The gentleman in question had a progressive non-malignant neurological condition resulting in symptoms of dysarthria and poor hand dexterity. During a routine inpatient occupational therapy review, it was evident that these effects had worsened, with the result that he was struggling to make his needs known either verbally or via his usual route of accessing his computer.
The hospice team knew him well and partially overcame these problems by using gestures and rudimentary non-technical communication charts. He was referred to speech and language therapy and given information on purchasing an adapted keyboard.
Before being discharged, the patient donated £1,000 to the hospice to contribute towards its acquisition of a more technical communication system for use in the inpatient unit and day hospices.
This one patient helped us identify a gap in our resource that desperately needed to be filled, particularly in the light of our increasing non-malignant patient caseload. The hospice team saw bridging this gap as a priority and a hunt for the right assistive technology system began in earnest.
The system
Finding the right system involved close cross-departmental working between the therapy and information technology teams, as well as collaborative working with our community speech and language therapy colleagues. These various professionals undertook research to find a system that was versatile, portable, user friendly, easily upgradable and cost effective. Committed multi-team working was therefore another positive outcome of this process.
The hospice trialled an integrated eye gaze system called the Tobii C12 with associated Grid 2 sensory software. The software enables patients to access a variety of communication grids with varying layouts and cell sizes. The numerous grid options can be opened via eye gaze, joystick or switch type access dependent on the patient’s level of ability. The programmes range from simple symbols/photographs to more complex letter and word charts. Hence it is anticipated that all patients with a neurological condition will be able to use it on some level.
Once the appropriate access route and grid have been found, a patient profile can be set up for the staff to consistently use whenever the patient is at the hospice for inpatient or day care.
The pilot
The system was set up for a one-week trial with another hospice patient. This patient had significant dysarthria and no functional movement in his limbs, meaning interactions had become increasingly onerous and frustrating; at times staff reported feeling helpless. A planned respite week presented us with the ideal opportunity for both the patient and the clinical staff to learn how to use the system, and give the therapy team and IT team much needed feedback.
Even for this short period of time, this patient was able to successfully use the system. He began forming whole sentences using only his eyes and was able to ask for things such as a cup of coffee. He was also able to experiment with the system while alone to find out what else it could do. It gave him back physical control over something external, a feeling he had not experienced for some time.
The patient, his wife and all the hospice staff involved in the pilot were extremely positive about the system, and it was very apparent that more patients could benefit from this technology.
The future
Following the trial, a successful funding bid via one of our major donors enabled the hospice to purchase an integrated tablet and software for the inpatient ward and an alternative, less portable version for use in the day hospice. We also secured funding for formal training of hospice staff in the use and application of technical communication aids and computer systems.
Once the units are fully integrated into the hospice services, we will meet again with the community speech and language therapy teams to look at how our community patients can access assistive technology.
Sadly, the gentleman whose kindness started this project died before the trial phase. We have kept in touch with his wife who was thrilled that her husband’s generosity and foresight had resulted in such an inspirational project designed to help others. When asked how he would have felt about it she commented simply that he would have been “over the moon.”
For further information on the project, contact Barbara at barbarabiggerstaff@stch.org.uk
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