3 - Allied Health Professions

Enhancing the lives of people with severe and complex disabilities

Through collaboration with education and service providers, guidance has been produced to communicate safer eating and drinking practices for people with severe and complex learning disabilities.

Underpinning Research

Difficulties with eating and drinking (dysphagia) are a real problem for people with learning disabilities.

Dysphagia can affect health, quality of life and, in serious cases, lead to death.

Over 80% of people with profound learning difficulties have communication impairments that merit intervention.

MMU researchers Sue Caton, Darren Chadwick and Juliet Goldbart examined the implementation of guidelines for eating and drinking developed by speech and language therapists and found that recommendations relating to concrete management strategies are easier for carers to follow than support-based strategies such as verbal prompting and pacing.

Whilst guidance relating to the consistency of food and drink was generally followed, other aspects, such as pacing correctly; facilitating people to relax; eating and drinking safe amounts, were not, thus increasing the risk of asphyxiation.

Research also demonstrated how an understanding of the cognitive and social roots of communication can provide assessment and intervention approaches for children and adults with profound disabilities.

Key References

  • Chadwick, D. D., Jolliffe, J., & Goldbart, J. (2003). Adherence to eating and drinking guidelines for adults with intellectual disabilities and dysphagia.  American Journal on Mental Retardation, 108(3), 202-211. DOI:  10.1352/0895-8017(2003)108<0202:ATEADG>2.0.CO;2
  • Samuels, R., Chadwick, D.D. (2006). Predictors of asphyxiation risk in adults with intellectual disabilities and dysphagia. Journal of Intellectual Disability Research, 50(5), 362-370. http://www.ncbi.nlm.nih.gov/pubmed/16629929
  • Coupe-O’Kane, J. & Goldbart, J. (1998). Communication Before Speech, London: Fulton.

Impact

Research on dysphagia management strategies was of considerable interest to the UK National Patient Safety Agency who incorporated the findings into guidance designed to reduce the deaths resulting from eating and drinking difficulties in people with learning disabilities.

The research has informed practice in many trusts including Calderstones Partnership Foundation Trust, who were shortlisted for a National Patient Safety Award in 2013 after following the MMU guidance.

The research informs “Eating well: children and adults with learning disabilities, Nutritional and practical guidelines” provided by The Caroline Walker Trust.

A Royal College of Speech and Language Therapists Special Interest Group on Dysphagia has been established to share the findings and promote best practice through meetings and seminars.

The approaches to assessment and intervention in “Communication before Speech” have informed “Routes for Learning”, a Welsh government initiatives for the education of children with profound disabilities.

"We felt that teachers would find practical guidance soundly based on evidence.  Routes for Learning is not only used in the UK, but has been translated into a number of European Languages.”

Research is cited in many policy documents including the Department for Education’s “Teaching materials for learners with severe, profound and complex learning difficulties”(2010) , RNIB’s “Effective Practice Guide: Becoming a Sensitive Communication partner”, Scope’s, “Supporting Communication through Alternative and Augmentative Communication” and the QCA’s , “Planning, teaching and assessing the curriculum for pupils with learning difficulties”.

MMU also provides underpinning concepts for the Australian “Triple C: Checklist of Communicative Competence”.

Evidence

Mencap’s 2013 “How to” guidance on communication for people with PMLD written by Goldbart and Caton 

MMU research on evidence-based national guidance on safe eating and drinking for children and adults with learning disabilities. 

statement by Beverley Dawkins OBEcorroborating the impact ofMMU research