Table 2 Themes and subthemes for theme 2 right care, right time
Sub-theme | Illustrative quote | |
|---|---|---|
B1 Rheumatology specialist care | ||
B1.1 | Sufficient rheumatologists | If you see a rheumatologist it’s like gold… It’s very difficult to see a rheumatologist |
B1.2 | Timeliness | |
B1.2a | Of diagnosis | I’m very grateful for his diagnosis on the day. So very different from nowadays where you can be diagnosed with methotrexate on day one |
B1.2b | Appointments (including appointment certainty) | I see a really stretched health system with really stretched Allied Health, long wait lists, and services that are difficult to access |
B1.3 | Appropriately responsive care access mechanisms | If you’re complex and you need it, then you can get that care that you need |
B1.4 | Patient-factors related to access | |
B1.4a | Telehealth | There’s no, there’s no travel involved. And, and for a lot of us who have chronic fatigue and have pain, that that travel comes at a human cost and if you’re on a benefit that comes at a financial cost, which sometimes is onerous if you’ve got you know, a run of them |
B1.4b | Funding | Getting the physiotherapy or occupational therapy has been non-existent effectively, I’ve had to do all that myself at my own expense |
B1.4c | Mobility pass | – |
B2: Access to rheumatology nurses is highly important | ||
B2.1 | Between appointments | The nurse, who works in conjunction with [the rheumatologist] is [who] we can contact if we need assistance appointments |
B2.2 | Nurse phone line | Having the access to the rheumatology nurses as often, you know, once a week or anything, I always felt I could ring and that was lovely |
B3: Co-ordinated care and other aspects of care | ||
B3.1 | Coordinated care | |
B3.1a | Between specialists | Communication between orthopaedics and rheumatology is just brilliant |
B3.1b | Between DHBs | I’m looking forward to the day when all DHB records are interchangeable and easily accessed because they’ve created hiccups in my care |
B3.1c | Across disciplines (non-specialist) | When your disease is compromising your whole system, then you end up having to cross lots of different specialties, but also lots of different services |
B3.2 | Allied health | |
B3.2a | Physiotherapy | The other really good thing that I value about rheumatology is the rheumatology service works really close with physios in the hydrotherapy pool. So there’s a wider range of treatment services that could be available to you and they support your rehab and things like that |
B3.2b | Occupational therapy | I tried really hard to get access to occupational health therapy and couldn’t |
B3.2c | Personal Trainer | Cos a big thing I’ve found with exercise is I have to have someone else there to motivate me to go along, which is why I was seeing a personal trainer |
B3.2d | Carer | Just recently I had a full time carer look after me for the last 7 months, but was told two Fridays ago that she wasn’t available |
B3.2e | Orthotics/podiatrist | Just, really there’s been no hesitation from [the rheumatologist] I saw in October I’ve seen the ortho pro guy, lovely |
B3.2f | Pharmacy | You’ll be contacted by a rheumatologist nurse, you’ll be able to pick up a script, just give us time to get it all printed, sent directly to the chemist. That would be very helpful |
B3.2 g | Oral hygienist | To see a hygienist every 4 months because of my hands |
B3.3 | Access to specialist multidisciplinary care when relevant | |
B3.3a | Pain | Chronic health occupational therapist was her title, and she had worked in the pain management clinic in Wellington. And what she did was run sort of, pain management clinic for people with chronic health conditions … Able to bring in, you know, like a physio and the rheumatology nurse and you know, and get a whole group of people, different sorts of providers together to be able to workshop for the patient |
B3.4 | System navigation | It would be quite helpful to know what the actual process is. If I was a new person diagnosed with arthritis. How often, how long would you normally have to wait to see a rheumatologist and what support you are given after you’ve been diagnosed? |
B3.4a | Support groups | If people who are newly diagnosed were given the contact details of… of these various support agencies that would support them. there’s a huge amont of support groups in all areas of New Zealand, both online and face to face and I think those… those groups, enable people to learn how to live with the condition and… and nor… and help normalize it especially when you’re newly diagnosed |
B3.4b | Other services | – |
B3.5 | Access to personal health information | Learning the importance of things like manage my health and knowing to ask for copies of letters going to and fro, and keeping those and knowing your test results and what those tests result mean for your particular condition. Being able to trot off what meds you’re on and why, and you know what milligrams they are and all of that stuff |