to be undertaken:
a) Induction into the project by WDNWPT staff including familiarisation with possible project models, introduction to the community-based dialysis model at Kintore as well as meeting patients and families, RDU staff etc
b) Establishment of a kidney committee. Committee to provide community, family and patient input to project development and to establish rules and broad guidelines for the running of the project
c) Resolution of outstanding issues including catchment area, auspicing, relationship with Katherine West Health Board.
d) Development a detailed budget for the establishment of renal dialysis and social support services for the region.
e) Explore funding options
16 6.2 Project Budget (Development phase)
March 2009-March 2010
Project Manager (24hrs) for 6 months plus oncosts 45 x 24 x 26 = $28, 080 Recruitment and orientation 4,000 Staff travel/car hire 10,000 Office rental ($300 per wk x 26) 7,500
Phone/fax/internet 2,000 Office Supplies 500 Accounting 2,000 Audit 400 Governance: traveling & meeting costs 5,000
Office furniture 1,000 Computer/fax/printer 3,000
Total $60 980 + GST
Development Budget Total $67,078
The Project Manager will be required to present a progress report to the March 2010 meeting of Kurra Aboriginal Corporation against the outcomes set out in the Agreement proposed in the Resolution (above). If the Corporation is satisfied with progress towards the completion of key tasks outlined above then a proposal will be made for the provision of infrastructure and other recurrent funding.
This budget will take into account any funding contributions negotiated by the Project Manager and Kidney Committee with Northern Territory and Federal governments and other potential funding agencies.
7. Feasibility Study Conclusion
WDNWPT is keen to support other communities wishing to improve life for dialysis patients forced to live far from country and family. We are disappointed that we were not able to move further ahead for Lajamanu with plans for such a service. However, we are convinced with the levels of community support present for such a project, a robust plan can be formulated by the March 2010 meeting.
17 7. Glossary
Community-based dialysis - Any dialysis option occurring within the community. Emphasizes general location anywhere outside of an institution dedicated to dialysis delivery.
Chronic Kidney Disease (CKD) – the situation of kidney disease deterioration prior to dialysis (previously known as chronic failure; Chronic Renal Insufficiency).
Dialysis – the treatment offered to replace the kidney function associated with removing toxic waste from the body. Currently of two kinds, haemo- and peritoneal dialysis.
Haemodialysis (HD) – a machine pumps blood from the body via needles, through a filtration system and back. Institutional treatment cycles usually last 4-5hrs, 3 times weekly.
Peritoneal Dialysis (PD)- also known as ‘the bag’. Membranes in the tummy act as a filter. Clean fluid is put into the belly through a tube and dirty fluid drained out. This sort of dialysis can happen a few times a day or at night whilst the person is sleeping.
18 Attachment A
REPORT RE: LAJAMANU DIALYSIS SERVICE ESTABLISHMENT DATE: 3-7/11/08 LOCATION: LAJAMANU, KATHERINE, DARWIN
AUTHOR: JEFF HULCOMBE ------INTRODUCTION This report has been prepared at the behest of the Kurra Aboriginal association with assistance provided by Western Desert Nganampa Walytja Palyantjaku Tjutaku (WDNWPT) Aboriginal Corporation. The object of this report is to inform members of the Kurra Aboriginal association and other stakeholders of the process and outcomes of this initial round of information sharing and discussions regarding the establishment of a remote dialysis (dx) service at Lajamanu; this service being the second part of the Kurra Associations intent to provide remote dx services at both the Yuendumu and Lajamanu Communities. At this juncture it is only an interim report representing the first round of information sharing and discussions; as such the report details the initial phase of this process. Primarily it indicates the introduction of the concept and information surrounding the possibility of such a service to this community. From this initial round of information sharing and discussions however the report endeavours to extract a number of model options as to how such a service may evolve and be structured. None of these models in their presentation are meant to be proscriptive. They are merely meant to inform and provoke further discussion with and between all stakeholders. These options though are based not only upon the information gained from this preliminary round of discussions, but also knowledge of the successful WDNWPT model of service delivery in Central Australia. In this manner the report hopes to facilitate a process which assists the people of Lajamanu develop a method of service delivery which will meet their needs both immediate and into the future. Some questions which require a level of resolution before an appropriate service can begin to evolve and were a focus of this initial round of discussions, are: Who would auspice the project? What other external funding or other forms of assistance could be available to assist this project eg. Central Desert Shire, the Commonwealth Government, Katherine Western Health Board (KWHB), Department of Health and Community Services (DHCS). What would be the catchment area for clients? How could patient support and return to country programs be instigated which addresses the dispersed nature of clients between Katherine and Darwin. How self care may be promoted and best incorporated into the service. Location of the dx facility. This became a matter requiring resolution once I was informed that a dx room is available at the new Kalkaringi clinic. Matters of staff recruitment and accommodation.
19 Whether a governing committee is required and if so how will it be established? Is a separate incorporation desired or required? Realistically all these matters could or would not be resolved in one round of discussions. I did however obtain data sufficient to begin to provide some options in response to these queries.
