John Crown (Independent) | Oireachtas source

The topic before us may seem arcane but it is actually very important. Vasculitis is an overall term for a group of life threatening diseases characterised by widespread inflammation of blood vessels, often throughout the body. Inflammation of these blood vessels may lead to blockage or rupture of the vessels, death or bleeding in the affected organs and catastrophic consequences for the health and, sadly in many cases, the lives of affected patients. Early diagnosis and effective treatment is critical in preventing death, organ failure and disability. While highly effective treatments are available, patients may deteriorate rapidly, often within months or even weeks, unless effective therapy is commenced.

How common is this problem? There are more than 15 types of primary vasculitis, which is defined as vasculitis for which there is no known precipitating cause. There are also many forms of secondary vasculitis relating to illnesses with which Senators will be familiar. While individually many of these diseases are rare or, in some cases, exceedingly rare, collectively the entity of vasculitis is relatively common. It affects a significant number of patients, with estimates that more than 50,000 citizens on the island of Ireland will experience vasculitis at some point in their lives. Due to the widespread nature of the inflammation in vasculitis, affected patients may present with symptoms to a variety of doctors, including eye doctors, ENT specialists, skin specialists and gut specialists. As individual forms of vasculitis are rare, the diagnosis may not be recognised even by a competent physician.

In early stages, doctors may not be familiar with the fact that certain symptoms are due to vasculitis. As a result, delays in diagnosis and, indeed, misdiagnoses are common even in good and competent hands, potentially leading to inadequate or inappropriate treatment. This clearly increases the risk of disease and treatment-related complications.

Current European guidelines recommend that patients with suspected vasculitis should be evaluated in a centre of excellence. Failure to diagnose and treat the disease appropriately not only has significant health consequences for patients but also significant economic consequences. A case in point is kidney disease. Many patients with vasculitis will develop kidney disease, which if treated early can be prevented from developing into chronic kidney illness. If, however, the diagnosis is missed or the treatment is delayed, these patients may develop chronic renal failure with the result that they require renal replacement therapy either through dialysis or transplant. We are all aware of the personal and societal health and economic costs of dealing with kidney failure.

It is proposed that a system of centres of excellence be developed throughout the island of Ireland. This would accord with European guidelines and EU recommendations for the management of rare diseases, as well as being consistent with the national rare disease plan for this Republic. A network of specialist clinics to diagnose and manage patients with vasculitis is required to provide streamlined rapid access for patients with suspected vasculitis to an appropriately resourced clinic where prompt diagnosis and judicious treatment, potentially without the need for hospitalisation, may prevent complications and reduce health care costs. The HSE should also attempt to increase awareness and educational activities in this area. There should be one specialist clinic in each of the newly-defined hospital groups, which would be staffed by an appropriate array of medical specialists and supported by clinical nurse specialists. There should be rapid access to outpatient diagnostics to keep people out of hospital and enable them to get the appropriate treatment that saves their health and the health system's money. There should be access to appropriate therapy, disease registries and international collaboration. It is essential that a high priority be given to setting up this network, which offers huge cost savings as well as considerable benefits for the health of individual patients.

I will bore the House for one more minute by outlining some of the conditions that can cause secondary vasculitis. Many of the primary disease are rare, such as giant-cell arthritis and polyarthritis nodosa, but some of the disease that are secondary causes of vasculitis will be familiar to the House, such as rheumatoid arthritis, lupus, inflammatory bowel diseases and sarcoid ulcers. These disease are relatively common in Ireland. I hope action will be taken on providing more appropriate treatment of these conditions.