View Full Version : Do you use a communication aid? Do you know someone who does?

Robyn Copley-Hirst
9th August 2012, 13:37
Communication Matters, the national charity for augmentative and alternative communication (AAC) in the UK, is asking people with a severe communication difficulty who use an electronic communication aid and their communication partners to complete an online survey.

They would also like to hear from people who have used an aid in the past or who plan to use an aid in future. (Examples of electronic communication aids are: Lightwriter, Dynavox, IPAD mobile devices or computers with communication software). The survey is part of the AAC Evidence Base research project funded by the Big Lottery Fund.

The researchers from the University of Sheffield want to find out about your experience of using an electronic communication aid and the services and support you’ve received. They also want to hear from family members and carers of people who use electronic communication aids.

The full details of how to take part can be found on our website here (http://www.mndassociation.org/research/MND%20research%20and%20you/Get%20involved%20in%20research/Communication%20Matters)

10th August 2012, 16:05
Robyn is this likely to improve and speed up the supply of eyegaze equipment to MND sufferers?

Robyn Copley-Hirst
14th August 2012, 09:44
Hi Rachel,

I'm chasing up what the stated aims of this research are, or if it depends on what the collected evidence points to. I'll be back with you as soon as I hear anything further on it for you.


Jo Burkimsher
14th August 2012, 13:39
Hi all, I am interested in learning about eyegaze technology. Someone I know has made preliminary investigations but has been told it starts at around £7000. Does anyone know who might fund such equipment? Would it be a combination of bodies perhaps?

14th August 2012, 15:01
Hi all, I am interested in learning about eyegaze technology. Someone I know has made preliminary investigations but has been told it starts at around £7000. Does anyone know who might fund such equipment? Would it be a combination of bodies perhaps?

Hi Jo,

Pretty sure Sarah EZ is about the only one i know ,uses that or one similar .


15th August 2012, 01:07

The speech therapist is trying to obtain funding for an eyegazer for my wife. My impression is that they have very little money for it. They are asking for funding from various charity organisation including MNDA. The eyegazer provider is http://www.smartboxat.com


Robyn Copley-Hirst
17th August 2012, 10:34
Hi Rachel,

We've put together a clarification on the aims of the research for you. I hope this answers your question


__________________________________________________ _____________________________

To answer your question about whether the Augmentative and Alternative Communication (AAC) study will improve the availability of eye gaze systems, we sought the opinions of Karen Pearce, the MND Association’s Director of Care and Dr Alex John, who is leading the Communication Matters AAC research project.

Karen Pearce commented that “The AAC study is part of a piece of work undertaken by Communication Matters. It is aimed at identifying such things as what types of AAC are used, how easy they were to access and how they were funded. This will give a picture of the need, and the types of systems used as well as how they are paid for. This will provide evidence to link in with the work already underway that is raising the profile of AAC for adults, which includes people with MND.”

“The progressing needs around access for people with MND highlight how important it is that a specialist assessment takes place so the appropriate software and hardware is provided that would be compatible with eye gaze type systems if appropriate. The study will support lobbying for appropriate funding for AAC, which would include eye gaze type systems which we anticipate would be assessed for by specialists through the Regional Assessment Centres.”

Dr Alex John continued “We hope that by collecting information on what is currently used and what the need is, and making this information available, that this will inform the decision makers who decide on policy for provision and funding.”

“The project is gathering information on prevalence, on provision of communication aids across the UK and this part of the study is aiming to get the views of people who need or use electronic communication aids. This will help us give voice to their needs. If those people with MND are telling us that eye gaze provision needs to be improved and supply speeded up, then we can report that in our study findings.”

We hope that this has helped to answer your question.

24th August 2012, 11:11
Thanks Roybn

The people doing the study are certainly making all the right noises.

Jo Burkimsher
29th August 2012, 20:43
thank you Pete, yes Sarah Ez does use this I believe. It's not obtaining one that difficult, it is paying for the darn thing :((

Jo Burkimsher
29th August 2012, 20:44
Thanks Daniel, there is certainly very little money about. Hope your wife gets lucky. Will keep my fingers crossed.

18th September 2012, 10:17
JayBee have a cummunication aid that you can do with just your eye. Just type in JayBee and you will have all there.


30th June 2013, 20:20
i personally wouldnt reccomend the eyegaze. chris had nothing but trouble with it from start to finish. it would hardly ever callibrate his 9 year old daughter was always worried because her daddy never txt her back because he cdnt. the amount of times he got upset because it would just stop working is unreal. i could write here forever with the problems but the main one was in the last 2 weeks of his life chris couldnt tell us his wishes fears etc because it wouldnt work. The week befor he passed away i asked him to go on the eyegaze to send msgs etc to people and he point blanc refused and said im frightened to go on it because it will destroy me iff it dosnt work. his mum cashed in her nhs pension what took her 40 years to gain just for the gaze so you can imagine we all feel very let down by it. can i just add chris was very talented when it came to gadgets he could build a pc from scratch with his eyes closed he made websites blogs etc but getting the eyegaze to say i need to toilet or a drink etc was impossible. sorry for the rant

1st July 2013, 15:43
It is good to have people’s opinions, especially on communication. I think Jeannie uses eye glaze and likes it.
When working properly, I think that there is nothing that compares with that type of system, switch operating systems are so slow. However, this disease is so frustrating so we do not need anything that would add to that.
Regards Terry

1st July 2013, 19:27
Hey Roy - are you still sending smoke signals mate ? !

2nd July 2013, 08:58

bakeit Forum