There were 32 unique patients admitted to Benalla Health in the financial year 2018–2019 with a primary diagnosis of COPD, 35 with congestive cardiac failure and 13 with diabetes, as summarised in Table 1. Approximately half of the admissions for these conditions were repeat admissions during the 12 month period (51 of 109 admissions). After exclusion of patients who had since passed away, 69 were eligible to participate. Nine patients consented to participate (13% response rate), along with 16 health professionals, as summarised in Tables 2 and 3. No participants dropped out of the study. Interviews were undertaken between September and October 2019, with a duration of 13 to 33 minutes for health professional interviews and 8–48 minutes for patient interviews.
Involvement of the General Practitioner:
Organisation of care:
Organisation of care was a key factor associated with patients being able to manage their disease and ultimately the risk of potentially avoidable hospitalisation. Participants spoke of action plans and GP management plans that could either be beneficial or of little value. Beneficial management plans were individualised, disease specific, meaningful and patient centred.
I was in and out of that Emergency place a fair bit, early on. (Now) less frequent, because I’ve got everything under control, and I’ve got that action plan. (P2). “Yeah, the knowledge, the three steps, the action plan which they give you, which I’ve got up on the fridge and what to look for and everything like that. If you get to number three, perhaps you should ring the ambulance or something” (P2)
Because it’s not really that hard to really- to follow that care plan that they’ve given me, It’s not very complicated at all. After this period of time, having pneumonia and having chest infections, I sort of- I’m a bit more onto it now. (P3).
The basic stuff, which is people having plans; (for) managed exacerbations and complications. There’s been a big push for that for asthma and COPD…It’s pushing that side of things but having similar things for heart failure and diabetes management. I suppose diabetes management, there’s often- there isn’t a developed plan for how you would managed that. (HP13)
Conversely, management plans that were perceived to be of little value in supporting patients’ self-management when they were not tailored to the individual patient needs or their health conditions.
Clients have no idea where their plan is, so it’s somewhere in the cupboard and when you see it, it’s a generic template that’s basically had the client’s name put on it and it’s meaningless to them, not helping them manage their chronic disease at all because it’s not been personalised. It’s basically, ‘oh the podiatrist said I can get five free visits in the year, doc, can you do that paperwork?’ (HP3).
Continuity:
Participants often spoke of GPs who had worked in the region for many years. They also spoke of the value in GPs working in both the community and the hospital. GPs often had long term relationships with patients and other local health professionals and this was associated with high levels of trust, respect and deep understanding. When GPs retired this was keenly felt by patients.
I think the fact that patients are seen by their GPs out in the community and then if they do have a crisis with whatever their- an exacerbation of whatever illnesses, when they come to hospital they’re still looked after by their GP. So, I think there’s that real continuum of care; the GPs know their patients so well. (HP8).
I usually get continuity no end. I get to see the same one (GP), same time, same bat channel, same. If I can’t, and somebody else does, by gee it’s in consultation with him (my GP). (P9).
Individual GP traits:
Personal traits of individual GPs were also discussed. Patients and other health professionals recognised when GPs prioritised explanation of diagnoses, signs, symptoms, the reasons for tests and medications to their patients. Patients spoke of the value of being listened to and believed by their usual, trusted GP and the consequences when these things did not occur, including hospitalisation.
I rang my doctor because I thought, I’ve got this chest infection and my doctor was unavailable. I’ve got this other doctor and he just, I said ‘mate, look, this is one thing, this COPD, it’s really made me learn about my body. I know when things aren’t right’. I went and saw this other doctor. He said ‘oh look, you’re all right’. I said ‘’ no, I’m not all right, I don’t feel well’. The he just gives me one of those things for a bowel cancer test. I said ‘no I’m not here for that, mate’. Two days later I was in an ambulance and they were resus-ing me. (P2).
Now, I have a pretty serious lung problem and it’s taken years of saying to doctors, ordinary GPs, there’s something wrong but I can’t work what it is and not being believed. Then all of a sudden, total crisis. Everything stops working and you’re rushed to intensive care and you’re rushed here and ambulances are called. (P5).
The diabetes educator at (x) clinic, she’s bloody, she’s worth her weight in gold. (She) just gives me an understanding of where my levels are at, whether I need to up it a bit or knock it off a bit, or what I’m struggling with. It keeps-especially in this last 12 months, keeps a check on my weight and how- the benefits that she sees of me taking quite a bit more responsibility and acknowledgement about that (P9).
