| Specialist | # Responses | Range | Average level of satisfaction with information received |
|---|---|---|---|
| Cardiology | 12 | 0-10 | 6.6 |
| Dermatology | 4 | 0 -8 | 4.3 |
| Gastroenterology | 7 | 1 - 9 | 4.0 |
| Immunology | 1 | 8 | |
| Renal (Urology) | 4 | 1 -8 | 2.75 |
| Respiratory | 11 | 1 - 9 | 5.9 |
| Rheumatology | 18 | 1 - 10 | 6.2 |
| Dental | 3 | 2 - 7 | 5.0 |
| Muscle biopsy | 1 | 7 | |
| Neuro surgeon | 1 | 8 |
| No information received | 1 |
|---|---|
| Not rated | 2 |
There is a range of levels of satisfaction achieved with the response to questions and provision of information about systemic sclerosis. Some statements have been
- Usually only some oral comments but will answer questions. Need to have an informative booklet available to each patient – we are intelligent and want to work in partnership to manage this challenging condition
- Treatment from some of them has been very good, but each deny emphatically that there is any relationship to scleroderma and my condition although I have been diagnosed by my rheumatologist as having CREST
- Will explain concerns
- My first specialist in rheum department for 14 years not so good. Then another for about 5 years, just OK. My current rheumatologist is very good.
- I get most of my information off the internet and my rheumatologist seems threatened. Even mentioned it on my last report back to my GP
This last comment about accessing the internet has been a recurring one. Currently there appears to be no reliable guidelines about the information that is available from the internet with the consequence that old and unreliable information and comments can cause quite unnecessary stress to those with this disease. One comment has been that the information available on the internet through sites such as the scleroderma.org website “Scleroderma Inspire” is very valuable as the blogs on this are from people with scleroderma and many of them identify the most current information and give internet addresses where such information is able to be sourced.
| # Respondents: 21 | Range: 1-10 | Average: 7.1 |
As would be expected, many GP’s do not have a great deal of knowledge about this disease, but responses show that they are continuing to refer patients on for specialist diagnoses and associated treatment.
- GPs admit not much knowledge of scleroderma so get referred on
- My GP does not have as much knowledge of scleroderma, but my GP is excellent – he will refer me on for help – has sent me to the hand therapist. I have asked him to be my umbrella doctor as I have no faith in my specialists
- Recently discovered GP who is excellent. Have been with him only since January this year. Until then GP care was not the best.
- GP has made it clear that scleroderma is out of her depth but will refer me if I have any concerns.
- Didn’t know much so just referred me to others. At least was sympathetic!
- Over the years I have found GP’s do not understand scleroderma and would rather leave it to the specialist. Just go for prescriptions only
- Absolutely excellent. I feel very confident in discussing my condition with my GP and working on managing it as a team
- Virtually no knowledge of the condition other than some basic Raynards knowledge