Andrew Harrison, Head of Department of the Wellington Regional Rheumatology Unit and Associate Professor in Medicine at University of Otago, Wellington.
Scleroderma, Andrew Harrison says, is poorly understood and it lacks a high profile. Drug companies prefer to research medicines to treat common diseases because they make a lot more money. The Beehive can overlook scleroderma too.
“There’s low political incentive for funding because there just isn’t enough of you to vote governments in and out,” he says.
So there’s no cure for scleroderma and no race to find one.
“On the bright side, if a drug were to be funded, it wouldn’t break the bank,” he says but academic interest rather than the promise of large financial rewards is still motivating research into the disease.
With a general lack of knowledge amongst primary health care providers, Andrew says you, the person with the disease, are top of the Most Valuable People list.
- You know a lot more about it than the health professionals.
- Your general practitioner will recognise that a rheumatologist or immunologist might be useful.
- Rheumatologists and immunologists can coordinate your care and lead you on to other specialists (whose expertise may lie with just one organ) as the need arises.
- Specialists include those in podiatry, cardio, renal, physiotherapists.
- Facilitators make things happen: nurse specialists, practice nurses.
Andrew’s advice: don’t put too much faith in health system.
“You will know more about your condition than most doctors,” he says, many of whom may hear of it as 5th year medical students but may not have heard of it again till they met you.
“So the more you know, the better your care will get,” is this specialist’s advice.
Rheumatology advice is stretched to capacity. Andrew says the recommended ratio of rheumatologists to the population is 1 to 100,000. In 2004 there was one per 238,000 people; in 2012, 1 for 162,000. So things are improving but we are still not doing well.
Having advocated self help, he outlined how to apply it.
How to get urgent help
In extreme urgency, call your local hospital’s emergency department first. They can ring your specialist. You can call the hospital’s rheumatology department or even go directly to your GP and get him or her to contact specialists.
Andrew Harrison says he is in favour of patients planning should they run out of medication or experience severe scleroderma symptoms. Plan with your specialist and GP. For example, you need a plan if your blood tests suddenly show extreme readings.
“It really is a case of the squeaky wheel getting the oil and you’ve got to be prepared to squeak occasionally,” he told the seminar.
Andrew also advised us to keep our own copies of records, particularly if doctors from different DHBs are involved. He advises you to take your records with you to ensure a complete history of your treatment is available.
Visiting a specialist
Andrew Harrison has treated scleroderma and related diseases probably more than most. He had suggestions for those for whom these visits are brief and overwhelming.
Decide what you want out of the appointment. Don’t waste time describing symptoms: concentrate on your main concern. If you prefer, write up a list of what you hope to cover to avoid leaving the room kicking yourself because you forgot to ask some questions.
Stay informed on scleroderma as it relates to your specific problems and don’t waste time wondering why you have scleroderma – it happened so focus o n the things that matter, such as managing Raynaud’s, reflux, skin ulcers, respiratory involvement and maintain a healthy lifestyle.
You are the lead health care adviser for yourself and, according to Andrew, you need to understand both your condition and the health system and be proactive.
Don’t wait for the big things to happen.