The younger ones (GPs) are very more in tune with the new ways of doing processes. It’s- if you’ve got to follow a certain process with the hospital system they’re happy to go along with that. Some of the more experienced (GPs) with their set ways, it’s a lot more of a challenge to get them to follow what we need them to do (HP10).
Individual Patient factors:
Support:
Health professionals and patients alike spoke of the critical importance of support, whether it came from a patient’s spouse, other family, friends or community members. Support people enabled independence, reassurance, safety, transport to appointments, care when the patient was unwell and feelings of connectedness. On occasion, individuals without support were mentioned and the detrimental impact on their health was well recognised. On other occasions it was recognised that carers may be unwell themselves or become fatigued after caring for a loved one for many years.
There’s so much (support) available that it’s- it’s like a minefield really, isn’t it? I don’t think we could ask for support when it’s more deserving for other people I would think. No, we get by very well. (P4).
“We have a very high incidence of people living alone in Benalla, and I think that contributes to just not being confident in managing your chronic illness… and when you start to go down, there is no one there to tell you to go to the doctor or whatever, and so maybe you missed that opportunity where it can be fixed quickly or then, it’s panic stations and I have to go to the hospital because there’s no one around to certainly look after me” (HP 5).
“..living alone, I find it frightening” (P 5).
I would have like people to follow up (after a hospital admission). You know, are you okay? A phone call. Do you need a hand? I wasn’t even given an appointment. I went home to a freezing home and no food. No money. Couldn’t walk. Couldn’t get anywhere and no friends. No next of kin here and no friends to ask for help. (P5).
Would you believe the first time we went down (to Melbourne for a medical appointment in the Council Community car) with (John) he pulled up in the car park and that was- the doorway was straight there next to it and that was a disabled carpark so we have our disabled sticker and there was no worries. The same last time we went. I thought that’s terrific because you just walk in, get in the lift, and go upstairs. So that’s goods. (P6).
Psychological factors:
A patient’s mental health was discussed by many participants. Participants spoke of the value of a positive outlook and being assertive in managing a chronic health condition but also spoke of loneliness and isolation. The long-term impacts of trauma and homelessness on health and access to health care were discussed. When mental health care was needed, barriers to access were discussed, including long wait times, inadequate numbers of beds and difficulty accessing services prior to a crisis or suicide attempt.
Nothing really prevents me (from self-managing COPD), as long as I make my appointments when I know I need to. Stand up for myself, to make sure that I get in to see somebody, and, if I feel that I’ve got an infection, then I have to make them believe me, that I have. Because they can listen to my chest, and they go: ‘oh, no, it’s not that bad’. Then I’ll go home and be coughing all night. (P3).
“If they’ve got poor mental health they’re not going to go for a walk. They’re not going to take their medications. They cannot afford it because they don’t actually work… so mental health would be a huge thing. If we could get more help with their mental health…” (HP 14)
I should have pushed it (seeking care for an exacerbation) more, pushed it more and pushed it more. But I didn’t and the next thing I’m at Benalla hospital for five or six days with this, and pneumonia, and I was pretty bloody sick, I’m a bit angry about that. I told my doctor, my normal doctor, about what happened (P2).
Disadvantage:
The socio-economic disadvantage of the town was recognised, as were the barriers to healthcare when a person was living with low income, or indeed in poverty. People spoke of the costs of attending appointments, GP services, medication, transport, attending the Urgent Care Centre, ambulance support and home modifications. Patients spoke of having to choose between medicine and food. Some patients were unable to access a GP, or a regular GP. GP clinics that were ‘closed’’ to new patients were mentioned. Patients with low income who didn’t drive spoke of the compounding issues of needing to travel out of Benalla to access free Emergency department treatment and being acutely unwell but unable to afford ambulance services, and then not being able to return home when they were discharged from hospital, at times an hour or more away with no public transport, often at night. These issues were acutely felt by local health professionals who were doing their best to alleviate these impacts on people.
I couldn’t believe my own doctor who has known me for 30 years or something could say I could just go home, I have been saying to him for 10 years, I’m broke. I can’t get a job, I’m living off New Start (unemployment benefits). It’s not enough. I have not enough food, I’m getting food vouchers to survive. I have to count potatoes. They don’t get it. They don’t get it. They don’t live like that. They don’t see it. They have no f**ing idea that it’s real and I’m not the only one. Right? (P5).