METHODOLOGY. It was envisaged that a community meeting would have been a feature of this initial contact, as indicated in my preparatory discussions with the chair of the Central Desert Shire (Mr William Lewis). Unfortunately in the period before my arrival in Lajamanu another matter had developed which precluded eliminated any opportunity for this to occur. The matter at hand involved the demand by the Commonwealth for and eighty year lease over the community in exchange for some monies for housing. This meeting, I observed, proved to be very difficult for the community and extracted a lot of energy from them. Therefore at this stage the report is a result of opportunistic discussions with Lajamanu community members and agency representatives. Formal group meetings with community groups and service agencies were also conducted. In Lajamanu this included the chair of the Central Desert Shire, staff of the Katherine Western Health Board clinic, Yapa staff of the Lajamanu School, the acting Council CEO and the Government Business Manager (GBM), In Katherine I met with staff of the KWHB, which included the Lajamanu representative of its executive. In Katherine I also held talks with the two renal patients listed as being from Lajamanu. In Darwin discussions were held with two other patients listed as being from Lajamanu as well as the Clinical Nurse Manager (CNM) for the Nightcliff and regional renal units. In all discussions the following were included; history and function of WDNWPT. the Yapa initiative and commitment to create their own service in Yuendumu and Lajamanu. The progress of this development and the issues which require resolution for the Lajamanu service to proceed. What was most encouraging is that in all discussions I was met with enthusiasm and support for the development of this a service. The key now is how to harness this support and enthusiasm in the construction of a dx service and facilities for the people of Lajamanu.
CONSULTATIONS Monday 3/11/08 Arrived Lajamanu late Monday (3/11/08. That evening in the accommodation block I met a lady who informed me that there would be a Yapa school staff meeting on Wednesday. I decided that could be an opportune moment to address and important component of the community.
20 She also spoke to me about a discussion she had recently at Areyonga with a doctor about dx at Areyonga which the Dr. Had termed ‘reverse respite’. Tuesday 4/11/08 First thing Tuesday morning I called into the school and made arrangements to meet with the Yapa staff the next day. I then proceeded to the council office to see Mr. William Lewis chair of Central Desert Shire advisory board. He was not in his office at the time. On this morning the public meeting was held which involved Commonwealth and NT levels of government with the Central Land council (CLC) and Mr Lewis was occupied with this matter. I then proceeded to the clinic by foot to introduce myself. As I passed the store I heard a shout calling my name. On looking I saw an elderly man I recognised waving me over, his name is Norman Kelly and the older brother of Leo Menzies. He was sitting on the lawn near the store amongst a number of other men. One of these was Mr Jo James Tjapanangka whom I had met on the road the previous day. He also had recognised me, or more rather my hat from my CLC days. He is a CLC delegate. Both men introduced me to the rest of the group and spoke to me in Luritja. They explained that if people wanted to talk they could so in Luritja. Most of this group from what I could determine could follow my language. They asked me what I was doing and I then explained my role. As I began to talk and show the diagrams a number of younger men joined the group. Discussion about lost family, loneliness away from home and the issue of renal failure followed. Discussion also revolved around prevention and what was required. I went through some of the Kintore and Yuendumu history as well as their operations. I explained I was seeking Lajamanu people’s ideas to develop a service which best met their needs within the budget available. I explained that logistically for WDNWPT Lajamanu was difficult to operate in and that this was an issue which needed to be considered for the long term. Other matters I mentioned which also need to be considered were: the dispersal of patients between Katherine and Darwin and how service support could be organised; Whether separate incorporation was required or alignment with KWHB was an option worth considering. the extent of the service and what other communities, if any, would they consider including. While Kalkaringi was indicated as a possibility I got the impression that Lajamanu people were their initial concern. Otherwise nothing really definite re any of these issues emerged apart from agreeing that all facilities and services provided by WDNWPT and the Yuendumu project were what they wanted.
All were happy to hear of the project and expressed their long held desire for such a facility which was something they had been speaking of for some time. From this meeting I was taken by Jo James and introduced to a number of other community and family members, in so doing he also explained the purpose of my visit. After these introductions I proceeded to the clinic. Here I met Emma a nurse and Kath the administrator who confirmed my 9.30 am meeting for the following day. Following this I proceeded back to the council office in an effort to catch Mr William Lewis again. Prior to my visit I had spoken with Mr Lewis who indicted that a community meeting would be organised for my consult with the community. Hence my efforts to catch up with him; however again he was not in his office. Then went to CDEP office to meet temporary CEO David Stokes who I had also previously spoke to on the phone prior to my visit. I again went through my role and that of the development of the dx project. Mr. Stokes was very responsive and encouraging
21 albeit his position being temporary. He indicated to me a number of sites which could be suitable for staff accommodation and or location of a dx service. On stepping out of his office I noticed a number of planes landing and people walking towards Mr. Stokes office. One of whom I recognised as a CLC lawyer. It seems I arrived on a day when a large community meeting was to occur. Commonwealth and NT government reps were also landing. The Director of the CLC invited me to sit in if I chose as there was nothing else I could do while this meeting was in progress I stayed to observe.
After this and lunch I once again went looking for Mr Lewis, but again with no luck. I then proceed to the office of the GBM, Mr Dean Gooda, to introduce myself and my purpose in the community. Mr Gooda (Younger brother of Mick) was also very responsive and sympathetic to the task ahead. He mentioned to me that he is keen to assist in any way he is able and would like to stay informed of progress.
I then drove around to find the Aged Care Centre which I found locked and uninhabited.
I returned then to the CDEP office of Mr Stokes to see if Tracey Patrick, a member of the KWHB, was there. I had met here briefly on my previous visit, her husband Norbert is also an executive member. She had left the office by the time I arrived. Mr Stokes explained that the Aged Care Centre was closed as its manger was away on compassionate leave.
