Abstract
This essay proposes seven pre-requisites for the creation of effective programmes of care and support for patients living with the consequences of chronic genetic diseases. It then goes on to discuss the role of patient organisations and other stakeholders in bringing about the development and implementation of these.
Highlights
This essay proposes seven pre-requisites for the creation of effec- a holistic approach to problem solving, thinking outside the box when tive programmes of care and support for patients living with the con- the occasion demands in order to bring together the elements of care, sequences of chronic genetic diseases
E this might mean searching out the least worst rather than the best possible combination among the options available due to the paucity of m expertise available, or the limitations on our current abilities to alter the course of a given condition and improve the quality and/or the m quantity of life for those affected. o For patients and families living with chronic disease to be able to c gain and retain the degree of control over their lives that they wish to - given their situation and the limits imposed by their condition a partn nership approach, with all stakeholders contributing their specific expertise and knowledge is essential
It is important to recognise that, whilst many common chronic diseases that are currently the focus of much attention because of the demands that those affected make on the healthcare systems to which they look for care are potentially preventable, chronic ill health arising from rare and genetic causes is generally unavoidable in the absence of effective therapies to treat or cure
Summary
This essay proposes seven pre-requisites for the creation of effec- a holistic approach to problem solving, thinking outside the box when tive programmes of care and support for patients living with the con- the occasion demands in order to bring together the elements of care, sequences of chronic genetic diseases. Inadequate coordination of centrally and locally l delivered element of care and support can create confusion, with ia patients and families getting mixed messages and partial services, falling through the net because of a breakdown in communication, or rc even receiving inappropriate interventions which hinder rather than help.
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