Patients with long-term conditions, their carers, and advocates

Abstract

The e-mail popped up announcing a government-sponsored consultative day-conference entitled Developing Services for People with Long-Term Conditions . Chronic disease is what GPs do; this looks good for the CPD portfolio, it’s a day out, and it’s free. It turned out not to be what I expected. I was the only GP present and there was not a single clinical thought all day. In true civil service style it was multidisciplinary and inclusive across the natural boundaries of health and social care: managers and policy makers, patient groups, and community organisations. There was an independent chair, minute takers, catered breaks, and lots of ‘ break out into your small groups and report back on … ’ To my surprise I learned much, and came away with copious notes and the outline of a Reflective Learning Diary concerning things I had little prior appreciation of, such as community work and self-help organisations. Government and health trusts place much emphasis on the ‘voice of the consumer’. They show the kind of attentive respect that provoked wistful thoughts in this GP. In turn, the bodies that represent the interests of patients demonstrate a grasp of the politics of service provision and a commitment to their ‘community of interest’ despite their mutual competitiveness. I was impressed with the depth of work that is going on at community level. The constellation of disease-specific organisations for self-help have found that forming a federation gave them a voice, an informed and informative network that filtered every public document for implication, threat, and opportunity. This Long Term Conditions Alliance links with other bodies at a national level that network information and experience about what works elsewhere. They draw on a wide skill-base of people who live with long-term conditions: business people, politicians, media personalities, teachers, academics, community developers, …