Education And Debate

Acknowledging the expertise of patients and their organisations

BMJ 1999; 319 doi: https://doi.org/10.1136/bmj.319.7212.771 (Published 18 September 1999) Cite this as: BMJ 1999;319:771
  1. Judy Wilson, director ([email protected])
  1. The Long-term Medical Conditions Alliance, London EC1N 7RJ

    The proportion of people living with a long term medical condition, both in the United Kingdom and throughout the world, is rising.1 2 By living with and learning to manage a long term illness many people develop a high degree of expertise and wisdom. This article suggests ways in which people with a long term medical condition and their organisations can help develop partnerships between healthcare professionals and patients and questions how much their potential contribution is appreciated and capitalised on.

    The US Centers for Disease Control and Prevention defines chronic diseases as “illnesses that are prolonged, do not resolve spontaneously and are rarely cured completely.”3 The Long-term Medical Conditions Alliance is developing a much broader definition that emphasises the effect that this type of illness has on people's emotional and social wellbeing; on their social, community, and working lives; and on their relationships. The alliance's definition emphasises the opportunities available to improve a person's quality of life, even when there is no cure for a particular condition. All these issues must be taken into account in planning when assessing a person's needs and how best to meet them.

    The Long-term Medical Conditions Alliance is the umbrella body in the United Kingdom for 96 national voluntary organisations. Formed initially because of concerns arising from the reforms to the NHS in 1990, during which market principles were adopted to increase the efficiency of the service, the alliance enables organisations to work together to gain mutual support, to identify common concerns, to develop solutions, and to influence policy and practice.

    Summary points

    People living with a long term illness develop expertise and wisdom about their condition and want to play a part making decisions about their own health care

    Partnerships should be encouraged between individual patients and healthcare professionals and between patients' …

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