"Access To Specialist Healthcare in the Kimberley For Desert People."

About: Broome Health Campus

(as the patient),

I am an Aboriginal man living in the remote desert area of Mulan Aboriginal Community in the Tanami Desert. I live with my elderly wife and extended family. Mulan is our home.

For people living in very remote communities such as ours, English is a second or third language. Communication with mutual understanding is vital.

I’m sharing this story about our recent healthcare experiences so that frail persons don’t suffer as my wife did.

Recently my wife required a cardiac appointment in Broome. This involved a morning flight from Mulan to Halls Creek; waiting for the Greyhound bus; then leaving at 10pm that evening to ride to Broome (8 hours to the west). All this was booked through the Patient Assisted travel Scheme office (PATS).

After her appointment my wife was left in Broome with no money, no return bus fare and no accommodation. She spent the night homeless. My wife was rescued by the local police who recognised she was hypoglycaemic and took her to Broome Hospital where she was stabilised. With the help and intervention of a friend, PATS was contacted and a return bus fare was organised for that evening to Halls Creek where my wife was hospitalised for three days waiting for a flight back to Mulan. This could have been avoided with better planning, travel, accommodation and effective communication.

One possible solution is to explore the possibility of using the Kimberley Aboriginal Medical Services (KAMS) plane which arrives every Friday from Broome with medicines for the clinic, and transports nurses in and out. Why can’t some of our mob go on that plane for appointments, so avoiding all those hours of travel, especially for our elderly?

My wife also suffers from serious kidney issues. We have been told that renal dialysis is the next step. This will involve twice weekly dialysis which would be done in Broome. For this treatment, we will be expected to leave our family, “country” and home to live in Broome, over 1000 kilometres away.

Kidney disease is a major health concern in our communities. My point is why can’t we have a dialysis machine in Balgo - our biggest community in the desert, 30 minutes from my community? This would reduce the number of patients and their carers travelling to a major town, so avoiding a lot of financial and other social situations. I know there are renal machines in other communities - it makes sense! In the long run, the money spent on transferring our mob across the Kimberley would surely pay for a machine and staff.

My wife will require ongoing medical care. Yet her experience is part of a much larger story where our younger people (who escort loved ones to towns for treatment) are subject to the vices a town offers. In going to town, many of them get lost from their cultural identity. Having services in country closer to home and keeping our families in community helps to avoid these social issues.

I hope that sharing our story will result in more effective planning and improved services in the future.

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Responses

Response from Margi Faulkner, Operations Manager, Broome, WACHS - Kimberley

picture of Margi Faulkner

Dear Mulan Man,

Firstly I want to apologise again for your wife’s experience in Broome. It was very good of your friend to notify us of your wife’s situation at the time, and I am pleased the PATS officer on the day was able to make contact with your wife and her escort to provide them with some refreshments and return tickets to Halls Creek. You are right, there was a communication issue in the arrangement of this trip, as the PATS staff had expected your wife to return to the PATS office directly after her appointment to retrieve her return ticket, but this was clearly not your wife’s expectation. We will work to improve this communication.

I would also like to thank you very much for engaging with us in this forum to share your story, which was clearly distressing, and yet also includes suggestions for improvement. Your story is a great example of what a forum like this can bring to the planning and delivery of health services.

The WA Country Health Service aims to provide care closer to home, where this is safe and feasible. We need to hear from the people living in communities like yours to be able to gain a real appreciation of the challenges you face, and work to ease your access to our services, either by better travel arrangements, or bringing the care closer to you.

Where possible, in new remote clinic builds or funded remote clinic refurbishments, we are ensuring there is the capacity for a dialysis room to accommodate home dialysis therapy on country. Examples of this are Wangkatjunka and Looma remote clinics. There are Renal Dialysis Hostels being built or already built in Kununurra, Fitzroy Crossing, Derby and Broome, to ease the burden of accommodation when people do need to attend the dialysis centres in those towns. WA Country Health Service is also developing a Renal Health Strategy, and will continue to work in close partnership with our renal service delivery providers.

I agree there are also opportunities for us to work more cohesively with other agencies in the Kimberley in undertaking the logistics of moving our consumers, equipment and those delivering care around the region. You have provided some very logical suggestions to resolve the issues you raised, and we would like to arrange to meet with you, and members of your community, to further identify the barriers you face accessing health care and your suggested solutions to those barriers.

You can contact me on 0417 987 724, or Margi.Faulkner@health.wa.gov.au to discuss how to arrange this meeting. The other signatories to this reply will also attend to engage with you and your community.

Margi Faulkner, Broome Hospital Operations Manager

Dr David Gaskell, Kimberley Regional Medical Director

Carmen Morgan, Kimberley Regional Director of Nursing and Midwifery

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Update posted by Mulan Man (the patient)

Having dialysis at the towns means that people have to leave country, have to leave community, for treatment medicine.

This means many of their family will follow them, and that brings other problems like drinking and bad social things.

Bidyedanga has a dialysis place, as do Kiwirrkurra and Yuendemu, and it has stopped many other problems, mainly people being close to alcohol and other things.

Someone needs to look at the "big picture", by putting the dialysis medicine in other communities, there will be a lot saved.