Wednesday 5/11/08
Called in to office to see if William Lewis was available; he was. I introduced myself and mentioned the phone conversations we had prior to my arrival. I told him I was on my way to a meeting at the clinic and asked if he might be available to assist me talk to people after this meeting. He said he would. Proceeded to the clinic; there were three nurses plus the Administrator Kath in attendance. I went through the history and current functions of WDNWPT and how Yapa now intend to utilise their mining money to establish remote dx services at Yuendumu and Lajamanu. Clinic staffs were positive in their response. One nurse, Emma said she had worked in Alice, knew Heather and may be interested in the job. I discussed the options as to how the Lajamanu people might proceed in terms of either attaching to the Yuendumu incorporation, KWHB or separately incorporating. I said that it seemed to me that the more logical and easier mechanism to proceed with would be via KWHB. I asked the staff if they were aware of what KWHB attitude might be to this strategy. While no one gave a definitive response it appeared like that it would not be a matter they would be adverse to The other important proviso I raised was the extent of the service and the communities involved. There exists it seems and which surfaced at the previous days community meeting, an historical tension brought about by the fact that Lajamanu is largely a community of Warlpiri people located on Gurindji land. So at this point in time, while I have tried no one will give again a definitive answer to this matter.
22 Nonetheless there is a renal room attached to the newly built clinic at Kalkaringi. The Lajamanu clinic administrator had said they had considered buying a small bus to transport patients should a dx machine ever be located there. While the matter of road closure in the wet was raised I was informed that this would not be a major problem. The gravel road from Lajamanu to Kalkaringi is well maintained at around 90kms in length. I was informed that currently there would not be spare accommodation for a renal nurse available within the KWHB stock. Moreover from my conversations with both the GBM and Council CEO; staff accommodation is a universal issue at Lajamanu. Later discussions in Darwin with CNM informed me that the Kalkaringi dx room has the capacity to accommodate two dx units and has been added with the intent in mind of self-care patients returning there. Discussed return to country and patient features of WDNWPT service. I was told that patients prefer to be accommodated and receive dx treatment in Katherine which is more accessible for family visits. The problem I understand is the limited dx units and accommodation available in Katherine. I was also informed that apart from normal liaison and dx unit social work services, no extra assistance is provided to patients in Katherine or Darwin as is currently provided by WDNWPT and the Yuendumu service in Alice Springs. In conclusion I was advised that the list I have from NTDHCS of prospective pts is incomplete and that there are many more people at Lajamanu who soon will be requiring dx. A revised list was later supplied to me by clinic staff indicating another 36 people with a GFR reading of 40 or less and as low as one. Moreover it was explained to me that this list did not represent the full pathology data for Lajamanu, meaning that the problem of ESRD for Lajamanu is looming as a major issue.
Following these discussions at clinic I made my way back to the office. As I walked past the store Jo James pulled up beside me to ask how I was going. He said he had been talking to people about my presence and work at Lajamanu. He pointed out to me an elderly man who he said I should talk to; that he was both a community and church leader. Jo spoke to this man while he was meeting with several other men. I waited for him to finish; his name is Jerry Tjangala. We then sat down and I went through my role and the story of WDNWPT and the Yapa push for remote dx. He said he was very happy to hear this story and that I was in Lajamanu. He explained to me that following the previous day’s meeting on the housing issue he had been thinking through the night what he could ask the ‘intervention’ people to make their desire for an 80 year lease more attractive. One item he mentioned that he had been thinking strongly about was assistance to set up dx at Lajamanu. So he viewed my presence there as quite fortuitous. I explained to him some of the conversations I had been having around the community and what I had thus far learnt and what issues needed to be resolved (listed above). In response to one of my queries he said that in his opinion he could see no real reason why setting up a dx machine in Kalkaringi and its use by Lajamanu people in the initial phases would be a problem. As we spoke William Lewis pulled up and said he had been driving around informing people, young and old, of my presence and the issues I was discussing. William and Mr Tjangala then had a conversation about the proposal and both expressed their support and happiness to each other that such an event was finally on the agenda.
23 I then got into Mr Lewis’s car with him. Outside the store we picked up two elderly women, with shopping to take home. Mr Lewis explained that the two women Biddy Nungurrayi Long and Agnes Donnelly) were senior and important decision makers in the community. He introduced me and mentioned to both what I was doing and the issue at hand. Both expressed pleasure and support for the project and said they would talk with other family members. Mr Lewis mentioned to me about aged care and asked if I knew of any communities that had aged care facilities. He expressed his concern about the elderly not being able to live and die amongst their family. I asked him if he was aware of the Yuendumu facility; he said he wasn’t. I told him that it would probably be worth a visit. I also mentioned other such services such as at Docker River, Amunturrngu and Walungurru. His question to me was if there was some means in which the two projects could work together that is aged care and renal delivery. My response was that there were some synergies between the two which could be supportive of each. Exactly how this may occur at his stage and without being able to speak with the aged care coordinator; it was difficult for me to elaborate. He then took me back at my accommodation. Here we discussed a number of the issues that needed to be resolved. (as listed previously). Mr Lewis’s suggestion was to attempt another combined meeting of community in the future. I would recommend also that other stakeholders be at his meeting as a means of resolving a number of the structural issues collaboratively. Later that afternoon I then went to the school to speak with the Yapa teachers. While waiting in the staff room for this to occur I sat beside one of the male Yapa teachers and learnt that we knew people in common through my time as lecturer with Batchelor College as his role as a student. Another of the Yapa teachers introduced herself to me as family from my Nyirrpi connections. The meeting involved seven Yapa teachers and the teacher linguist (Roger Jurrah, Belinda Baker, Steve Patrick, Elaine Johnson, Rene Dixon, Sylvia, Chris Dorma, and Maxwell Tasman). Time was constrained by an impending conference call which had been arranged for their regular meeting. I went through the detail of what my role was and the project being pursued. I also explained the development of WDNWPT and the service it was providing. I also mentioned the issues that would need to be resolved before the Lajamanu project could proceed in a clear direction (see list of issues above). Before departing one of the Yapa teachers stated that a renal service needs to be at Lajamanu.
