I first met Les Halpin, who has died of motor neurone disease aged 56, not long after he was diagnosed in 2011 with the progressive neurological disorder. Despite knowing that there would be no new treatment options open to him, Les, supported by his wife, Claire, was determined to find a way of ensuring that future sufferers would not face the same obstacles he had.
The final two years of his life were dedicated to Empower: Access to Medicine, a campaign to improve access to drug treatment for people with uncommon and life-threatening illnesses. Les was a constituent of mine in Gloucestershire, and I was privileged to work with him in bringing his campaign to the attention of Westminster politicians and policy-makers. The e-petition he started can be seen online at accesstomedicine.co.uk.
A statistician by profession, Les could see that the amount of investment in drug development was not reflected in the number of medicines that reached the market. He aimed to tackle the lack of drug development, and what he saw as a cumbersome, expensive and slow system, as well as a general reluctance on the part of doctors to prescribe drugs at the trial stage because of the threat of litigation.
Les launched the Halpin protocol, a proposal to allow patients the choice of trying experimental drugs, with informed consent, when there was no other treatment open to them. He was clear that terminally ill patients would be willing to take more risks in using medicines still under development.
Les was born in London and brought up in Essex. He graduated from Exeter University in 1976 with a first in mathematical statistics and operational research. After working for Barclays Bank, British Gas and Lloyds Bank, in 1984 he joined the financial services company Record Treasury Management. In 2007 he joined Lightfoot Solutions, a business consultancy, becoming its chairman in 2009.
Before his diagnosis, he led an active life, flying, skiing and hiking. He had a dry wit, which he used in support of his campaign – he certainly gave John Humphrys a good run for his money on a telephone interview from his bedside on the BBC Radio 4 Today programme in February.
Les met Claire while they were both students at Exeter University. She survives him.
This obituary can be found on the Guardian website www.theguardian.com/society/2013/nov/07/les-halpin