“… I was just sent home with no support. No food. No money. No one asked if there was anyone at home. Nobody cared… Nobody rang me up…” (P 5)
You know if you’ve got a 90 year old gentleman who lives at home on his own, who comes into ED when it’s still daylight at five o’clock in the evening, he then has all of his investigations, and then at nine o’clock at night you tell him he can go home when it’s dark, and it’s such a risk and I feel like it’s not a good service and it’s dangerous. Because he could trip going up the garden path getting back into house, (HP8).
I think a town like Benalla that’s got so many struggling people, like there’s a large amount of low socioeconomic status people in Benalla, it’s a shame that we can’t provide a decent free healthcare service. Like if they were living in the city, there’d be bulk-billing clinics everywhere. (HP8).
Complexity of health:
It was well recognised that patients were often living with multiple chronic health conditions and psycho-social challenges. The complexity of these challenges influenced capacity for self-management and development of coping strategies.
I had this guy who did have diabetes, he was homeless, he had diabetes, osteomyelitis, probable intellectual disability and chronic mental health problems. He came to hospital with a sore toe which he said had occurred a week earlier, in fact he had chronic osteomyelitis. So, he got admitted to hospital, started on all this medication, seen by the physician and promised to attend follow-up and stuff like that and didn’t. He just got discharged and was never seen again. I asked Mental Health services to see him and they did a telephone consult from Wang (Wangaratta) and said ‘he’s not suicidal, we don’t need to see him, and that was it. (HP13).
I’m getting food vouchers to survive… (P 5).
If they can’t stay physically active with their PTSD (post-traumatic stress disorder) then their actual diabetes increases. Their everything goes haywire (HP14)
“I was 13 pounds born to woman with gestational diabetes… and my dad developed type II diabetes, so I was doomed from the word go. I’ve battled type II diabetes for probably some 35 years now and of course with poor control, infection got into the bone in my foot and I had a standard 250 (millimetre) left leg amputation” (P 9).
Health Service Access:
Accessibility was a barrier to specialists and Emergency department care. This issue was further compounded by a lack of public transport and if patients could not drive, could not afford ambulance cover or lived alone. There were examples of telehealth services or other specialised support provided by metropolitan health services.
They (staff in Benalla pharmacy) got an ambulance and suddenly I was surrounded by these people trying to ask me what year it was and I had no idea about anything. I ended up in Wangaratta Hospital Emergency…I improved by the hour with food and being looked after by one nurse. They said, we need- this woman came rushing in. I never knew who she was. ‘We need the bed, you can go home. We have to have the bed. You’re stable now, you can go home’. Oh great. So I took all these tubes off and went outside but I was in Wangaratta with no friends, no money, none of my possessions. My car was stuck outside the chemist’s. I was told to go to the waiting room and it was 10 o’clock at night… I had to ring my daughter in (town b, over two hours away). No food, Nothing. No hot drinks. Shivering outside, trying to stay away from those sick people… It happened to me in Albury too. Told to leave, there’s no bed for you. It was only for the grace of God of a taxi driver that had sympathy for me that charged me no money and drove me all around Albury, finding me a room that I could afford that was only $30 a night…but the next morning I had to ring people in Benalla to come all the way up (over 75 minutes away) to collect me because there was no train. This isn’t medicine (P5).
It’s the tyranny of distance. Often, as I say, the people that really need it can’t afford to travel. So then…Yeah I mean there is a train (to Wangaratta) but the appointments, and then the doctor is running late and they miss the train to come home, what do they do? Pay $80 for a taxi to get home, and that has happened. (HP3).
Availability was raised in relation to health workforce issues that had persisted for many years, impacting pharmacy, discharge planning, nursing and allied health. For example, insufficient numbers of physiotherapists in the hospital may have contributed to a perception that care was being prioritised to getting patients with respiratory conditions up and walking rather than providing chest physiotherapy. In addition, it was recognised that small, rural hospital could not provide highly specialised services. There were comments related to a low threshold for admission, particularly when GPs knew patients with complex, chronic conditions very well.
There’s not that push to get out (discharge patients) like I’ve been used to in Wangaratta. There’s not that bed urgency that we used to have. (HP6).
The hospital admissions are obviously GP driven as well because they have to admit them (GPs are the admitting doctors) (HP11).
I don't go to the doctors unless I need to, and he (GP) know that. If I go to him about something, he thinks I need to go to hospital, he puts me in. (P8).