Following this meeting, as I walked around, I again came across Mr Norman Kelly parked near the art gallery. He called me over and asked how I was going. I said that people were excited to hear that such discussions were going on and the prospect of a dx service at Lajamanu. He then mentioned his concern that the dx machine itself was problem as he had observed that people often died within a year or two of going onto the machine. He saw this as a problem with the process of dx.
Thursday 6-11-08 Departed early for Katherine. Was hoping to visit Kalkaringi clinic to inspect dx room. Had arranged with CLC regional officer to introduce me to clinic staff. but I was too early on the day and did not have the time to wait for clinic to open.
24 On arrival in Katherine I went to the KWHB offices. Here I was met by David Lyons who introduced me to other members of staff including Patrick Norbert the Lajamanu representative on the KWHB executive. I went through the usual information as mentioned above. I asked the question directly if KWHB would be interested in auspicing the project but received no direct answer. They were not ill disposed to the idea though and said they would like to know more facts and figures. Their main concern was what if any workload it may place upon their current services should they become involved. Following these discussions I met with Helen Morris a renal patient and former senior health worker for KWHB. Her concerns were no different to those of Central Australian renal clients. While listed as a Lajamanu patient Helen informed me that her community was really Kalkaringi. She spoke of the loneliness and difficulty of moving from home and family and the continuing difficulty of maintaining family and home contact. Helen had tried PD and returned home but infections had forced her to re-evaluate this option and eventually decided that haemo dx was preferable. Currently she is undertaking self-care training and is on the transplant list. Helen mentioned that suitable housing in the community as an issue for her. She had lost her community house when she was forced to dislocate to Katherine. And despite overtures to the local council at Kalkaringi, had been unable to secure reasonable accommodation for her return and was obliged to stay with other family in overcrowded conditions. Helen attributed her infections to this fact. The lack of suitable accommodation in the community she said was a real barrier for her and other patients in their consideration of returning to their communities.
Helen also explained that overall she was in a better position than most remote renal patients dislocated to Katherine in that she had been able to find work to occupy herself (interpreter with local language centre) as well as suitable accommodation. Having employment in the community was also a major issue for Helen for her to now consider any long term return home. She was also concerned with what impact any short term stays back in the community might have upon her employment and income levels. While these concerns were real and needed to be considered, Helen said that she would dearly love the opportunity to visit family even on the short term ‘return to country basis’. Helen considered that she was lucky and an exception amongst most renal patients she knew. Helen explained that most people had difficulty in obtaining accommodation and support services. All remote renal patients that she knew experienced loneliness with limited family contact and no ability to return home. Moreover that between treatments there was very little to occupy peoples’ time. Helen informed that Katherine has only one hostel for remote clients and that some renal patients were forced to live in ‘fringe camps’. Helen considered that a dedicated hostel for Warlpiri and Gurindji people in Katherine was a real necessity. While Helen extolled the virtues of the renal clinic staff she explained that there simply was not enough resources to support the needs of renal clients in matters of banking, shopping, social security, transport let alone provide programs which could occupy their time. Helen further explained to me details of a more personal nature in relation to her and her family’s current situation. Helen explained that since August this year her husband has
25 been also a renal patient and is located in Darwin. She said that her husband has been struggling with the loneliness and the difficult phase of his preparation for and the undertaking of dx treatment. The knowledge of her husband’s difficulties and the pressure placed upon her to visit him more often and even to relocate to Darwin creates for Helen a great deal of stress. Helen spoke of how she tries to explain to her husband that at the moment she needs to concentrate on her health and situation to ultimately benefit them both. While she has what she regards as good accommodation, employment and the opportunity to obtain a kidney transplant she is concerned that any move on her part to assist her husband at this point in time could jeopardise her own health and future After this discussion Helen said she would be happy to accompany me to visit Mr. Alan Tasman an old man who lives in the Kalano old timers home and to assist with interpretation. The gentleman is listed as a renal patient from Lajamanu. Helen introduced me to Mr Tasman and explained to him what I had been talking about with her. Having heard the story the old man expressed great delight and happiness. He said we had made him very happy bringing this story to him and that returning home even for a short visit would make him very happy. He said he had family at both Lajamanu and Kalkaringi and would not be of great concern to which community he returned. I got the impression though that most of his family were at Kalkaringi. He also mentioned that he has a carer but it was not clear to me where she (Barbara Patterson ) was currently resident. Helen explained to me that some time he has memory issues and requires a carer. Mr Tasman also spoke of the loneliness and isolation of being so far from home with little opportunity for family visits, minimal patient support and little activity or programs between dx. He explained that he was the manager of the North Tanami Band and was required at home. After this meeting I returned Helen to her accommodation.
