GPs Used Internet For Diagnosis

A major disability group has called for the establishment of a national centre for people affected by rare medical disorders, following revelations that GPs resort to the internet for diagnosis.

A survey by the Rehab group into how GPs sourced information on rare disorders revealed that 60% of those surveyed said they had to use the internet.

A spokesman for Rehab said: "This clearly indicates the need for reliable, accessible information to be available to health professionals from an Irish source, in a format suitable for families."

The group has now petitioned the government to establish a 'centre of excellence' where health professionals will have access to centralised information.

The report says there are between 5,000 and 7,000 rare disorders on the island of Ireland, most of which affect children, and that around 350,000 people are affected by disorders, like Prader-Willi Syndrome, Fragile X and Williams Syndrome.

Families surveyed for the report say they are often presented with poor information on these disorders, or worst case scenarios and can feel overwhelmed.

Angela Kerins, Chief Executive, Rehab, 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."

With over 70% of GPs reporting that having a rare disorder gives rise to family problems, which can include feelings of isolation, additional financial pressures and siblings feeling overlooked, it is hoped the proposed centre would address these needs through the provision of counselling, respite care, peer and sibling support.

(DW)