| Specialist | # respondents | Specialist | # respondents |
|---|---|---|---|
| Cardiology | 12 | Respiratory | 12 |
| Dermatology | 4 | Rheumatology | 18 |
| Gastroenterology | 9 | Dental | 4 |
| Immunology | 1 | Dietician | 1 |
| Renal (Urology) | 3 | Neurosurgeon | 1 |
Many respondents had been referred to two or more of the listed specialists. As would be expected the majority of the patients had been referred to rheumatology, but also between 40 and 60 percent of respondents had been referred to cardiology, respiratory and/or gastroenterology.
Some of the specialists were in the private sector and some were public sector consultants based in hospitals or publically funded clinics For those who have been referred on by their GP, there has been access to a range of disciplines.
| Specialist | # Responses | Range | Average |
|---|---|---|---|
| Cardiology | 12 | 5 - 10 | 8.8 |
| Dermatology | 4 | 1 - 8 | 5.3 |
| Gastroenterology | 9 | 4 -10 | 7.4 |
| Immunology | 1 | 10 | 10.0 |
| Renal (Urology) | 3 | 5 - 8 | 6.0 |
| Respiratory | 12 | 5 - 10 | 7.9 |
| Rheumatology | 18 | 1 -10 | 6.7 |
| Dental | 4 | 4 - 8 | 6.3 |
| Muscle biopsy | 1 | 7 | 7.0 |
| Neuro surgeon | 1 | 9 | 9.0 |
Respondents had had a variety of experiences with the specialists to whom they had been referred. The following comments demonstrate the confusion about this rare disease even among those to whom patients seeking answers are referred. These comments are indicative of the levels of satisfaction respondents have with their specialists.
- Rheumatologist would not refer me for preventative hand therapy, nor for any more tests (don’t have the money). He acts when things are bad, but is not interested in preventative care, only treating bad symptoms.
- Gastroenterologist, respiratory physician and urologist all deny my condition is related to scleroderma. Rheumatologist confirmed a diagnosis of “CREST”, said he hoped I didn’t deteriorate too fast because there was no treatment
- Dermatologist was utterly hopeless –prescribed over the counter moisturiser – did not even look for any underlying cause of my very broken skin all over hands and feet. Total waste of time and money
- All pretty much can’t do anything but take the tests so very unsatisfying and no real symptomatic relief achieved or offered until I was insistent. Felt like was only attending so they could gather statistics
- No empathy, or follow up on very painful symptoms. No nutritional knowledge or information on who I could talk to about alternative sources of healing or exercise regimes. Just no real information at all.
- Dermatologist was utterly hopeless –prescribed over the counter moisturiser – did not even look for any underlying cause of my very broken skin all over hands and feet. Total waste of time and money
- All pretty much can’t do anything but take the tests so very unsatisfying and no real symptomatic relief achieved or offered until I was insistent. Felt like was only attending so they could gather statistics