Talking to people with complex communication needs

Last Friday was a great day for me. I was exhausted, fed up and not looking forward to a long drive to see a patient for what looked like a really complex assessment.

When I got to the appointment I met a young woman with Cerebral Palsy who has very complex communication needs. She used a low tech coded eye pointing AAC system with her personal assistant to communicate with me during the appointment. I wont bore you with the details but we chatted away and, in collaboration with the equipment rep, came to a decision about how to move forwards.

At the end of the assessment the pateint thanked me for holding the conversation directly with her and not with the PA. She explained how degraded and angry she felt when interacting (or not) with other people and in particular health professionals.

I later had a converstaion with another patient, her communication aid had broken down. As you would expect, her communication difficulties meant conveying this problem to the people who needed to know to fix it was a real challenge. The really sad part was that her sister had recently died and throughout the last days of her sisters life she had experienced a constant battle with health care staff trying to contact her to update her on her sisters condition but being thrown completey by her significantly dysarthric speech. The callers had had differing responses ranging from shouting on the phone, asking if they could call her carer and even hanging up.

She asked me how our service educated other health professionals about how to talk with people with communication difficulties. The challenge is that as a regional service we dont have that day to day contact with local teams to be able to convey this information as we might like. This continues to be source of frustartion for me so I urge anyoen reading this to take the time to take a look at the excellent leaflet from Communication Matters to get more information. The feel good factor was that, despite her speech disorder we were able to chat, to get to the bottom of the problem she called about and I was motivated to publish this post.