Friday 7-11-08 This morning I left Katherine and proceeded on to Darwin. I had arranged a meeting at the Nightcliffe renal unit with Susan and Jeannie Herbert for 1.00 pm prior to Susan having to attend dx. On my arrival I was assisted by reception and introduced to Susan who was in the waiting area. Because of her difficulty in hearing the receptionist kindly allowed us to utilise the vacant doctor’s room. I went through the story of WDNWPT and the Yapa initiative with Susan. She was keen to hear the story and that people were thinking of helping the renal patients, saying that they had been on their own for so long with little support. Susan said at this stage, without proper accommodation and support that she would prefer short term return visits home. With regard to longer term stays Susan did not express an immediate desire to return home. In this regard she mentioned a number of factors she was concerned about. Primarily these revolved around suitable accommodation and support back at the community (she is in a wheel chair). She was also concerned that she may be obliged to support herself on dx. Susan also mentioned that most of her family currently reside at Kalkaringi. She mentioned a son and nine grandchildren who she would like to see. Susan explained the grandchildren are always asking to see her and they can only hear
26 her on the phone. She occasionally gets family visits if they are in Darwin for a meeting or church events. While speaking to Susan I phoned her sister Jeannie to let her know I had arrived. She said she would drive in immediately. With Jeannie’s arrival I recommenced the WDNWPT and Yapa dx story. During this time Susan had to leave for her dx. With Jeannie I had along conversation ranging over a number of topics. We shared a similar history in education and I also knew her brother well from my CLC days. Her brother, she explained, had passed away on PD at Lajamanu. From what I could discern he had an infection and was unable to be evacuated from Lajamanu in time. Jeannie also told me that when it was explained to her that she had renal failure and would have to leave home for treatment she cried. Jeannie said that she came to Darwin first to have her fistula done, then after six weeks had to return for dx. In 2005 Jeannie had her transplant and since that time she has remained in Darwin. Jeannie explained that when people come to Darwin they are so lonely and with so little support that some run away. Moreover some are forced to live at Bagot which she described as a ‘terrible place’ and that people have died there. Some of the support people require according to Jeannie is with accommodation, furniture and employment. Jeannie also considered that a hostel for Warlpiri and Gurindji people was urgently needed. I asked Jeannie if she remained in Darwin to look after her sister. She said that was not the case as ‘she was a big girl’ and that such a concern would not constrain her if she should ever have the opportunity to return home for any length of time. Jeannie explained that she remained in Darwin for a number of reasons, these were; proximity to health services, ‘fear’ factor re personal safety employment accommodation. an understanding that the community was supportive of her return. This was also a factor for Helen in Katherine. What I was able to glean from conversations with both women is that they feel the community councils have not been all that supportive in the past in encouraging their return. The main issue that I could determine, although there may be others, revolved around accommodation. Both women lost their homes when they vacated the community and it seems that despite past requests housing is not guaranteed should they return. Suitable housing wherever is seen by both women as a major priority in the maintenance of their well being. Of course housing has been a major issue for communities since their inception.
If the above factors could be resolved in Lajamanu or Kalkaringi then Jeannie would consider returning at the moment though her preference and desire is to be able to do short term visits. NB; with the skills and knowledge that both Jeannie and Helen possess they would be invaluable assets back in their community in any field of endeavour especially though in terms of education in primary health care and renal prevention.
27 My final interview was with Elaine the Clinic Nurse Manager (CNM). Elaine explained that she was the CNM for Nightcliffe, Tiwi and Palmerston. Elaine was aware of the WDNWPT story and had recently visited the ‘purple house’ in Alice Springs. She was also supportive of the WDNWPT approach and was keen to assist in whatever way possible to support the Yapa initiative. Elaine suggested that the renal unity could possibly provide a level of support, apart from all medical normal consumables, to whatever enterprise happens in the Lajamanu region by providing nurses on some sort of rotating roster basis. This I thought was an extraordinary gesture. Elaine proposed that such a strategy would also offer benefit to the unit and its staff by providing job variation and the opportunity to experience community life and the life of the clients they serve. She considered that many nurses would jump at such an opportunity. SUMMARY OF DATA Lajamanu Community
Given that at the moment there are only four listed renal clients as being from Lajamanu it is conceivable that a supported dialysis machine (or two) located in Lajamanu could provide extended periods of time at home for these patients. However, given the current data on the numbers of those who should either already be on dx treatment or are nearing its requirement, such an ability would reduce as the need to access such a facility grows. All currently listed Lajamanu renal clients that I spoke to are keen and supportive of a renal facility at Lajamanu. However before proceeding there are issues to be resolved. Issues at Lajamanu which require a level of resolution to facilitate the Yapa initiative are;
Renal Committee: Renal facility: Some sort of facility will need to be constructed. This could be purpose built or the purchase of the mobile demountable similar to that utlised by the NT Department of Health and Community Services (DHCS). Cost of one of these demountables is in the vicinity of $300,000 ?????? installed ????? Council identified vacant space beside the current clinic which has essential services supplied. However KWHB indicated that they have utilised this space in their future clinic plans. NB KWHB should inform council and/or shire of this. The allocation of this area for such a facility does not exist on the current Service Land Availability Plan (SLAP) for Lajamanu. Another site was indicated behind the existing clinic (lot 282) where a dx facility could be located. This site I was told also has essential services supplied but no road access, although I was informed this would not be a major exercise to rectify. Renal Nurse: Perhaps the most problematic issue to be resolved in this initiative. However one nurse at Lajamanu indicated her interest in this position. My understanding is though that she would require at least six months training and experience in a renal unit before she could take up such a role. Staff accommodation: Is a major issue across all sectors at Lajamanu. Council indicated a number of old sites which with work could be useful. Of these the best was a burnt out duplex (lot 292) opposite the airstrip. A quote to repair one side of this duplex, given last year by a builder by the name of Cliff, who does periodic work at Lajamanu, came in at $120000.00. However on inspection it appears that more damage has been since this quote so presumably the figure would now be higher.
