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Gathering Perspectives ‐ Finding Solutions for Chronic and End Stage Kidney Disease

2018; Wiley; Volume: 23; Issue: S1 Linguagem: Inglês

10.1111/nep.13233

1440-1797

JT Hughes, L. Dembski, Vicki Kerrigan, SW Majoni, Paul Lawton, Alan Cass,

Mental Health and Patient Involvement

New health technologies, diagnostic and therapeutic capabilities are continually being developed and implemented, along with constant reform of the supporting health services and systems. It is critical that health services understand how health care users perceive services and if services are fit for purpose. All Australians can contribute to health care design and support change to improve health service delivery. Changes in health care delivery or health care reforms should at the outset document the rationale for change, how and in what way services will change, the measurements that will be used to determine that change has occurred, how a successful outcome will be defined, and which parties were included and excluded from the consultation and change process. This report documents the discussions of the inaugural ‘Indigenous Patient Voices: Gathering Perspectives Finding Solutions for Chronic and End-Stage Kidney Disease Symposium.’ This written report accompanies an audio-visual report (http://bit.ly/2zBw4ol). The priorities of health care users, the expert-patients, and carers are documented. The expert-patient delegates highlighted a number of barriers to delivering quality health services for chronic and end stage kidney disease. The feedback from expert-patients provides a clear rationale for health care reforms. There was agreement by the non-patient-carer delegates that reforms were needed to improve access to and utilisation of health services. Key issues discussed included where and how services were provided; how health information was provided; communication processes and the makeup of the renal health care workforce. We urge accountability of Australian state, Territory and federal government Health Ministers to this call to action. As elected members to government, Health Ministers are tasked to work closely with renal services and other key stakeholders to ensure that health services deliver high-quality, accessible and equitable care for Aboriginal and Torres Strait Islander people with chronic and end stage kidney disease. Such high-quality services should invite consumer participation and be responsive to consumer views in design, implementation and evaluation. Patient Delegates Mr John Ashley Mr Timothy Bidingal Butjala Mr David Croker Ms Dorothy Djakarrni Wubulkarra Ms Gloria Friday Mrs Maude Hastie Mr Peter Henwood Ms Del Hunter Mr Jimmy Langdon Mr David Marpiyawuy Mr Ronno Morgan Mrs Aurelia Munkara Mrs Julie Namala Ms Irene Nangala Ms Cathie Nickels Mr Dunba Nunju Mr David Oosen Ms Laurencia Parmbuk Mr Victor Punguatji Mr Lachlan Ross Mr Laurie Sandy Ms Betty Tekahika Mabo Ms Toni Wanambi Mrs Mary Ward Carer- close support person delegates Ms Jessie Alderson Ms Janet Ashley Ms Coralie Morgan Ms Bernadette Nunju Mrs Annette Oosen Ms Ada Parry Ms Evelyn Punguatji Mr Saila Savage Ms Sharon Ward Non-patient, Non-Carer delegates Ms Rozhin Asghari Ms Kelly Avery Dr Richard Baer Ms Rebekah Baird Ms Margo Bell Dr Amelie Bernier-Jean Ms Sarah Brown Ms Lauren Caruana Professor Alan Cass Mr Craig Castillon A/Professor John Collins Ms Helen Coolican Professor Jonathan Craig Ms Jenny Cutter Mr Paul Dale Ms Urmila D'Cunha Ms Lenore Dembski Ms Kerry Dole Ms Donisha Duff Ms Vicky Duff Dr David Fernandes Dr Emma Fitzsimmons Mr Robert Gardos Ms Talia Gutman Ms Heather Hall Dr Martin Howell Dr Jaquelyne Hughes Dr Namrata Kanal Dr Christine Kemp Ms Vicki Kerrigan Ms Francine Koh Dr Paul Lawton Ms Helen Mahony Dr Sandawana William Majoni Ms Yvonne McCauley Professor Stephen McDonald Dr Andrew McNally Ms Liz Nichols A/Prof Suetonia Palmer Ms Charmain Patrick Ms Rochelle Pitt Ms Pepita Pregelj Ms Stef Puscka Ms Jennifer Robb Dr Cherian Sajiv Dr Thwe Soh Ms Mikaela Stafrace A/Prof Rachael Walker Ms Pamela Wood Experts in kidney health, including patients and health service providers, gathered in Darwin on the 6 September 2017 and contributed to the inaugural Indigenous Patient Voices Symposium. The Symposium was a satellite meeting within the professional learning program of the 53rd Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology (ANZSN). These kidney health experts comprised patient-experts, close support people or carers, and ‘non-patient-carer delegates’ who included a diverse range of the nephrology and primary health care medical and allied workforce, researchers and policy leaders. Representatives of the meeting sponsors – Kidney Health Australia, Novartis Australia and Astellas Pharma – also attended. The meeting was sponsored by a third-party sponsorship arrangement with industry, Astellas Pharmaceutical and Novartis Australia, Baxter coordinated through Kidney Health Australia. Funding for the full cost of the meeting ($40 000), which enabled interstate patient and carer delegates to attend, was secured on the 3 August 2017. Sponsors did not contribute to the meeting program or contribute to the writing of this report, and senior sponsor representatives participated in the symposium as other non-patient non-carer delegates. Haemodialysis is the predominant treatment available to support Australians with end-stage kidney disease, but particularly for Aboriginal and Torres Strait Islander peoples. Patients and clinicians recognise that frequent regular dialysis is critical for good health, thus securing regular haemodialysis whilst travelling is necessary. Several factors were critical for the successful hosting of the Symposium, and enabling patients