Having a say
by David Preece

In the first of two articles former BSA trustee David Preece gives us an insight into a new research project that will hopefully have a positive outcome for people with communication difficulties, including stammering. (Link to second article.)

In the Spring of 2000 I was asked if I would like to play a part in a new research project being carried out at the City University in London. The full title of the project, 'Having A Say : promoting the participation of people who have communication difficulties in health care decision-making' had me hooked immediately and I accepted.

The project - linked to several others in the Health in Partnership Research Initiative and all funded by the Department of Health (DoH) - came into being when it became clear from previous research that people with communication difficulties were not always involved in decisions taken about their health care. They wanted more information and they wanted to be involved in their care.

The five researchers for this two year project, (February 2000 - January 2002), are Sally Byng, Susie Parr and Sharon Farrelly (City University), Louise Fitzgerald, (De Montfort University, Leicester) and Sara Ross, (Communications Forum). They have between them a wealth of knowledge and practical experience of communication disorders and difficulties, and not only in the world of speech and language therapy and stammering. This project will look at a range of communication problems associated with many health conditions, e.g., people who have had a stroke, people with dyslexia and others with specific language or hearing difficulties. As our definition of a communication difficulty states : 'communication involves people sending and receiving spoken, written, gestured, drawn or signed messages. People with communication difficulties experience difficulties in sending and receiving messages'.

The main aim of the project is to develop guidelines for health care personnel which would better enable them to inter-act with people who have communication difficulties and thereby involve them in the decision-making process. In tandem with this, user-friendly guidelines would also be provided for the consumer and they would be designed to complement each other. Both would raise awareness of the rights and responsibilities of users and providers.

To carry out this research our 'Intrepid Five' will divide the project into several stages, from reviewing literature on the subject, through to interviews with people who have communication difficulties and health care workers of all grades; surgical, clinical and clerical. A further stage will be to cross-test the gathered data from three targeted areas, (namely Swindon & Wiltshire, North Warwickshire and South London), with mixed focus groups including users and clinical providers. Along with the guidelines, a report will be published in several forms to be accessible to people with language impairments. The project will be published by the DoH and also appear in health care and policy journals.

My own role, as one of eight advisory board members, is to advise and support the research team in reviewing the timetable and progress of the project and in helping with publicity - hence this article. Other tasks may emerge as the project unfolds. The eight advisors are well versed in expressing their own difficulties and frustrations in the area of communications and include a stroke victim, a deaf member with visual impairment and an aphasia sufferer. Our initial meeting with the researchers took place at City University in July 2000 and three further sessions were planned during the lifetime of the project.

I do hope that BSA members responded to the request in the Members October 2000 Newsletter and came forward for the interview stages. It really is a worthwhile and stimulating initiative and one that can only improve awareness, both for health care workers and ourselves, of the communication difficulties that we all face.

From the Autumn 2001 edition of Speaking Out

See also:
Winter 2002 article outlining results of the Having a Say project