| # Respondents: 16 | Range:1-10 | Average: 7.9 |
Again a very mixed response to this question. As patients are taking more responsibility for their own education and attending seminars as well as making use of the internet, the doctors and other medical personnel they see are needing to increase their own familiarity with this condition. Some doctors find this challenging while others welcome the opportunity to work with the patient to achieve the best informed outcome.
- He is excellent and sees the results of stress on my body and is willing to work from a prevention level
- Nothing is too much trouble
- Doesn’t mind discussing it if brought up.
- Just became interested because told him of the support group and seminar in Hamilton
- Only sympathy no real attempt to help – preferred to refer to others
- I tend to tell him what is happening then he refers to computer notes from past appointments.
- They don’t really understand. Quite hopeless. I stick with the rheumatologist but wish there was more advice on nutritional supplements, nutrition, exercise and support
| Visits to GP | # Respondents |
|---|---|
| Regularly | 7 |
| Only when I have a flare | 6 |
| 3 monthly | 2 |
| GP not involved - straight to rheumatology | 2 |
| Seen by nurse | 2 |
| Other | 3 |
Not all respondents to the survey had regular appointments with their GP. Sometimes the GP appears to be only a channel to access medication with all other care left to the specialist. For others, their GP is a key player in their continuing care and education
- I see my rheumatologist or specialist nurse if I have any problems regarding scleroderma, not my GP although she is aware I have the disease
- I am on Care Plus so have regular visits – 4 annually. Need to go at other times for unrelated stuff but SSc needs are always checked out as well
- He prescribes my medication etc
- Just go to her for referrals or rx repeats
- Virtually never. Straight to the rheumatologist
- Just see my GP every three months for prescription only, flu injection, blood pressure
- Only when I make an appointment – I don’t know how well he is informed about my condition
- Regular monthly blood tests too
| Service | Nos respondents accessing | Service | Nos respondents accessing |
|---|---|---|---|
| Care Plus | 4 | Lung function tests | 16 |
| CT scan | 12 | MRI | 2 |
| X-rays | 13 | Bone density | 1 |
| Blood tests | 18 | Gastroscope test | 1 |
| Blood pressure | 15 | MRI | 3 |
| Echocardiogram | 16 | Bone density | 2 |
All but one respondent had accessed at least one of the listed services but usually respondents had accessed many of the services. Some of the comments were:
- I have bronchiectasis, and have been under respiratory physician care for some time, well before diagnosis of scleroderma
- Will be having a CT scan in about 6 months
- Very satisfied with the regular and as required visits
- I don’t know what Care Plus is
- Was given CT scan, X-rays, echocardiogram, lung function tests for two years but rheumatologist now says not enough money in the budget to continue yearly tests like USA and we don’t follow that model.
Throughout the survey respondents have been informed by the health professionals that money is not available for regular testing as happens overseas. It appears that often it is only in reaction to emergency situations that some tests are done rather than on a regular basis. In one instance not even blood pressure is taken during visits to the GP even when requested.
| Frequency | mthly | 3 mthly | 6 mthly | annually | As required | Comment |
|---|---|---|---|---|---|---|
| 1. Care Plus | 3 | 1 |
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| 2. CT scan | 2 | 5 |
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| 3. X-rays | 1 | 2 | 5 |
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| 4.Blood tests | 6 | 4 | 2 | 5 |
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| 5. Blood pressure | 3 | 4 | 1 | 1 | 2 |
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| 6. Echocardiogram | 7 | 3 |
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| 7. Lung function tests | 2 | 7 | 4 |
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| 8.Other (please specify |
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Some respondents have access to regular medical tests and procedures both by their GP and through hospital and private specialists but many others have not undergone regular testing at all. What is not clear is whether this is because of personal preference by either the medical professional, or the patient, whether the cost to the health system is a driving factor, or whether the information provided by the test results is seen as useful in management of the disease, given the often long periods of relative stability before any medical crisis might occur.
- Once the rheumatologist saw my fibrosis in lungs had not worsened he wouldn’t repeat tests
- With being part of Auckland hospital my tests are regular and great network of specialists involved
- Haven’t been to rheumatologist for 3 years. He asked for monthly blood tests, but have not been for three years so have no results
- Feel I am very well covered