to attend. This included external sponsorship for accommodation and transport of local and interstate patient and carer delegates and the availability and coordination of haemodialysis treatments for non-local delegates in Darwin. Patient-delegates were Aboriginal and Torres Strait Islander peoples, who were currently receiving supervised care by a nephrologist, and lived in the regions of the Top-End and Central Australia of the Northern Territory, Cairns and Hinterland and Thursday Island of northern Queensland, and the Kimberley region of Western Australia. Invitations were encouraged across the spectrum of chronic kidney disease, haemodialysis (nurse-assisted in a regional, remote or urban satellite unit), peritoneal dialysis, home haemodialysis and transplantation. Kidney Health Australia supported the identification of patient participants from Queensland and Western Australia. In the Northern Territory, patient-delegates were identified and supported to attend from Central Australia by Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (WDNWPT) and the Top-End Renal Service in the Top-End Northern Territory area, and through clinician local networks. Patient delegates travelling from outside Darwin were offered funding to enable a carer or close support person to travel with them. An email was distributed to key delegates attending the Annual Scientific Meeting, targeting senior nephrology clinicians, policy makers and researchers. Within the Darwin area, the invitation was also extended to primary health care staff and specialist renal health care workers. There was an open invitation during the ANZSN ASM conference for delegates to attend. Non-patient and non-carer delegates were invited to participate in the after-lunch sessions, which enabled the patient and carer delegates to meet and discretely discuss their priorities that they wished to communicate. The facilitator was required to be an Aboriginal or Torres Strait Islander person, who had experience in meeting design and facilitation, an understanding of health and Indigenous cultures, and was available to work with the meeting organisers to design a program that would achieve the desired meeting goals. The Indigenous Patient Voices symposium brief was to facilitate a culturally appropriate shared learning session that would enable patients and carers to contribute their experiences of kidney-related health care with a non-patient non-carer audience. Over a period of six months, several facilitators were considered. The symposium facilitator, Ms Lenore Dembski, was engaged on the 4 August 2017 following confirmation of funding. The facilitator is a senior Aboriginal woman from the local Darwin area, a business woman and a meeting facilitator. Other skills included cross-cultural training and certification, and previous experience in senior government department positions. Ms Dembski had been commissioned in October 2016 by the Annual Scientific Meeting (ASM) local organising committee for a separate ASM task (to deliver locally produced conference bags which were elaborated with Indigenous bush foods designed by Indigenous artists, and were compact and recyclable and had a low environmental footprint). Therefore over 12 months, the facilitator and meeting organisers had developed a shared understanding of the ANZSN Annual Scientific Meeting, attended by almost 500 delegates from Australia, New Zealand and South-East Asia, and the desired outcomes for the Indigenous Patient Voices Symposium. The facilitator was given creative licence to develop the symposium program in order to achieve the brief. The facilitator used her local network to identify an Indigenous artist (Ms June Mills of Larrakia Nation Arts) to design the Indigenous Patient Voices Symposium logo and screen-print onto delegate t-shirts. The facilitator engaged regularly throughout the day with expert-patient and carer delegates to ensure all who wanted to share at the open session were given the opportunity to do so. Owing to usual haemodialysis schedules, patient-related fatigue or other factors, additional patients joined or others departed after the symposium morning tea. This extended the timetable to ensure participation of all patients, enabling them to speak first, before seeking reflective responses from the non-patient-carer delegates. Thirty three expert-patient and carers attended the symposium, with 21 speaking openly and sharing their stories of chronic and end stage kidney disease. The facilitator did not restrict the themes or content of the expert-patient or carer feedback. In the later open sessions with non-patient-carer delegates, the facilitator asked the patient-expert speakers to share their experiences in a particular order to help draw out the emerging themes from their narratives. Expert-patients shared their experiences of living with chronic kidney disease, renal replacement therapies, and their experiences of the health care systems available to them. Patients highlighted shortcomings with service delivery, along with their proposed solutions. While the expert-patients were sharing their experiences, the non-patient carer delegates were invited to sit and respectfully listen without interruption until the expert-patients had completed their feedback. Throughout the day, all non-patient-carer delegates were encouraged to consider their personal response to the feedback in support of the expressed priorities of Aboriginal and Torres Strait Islander health care users with kidney diseases. In the session following afternoon tea, the facilitator invited other delegates to respond and outline suggestions or ask questions about ways forward to advance patient-led priorities in kidney health. The meeting with all delegates present was recorded and filmed with participant consent. Film excerpts were used to form the audio-visual report (led by Vicki Kerrigan). Consent to have their stories recorded for this purpose was gained from participants. Patients asserted that their account of their experiences, shared within the meeting, represents and will remain their own property. For the written report (led by Jaqui Hughes) the shared feedback was recorded in detailed notes and digitally recorded. Expert-patient feedback was clarified with individuals where necessary. All narratives were transcribed verbatim and thematically analysed. Expert-patients introduced themselves in the following manner: ‘This is my name, skin-name, totems, and community, work-history, family and custodian responsibilities.’ These matters of fact life experiences tell an important story of Australia's post-colonial history and provide a base upon which to build effective systems of health care to improve health outcomes and realise health equity for people with chronic and end stage kidney disease. Patients described key historical events that have shaped the way they live their lives. They shared experiences, both their own and from their families, of being relocated off country to settle in townships, and the removal of children from parents and families to government sponsored institutions. Within those government sponsored institutions, people described systematic bias towards limiting (or denying) their cultural practices and speaking Indigenous languages. Many were denied a post-primary school education, and employment opportunities were therefore limited due to poor educational attainment. External agencies exerted control over Aboriginal and Torres Strait Islander people's lives through controlling their movements, income, and marriage relationships. Patients pointed to key historical milestones, including the 1967 Australian Referendum, which included Aboriginal and Torres Strait Islander people in the national census and allowed the Commonwealth government to make laws for Aboriginal and Torres Strait Islander peoples; the successful Australian High Court Mabo decision recognising native title in Australia, which rejected the colonising ideology of Australia being nobody's land (terra nullius); and families returning to ancestral homelands if they were able to secure Aboriginal Freehold. It was recognised that gaining access to traditional lands has not been available to all dispossessed Aboriginal and Torres Strait Islander people. ‘A dialysis patient being away from home and families, is no good’ ‘My community is 1000km from Darwin. I've been on dialysis now for 3 years, and I am based here now because I have to be close to treatment.’ ‘We've got to leave our homes and come to Darwin. It's a long way. It is a sad story. Think about it deeply, properly and seriously, because it is a serious problem.’ ‘I live in a hostel by myself’ ‘I used to work a lot but now I sometimes just stay home at the hostel. I get very tired and I don't know what to do really at home [the hostel], we don't go out’. ‘It is very expensive to live here, very expensive, and it is hard to find accommodation – you have to wait for months and months or years’ ‘Sometimes we have to live in the long-grass, because the hostels don't have enough spaces, and we have to move out when they have another booking.’ ‘Families living in Darwin [for dialysis] are missing out on ceremonies, funerals and other important stuff’ ‘If there is a process, let it be known’ ‘There are seven of us here now [in this town] from my community, why can't we have a dialysis machine there now?’ ‘[Patients and] families from different islands [within the Torres Strait] are living in Cairns and Townsville [for dialysis] because they can't go back; there is no [dialysis] machine]. And they cry, their tears are running, because they want to go back home, they miss their families, they miss the lifestyle of the islands, because they are islanders.’ ‘We need to have something done for us, like putting in dialysis machines for us there and nurses and doctors.’ ‘To make our lives better, they should be building facilities in more remote areas’ ‘It's really important that if we have to pass away [die], it's got to be on country.’ ‘We believe country heals you, gets you better.’ Expert-patients described several deficits including low community awareness of kidney health and chronic kidney disease, which can perpetuate future risk and burden of disease among younger generations; inadequate primary and secondary prevention strategies to inform people at risk of progressive kidney disease; the devastating impact of a late diagnosis of advanced or end stage kidney disease; numerous barriers to accessing health services; and lack of information about how renal health services operate. Patients described current models of care as having a biomedical focus and not being holistic. Current models of kidney care ‘missed the mark’ by failing to address patient-prioritised outcomes. The reported lack of patient-centred care was discussed as a lack of respect for patients as individuals within health services which were not culturally safe. Patient-experts spoke of the vulnerability of being on the receiving end of health services which they often perceived to be uncaring, which had inbuilt punitive consequences for ‘non-conforming’ patients. The personal lived experiences of kidney disease included disbelief, separation and loneliness, leading to extreme distress. Patients reported having their life course determined by key people (gate keepers) who were poorly informed regarding their priorities. They recognised that a health workforce that did not include people from their own communities compounded their loneliness and inability to be