“You can only do what you’ve got with the resources that you have. So when they are in hospital they are usually seen by a physio but they’re not always given exercises or advice on discharge” (HP 3).
They (local GPs) see it (Benalla hospital) just being as a nursing home pretty soon. Benalla hospital has shrunk. So instead of having two wards it’s now really one ward. The capacity has shrunk so no doubt the resources will have shrunk too (HP3).
I’ll see a COPD diagnosis and there’s no referral to a physio and I go so ‘could they do with physio, bit of chest exercises or something?’ Ooh, they can- the response from the nurses, ‘but can they walk, they’re okay’. The priority from allied health is to get people up and moving and that’s more their focus than chest. There’s a reduction in physio services at the moment, so they’re prioritising. (HP6).
Acceptability. Participants mentioned the need for disease specific rehabilitation programmes and for extended rehabilitation or exercise programmes to support patients longer term. Participants also spoke of inflexible programmes or inflexible eligibility that meant that patients may not have been able to access individualised, patient centred care. Some GP clinics were providing alternate models of care (walk-in clinics with triage, after hours service) to overcome waiting times and to ensure the patients with greatest acute needs were seen.
(a patient with chronic, complex physical, mental health and social concerns) is repeatedly admitted to hospital with (a chronic health condition), and then when she’s discharged, she doesn’t attend any follow-up. I tried to, and then I thought a bit more broadly about that, and she’s got a chronic mental health issue as well, and she may also have, as many of these people, an underlying development issue. It clearly doesn’t work to send her home with an appointment to see the drug and alcohol worker the next week. Can we arrange someone to go to her home and check that she’s going okay and that sort of thing, and then the alcohol and drug worker to go home? No, that couldn’t be done because nobody provides that service. So, if the district nurses go to her home and check that she’s working okay? No, we can go and do her dressing; we don’t do welfare checks. Can MIND (Community mental health service) be involved? No, MIND can’t, because she hasn’t got an NDIS (National Disability Insurance Scheme). A total lack of flexibility. (HP13).
Everyone’s an individual with individual needs (HP10). Well, everyone learns differently, regardless of their age (HP11). That’s what care is about, it’s called person centred care (HP12).
...when I lost my leg. To go home I needed a wheelchair. If I applied for a rebate through the scheme, they would give me $1000 but because I needed a wheelchair before I could be released from hospital, I’d have to hire it. The application may take up to 12 months. Now, at $25 a week for that wheelchair, I’d blow my bloody $1000 on chair hire. So, I might as well have bought the thing myself. (P9).
Affordability. Costs were a barrier mentioned in relation to Urgent Care, ambulance, specialist appointments, transport and GP services. These costs were compounded for patients with low income (at times because their health meant that they could no longer work) and particularly for patients living in poverty (at times linked to trauma, poor mental health, abuse or homelessness).
So our main three GP clinics in town, they’re not bulk billing. So I think maybe dealing with chronic illnesses, there’d certainly be a cost involved with that especially for a lot of older people that need regular appointments as well. The other GPs can bulk bill at their own discretion. But otherwise they might be looking at $80 for a 15 minutes appointment and they only get 35 of it back. So if you’re expected to go and see that GP every week or every fortnight, well you can see how people slip through the cracks that way. (HP8).
We can’t even give patients a ball-park figure on the (out of pocket) costs associated (with Urgent Care). (HP8).
So, considering we have quite a, we do have a very high low socioeconomic group in Benalla. Financially to pay for GP services I’d be concerned that they would be limiting their access to medical care. Also having paid Urgent Care (Centre) here as well (HP16).
Adequacy. Discharge planning and referrals were key issues raised by health professionals. There were many examples of initiatives to improve organisation of care, communication and sharing of information including shared care folders and multi-disciplinary ‘scrums’, but these were not systematically applied. Other solutions including consistent guidelines for chronic disease management and clinical pathways were suggested by health professionals.
But the theme, sadly, probably for the last six to twelve months for us in community (Community Health services), and I have had to follow up with patients in the clinic (GP clinic), is poor discharge planning, or no discharge planning from hospital. That impacts on client outcomes when they get home. It can be anything from not understanding what their medications are for, or just not taking them because they don’t know. Or they don’t know how important they are. Certainly with the respiratory conditions with all the new inhalers and things that they are about; they’re (patients) quite confused about what they should be taking and should they stop this one and start that one. (HP3).