28 Patient accommodation: As noted below this was perhaps the most central concern for the majority of patients interviewed. However if funds were available it would appear logical that the duplex mentioned above be renovated in total and could solve the issue of both staff and patient accommodation. Auspicing organisation: This issue is perhaps the first matter which needs to be resolved to begin to advance this project in a clear direction. More specifically Lajamanu people and the Kurra association need to decide whether to incorporate separately (as per Yuendumu) or utilise the capacity and resources available through KWHB (see KWHB below). The issue of amount and level of control over funds will probably be the determining factors which dictate the outcome here. Patient liaison and support: While not specifically discussed at Lajamanu it is a matter which will require some further thought and discussion as to what is required and what is possible.
Central Desert Shire (CDS), Government Business Manager GBM) and Lajamanu Community. Responses from both thus far have been supportive and encouraging and their ongoing support will be vital to this project. While things are still so much in the early formative stages of his project it is difficult to allocate specific tasks to these insitutions. The CDS’s continued commitment to the allocation of the lot 292 for accommodation is important. Securing this lot from further damage would also be of assistance. Moreover there could be other contributions in terms of subsidised power and water charges to whatever service evolves in Lajamanu. It was mentioned to me that the Lajamanu Social Club could contribute funds to assist the project. I also understand the community has three airplanes a tit s disposal. Perhaps discounted airfares for renal clients could be a consideration. In addition there are a number of major financial areas where contribution to the project would be greatly appreciated and which would indicate the cooperative and collaborative nature of this exercise. They are; Employment of project staff both at Lajamanu and/or Katherine. Construction of renal and client staff accommodation at Lajamanu and/or Katherine. Construction of renal facility at Lajamanu and /or Katherine. Administration costs Travel assistance Patient support
Kalkaringi While not specifically part of the brief for this round of discussions it is having a determining influence over how the issue of remote dx in this area may proceed. This is for a number of reasons. The relatively close proximity of each community to the other. Close family connections. However apparently there are at times political tensions between the two. From what I understand, as a result of historical forces beyond the control of the two groups, Kalkaringi is essentially a Gurundji community on Gurindji land while Lajamanu is essentially a Warlpiri populate community on Gurindji land. That both communities have KWHB managed clinics.
29 Patients interviewed have family in both communities. Moreover all would happy at this stage to undertake any dx or return to country visits at Kalkaringi. Moreover the majority expressed a preference to Kalkaringi over Lajamanu with all bitumen access being one factor mentioned. Kalkaringi has a new clinic with a purpose built renal room with a two unit capacity. This clinic has yet to be occupied.
Katherine West Health Board (KWHB)
KWHB proved at all levels to be very supportive and encouraging of the move to establish remote dx at Lajamanu. However at this stage, given the very preliminary discussions undertaken and information available, the KWHB has yet to determine its position in relation to assisting or facilitating this service. This is understandable and sensible; KWHB is in need of some facts and figures before it can offer any firm position to this initiative. In the interim though the KWHB could consider a number of matters which could help in progressing this service. Auspicing agent – if concerns of resources, staffing and infrastructure can be appeased, whether in fact KWHB would consider being the deliverer of this service. Control mechanism - if the answer to the above matter is in the affirmative then the next question becomes; Is there a mechanism within the constitution or management structure of KWHB which would enable the Lajamanu Renal Committee (LRC) decision rights over the funding they are offering? T his may be as simple as the LRC operating at a sub-committee level with their decisions being ratified at the KWHB executive level, a separate budget line and specific cost codes. Such a strategy could resolve the drawn out and costly process of separate incorporation, infrastructure and management development.
Renal clients From what I was told both in Lajamanu, Katherine and Darwin, renal patients from both Lajamanu and Kalkaringi prefer to have Katherine as their base. This would be an eminently sensible configuration, if it could be organised, for the long term efficacy of support provision to dx clients from these communities. Clients interviewed expressed a desire to return to community and families while highlighting the issues they confront in doing so. These were; . Return to country – Returning home for short visits between is something all patients expressed a desire in doing asap, as long as the concerns of safe travel were assured. . Safe travel – that travel either for ‘return to country’ or ‘going home’ will be guaranteed and timely. . Going Home - Going home for extended periods of time on supported dx was something all renal clients spoken to desired. However enthusiasm was tempered in varying degrees by their current circumstances. For some the desire to return home was overwhelming. For others there was the consideration of what impact such return may have on such matters as their transplant list readiness, current accommodation and employment.
30 Of common concern were the conditions on which they would undertake this return to country especially; o Safe dx - that their health will in no way be compromised should they undertake this option and that the dx they undertake will be comparable to what they receive in the main unit. o Accommodation – that hygienic and safe accommodation be available should they require it for their period at home. These renal clients further indicated the requirements that they and other patients regard as necessary to cope in their dislocation to Katherine apart from the overall stress of being chronically ill. . Accommodation – While there are those who have managed to secure suitable accommodation and are managing it seems that many renal pts in both Katherine and Darwin struggle with this issue. The dominant focus of discussion in this regard was the necessity for a dedicated hostel preferably in Katherine for clients from the western reaches. In addition to this there was an expressed need for those who may secure accommodation for assistance with furniture and household items. . Brokerage support - this includes support for matters concerning social security , banking, shopping, transport, emergency relief etc. . Activity programs – to have access to social, entertainment and training activities between dx sessions. Mentioned was a desire for bush outings. . Employment – two of the informants interviewed, one in Katherine, the in Darwin are employed. Both have enjoyed long working histories. It was obvious that for both this factor was a vital mechanism by which both have been able to cope with all the issues surrounding their contracting and suffering End Stage Renal Disease (esrd). It was for this reason that they considered any engagement by renal clients in work force participation as a matter worth pursuing. Moreover for them it was a major concern in all discussions about returning to their respective communities for any period of time. Both are people of such extraordinary capability that their departure must have been a huge loss to their communities as would their return would be of a valued asset.
