In the sixth part of her series on social care, Victoria Brignell describes some of her worst experiences with carers
PAs play a crucial role in my life. A high proportion of my time is spent in their company and they carry out the most intimate tasks such as dressing me, washing me and feeding me. I'm not exaggerating when I say that the quality of my life is largely determined by the quality of my PAs. When I have good PAs my life is fantastic. When PAs cause problems, life can become very bleak. I'm probably tempting fate by saying this, but at the moment I am going through a 'golden period' of care. All my current PAs are wonderful. They all have strong skills and warm personalities. However, I've not always been so fortunate. There have been times when I've had some very difficult experiences with PAs.
I once had a live-in PA who never talked to me. She carried out the practical tasks she was meant to do, but her interpersonal skills were non-existent. She didn't seem able or willing to get to know me as a person. We would travel together to my workplace each morning and we would pass the entire journey in complete silence. Whenever I attempted to make conversation I would be met with monosyllabic responses. It was very unnerving. Thankfully she handed in her notice after four months.
Another former live-in PA turned out to be incapable of keeping my home clean. One day my dad happened to call into my flat. He discovered that bags of rubbish had been left hidden in cupboards and behind the settee. How long they had been there I didn't like to guess.
I remember an occasion many years ago when one of my PAs pulled out of a nightshift just a couple of hours before she was due to come on duty. I rang another one of my PAs who agreed to cover for her. She was a kind person and she probably thought she was doing me a favour. The significant fact she failed to mention was that she had spent the evening in the pub. When she arrived it was very obvious that she was drunk and not in a fit state to provide personal care, but by that time it was so late at night there was no way an agency would have found someone to cover. I kept my fingers crossed that I wouldn't need much help before the morning and in particular that I wouldn't need the loo. Sadly, on that occasion, the fates were not on my side. Shortly after midnight I ended up having to cope with an inebriated PA helping me to go to the toilet. I can see the funny side of it now but at the time I didn't feel like laughing. I have to say, it's not an experience I want to repeat.
Recently an American study showed that misery is contagious. If you spend a lot of time with a gloomy person then you are more likely to be fed up yourself. I can back this up. There was a time when I had a live-in PA who was constantly depressed. Most of her conversation was a long list of disasters, problems and illnesses affecting her, her relatives or her friends. I am very sensitive to the moods of the people around me and, although I tried hard to maintain my normal cheerful outlook, eventually I found her negative attitude was affecting me. I would dread the moment when she came on duty at 6pm, knowing that I was likely to have to listen to another long tale of woe. She stayed in the job for only six months but it felt much longer.
Several years ago I had a live-in PA who resigned after only 12 hours in the job and refused to work out her notice. At the end of the first day she claimed that the Underground set off her asthma and that she couldn't live in London any longer. I was prepared to accept her explanation but what upset me greatly was that she wanted to go home straightaway and leave me on my own in my flat. She wasn't even willing to wait for another carer to arrive. With difficulty I managed to persuade her to accompany me back to my parents' house in Essex. (My parents lived in the same town as her). I couldn't believe that any carer would be prepared to abandon me in that way. It took me a while to recover mentally from that experience.
The most upsetting predicament I've encountered concerned a live-in PA who often used to criticise me when I asked for help at night-time. This was despite the fact that providing personal care during the night was a fundamental part of her job description. I found her hostility very hard to handle. I hate asking people to help me when they make it blatantly clear they don't want to do so. I tried talking to her about it and this softened her behaviour for a while but eventually she returned to her former attitude.
I considered dismissing her but I knew how much she needed the money and I was scared as to how she would react if I asked her to leave. If she had walked out straight away I would have had to cope with inexperienced agency staff while I tried to find a new PA. And if she had agreed to work her notice period there would have been an unbearably tense atmosphere in my flat for several weeks. I decided to put up with what was happening but, with hindsight, I realise this came at an emotional cost. Every time she complained about my requests for help, it lowered my self-esteem, knocked my confidence and put me on edge. I was so relieved when she finally left. The next day I felt a tremendous sense of liberation. It was as if a huge weight had been lifted off my shoulders.
Despite these experiences, I count myself as relatively lucky. I know disabled people who have suffered more than I've done. One PA employer I've spoken to was woken up early one morning by police raiding her home. They were looking for her PA in connection with an investigation they were conducting. Another disabled person had his bank cards stolen by his PA. The PA then went travelling around Europe using the disabled person's money. Eventually the police caught the PA and the story made it into the tabloids.
Nevertheless, I would like to emphasise that these PAs are the exceptions. The majority of my PAs have been very caring, conscientious and sensitive. They see me as a person with feelings, rather than simply as the source of their next pay cheque. A number of my PAs have gone on to become friends and we've stayed in touch long after they have finished being one of my PAs.
Now and again occupational therapists tell me there are gadgets which I can use to switch on my TV, draw the curtains or turn the pages of a book. These devices are useful for some disabled people but as I need to have a PA with me anyway I've never seen the point of spending mine or taxpayers' money on them. Frankly, no piece of technology is as quick, accurate, flexible and reliable as a human being.
I've seen robots on television that scientists have programmed to carry out household chores. Personally I doubt whether scientists will ever be able to devise a robot that can replace a PA and frankly I don't want them to. Never underestimate the importance of the human touch. You can't have a laugh and a joke with a robot.
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.
'BBC Radio 4's multi award-winning 'Care in the UK' season returns on Monday November 8th 2010 until Friday December 3rd 2010. Hear from key players in the social care industry, discuss current topics including the future of social care funding and Personalisation, plus the chance to hear from Health Secretary Andrew Lansley and Care Services Minister Paul Burstow.