Father of CJD victim to give keynote speech
A bereaved father who has become a catalyst in health research since the death of his younger son from a rare and devastating brain disease will speak in Tayside this week.
- By Marjory Inglis, health reporter
- Published in the Courier : 26.04.10
- Published online : 26.04.10 @ 07.55pm
Lester Firkins will address a conference in Crieff on Tuesday and will speak at a seminar at Ninewells Hospital on Wednesday, advocating that patients and clinicians should have more say in the type of work that medical researchers undertake.
His son Ellis was just 25 when he died from variant CJD, the human form of so called "mad cow disease" which affects the brains of cattle.
Mr Firkins said, "It is a very rare condition. Ellis was case number 90. He died on March 1, 2001, and I think we are up to case number 165 now."
Mr Firkins said he had no complaints about the treatment and care given to his son, but not much was known about the disease and there was a drive at that time to find out more.
An expert asked to lead the work insisted on working with a lay person and he chose Mr Firkins.
It was successful and led Mr Firkins to become interested in research priorities for a wide range of conditions and how patients and carers could influence those.
He will be a keynote speaker on Tuesday at the Scottish School of Primary Care's conference in Crieff Hydro Hotel, where he will address GPs and healthcare professionals from all over Scotland.
The title is Why Patients And Clinicians Should Tell Researchers What To Do.
On Wednesday he will speak at a public seminar at Ninewells for the Tayside Academic Health Sciences Centre.