NB: Conversations with Lajamanu renal clients were similar in many respects to conversations with patients in the formative stages of WDNWPT. Due to the untried nature of the WDNWPT strategy it was found that even despite a strong desire to return home that it was tempered by a wariness of what impact it might have upon the patient themselves. This wariness ranged in varying degrees between patients. Some were initially totally opposed fearing dire consequences while others were keen but also wanting to be convinced of their personal safety and that it would not jeopardise their position in the renal unit or whatever accommodation they had secure in Alice Springs. Another influencing factor other factor was the institutionalisation of patients. At the time of WDNWPT’s inaugural ‘going home’ one person had been on dx in Alice Springs for ten years which meant over a third of their lifetime. To give up (albeit temporarily) what security and lifestyle this person had managed to construct over time was to be a great leap of faith, but one which was taken successfully. WDNWPT also had long term patients say that more opportunity should be given to the more recent patients as they were not used to living in town while the long termers had made a level of adjustment and did not want to see these other family members suffer like they had.
31 Therefore the concerns of these Lajamanu members are real and understandable but not insurmountable if willingness and imaginative thinking can be applied.
Nightcliffe Renal Unit. As occurs for WDNWPT and the Yuendumu component of the Yapa initiative, the Alice Springs renal unit supplies all machines and consumables used in the dialysis process. The CNM for the Nightlcliffe unit confirmed that this would be the case also if a remote service began at Lajamanu. In addition to this though the CMN raised the possibility of having nurse form the main renal unit work in the remote location on a revolving basis. This was an incredibly generous gesture which certainly needs exploring further. I will present a scenario below which utilises this offer. Whether this was meant as a fulltime mechanism to overcome the issue of the Lajamanu project employing its own renal nurse or as a means of support and relief backup requires further discussion. Nonetheless such a cooperative attitude certainly augurs well for the Lajamanu project. Moreover as the CNM explained there were advantages in this strategy for the unit as well. The CNM considered that many of the renal nurses would jump at the opportunity for short term stays in the remote regions and that this would help in staff retention and staff/client relations. OPTIONS It seems to me given the information gleaned so far that I present a scenario which may if all combinations and permutations eventually fit could begin a renal service for both Lajamanu and Kalkaringi clients in a relatively short period of time. Consider that for WDNWPT it was nearly four years from the time their funds were raised before their first renal patient was able to dialyse at Kintore. Given the fact that the new clinic at Kalkaringi has a dedicated renal room with the capacity to accommodate two units it would appear to me that as soon as this clinic becomes operative so could the renal room. And by utilising staff from the renal unit a going home program could commence almost immediately. It would not necessarily need to be on a fulltime ongoing basis but simply as the staff was available. However the impact of this would be dramatic just as it was for Central Australian people to see the first renal patient back home in history. It offers immediate hope to those who may be struggling in the community with the decision as to whether to take up the option of dx or commence the palliative process. It indicates that the road east is not a one way road and that there is a return path. Moreover it begins the dialogue surrounding the epidemic of ESRD confronting these communities and does so within a visible context. This is critically important in establishing any effective approach to overcoming and preventing this terrible affliction. I understand that one problem at Kalkaringi is staff accommodation. However if these are going to be short terms stays by revolving staff, then in the initial phases the accommodation required may not need to be too salubrious and one of the intervention demountables may suffice. Projecting into the future it is not unfeasible also that renal staff located at Lajamanu in renovated accommodation, could travel to Kalkaringi to provide a service there if required. To progress this strategy then there would need to be some dialogue between KWHB, DHCS and the Lajamanu renal committee. Presumably the LRC, utilising the Kurra funds would assist in transport expenses.
32 If this strategy is feasible then at the same time work could commence on establishing the infrastructure and undertaking the staff recruitment for the Lajamanu service. Other than that what is required is as recommend below to further progress this service.
RECOMMENDATIONS Recommendation 1: Meeting of Stakeholders What is required now to maintain the momentum of this project is a community meeting involving all stakeholders to this project; I would envisage that this would include not only members of the Lajamanu community and its organisations but also Representatives from the Kurra Association. Community representatives and staff of the KWHB Renal clients Representatives from the Yuendumu Yapa Renal Committee (YYRC) The Nightcliff Renal unit CNM and whomever else she might think appropriate. Community and administrative representatives of the Central Desert Shire The Lajamanu Government Business Manager Representatives from WDNWPT.
It would be hoped that those attending this meeting would be able to bring their contribution or position, whatever that might be and negotiate an outcome which will see this project advance in a timeframe and manner suitable to the Lajamanu people. It would also I think be useful if either before or after this meeting that the Lajamanu people nominate their Renal Committee to then continue the dialogue with all appropriate agencies.
Recommendation 2: Advertise for managerial staff To progress the project to the active stage requires a dedicated person to undertake the necessary managerial and negotiating tasks involved. It would seem to me that to undertake this recruitment process one of the following organisations would need to be involved KWHB, WDNWPT or the incorporated body of the YYRC, in conjunction with the LRC and a budget from the Kurra Association. This position would be required then to negotiate if feasible the Kalkaringi option as detailed above and to begin to progress the Lajamanu service. Other duties will involve organising client return to country and their support in Darwin and Katherine. Due to current client list this would not seem to be as onerous as what is presently required in Alice Springs. However this could alter depending on the client catchment area that the LRC eventually endorses. Initially though, given both the Yuendumu and WDNWPT experiences, it is doubtful that a fulltime position, is required. But this should be open to negotiation once this position is operative.
