Friday 6 September 2019

Going to hospital

is apparently at least, if not more, stressful than moving to a different country. It is apparently far more stressful than buying a house or changing your job.
 There was research reported in the paper recently talking about this

I am occasionally asked to help people with severe communication disabilities in medical situations. I don't have permission of any particular person to talk about a specific situation but imagine being rushed to hospital and not being able to talk to anyone. Imagine there not being anyone who spoke your language. Or, and this is surely worse in some ways, understanding the language but not having the physical capacity to respond.

I was conscious of the need to be able to communicate and the inability to do so at around age 14. I belonged to the Girl Guides and I went off to a camp for physically disabled children. It was a ten day camp, under canvas. There were some very severely disabled children there, including several who had no way of communicating using speech and several more with very severe speech defects.  Something like that would probably not be allowed to happen now but people were prepared to take risks back then and it is something that some of those children, now adults, still talk about. We Guides had the responsibility for one child each but we took an interest in other children as well. It was essential if we were to give them the help they needed.
And somehow I found myself talking to children who could not talk and finding out how, at very least, they indicated "yes" and "no". I am not sure how or why but I found people coming to me and saying, "We can't work out what's wrong with X... can you come and see if you can."
It was an enormous challenge for a fourteen year old who was, quite suddenly, discovering and enormous amount about herself as well. I didn't say anything about it at home. My mother had been strongly opposed to me even going to the camp. It was the Senior Cat who had said, "Of course she's going to go. It will be a learning experience." Learning experience? It was like climbing K9 up the hardest possible route. 
The hardest face I climbed on the mountain was that of learning to ask questions for which just "yes" or "no" could be the answer. I don't know how well I did - perhaps just a little better than most of the other Guides but that is all. I learned how extremely frustrating it is if you can't get across the simplest request, if you can't tell someone you don't want the blue t-shirt because there are prickles in it from rolling in the grass. (Yes, that happened - I worked it out eventually but it took more questions than it should.) It must be terrifying not to be able to tell people not just what you want to tell them but what you need to tell them.
I went to camp for some years. I managed to learn more each year. Sometimes I would be woken in the  middle of the night to go and try and sort a problem out. I acquired the capacity to finger spell the alphabet and to use some signs (and used them later in another setting). 
And I went on to work with children who had profound communication disabilities. Some of them are now adults. They still need help. One of them was in hospital recently and I went in to see her. She has a new communication device but there were problems with it. She was feeling lonely and frightened. Her sister had asked if I could take in an "old" communication board - literally a board with words and symbols that she is, fortunately, able to point to. I told one of the busy staff what I had done. I was worried, as always, that they would say they had no time to use it.
This time though the reaction was different.
    "That might save us time."
Yes, it did.
   Would I also ask the staff not to give her the "orange juice"? She had to drink a lot but that reminded her of school! Plain water was just fine.  They were happy with that.
Most importantly of all she could mourn the death of our mutual friend and tell me that she was. She went home this afternoon. Her sister left me a message saying she is much happier. 
Hospital is stressful for everyone but add a lack of ability to communicate easily and it is like moving to a strange country where you don't know the customs and can't speak the language...and that is simply terrifying.

1 comment:

Jodiebodie said...

"It might save us time" It is frustrating for disabled people when decisions about them, such as whether to use a communication board (or other communication devices) are framed around the convenience of able bodied people instead of the personal needs and human rights of the people with disabilities.
This happens too often on a daily basis.

To deny access to a communication device when the patient would otherwise be able to use it is a form of institutional neglect in my opinion. It is disappointing to hear that the convenience of staff is still a major factor in such decisions.

Being able to communicate effectively, especially when one is in a vulnerable situation such as interacting with the health or justice systems, is surely a vital necessity and not merely a convenience?

Systemic understanding of the latest buzzwords 'patient-centred', 'person-centred' and 'client-centred' has a long way to go in this country in order to put the concepts into practice.

I'm glad your friend survived the hospital stay and that she was able to use her assistive tech.