Good news!
The NHS finally agreed to fund Imogen's communication aid!
The money that has been raised so far will be used for an add-on, an "eye-gaze" system which means that Imogen will not have to use her hands but can instead control the system by moving her eyes. As it is already hard for her to use her hands and this will only worsen, the eye-gaze add-on will one day be essential. More information coming soon!
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Imogen is a 26 year old woman with a progressive illness similar to muscular dystrophy. Following emergency surgery in July 2009, she has lost the ability to speak.
Imogen lives on her own (with 24 hour care) in a village which is a 50 minute bus ride away from Cambridge. She is a vibrant, outgoing young woman who is in the final year of a photography degree.
Her loss of speech has been devastating as she relies on it...
To keep in touch with friends and family by phone, so she is not alone
To give instructions to her care assistants
To participate in class and other situations at university
To convey essential information to her medical specialists, particularly in emergency or crisis situations (which occur every month or so)
Out and about everyday - shopping, ordering a taxi, meeting friends
The NHS's response to Imogen's loss of speech was to offer her a laminated piece of paper with the alphabet printed on it!
An alphabet card is useless - firstly it takes a lot of effort for Imogen to spell out words by pointing to every individual letter, and secondly she is dyslexic so her spelling is hard to understand anyway! Plus of course you cannot use an alphabet card over the phone.
Imogen's Speech and Language Therapist (SALT) has been very supportive but the NHS simply does not have the funding to provide communication aids for adults. In fact her SALT did manage to find an old electronic device, however it had a very basic interface and was physically difficult for Imogen to use as it required her to hold a stylus. In any case, this device broke after just a few days of use (after completing the video below), leaving Imogen with the alphabet card again.
The hardware that Imogen really needs - which she has used effectively for a month-long trial, the orange unit in the video below - is the Liberator Eco2 (link). However, this unit costs £7000 which is far beyond her means. She has had to return the trial unit and now feels very vulnerable and isolated as she can no longer communicate adequately, let alone effectively.
Ideally Imogen needs the Liberator with an Eye-gaze system - so her eye movement can control a mouse pointer - but this costs £11000. As she really needs to get communicating urgently, in the first instance she is trying to raise £7000 for the basic unit, which is what the totaliser represents
alternatives?
Other methods of communication have been explored - for example, although Imogen cannot make very accurate shapes with her hand, she is learning British Sign Language. However, this is no use on the telephone, and while it might be useful in a hospital to convey basic concepts it will never be a solution for Imogen to express herself fully - and in most situations there will not be an interpreter available.
As Imogen finds it hard to use her hands, writing things down is also not an option. Email is usually possible to some degree, but this does not work face to face (and you can't take a laptop out and about, because of limited battery life, durability issues and lack of waterproofing). Also, email is no substitute for using the phone e.g. to call a taxi or just to hear a friendly voice. Most importantly, when Imogen has a medical crisis she is too ill to type.
If you prefer to know which funding alternatives have been considered, please click here for more information.
Please help Imogen to raise the money for a communication aid which can return her quality of life
This could be by...
Making a donation
Raising money through sponsorship (for example, a sponsored silence, with only an alphabet card to help you!)
Spreading the word - tell your friends and anyone you think might be able to help
Tweet or blog about Imogen's appeal - please link to this website, and use the tag #Imogen on Twitter
Whatever you can do to help will be very greatly appreciated.
How to donate
Preferred methods
You can pay directly into Imogen's savings account with the Cambridge Building Society: Sort code 20-17-22, Account number 40338346. You must use reference 1711887030. If you do this, please email funds@imogenmay.com to let her know!
Or, if you have a Paypal account, you can simply transfer the money as a gift - please send it to funds@imogenmay.com - no fee is taken by Paypal for transfers between accounts with them, so 100% of your donation will be received.
If you have a choice, bank transfer to Imogen's savings account is preferable.
Easiest method
You can make a donation online by credit or debit card - simply click on the button below.
(Assuming you do not have an account with Paypal, they will take a 3.4% fee from your donation, plus 20p.)
However you choose to help - thank you!
If you would prefer not to be listed on the supporters page, just add a comment when you make a donation, or tell the webmaster at webmaster@wdam.co.uk.
Any questions?
You can contact Imogen directly via funds@imogenmay.com.
