'Beyond Bricks and Mortar - Building Quality Clinical Cancer Services' Symposium 2011

Cancer Link Nurses: Strengthening Support & Connecting Care - Ms Maggie Stowers

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Cancer Coordination Manager, Barwon South Western Regional Integrated Cancer Services

Download powerpoint presentation by Ms Maggie Stowers (PDF 2391 KB)

Norman Swan:

...coordination right at the interface, an experiment that's been going on in Barwon on the Cancer Link Nurse. Could you please welcome Maggie Stowers.

Ms Maggie Stowers:

Thank you very much. Thank you very much to the organisers and Abel for this invitation to share what we’ve been doing in the Barwon south western region of Victoria, as far as cancer co-ordination is concerned.

I was a breast care nurse in another life, so it is normal for me to be following along behind a breast care surgeon. Are there any nurses in the room, to make me feel at home? Fantastic, I feel better now, thank you. So, I am going to talk a little bit about the Regional Care Co-Ordination that we have had some pilots and projects in, and we collected some patient data. So, I am going to talk just a little bit about what the patients told us they would like, and about the Cancer Link nurse model, which we have very recently introduced.

Some of you of course, will know about the Integrated Cancer Services, and we are working to implement the cancer reform agenda for the Victorian government, and we are funded by the Department of Health. Here is a little snap shot of our beautiful region. As you can see, there is the beautiful Great Ocean Road, moving across then, that is Bells Beach and across to Portland, where there is lot of shipping and a smelter. And, then the refinery in Geelong. Some beautiful light houses along the Great Ocean Road, and there is also a lot of farming.

So, there is a map of our region, and I have been sitting next to someone from Western Australia and distances just don’t compare when you start talking about other big States. But it is still a long way for our patients. The main treatment centre is in Geelong, and as you can see, right down in Portland, our region goes across to the South Australian border. It can still be four hours travel to the main treatment centre and radiation oncology centre in Geelong. There is a picture of Barwon Health on the waterfront there. It is a beautiful place to be based, and that is where our team is based. And, as you can see, it’s quite a big concern, Barwon Health. One of the largest regional hospitals in rural Victoria, the eighth busiest hospital in Australia, and the third busiest in Victoria. And, you can’t go very far in Geelong without realising it is the home of the Cats.

The Andrew Love Cancer Centre at Barwon Health, these are some of the services. It is quite a big centre, and we have the only regional autologous stem cell transplant service. We have quite a well-developed haematology and oncology clinical trials unit and obvious other service there that you can read for yourself. I have been working closely the last few days with the Radiation Oncology team and I have prepared a slide especially with all of the details for you, and they are sitting at the back of the room, and they promise to answer any hard questions. So, there you go.

So, it was the first Victorian regional radiotherapy service established in 1992, and in 2006/7, the whole Andrew Love Centre went under quite an extensive refurbishment and upgrade. We now have two linear accelerators, a dedicated large wall CT scanner, actually located in the Radiation Therapy Department. The installation of Eclipse planning system happened, and two new bunkers, to take the total to four.

The service also offers – and I put those four words there, because I work closely with my consumers, who say there are just too many acronyms sometimes. So, IMRT and PMAT, and there are the statistics, fresh off the system that Michelle was very kindly able to get for me, to show you the volume of work.

So, why Regional Care Co-Ordination? When we did our original service mapping, we travelled around and met with all of the teams and met with focus groups and support groups, and the patients told us that they just needed to access so many multiple providers, that assistance with co-ordination would be fantastic, and the clinicians told us that they lost communication when they referred their patients on, particularly around the area of discharge planning. And, this care co-ordination, particularly nursing care co-ordination, is emerging nationally and internationally, and the co-ordination for patients is very much a State wide and national priority area. And, COSA have formed a special interest group, of which I am a member, and we are looking at strategical approaches to care co-ordinator’s positions, looking at evaluation and looking at how we can stream line and do this together.
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So in the beginning, we thought the best way to look at what was happening in our region was to actually track patient journeys. So we had one co-ordinator in the Barwon area, based at Geelong, and the other one in Warrnambool. We weren’t possibly trying to co-ordinate all of the patients that were diagnosed, but we wanted to map the complex journeys so we could gather the most rich data. So we worked with a data base creator and created an online data base that the nurses could access to enter their data, and it went on to we realised that the isolated position in Warrnambool was very stand alone and despite all out best efforts, not well supported. And so we employed some part time project officers to work with the co-ordinate down there.