understood. Even where processes for health care user feedback existed, through which patients might seek to report these experiences of care, patients expressed a lack of awareness regarding these processes. Expert patients reported the models of health care available to them failed to address the issues of forced relocation. This included the inability to access affordable, timely visits to live in their own homes with their family (in homelands), care which did not meet the patients’ needs to be present at critical family and community events, and failure to ensure safe and suitable housing in centres where patients relocated. As a result of forced relocation, patients had diverse occupations which were forfeited following dialysis initiation. Patients reported high away-from-home living expenses, limited access to financial supports whilst managing fixed expenses. One delegate had submitted a declaration of marriage separation (for medical reasons) to Centrelink in order for his wife to continue to access support for their children. Patient and carer delegates offered specific and holistic solutions at the Symposium. These solutions included improved access to healthcare in community; addressing deficits in how health care information is provided; the need for an appropriately equipped workforce. ‘Self-determination’ was a term used by delegates to articulate processes to achieve their desired models of renal care, in partnership with Indigenous organisations. They asked for an engaged Indigenous leadership to advocate for urgent health care reforms. Patients called for renal care close to home that must provide cultural safety and include a workforce membership from their own community. They identified the tremendous healing provided by being in their lands, in those places where they have real status as persons (as opposed to ‘factory line’ patients). They called for a strengthened partnership with primary health care and meaningful health promotion in relation to chronic disease awareness and education. They did not believe the current models of renal care were fit for purpose, and called for external strategic partners to work together with renal services to redress this – including land councils, primary health care, elected members from their communities, local, state and national representatives and the Prime Minister. ‘You know, this thing with the dialysis machines and all that…..it was set up in the city and I think they sort of made it for themselves, to treat themselves (who live in cities). And we see it as Indigenous people. We have our own country out bush and we'd like it (dialysis and transplantation) to be out there with us, you know? Treating our people in our home, in our country where we belong. Safe’. ‘I want it to get off the ground and have nurse supported haemodialysis at home, I would like to go home, it is better than here. I thank you all, the doctors that have helped me with the dialysis.’ Delegates requested health services recognise vital roles of key community members who may be unable to independently self-care with dialysis, but who had critical needs to remain on country. This was a feature for everyone – the right to be able to live in their country and homes while accessing health care, but particularly highlighted for elders, and community and cultural ceremony leaders. ‘We want them (the elders) to stay in communities. They are the old people; they have to hold country and family together for us. If he (my elder) has a problem, and needs an appointment (at the hospital), he can come in, but then he has to go back to our country’. ‘So I miss all those things, but hopefully, you know, I would have been really very happy if I had a dialysis machine there at [my community], just maybe one (machine). I want to try to find someone or ask someone who could help me. If I could get one –just one dialysis machine to get over there in [my community] – I don't know how much it costs- and then I can have my dialysis there’. ‘I've got a good team behind me in [my regional renal support hub]. We have a good doctor and nurses behind us in the renal team - they are really good to me, and have put me on the right track.’ ‘We didn't have enough information, about how to be a living-related kidney donor, who to go to if you wanted to be a donor; the way the doctors had spoken about it with them really hurt me’. ‘I think there is still a lot more to be done [about workforce] out in the communities that are remote.’ ‘For nearly 10 years, I fought to have that dialysis machine in my community for him [my brother], but I didn't have any support at all. There was no support, so he passed away, and then it was my turn to come here [to town] and have dialysis’. ‘We need more consultation with the government, about getting more renal dialysis machines over there [in communities], keeping family on country, and maybe train them up on how to be on the dialysis machine, with local renal nurses to train and teach our mob to do things for ourselves.’ ‘…to be self-determined to work with our own people.’ ‘So today I'm in the middle—there is a right hand, like the prime minister and the left hand, like other people, but I'm only in the middle you know. People of different nationalities or culture or countries have a different (world) view of the ways things should be. I have an important and wise worldview of the ways things should be for my family and my community, and my homelands…- the ways kidney treatments would work better’…’I've got other things to talk about still, but there is another thing to do now, we have to drive to meet our health minister after this at Parliament House’. ‘The main message we want to send to the government is that we want to have our treatment on our own country.’