Mark Walker is what the NHS calls an “expert patient”. He’s someone who knows all there is to know about the disease that has shadowed his existence on and off, for nearly 20 years, forcing him to give up the high-flying job he adored, and curtailing an active life. Walker asks difficult questions of doctors, expects candid answers, and pursues new research doggedly.
Before our meeting at the pretty bungalow on the outskirts of Oxford where he lives with his wife, Natasha, he provided me with a detailed record of the onset of his multiple sclerosis (MS): from the first signs of a problem (double vision in December 1991) through putative diagnoses (myasthenia gravis and a brain tumour) and accumulating symptoms (numbness, balance and bladder problems) to definitive diagnosis in 2000. Each treatment tried and its result are documented meticulously, as you would expect from someone who qualified originally as a pharmacist.
Today, at 51, the former IBM management consultant has severely impaired mobility on his right side. He relies on a walking aid known as a Musmate and trekking poles. He knows what, in all probability, lies ahead – a life of increasing debilitation and limitation. It is this glimpse of the future that lies behind his decision – a “rational and considered one” – to go to Athens for tests and, possibly, treatment based on a controversial new theory about the cause of MS.
Walker is frustrated, however, that he must seek help abroad and, given that he lives close to two world-renowned MS centres at the John Radcliffe and the Nuffield hospitals, angry at the lack of support from MS experts here in exploring new approaches.
“Yes, I am desperate. Two years ago I was living in a three-storey townhouse in the centre of Oxford. Now, I’m living in a bungalow because I can’t do stairs very well. Ten years ago, I was managing a team of 20 people in Rome. Now, my life is all about managing my disease.
''In the 21st century, patients like me, who are well informed about their progressively disabling disease, should be allowed to choose private diagnostic tests and treatment for themselves. And health-care professionals should surely be helping patients’ freedom of choice.”
Source: The Telegraph