So, that was the model we came up with in the beginning. Patients and families and carers in the middle, the systems and team that they interact with and the co-ordinators to collect the information. Now, some of the information that we collected, this shows you some information from 215 patients, and the reason for their referral to the co-ordinator, half of the patients were referred for emotional support, and then if you combine the service information and clinical information, the next highest referral was for information. And, then the patients were assessed by the co-ordinators and were able to talk to them about their needs, and again, emotional support was that they said they needed. And timely provision of reliable information was next highest. Now, it all sounds fine, but they were very challenging times. Having someone at a distant site was a big responsibility, employed by our team, and yet placed alone out there. We really wanted that position to be based in one of the local hospitals, but at the time, it just wasn’t possible. And it was at the time that we were doing it. There were cultural differences. There were pressures on the person locally, saying things like “You’re employed by Geelong, but you’re working out here. They don’t understand what we need out here”. So there was pressure to change the model and that was a bit tricky.

There was role clarity and role acceptance, when you’re doing something new as the team from Greater were saying, everyone is very suspicious. And, there were turf issues. "We already do that, thanks very much".

So, we went back to the drawing board and thought what is the best way to do this? We went back and spoke to the governance group, which consisted of the CEO’s of the health services, and then I went and spoke with the nursing leaders and we sat down and looked at it again. We looked at the data, and the biggest gap was access to specialist cancer nurses, and they wanted local nurses employed at their health service. So, we reviewed the whole thing, and the whole concept.

So, then we put in a pilot phase of the Cancer Link Nurse Model, and of course we wanted to enhance continuity, improve communications and increase availability of local cancer expert information. So, that is the model we have come up with now. Again, the patients, and the carers, and the families, in the centre, but the link nurses very much stepping in and stepping out. So, it is similar to some of the models that have been developed in Canada with inter link nurses in the community and with the navigators in the American programs, the navigators in the American programs are very differently set up. Some of them are not clinical as appointment makers, but this model looked at having that trusted, local, rural nurse as the key.

So, the model is that they are employed by their local health service, but supported by us. It is a supportive care model, it is not clinical, but it’s indirect clinical. So, the clinical knowledge needs to be there. There is dual reporting lines to their manager and to myself. They come to Geelong and spend two weeks working alongside the cancer service teams, and I would like to thank the staff at Andrew Love, who have been fantastic at putting time aside to create orientation and education around each of the departments, and they follow along as observers. But very much meet all those people, and when they go home, they have got someone to contact.

There is monthly reports of course, and we’re doing all of that. And, we sit down with the manager, and we look at what their education needs are of the Cancer Link nurse, because they are all a little bit different, depending on where they are in their career, and we develop an education plan and fund that. And, continuing to map the data on Canmap. The data collection was a little bit onerous. They were collecting a lot of data, which was fantastic in the beginning, but we have now streamlined that, and it is to a single data set that they all collect and enter on this one system, and project reports of course too, the governance group and the health services.

So, it is really important with the regional implementation of these roles to have good corporate governance, clinical placement agreements with all of the hospitals because of the fact that all the patients move between them. MOU’s, and really good, strong nursing leadership was very important to create a position description for the Cancer Link nurses. That was a generic one across the region, of course, at the hospital needs as well. And reporting lines needed to be clear. Referral criterion processes, we needed to look at how that worked in each hospital and regional brochure. Now, I don’t know if any of you have put through a brochure to go through a Publications Committee at the hospitals. Well, that takes a long time. So, getting something that each hospital agreed on, was a big – we just got to the final point, and two hospitals have just changed their logos. So, we’re changing again.

But this will be something that we will be able to promote beyond our region, and it is really important to have strong, constant communication and support with the nurses. I myself do. They give monthly reports to me, and to support them with education and professional development. Funding them to go to conferences, and asking for that activity report back, and for them to then pass on that knowledge to their local nursing teams.

So, we have embraced IT and telemedicine. We have a fantastic facility, two rooms at the Andrew Love Cancer Centre, which has the capacity for video conferencing across our region, on our regional health alliance. So, we have seven trimmer stream multi-disciplinary meetings and we can link clinicians into that meeting from the south west of the region, and we also have occasional linkages from our clinicians into metro, into say the gynaecological meeting at the Women’s. We have our radiation oncology team regularly linking into the multi tumour stream MDM that happens in Warrnambool, and that is at 6 o’clock in the evening, so that is a real commitment by our Radiation Oncology team to do a roster to link into that evening meeting. And we have education meetings once a month, and it is multi-disciplinary.

