Locked in syndrome

1. Think of a recent therapy session or event.

I assessed a patient who had locked in syndrome (quadriplegic, with bilateral vocal fold palsy. Some movement in his right index finger and thumb. All due to multiple brainstem and cerebellar infarcts). I called his previous hospital for a handover and contacted therapists at the specialist AAC centre in Putney for advice on his access to communication.

2. Describe the session/experience

The patient had been extensively assessed throughout his time in hospital, so I made sure to get a detailed handover. I have little experience using AAC so I contacted specialists in Putney. They advised that I look at the following: a) Consistent yes/no response, b) cognition, c) What movements can he do consistently, d) comprehension, e) cranial nerves. They also advised that I keep a diary for the patient so that his family and staff can record his behaviours and note down what he does in his day, for use in SLT e.g. did you… how was physio … It was advised that I create clear communication guidelines for the patient and assess for a baseline. The therapists recommended using an AEIOU alphabet chart.

During my session I 1) asked the patient 1-2 stage instructions, 2) explained my role and the information I had on him 3) Trialled use of the alphabet chart. The patient was consistent with head nodding/ shaking for a yes/ no response. It was effortful for both of us to use the alphabet chart. I followed advice from Putney and modelled spelling out items using the alphabet chart. The patient engaged with this.

3. What did this session make you feel?

I felt exhausted from concentrating on the patients communication attempts (mouthing, breathy speech, jerky body movements, head nodding/shaking, alphabet chart use). I felt that by keeping assessment functional e.g. giving instructions relating to an oro-motor exam and asking about pain/ comfort the patient stayed engaged in my session. It was reported that he quickly became disengaged in communication sessions due to the effort fullness of communication.

4. What would you want to change, and why?

I would ideally have talked to the patient’s family to ask them for some yes/no questions that are engaging for the patient. I would also have done a joint session with the OT around what movements may be harnessed for AAC use.

5. What has this session has taught you?

Look for a consistent yes/ no responses, think about low tech accessible forms of AAC, continue to empathise with patients and explain the goals of my assessments in order to motivate them for assessment.

6. What do you need to learn or find out before the next event?

More information about AAC and communication with locked- in patients.

Putney advice

·      Use errorless learning when teaching AAC use e.g. with the AEIOU alphabet chart. E.g. we are going to spell tree…

·      Patients normally pick up alphabet chart use if they have no cognitive impairments – it may be a sign of impairment if they have ++ difficulties.

·      Have joint sessions with OT’s re – big mac or switch use.

·      Start with a nurse call – big mac = good prep for Phigh tech AAC since switch use is a pre-requisite for eye gaze etc..

·      Make sure Yes/ no is reliable + staff consistently ask for the same response.

·      Using a diary is a good way to engage with family members/ find material for communication sessions.

·      What commands can they follow?

·      Establish a clear baseline.

A	B	C	D
E	F	G	H
I	J	K	L	M	N
O	P	Q	R	S	T
U	V	W	X	Y	Z

Guidelines for using the AEIOU alphabet board

Purpose

To help John communicate information that he is unable to convey using mouthing, body language, eye pointing and head nodding/ shaking. The alphabet is split into rows so that communication partners don’t need to read out the whole alphabet. The letters are in alphabetical order making communication quicker and thereby reducing the burden on Johns’ sight.

How to use the alphabet board

1.    Ask John to think of the first letter of the word he wishes to spell and to look at the row this letter is in.

2.    Confirm the row as either A, E, I, O or U, looking for a head nod on the correct row.

3.    Ask John to nod when you say the correct letter, and then proceed to read out the letters in the row.

4.    Write down the letters John chooses and confirm his responses.

Communication method	YES	NO
Head	Nod	Shake
Thumb/ finger	Moves up/out	Moves down/in
	Eyes looks up Eyes Look to one side  Look to a YES card	Eyes looks down Look to the other side Look to a NO card
Blinks	One long blink	Two short blinks
Eyebrows	Raised	Lowered
Switch	Pressed once	Pressed twice

Aim for the most natural method, the clearest and the easiest to perform. + that everyone uses the same method. If the patient is well supported and comfortable they are more likely to be able to make a consistent response.