Invitation to Help with Research on Eating and Drinking Sussex NHS — Scope | Disability forum
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Invitation to Help with Research on Eating and Drinking Sussex NHS

Richard_Scope
Richard_Scope Posts: 3,614 Scope online community team

Testing out EDACS as a self-advocacy tool for adults with CP

 Can you help us?


We are conducting a research study to see whether a rating scale for eating and drinking ability, already being used with children, might be a useful tool for adults with CP. The idea is for people to use it when talking to doctors, speech and language therapists or care funders. If eating and drinking difficulties are of a certain level, it can alert medical people to the need to monitor chest health and nutrition. Likewise – it might help explain to social or healthcare funding agencies why you need a certain level of funding for support at mealtimes.

The rating scale includes a description of what eating and drinking are like at each level, using day-to-day language (the pictures above only contain the main strapline). People have said that EDACS would help them explain to other people what they are experiencing when eating and drinking– it would give them the words and the language to talk about it.

In order to advocate for EDACS as a tool to be used by people with CP themselves (rather than only being used by healthcare professionals) it will help if we can show how reliable people’s ratings are.

 That is why we are trying to contact people with CP – to see if they would be happy to rate themselves and ask a person who knows them really well to also rate them.

If you think this is something you’d be interested in helping with, please do get in touch with [email protected] & [email protected]

Thank you!

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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