Since my diagnosis, I had done a great deal of fundraising and publicity for the Motor Neurone Disease Association and they asked me if I would take part in a talk-back programme with Sue Lawley regarding Death on Request.* They didn't, however, take the precaution of checking my views on voluntary euthanasia, and when they found out two days before the programme was due to be recorded that I supported voluntary euthanasia, the MNDA pulled me off the programme and replaced me with someone who toed the party line. I was appalled that an organisation, which to all intents and purposes exists solely to support their membership and the views of that membership, should take such a unilateral view.
The Chief Executive informed me that the MNDA was opposed to voluntary euthanasia because it gave the wrong signals to newly diagnosed patients and that, in any case, he had never before come across an MDA patient who supported voluntary euthanasia. I informed him that he was clearly more out of touch with his membership than I had previously imagined. Following this, the MNDA grudgingly asked me to write a debate-type piece for inclusion in their monthly newsletter, where I would be able to state my views and a patient with the opposing view would state theirs. Having written this, I was then informed that the article had been vetoed by the National Executive Council, but would I like to write a little piece about some of my experiences with alternative medicine!
As you may imagine, my dealings with the MNDA have cooled somewhat since that time and this, combined with some ongoing problems we were having with them, promoted me to start another motor neurone disease charity: the Motor Neurone Disease Care and Research Society. MND is a degenerative neurological condition which currently has no known cause or cure. The disease kills the nerves which control movement so that sufferers, whilst retaining total brain function and being able to feel pain, find themselves gradually trapped inside a completely paralysed body. Average life expectancy after diagnosis is three years.
*BBC showing of a film made in the Netherlands of a man with Motor Neurone Disease receiving euthanasia.