Response from David Gaskell, Regional Medical Director, Medical, WA Country Health Service We have made a change

picture of David Gaskell

Dear Mr Mulan Man

We've had opportunity to talk together recently which I've valued.

Thanks to your help, I want to share here some of the changes we've made in improving our health services.

As you know, the Patient Assisted Travel Scheme (PATS) provides travel and accommodation subsidies to patients for whom specialist care is not locally available.

PATS is State-funded with one policy for all WA. All PATS staff are required to follow these State-wide rules. They seek to ensure a safe and planned journey when transporting clients from home to a health service and back.

PATS policy ensures that vulnerable patients can choose a family member as escort to accompany them. This escort is responsible for assisting the patient throughout the journey. Roles include assistance in communication, physical support, need for encouragement, and help with cultural needs. You have pointed out that some aboriginal people speak other languages more fluently than English (like Kukutja). PATS staff seek to identify need for a translator and so make necessary arrangements.

Yet there are many variables beyond our control which create uncertainty – like phone coverage, bus and plane operations, timings, the conduct of the escort and other people, or the weather. For the patient, navigating all this uncertainty only compounds the stress of suffering and separation from home. Of all this, I am mindful.

So, in response to the first part of your story, have we done anything to improve the provision and quality of our PATS services?

Yes, we have made several improvements. Here's the current situation:

The PATS booking service has been increased from 5 days to every day of the week, from 0800hrs to 1600hrs, by phone or email. This ensures that, every day, a PATS officer is able to make a booking or assist a patient with their journey. We have extended the Aboriginal Liaison Officer (ALO) service from 5 days to every day of the week. ALO hours have been extended also. Broome now has 5 positions. Between them, they work every day, including weekends, from 0630 to 2200 hours. As this period covers the arrival and departure times of all scheduled Greyhound bus and plane services, an Aboriginal Liaison Officer is present to meet clients from their plane or bus and assist them with their onward journey. So transport home can be booked, our Aboriginal Liaison Officers inform all transiting clients to present to the PATS Front Office. With arrangements in place, patients return to and wait in the transit lounge. From there, an officer takes them to the bus or plane on time. Remoter health facilities do not have a PATS Office, of course, so the PATS team works closely with local staff to ensure that travel planning and documentation are explained clearly and in person to clients. A spare seat on the KAMS (Kalamunda Aeronautical Model Society) plane, when available, has been allocated to PATS clients and will be used for this purpose in the future. A major development just pre-dating your post was that WACHS Kimberley secured the Skippers Charter Plane service from Broome to Halls Creek via Fitzroy Crossing, 3 times weekly. This flight schedule had been at risk of closure.

Thanks for your engagement on and off line. I think that being in closer touch makes so much difference. I'm aware that your wife had an awful experience not long ago. I hope that she gains some peace of mind in knowing that you sharing her story has led to improvements which will help other patients on their travels to and from health care.

Regarding the need for dialysis care closer to home, we have spoken together. I need to post this now yet I wish to reassure you here that the 'bigger picture' is being looked at by all the key agencies - WA Department of Health, WA Country Health Service, Kimberley Aboriginal Medical Services overseeing the Kimberley Renal Service, and our visiting specialists from Royal Perth Hospital. Much thought and planning are going in to improving the delivery of quality-assured services closer to home. In the township of Fitzroy Crossing, for example, a new Renal Health Centre is soon to open with 4 dialysis chairs. Yet there are many communities (as in your desert community of Mulan in the Kutjungka) without access to a haemodialysis service nearby. We are acutely aware. All of us Kimberley Health providers want to deliver the State Government's commitment to have a mobile dialysis unit operate here in the dry season, as soon as possible. This will allow dialysis patients to go home for a while so they can re-connect with family and friends on Country. Given the right resources, this will be delivered. I will keep in touch.

Would it be helpful if we meet together? If you would like this, if privileged to be invited, I will come to your Country soon.

With best wishes to you and your wife,

David

Dr David Gaskell

a/Regional Director, Regional Medical Director

WA Country Health Service, Kimberley

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Update posted by Mulan Man (the patient)

Thank you Dr David. I will show this to other people here before making answer.

Response from Maureen Crowther, Patient Flow /Patient Opinion Cordinator, Nursing, WA Country Health Service

picture of Maureen Crowther

Dear Mr Mulan man

We would like to thank you again for sharing your story on Patient Opinion.

In regards to having access to dialysis closer to your home, we would like to reassure you and the community that WACHS Kimberley has been working collaboratively with other inter-government agencies for some time now to address the concerns that were raised by you.

The issues such as the safety, geographic location, financial and human resources and complying with National Standards to deliver a quality, safe and sustainable health care service for now and in the future are embedded into our planning processes.

Strategies to deal with Kidney disease, access to palliative care and chronic disease management, to name a few, are on our agenda. The issues you have identified in your community at Mulan are also issues for many other remote community members. We are closely working in partnership with other agencies to strengthen the approach while working towards mutual health outcomes.

Again, thank you for the opportunity to discuss your situation and exchange phone calls.

We would value the invitation to meet with the community elders to move this discussion forward by working together in reaching a common goal.

We wish you and your wife well and rest assured we will be working towards the bigger picture.

Kind regards

David Gaskell, Regional Medical Director

Josephine Grey, Regional Aboriginal Health Consultant

Maureen Crowther, Regional Patient Opinion Coordinator

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