| Physiotherapy: 3 : private when needed |
|---|
| Occupational therapy: 1 |
| Podiatry: 7: private, every 2-3 months , hospital 4 monthly, private every 6 months |
| Dietician: 2 |
| Hand therapist: 1 |
| No access: |
Podiatry appears to be of considerable importance to people with systemic sclerosis, but not usually accessible through funded channels. It is interesting that it is funded for diabetics when needed, and where a responded indicated their need for this funded service, it was made available. While many of the above services are needed by the general population as they age, and this also includes those with this disease, these services are not seen as necessary and have to be funded by the patient themselves. The comments that follow cover a wide range of needs.
- My rheumatologist refused to refer me for hand therapy – said to go home and do chores – that would be enough
- Were good at the start now have none – “dried up”
- Apart from short course with physiotherapist for a stiff painful neck, had not been referred to any of the above
- Podiatry at hospital every 4 months. Normally would be for diabetic patients but I complained and said unable to look after my feet
- Nope, it is up to me to do my own exercises
- Osteopath – especially with reflux and bowel problem and lungs for breathing as well
- Go to private podiatrist every 2-3 months. Go to private physio when needed (rare)
- Very good access to all three services
- I have had help from the following health professionals, hand-therapist, physiotherapist, occupational therapist and a dietician. I have had to pay privately for services such as podiatry and hydrotherapy which I find very beneficial, but can be costly. Hydrotherapy therapy I do through NZ Arthritis group weekly and it is helpful in keeping me flexible and mobile and is the only form of exercise I can do without being in pain the next day. Hydrotherapy also helps reduce my muscle weakness. I go to podiatry once every two months to remove grown corns under my feet which is painful and limits my walking, but I find this costly as she charges $85 each session
- Physio to learn breathing exercises, occupational therapy early on for aids etc and podiatry every eight weeks at my home
- As required when I have requested for OT
- None. Have not been told about the benefit of these services
| # Respondents: 22 | Yes: 18 | No: 4 |
The system for referral of test results to specialists appears to be working reasonably well with only two respondents recording any difficulty. The first comment concerns continuing access to specialist services and is perhaps best seen as demonstrating a lack of knowledge of the specialist concerned about this disease and its progression, rather than a reflection on the accessibility of the test results.
- I have no regular specialist care for scleroderma. Saw rheumatologist once at Middlemore Hospital.
- Repeatedly, my tests are not available
- Diagnosis was confirmed and I was discharged until I deteriorated to such a point I required a referral back to his department
- The blood test results are always there – I have them done a day or two ahead of the appointment and they are always sent through to my doctor as well as the specialist
- Not always through in time
| # Respondents: 22 | Yes: 14 | Sometimes: 5 | No: 3 |
- They never tell me the results so now I pick them up from the laboratory myself
- Have to ring at times
- I don’t have regular blood tests related to scleroderma, however GP will always follow up on any tests done.
- Sometimes I have to chase them on it but I guess they will tell me if it is super bad
- I often ring to see if all OK
- I ask if not told outright
- I ask for copies to be sent or emailed to me
- If there is a problem I am informed. I am very comfortable with this.
- Yes, usually. Occasionally – no.
There appears to be an acceptance of the test results as being information designed for the medical profession to peruse rather than being of interest to the patient. As patients become more familiar with the implications of various test results, patients could require more informed access to their results and what these indicate in plain language.
| # Respondents: 20 | Yes: 8 | Sometimes: 4 | No: 8 |
- Only if I ask for them from my GP
- Yes, when I request them
- Not unless I ask
- They say I will get copies but this never happens
Again, this appears to indicate that test results are not currently of critical interest to most patients even though they have rights to have them provided either on request or automatically
| # Respondents: 20 | Yes : 12 | Sometimes: 4 | No: 4 |
- General tests are always followed up
- My GP emails me or vice versa of results
- Usually – there was one glitch early on over initial X-rays but when I paid for a CT scan privately – all hell broke loose and things happened. No problems since
- Anything important has been followed up
- It bothers me that I will get lost in the system so I always double check results, tests have come through etc. Don’t feel confident
- No, never
A general acceptance of results, subsequent action and information provided but there is the potential for the system not to deliver at times.