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Research informs the development of national resources to improve the management of dysphagia in people with learning disabilities

Research carried out by the Community Learning Disability teams at Central Manchester University Hospitals NHS Foundation Trust (CMFT) has informed the development of new resources published by Public Health England, to improve the management of dysphagia in people with learning disabilities.

Dysphagia is difficultly eating, drinking or swallowing and affects oral, pharyngeal and/or oesophageal stages of the swallow. It can lead to serious health problems including aspiration pneumonia, asphyxia, dehydration and poor nutritional status. Around 1 in 10 people with learning disabilities have the condition.1

The series of interlinked studies explored the prevalence of dysphagia in adults with learning disabilities; the characteristics and conditions associated with dysphagia and carer knowledge of and adherence to dysphagia management strategies.

Dysphagia community research for website story

Jane Jolliffe, Health Service Manager, Professional Lead Speech and Language Therapy and Clinical Effectiveness Coordinator for the Learning Disability Service at CMFT carried out the research alongside Professor Juliet Goldbart, Associate Dean and Research Institute Director, Manchester Metropolitan University (MMU) and Dr  Darren Chadwick, Reader in Applied Psychology, University of Wolverhampton (formerly Research Fellow at MMU).

Jane said: "We were aware that many people with learning disabilities supported by the Community Learning Disability teams had dysphagia. Service users were often describes as having 'eating and drinking difficulties' rather than the medical condition 'dysphagia' and this appeared to affect the way the condition was treated.  However there was limited evidence to inform practice.

"We wanted to document the range and severity of dysphagia in adults with learning disabilities and to improve their quality of life.  We also wanted to understand carers' perspectives about the condition and evaluate the advice and support given by speech and language therapists."

Through the studies, support for people with learning disabilities has improved and now includes a detailed observational assessment leading to a person-centred risk assessment and management plan alongside health education, for clients and carers around specific risk reduction strategies (for example, altered consistency, better positioning and changes in utensils).

Jane added: "Anecdotally, we and our physiotherapy colleagues feel that hospital admissions due to dysphagia related conditions have reduced and the research has raised professionals' and clients' awareness of dysphagia in adults with learning disabilities.  The research has provided evidence for the need to expand dysphagia support for people with learning disabilities and has helped us design our dysphagia programme of care."

More widely, the research has informed the development of new resources to improve the management of dysphagia in people with learning disabilities published by Public Health England.  Visit the website to see the factsheets, review of evidence and examples of reasonable adjustments that can be made by services.