We do a survey once a year with the clinicians in our region, and we ask them what they want to hear about. We get guest speakers and our system allows for the multiple sites to all see the presentation at once, and then join the room for question time. The data base I was talking about called Canmap, the beauty about it is that it is online, is the nurses work part time and one nurse can do a search on a patient when they get a referral, so see if one of the link nurses has already connected with that patient, and what supportive care services have been put in place. And the multi-disciplinary team meeting, they are becoming part of that meeting. We did a lot of promotion within the teams, but actually having on the meeting screen that the patient is linked into the link nurse, or should be linked into the Cancer Link nurse, as part of that patient supportive care team, is really important and this particular recommendation is then sent to the digital medical record.

The other area that we have embraced technology, and we’re really excited about, and I know some of you in Radiation Oncology Departments around the nation have heard about this, but we piloted this program a couple of years ago, when it was recognised by a young family. The mother was having treatment at Geelong for quite some time, chemo radiation, and when she went home, she had a young toddler who was frightened by the way she looked. So, that is where the project started from, and we have lap top computers that are configured to talk to each other. The link nurses in the rural hospitals train the local family and do testing to see where the best reception is, and the team at the Andrew Love Centre work with the patient to make sure all is okay, and so when you’re staying in the accommodation units, they can link to their kids every night and say goodnight to them. And the reports from the families are saying that they didn’t know it was so important to have that visual contact.

Sometimes, one mum said she was ringing up and you think you can hear something in someone’s voice when you’re really anxious, but when you can see them face to face, you know they are okay. This project has now been funded by the Department of Health & Ageing for the supporting rural women with breast cancer area of funding, and it is being rolled out nationally.

So, the story so far, we have Cancer Link nurses in Colac, Warrnambool, Hamilton, Portland and in Geelong, just a couple of months ago the last one has just commenced her role. It is a new role, it is evolving. We are listening to the health services, we are listening to the local teams as we continue to develop them. So they are becoming one point of contact, which is so important for the families. They are providing education, they are also the providers of reliable cancer information. They are creating new referral pathways, managing local supportive care, and just doing – collecting information on supportive care that we didn’t know about, and that we can put back into our community directories and online directories so that the whole system keeps growing and changing.

So, has the patient journey changed, and what does it mean for cancer centres when Cancer Link nurses are involved? So, that is the patient’s home. They travel to Warrnambool, where they are diagnosed, and they meet up with a Cancer Link nurse who immediately puts in place a referral for transport and accommodation assistance, and does the training for the webcam communication. Have some surgery in Warrnambool, and the link nurse there has developed tumour stream supportive care information packs. Travel to Geelong, and has further surgery, then back home again. Then back for radiotherapy, and is referred to the Barwon Cancer Link nurse, who introduces the patient to the cancer patient information centre, which is a quiet space away from the treating area, and the patient is also able to link in with their family. Then the patient returns home and they are streamline discharged.

We have worked with the radiation oncology team and the discharge treatment letters, the nurses are now cc’d on those that go to the GP, so the local team knows what is happening. That has been really helpful. And the patient has surgical follow up, but also able to visit the information centre that has now been developed in Portland. So, this is how we are slowly growing, so they have got a local information and support team there.

But I think these quotes from the patients tell us what it means to them to have a link nurse. People like the Cancer Link nurse are vitally important, not just to cancer patients, but to the families, especially with being able to access information. "To be able to talk it through gave me direction, understanding, reassurance and comfort when I was very low". But what we all need is someone with plain speaking common sense, who we know to be a nurse, who we can call and who provides information, liaison, relief of tension and peace of mind that helps us eat and sleep. All of this is engendered in the Cancer Link nurse.

And I would like to just finish with this particular art work and the story behind it. We have included information on indigenous healing in our information centre in Geelong, and the artist, Norm Stanley, did this painting particularly for us, and he said it is called The Ceremony, and the white dots around the circles are a sign of purification and the people sitting around the circles are sharing their stories. And, he said sharing stories is really an important part of indigenous healing, before, during and after someone’s illness.

He also said that the footsteps going through the painting tell us that we all come from different directions and we all go in many – we all come from many different areas and go in many different directions. So I would like to thank you for letting me share my story with you around the radiation therapy water hole.

Thank you.

