Lester Firkins

Abstract

Tragedy hurled Lester Firkins into the thick of lay involvement in health care in 2001 when Ellis, his 25-year-old son, became the 90th person in the UK to die of variant Creutzfeldt-Jakob disease (CJD). Until then an area director for Lloyds TSB, Firkins says of his change of direction: “Ellis's death followed 6 months of relentless decline, brought fear to the GP's eyes, isolation from the world, and leaves us knowing we'll never laugh again. Well, almost never. After that, I decided not to return to the bank.” Instead he went on to chair the UK's Human BSE Foundation for 2 years. During that time he made links with the Medical Research Council (MRC), which now uses him as a business consultant. He also sits on the steering group of the James Lind Alliance, a new clinician/patient collaboration in the UK, is a member of INVOLVE, which promotes and supports public involvement in research, and is co-chair of the PRION-1 trial for quinacrine in CJD. He's a busy man; we snatch a meeting in London at the Royal Institute of British Architects in the middle of an MRC day. Firkins admits “One big question: is lay involvement real, or just going through the motions?” When I ask whether it's tokenism, he says “I just never thought it needed formalising. In a sane society, doctors would take patients' and carers' views into account.” Describing his “professional box” Firkins says: “You polish diamonds with sand. I want to be the sand, make whatever's going on that bit brighter.” He sets this role apart from “the private box, the tears, the total loss”. For Firkins his Christian faith enters both boxes, and he believes in influencing change from the inside, but adds “There's a tension between being the sand and being soppy. If you're involved with the establishment and keep crying, you lose that sandiness.” And he admits his role exposes other tensions: “It's a thrill to meet people not motivated by money, although papers, territory, Nobel prizes can make them competitive. I understand, but the stakes are different, those rules shouldn't apply, it's mean on patients.” Firkins says his non-academic background sometimes creates barriers: “It was suggested I research parallels between CJD and the early days of AIDS. I thought I'd read, talk to people, but they started asking about research applications. I haven't done it yet.” Firkins is sharply perceptive, likeably straightforward: “I was on a platform discussing the ban on cattle entering the food chain. The great, the good, and statistics. They'd calculated that letting old beef in might mean two people dying over 10 years. I said 'vote yes only if you're happy that one of those two could be your son'.”