Revisiting the Expert Patient

‘Generally, society deals with death in a near hysterical manner, viewing practically every death as a tragedy and bereavement as an illness requiring healing.’

Such is the view of Blair Robertson, an NHS chaplain (BMJ, 14 Jan 12). His words were interesting to read as, in the same week, I had taken the topic of dying as the subject for this column. Society’s response to death is hardly surprising when we read of the remarkable lives of people such as Professor Stephen Hawking, the famous cosmologist, and author of the best-seller, A Brief History of Time. Only one week previously an article appeared in the national press informing the world that Prof Hawking was too unwell to deliver his 70th birthday speech (Telegraph, 9th Jan 12). Of course, Prof Hawking is always too unwell to deliver any speech, owing to a condition called motor neurone disease. In reality, any speech he has is electronically composed letter by letter, and then delivered by him using his cheek muscles to operate a voice synthesiser.

Prof Hawking is a wonderful example of how people with long term conditions can still lead remarkable lives. The fact that he has even seen his 70th birthday is a modern-day miracle. Although we tend to use the verb ‘to suffer’ in order to describe the process of living with a chronic condition, Prof Hawking is an example of how people can lead fulfilling and enjoyable lives despite their condition. I am sure that suffering does come into the equation, but so too does a life of satisfaction and pleasure. The trick is to know how to turn around the perception of unavoidable misfortune and pull from life a positive outlook and a sense of well-being.

Last year, I wrote about a new course available in North Lincolnshire. At the time, NHS North Lincolnshire was looking for ‘Expert Patients’; volunteers to train to deliver the course known as the Expert Patient Programme. Now, having seen the satisfactory completion of the first course, patients wishing to participate in future courses are being asked to put their names forward. Delivered during one afternoon per week over a six week period, the course is aimed at people living with long-term conditions. Note that I use the term ‘living with’ rather than ‘suffering from’, for that is indeed what this course is aimed at bringing about. It teaches the skills of self-management and action planning, how to deal with pain and extreme tiredness, how to coping with feelings of depression, the skill of relaxation and how best to exercise, tips on healthy eating, the need for communication with family, friends and health professionals, and last but no means least, how to positively plan for the future.

Writing in the Times Literary Supplement in September last year, the writer and poet Hugo Williams described his reaction to his need for dialysis to treat his kidney failure. Given the choice of dialysing on a daily basis at home or visiting the hospital four days a week, Williams chose the latter on the grounds that it would offer him the chance to ‘pretend to be still in the old free world’. That was his way of trying to ‘live with’ his condition rather than allowing it to take over his entire life. I have no doubt that both Williams and Prof Hawking would fully approve of the Expert Patient Programme.

Christopher Hitchens is another writer who I am sure would have given his seal of approval to the course. Sadly, he died last December. However, true to his inimitable self, and in spite of various tubes and other paraphernalia attached to him, he insisted on being propped at his desk during his final days and finished writing an article just hours before his own ultimate deadline. Hitchens amply demonstrated Prof Hawking’s exhortation: ‘Remember to look up at the stars and not down at your feet. However difficult life may seem, there is always something you can do and succeed at; it matters that you just don’t give up.’

(First published in the Scunthorpe Telegraph, Thursday, 2nd February 2012)