Statement: Need to expand health agenda 2004-11-13

There is an urgent need to expand the agenda of immediate health reform to those conditions that by and large do not appear in the "crisis" statistics, but that none the less are associated with extreme hardship and shortened life expectancy, writes Orla Hardiman.

Orla HArdiman, Bsc, MD, FRCPI, FAAN, Consultant Neurologist,

Director of Neurology, National Centre for Neuroscience, Beaumont Hospital, Dublin 11

There is an urgent need to expand the agenda of immediate health reform to those conditions that by and large do not appear in the "crisis" statistics, but that none the less are associated with extreme hardship and shortened life expectancy.

Neurological disorders are a useful model to examine how we treat chronic illness in Ireland At least 500,000 people, or 12 per cent of the population, suffer from a chronic neurological disorder like MS, Parkinson's, motor-neurone disease, migraine and epilepsy. Stroke is a leading causes of death and disability.

There seems to be limited interest among policy makers in developing and promoting services for people with chronic disease. This seems to relate in part to the absence of reliable information about such diseases in the Irish population. Attempts to identify patients previously unknown to the health services are currently restricted by stringent data-protection laws, which makes it almost impossible for policy makers to obtain accurate information. The shortage of specialists will of course result in larger numbers of people who have never been identified.

Priority for investment in the health services seems to be driven by areas of health care that are seen as "measurable" – i.e. for which statistics can be generated and made public. Two of the main "measurables" currently used are the overcrowding in casualties, and the waiting-lists.

But the validity of both measures as the main indicators of hospital efficiency is highly questionable. With regard to waiting-lists, outcome measurement, in the form of surgical operations, is relatively easy to determine. However, management of conditions that do not require an operation is more difficult. Waiting lists are particularly bad at measuring the need for "medical" management, which is what is required for most chronic conditions.

There are currently no reliable ways of measuring the true burden of chronic disease within the Irish population. T here is no way for those who generate and implement policy to determine the hardship that the absence of services engenders. Thus, policy generation has no method for finding out the extent to which services must be developed.

What should be done?

We must recognise that measurement of our health care is not just about hospital A&E, admissions and operations. The vast majority of people who utilise the public health service do not go to A&E. They have chronic problems that are not treatable by surgery.

There is an urgent need to amend the data-protection laws so that we can generate complete and reliable data regarding the needs of all of those with chronic disease.

There should be concomitant development of multidisciplinary teams to address the needs of people with chronic diseases. These teams should have mechanisms in place by which their activities can be audited and outcomes measured.

Planning of services can only take place in the context of accurate data regarding the projected needs of those patients with chronic conditions. The availability of such data will then permit the generation of reliable outcome measures, and ultimately the implementation of high quality, responsive evidence-based service.