GPs Rely on Internet for Info on Rare Disorders

A shocking 60% of GPs source information about rare health disorders from the internet, a new research report, published by RehabCare, has claimed.

The study, funded by the Health Research Board, found severe deficits in the information available to all front-line health professionals and calls for an island-wide information and support centre to be established as a matter of urgency.

The report highlights the need for a centralised information service for medical teams as well as for patients and their families. At the very least, a reliable, accessible source of information is needed to minimise the risk of families who experience rare disorders accessing inaccurate and out-of-date information on the internet and feeling overwhelmed as a result, it said.

“Many of the families that were consulted reported negative experiences of receiving information about rare disorders. Doctors also highlighted the issue of the lack of information available with over three-quarters experiencing difficulties in providing information to families about rare disorders. A centre of expertise, supported by a website and guided by specialist health professionals and families, is therefore a key necessity,” commented Angela Kerins, Chief Executive, Rehab.

Having a rare disorder can cause family problems, including feelings of isolation, financial pressures and siblings feeling overlooked, according to 72% of GPS. It is envisaged that the new centre would therefore address these needs through the provision of counselling, respite care, peer and sibling support.

Posted Thursday 17th July 2008