Ms Kerry Lawless:

One of the reasons we are here is that patients come to us after their GP has either recognised the rash but did not have the confidence to diagnose or was worried about treating and relied on the enzyme-linked immunosorbent assay, ELISA, test or forms of the two-tiered testing. It seems to be very hit and miss.

We advise people that the will have to go through a number of steps and overcome a number of obstacles. I do not know any other illness for which people have to do this.