Endocrine Abstracts

Patient groups share the view that individual accounts of their condition and its’ subsequent management convey important messages. This highly anecdotal and personalised information can provide emotional support to help others with the same or similar conditions. It may also be useful in empowering patients to overcome the many potential psychological and social difficulties. It has become increasingly recognised that patient groups can form an adjunct to more traditional models of health care provision. Groups can share information, bring conditions into the spotlight, enhance knowledge and even question medical decisions. However, the use of these groups can be detrimental, with the loudest voices being those who have been most unhappy with conventional medicine. This skews the perception of these groups and without a specific agenda they may become a forum for people predominantly to raise grievances. Professional health care involvement can minimise risk of anger and ignorance developing towards the healthcare system.

The Nurses Code of Conduct stresses the need for us to positively promote the interests of patients and other health care users with provision of information and support relevant to their needs. This may include involvement with support groups. But to what extent do specialist nurses acknowledge their existence and become involved? Where does this involvement stop? Do we provide details of groups to the patient only, or do we become chair / editor / co-ordinator of the local group and newsletter? How much information do we impart if we do get involved? Is there risk of becoming the person to whom all questions are asked? Is this wise? When does ‘involvement’ become ‘entanglement’, and how does one extract oneself from the group if it becomes too much?

This talk will explore these issues, in particular discussing the benefits and pitfalls of patient group involvement.