Recommendation 3: Advertise for renal staff and/or begin training of those interested The next step in the evolution of this service and one of the first tasks of the Manager would be to recruit a renal nurse prepared to undertake the work at Lajamanu. There are though any number of variables which could rearrange this seemingly natural
33 progression. Ability to recruit staff either at the managerial or clinical level is the most obvious. Therefore contingency plans are important, as is the commitment of stakeholders to consider how obstacles can be overcome to make this project a reality. Recommendation 4: Commence return to country visits Arranging the short trips home between dialysis for renal clients is something which can be done almost immediately if it can be decided who will undertake the organisation of the travel arrangements. With so few clients involved at this stage it is not an onerous task. It will though require funds from Kurra to be made available. Return to Country is an important and tangible event which indicates to all concerned that the project has moved beyond discussion stage.
Recommendation 5: Renovate burnt duplex There will need to be done a proper quotation for this work and the LRC and Kurra will need to decide if improving this building is worth the monies or alternatives can be found. The advantage of the duplex is that it will provide two premises for accommodation which could be for a renal nurse and the client if required.
Recommendation 6: Investigate cost effectiveness of either purpose built or demountable dx facility. From what I have seen at Lajamanu there appeared little potential for a purpose built renal facility amongst the old building sites offered. There may be potential if ever a new clinic is built but that may be some time in the future. The demountable option appears to be the most cost effective at this stage.
Recommendation 7: Increase capacity of Katherine dx unit and accommodation available. The desire to have a specific dedicated hostel in Katherine for the Western connected people was strong. While acknowledging that initially Darwin is the unit to which new dx patients are obliged to attend for fistula insertion etc; the coalescing of these patients in Katherine would assist in the long term organisation and delivery of the Lajamanu renal services. Failing this it becomes problematic as to how to organise such support services. Perhaps ‘return to country’ visits and ‘going home’ events could be organised from Katherine via KWHB with Darwin unit staff being informed so as to assist patient in accessing their arranged transport. With regard to brokerage (patient support) perhaps costed care packages for each client could be offered to organisations located in Katherine and Darwin willing to undertake this work. Any increase though in client numbers in Katherine would mean increasing the capacity of dx facilities in the town. If DHCS is unable to increase this capacity then whoever takes up the baton for the management of the Lajamanu service will perhaps need to consider this issue. A similar set up to WDNWPT’s in Alice Springs may suffice. Another option perhaps is that a private contractor may take up this potential extra load, as is occurring in Alice Springs. Unfortunately due to time constraints a visit to the Katherine dx unit did not occur. Recommendation 8: Include Kalkaringi renal clients in service provided.
34 It would appear logical that the Kalkaringi renal clients come under the umbrella of support this service will eventually offer. Especially given that the majority of renal clients I spoke to indicated Kalkaringi as either their preferred place of return or one they would be happy to return. All it seemed had family there. It would seem somewhat inappropriate to not offer the same opportunity for those who are listed as Kalkaringi clients. Moreover it might prove to be a positive gesture of good will on the part of the Lajamanu people particularly if Kalkaringi is to be the first staging post of their service.
Glossary of Terms Going Home Refers to going home on supported dx for short holiday visits. The length of time spent at home on such a trip can vary for a number of reasons; The number of clients wanting to undertake these trips The particular circumstances/need of the client at the time Ceremonial events Weather
Supported dx Refers to gong home to undertake dx with the assistance of a trained renal nurse. Return to Country Refers to short trips home for whatever reason people require. These generally occur when the prospective client has their longest spell between dialysis. Currently WDNWPT and the Yuendumu projects offer six paid return journeys home for each client. Brokerage Refers to all manner of support services made available to renal clients at the site of their dis-location.
Acronyms. CDEP Community Development Employment Program CDS Central Desert Shire CEO Chief Executive Officer CLC Central Land Council CNM Clinic Nurse Manager DHCS Department of Health and Community Services Dx Dialysis ESRD End Stage Renal Disease GBM Government Business Manager KWHB Katherine West Health Board LRC Lajamanu Renal Committee WDNWPT Western Desert Nganampa Walytja Palyanytjaku Tjutaku Aboriginal Incorporation.
35 Attachment B
Lajamanu Dialysis Service Project Development Manager
Duty Statement
24 hrs per week for 26 weeks Salary: $49920 pa (full-time $79,040) Salary Sacrifice through CBB Six weeks annual leave per annum
Project Description
Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (WDNWPT) is a not for profit, community based organisation providing town-based and remote dialysis services for Western Desert Dialysis patients. In March 2009, WDNWPT completed a feasibility study into options for establishing similar services for Lajamanu Dialysis patients on behalf of Kurra Aboriginal Corporation (a body established to facilitate royalty disbursements for specific Warlpiri families and communities). This study raised a number of significant logistical issues which need to be resolved if a service is to be established.
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Duties The project manager will be responsible for implementing the development phase of the project and making significant and demonstrable progress towards each of the following outcomes:
a) Induction into the project by WDNWPT staff including familiarisation with possible project models, introduction to the community-based dialysis model at Kintore as well as meeting patients and families, RDU staff etc
b) Establishment of a kidney committee to provide community, family and patient input to project development and to establish rules and broad guidelines for the running of the project
c) Resolution of outstanding issues including catchment area, auspicing, relationship with Katherine West Health Board
d) Development a detailed budget for the establishment of renal dialysis and social support services for the region.
e) Explore funding options
f) Reporting consistent with the WDNWPT and Kurra Aboriginal Corporation Agreement
36 37