(applause)
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Norman Swan:

So, what proportion of the time of these Cancer Link nurses is spent meeting the information and emotional needs of people with cancer versus a more active co-ordination of care through the transitions in their journey, making sure that nothing is missed, diagnostics, treatment, transport, that sort of stuff that really counts?

Ms Maggie Stowers:

That’s a very good question. We are just entering into an evaluation frame work build, but it is not so much a case management. So, they’re not in charge of all of that, they step in when the patient is first diagnosed, assess the patient’s needs and then refer on.

Norman Swan:

So, is there anyone case managing in Barwon?

Ms Maggie Stowers:

In cancer coordi-..? The breast care nurses do, a bit more of the case management model. But this is a supportive care, stepping in and stepping out.

Norman Swan:

So, how did you – I hate to be always the one, when there is a warm glow in the room, to sort of prick it.

Ms Maggie Stowers:

That’s all right.

Norman Swan:

But, it is important that people get support, they need it. It has been said time and time again, absolutely critical and it has all sorts of flow on effects. But if you are disconnecting that from case co-ordination, people could still be dying unnecessarily because they’re actually not get the care they deserve and merit, because you’re spending resources on this, rather than active case co-ordination, particularly in an interesting area such as Barwon, where you are actually a bit like Queensland in Barwon, because you’ve got almost a metropolitan centre in Geelong, plus satellite centres doing sophisticated stuff, and fragmentation is quite easy to occur. What is your perspective on those set of priorities?

Ms Maggie Stowers:

I suppose we set up the model particularly in response to the patient’s needs. And the needs of the – what our region was telling us. So, the patients, if they get information as close to diagnosis as possible, it reduces their anxiety, and then a plan for how they are supported along the way is set up, and it’s pretty much an information provision. So the patient would be diagnosed and goes to the Cancer Link nurse, say in Portland, and that nurse would say “Right, this is where you’ll be going, this is who you will be seeing, and I’m here if you need me”, and steps back. But also makes follow up phone calls to make sure those connections happen. So, it’s not a clinical responsibility, but an information provision and support.

Norman Swan:

Do you find a nurse not an expensive way? What about a properly trained volunteer to do this?
The nurse in Portland is working with volunteers in the information centre actually. But I think it needs the clinical knowledge to be able to anticipate the journey, the possible side effects and all of the supportive care and allied health that may be involved.

Norman Swan:

What risks do you think there are in this, if any? I mean, it’s a low risk activity, activity, but I mean do you think there are any risks?

Ms Maggie Stowers:

Yes, the risks are sustainability. It is a model, it’s a project, but the communities are really getting behind these positions and in Portland they have done a local fundraising and they have funded the nurse an extra day a fortnight for the next 12 months.

Question (Mike Poulsen):

I am Mike Poulson, Queensland. One of the other problems we have found in regional centres where patients come for radiation or chemotherapy in the big centre, is after the treatments happen, they are as keen as mustard to get home. They go home, and then they all fall in a hole with delayed toxicity. Have you used your Cancer Link Nurse Project to assist in supporting the patient in that post treatment phase, either with just direct care or teleconferencing back to the main hub? Because I see that as another really important role?

Ms Maggie Stowers:

Not yet we haven’t, no. Not all the roles are full time, some of them are only two days a week. But, what the nurses are alerted to is, in that discharge planning letter, they will know what treatment the patient has had, they will make contact. But very much working with the GP. The GP’s are really quite vital members of this whole thing and in the smaller hospitals, they have admitting rights, they are, I suppose, a more stronger voice than they are in the metropolitan team. So they work closely, but it really is just keeping an eye on people. We haven’t really done – it’s new, and the nurse in Geelong, the position there, was requested by the other rural link nurses, we need someone to go back to. If they actually identify, say for instance, some of the district nurses might come to them and say we’ve got a skin reaction we haven’t seen before post radiation therapy, so the link nurse will take that information back to the Geelong centre and say “What can we do about this?” and acts as that sort of liaison between the teams.

Question: (unidentified male)

I think it's perfect (inaudible) even if they're two days a week. You know, you've got this close link and you say, well hook up with the local nurse, Tuesday nine o'clock and look at the skin reaction on the teleconference and ...

Ms Maggie Stowers:

Yeah. They do that with the wound – there is a wound clinic and a wound – I forget what they are called now, special interest group, within the district nurses within the region, and they already do that, yes. So, it is a good thing that we should expand on.

Norman Swan:

Maggie, thank you very much, fascinating.

(applause)

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