Abstract
Background: Communication and swallowing changes are prominent in Parkinson's disease, but there remains a lack of information regarding the experiences and expectations of people with Parkinson's disease in respect of speech–language therapy (SLT) services.
Aims: To conduct a survey of people with Parkinson's disease and their carers in the United Kingdom to elicit their views concerning communication and swallowing changes in Parkinson's disease and the support they envisage in helping with these changes.
Methods & Procedures: A national survey utilizing a questionnaire developed for the project, accessible by people with Parkinson's disease in web-based, e-mail or paper forms.
Outcomes & Results: A total of 168 people with Parkinson's disease (median = 7 years since diagnosis, range = 0.5–30) and 47 carers who provided their impression of the experience of the PwPD responded. Of these 215, 92 (43%) had no contact with SLT services. In general those who had seen an SLT found it a positive experience. Pointers for improvement centred around timing, intensity, duration and access to SLT as well as issues around transfer and maintenance of gains outside of clinic and (lack of) attention to psychosocial dimensions. Availability of ongoing support as the situation evolved and access to SLT when it was needed were two prominent features desired of a responsive service.
Conclusions & Implications: Responses suggest that when SLT is available it offers positive support, but respondents felt (re)access when and where SLT is needed could improve, as well as what aspects of swallowing and communication were addressed in assessment and therapy. We reflect on possible recommendations to address the challenges for SLT services in considering organization and content of provision.
Acknowledgements
The authors gratefully acknowledge the expert help of the late Malcolm Noble and Doreen Carse. Many thanks are extended to everyone who completed the questionnaires and shared their experiences and views. This project was supported by a grant G0615 from the Parkinson's Disease Society (PDS). The PDS played no part in the design, analysis or interpretation of the work. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.