What is the key to a successful working relationship between a disabled person and his or her personal assistant (carer)? Certainly there needs to be thoughtfulness and consideration on both sides. But what is also important is good communication skills. For my life to run smoothly, I need to give my PA clear directions and my PA needs to have the capability to follow them.
However, this can be a sensitive issue. Some PAs want me to give them very precise instructions over how to carry out a task whereas others become annoyed if you give them too much direction because they interpret this as you underestimating their intelligence. Some PAs like to undertake routine tasks without any reminders from me whereas others will not carry out a task until you prompt them. There is no right or wrong approach but when you work with four different PAs in a day it can be difficult to keep track of which method you are supposed to be using. You can find yourself giving too much direction to one PA and too little direction to another.
Completing a task normally takes me longer than it would do if I were able-bodied. For most people, a task has only two stages - you decide what needs to be done and then you carry out your decision. But for me there are up to four additional stages. After deciding what needs to be done, I have to work out the best way of describing this to my PA. This will vary according to the level of expertise and experience of the PA who happens to be with me at the time. I then have to say the direction to my PA. She might then ask me to clarify what I'm aiming for or want extra directions. Only at that point will the task actually be carried out. And sometimes I might need to amend what the PA does, depending on how she carries out the task.
What can complicate matters is that occasionally my PAs have difficulty hearing what I'm saying. I have weak lungs and a tendency to mutter my words. If we are in a noisy environment or my PA is behind me, this will exacerbate the problem. If a PA mishears me, it can have unfortunate consequences. One evening, a PA arrived an hour late because she thought I had asked her to meet me at 9.30pm, not 8.30pm. And I remember an occasion in the middle of winter a few months ago when I said to a PA, "Please can you make sure you switch the heating on before you leave the flat". Unfortunately, she thought I said "off", not "on", so when we reached home later that evening, the flat was freezing.
The worst aspect of the situation is that it's not always obvious to me when people have heard me or not. Experience has taught me that if I make a request and a PA doesn't carry it out straight away, the most likely explanation is that she hasn't heard me and so I automatically repeat what I've said. However, if she has heard me the first time, she may interpret my repetition as me nagging her. This will upset both of us as the last thing I want to do is to seem impatient. The easiest PAs to work with are those who give an acknowledgement of some kind when I make a request and tell me if they need to delay performing a task. Fortunately, after a PA has been with me a while, they can reach the stage where they can sometimes predict what I'm likely to ask before I open my mouth.
When my regular PAs are on holiday or sick, I often have to turn to care agencies for cover. A large proportion of care workers in London come from overseas and English is their second or third language. Sometimes this can make it difficult for them to follow my verbal directions. Many of them are fluent in English but not all of them. Even when they understand English, the difference in accent between us can be a barrier.
Earlier this year I came across an agency carer from abroad who didn't understand the words "knees" and "commode" - words which you would expect any carer to comprehend. On another occasion I was helped by an agency carer who didn't know "blue" and "black", which was rather unfortunate because I have a blue bag and a black bag. When I wanted her to find something in the former, she spent ages looking in the latter.
Communication would be considerably simpler if I had the ability to point. Recently I was dictating some text to an agency carer who was typing it up for me. Soon it transpired she didn't know what apostrophes, hyphens and commas were. She didn't understand what these pieces of punctuation looked like. I was desperate to point out to her which keys she needed but when you are paralysed from the neck downwards, pointing isn't an option available to you!
What makes the problem more awkward is that people don't always know the difference between left and right. As I can't point, I often used to use the terms left and right to try to explain to a carer where an object was or how to move me, but this proved pointless when carers kept getting their left and right mixed up. These days my policy is to use terms like "move towards the kitchen" or "it's near the bookcase" which hopefully avoid any confusion.
Language differences can be a problem even when your carer's first language is English. I remember at university going to the college dining room with my Canadian PA and asking her to queue up for the food. She stared at me as if I had spoken Swahili. I repeated the request and she still hesitated. Trying hard not to sound frustrated, I explained to her, "You see that line of people over there? Please stand behind the last person in that line and make your way to the counter to collect the food." It turned out she had never heard the expression "queue up" before. Apparently, in Canada, people don't use the phrase "queue up", they say "get in line". Now I know!
However, the ultimate communication test occurred when I was being helped by a carer from Germany. Hoisting me into bed can be done by one PA but only with difficulty. It really needs two people to make it as safe, quick and comfortable as possible. Unfortunately, because of a shortage of funds, the charity-run care home where I lived at university only employed one carer after 11pm. One evening I went out with friends and arrived back at my room in the early hours of the morning. (Although I never had any desire to become drunk or skip lectures, I was determined not to miss out on that other quintessential aspect of being a student - staying up late).
The carer on duty that night was a very understanding and kind young German woman. However, at that stage, she had never used a hoist with me before. And she wasn't entirely fluent in English. And there was no one else around to lend a hand. So I was faced with the task of trying to explain to someone how to hoist me on their own when that person didn't fully understand English and I was also half asleep. It wasn't easy, there was a considerable amount of trial and error involved, but finally, 45 minutes later, I was safely in my bed. In some ways, that was a more forbidding challenge than sitting my finals!
In this series on social care, Victoria gives her personal views on how the system works for her. These are not the views of the BBC.