We do have daily meetings on the ward with the different disciplines, that’s including acute staff as well as the supportive services like allied health, physios, OTs (Occupational Therapists). We do have the dieticians, diabetic educators, district nursing, post-acute care services. Sometimes the people from the shire come up and we discuss the patient’s discharge needs (HP7).
The model’s there (Key Worker model in which a nurse or allied health professional acts as the contact to the health service and sets goal with the patient). The model’s there, but it’s not staffed, so it’s broken, I suppose, because of that, so we’ve lost leadership within that team. We’ve lost skills within that team. We’ve lost a lot of expertise within that team. (HP5).
Some people aren’t referred onto Pulmonary Rehab that I think should be. For instance, if people present to Urgent Care- we don’t get any referrals from them so, if a person comes in with a- you know, a respiratory problem and they get discharged back home again through, we don’t get a referral, and I think that would help. (HP4).
We didn’t even have the forms in Urgent Care Centre on how to refer people onto any allied health services, so we had no idea of what the process was, so I actually found the forms and we’ve got them now in urgent care so staff know how to make that referral (HP8).
“it’s not uncommon to have patients lob up to be seen by us having been in Northeast Health as an inpatient or in emergency, with no information… We don’t know what they’re here for. We don’t know what they’ve had done. We don’t know what the expectations of what they want done. We’re relying on the patients to tell us” (HP13).
…it does happen that we do have people admitted for discharge planning (HP9).
Awareness. There was widespread recognition of the benefit of cardiac and pulmonary rehabilitation, HIP, HARP and support services at home or in the community, but there was lack of awareness of whether these programmes were available locally, how to refer to them and eligibility criteria. Patient awareness was dependent on patients being ready and able to understand their condition, how to manage their health, ability to ask questions and seek information. There were examples of mis-conceptions regarding access to GP services, for example if patients rang early in the morning or explained that they had been discharged from hospital, appointments would be made available to them. Similarly, bulk-billed GP services would be provided for eligible patients with complex, chronic conditions if they had GP management plans in place.
With nursing staff in the hospitals or the acute settings, I don’t think they understand what services are around the whole area and I think it’s a really important part of being in a small community where we can send, where we can suggest to educate and encourage patients to participate. (HP14).
A lot of clients will- say for example, with heart failure, which is, they don’t even know they’ve got heart failure. They’ve been in hospital, they’ve been managed on fluid restriction and may not necessarily know that they’re supposed to be on it when they get home and what it’s for. (HP16).
Well, this is what annoys me, for the last 10 years I’ve been borderline (diabetes) and have I got it or haven’t I? Or you’re on the edge, and do I try to cut down (on food that may increase risk of diabetes). But I try to watch my diet. (P1).
We used to have a really good relationship with the Community Health, and we had someone from their chronic disease program come in here (GP clinic) and we’d have case conferences regularly, once a month… What worked well was the integration of information. There were complex patients that we shared, so it was about talking about the issues were and how we could manage them in an integrated fashion. What services they require and the urgency of that, and that sort of thing. Yeah. (HP13).
I think it’s just frustration for me wishing they (patients) bloody understood (their condition) so they didn’t end up in these predicaments (HP15).
Being inside the hospital is a bit tricky to figure out what would be the needs (of the patient) on the outside (HP9).
Timeliness
Participants noted that at times extended waiting times were experienced for a range of services, often due to insufficient workforce. At times these delays resulted in patients becoming more unwell before they could access health services or beneficial programmes.
Overall, the wait times for some allied health and other services are quite long, so particularly dieticians and dietetics. Access to pulmonary rehab and cardiac rehab can take a long time, so not uncommonly by the time people get into those programs it’s a month/couple of months down the track from when they’ve, whatever their key episode was. So, they’re either better or they’re not going to get any better at that point. (HP13).
Well, one of the issues at the moment is, is probably, for our patients, is access to medical care. We’re relatively short of practitioners, GP’s, even though we’re better off than many other rural and regional places, it’s still quite hard to get a routine appointment. So, a routine appointment to see me at the moment is January sometime (interview conducted in October) (HP13).
We’ve started to use Royal Flying Doctors Telehealth to try and get people in because of the six months waiting lists (for mental health services). What’s the point of seeing someone six months after they’ve tried to commit suicide? We often send people to (in patient mental health service in another town), they’re back the next day. We send them back to (service) or to the triage, to be triaged and they’re back and it’s just this ping-pong. (HP14).