'Feeling poorly': Report of a pilot study aimed to increase the ability of people with learning disabilities to understand and communicate about physical illness

Abstract

There is a current emphasis from Department of Health publications on the need for people to take responsibility for monitoring and improving their own health. This includes people with a learning disability (PLD). This paper presents the findings of a pilot study which investigated whether people with learning disabilities can understand and communicate more effectively symptoms of illness. Assessments for GPs, clients and carers were designed in order to ascertain the nature of consultations currently taking place, and the level of awareness that clients had of their body and being ill. From the assessment information gathered and reviews of the literature on primary health care access for PLD and children's experiences of pain, an appropriate teaching package was designed and a twice weekly group held for ten weeks. This aimed to teach body awareness and necessary skills for communicating with primary health care teams; and included the design, and implementation of a communication aid pack. Repeat assessments following the end of the group and after six months indicated that it is possible to teach people with learning disabilities to understand how their bodies function, to use pictures of pain to describe symptoms of illness and to understand more about the process of going to the doctors. This was facilitated by the use of communication aid resource which both doctors and clients evaluated as useful. For the information to be efficiently retained by the clients it is suggested that a greater degree of follow-up work is undertaken on completion of the teaching group with participants, carers and GPs.