The benefits of care
In the final part of her series on her personal experience of social care, Victoria Brignell explore
Recently I read an uplifting account of the close bond between an elderly couple and their young carer. Being Jewish, the couple originally came to Britain in the 1930s to escape Nazi Germany. Two years ago, an agency sent them a carer who was from Poland. By chance, the husband had learnt some Polish during childhood holidays spent with relatives in Eastern Europe.
Hearing his carer speak her native language has inspired the husband to remember some of the Polish he picked up from his family when he was growing up. Knowing that she is with a couple who understand her language has also stopped the carer feeling homesick and helped her to settle in this country. Thanks to this shared linguistic and cultural heritage, a special relationship has developed between the couple and their carer. For this couple, needing care has brought them a new friendship with a young person they otherwise would never have met.
While relying on other people for help can be hard, I too believe there are a number of positive aspects to needing care. Employing PAs (a common term these days for carers) has given me the chance to meet people from all over the world. Whenever I advertise for a new PA, more than 80 per cent of the applicants are born overseas.
Over the years I've had PAs from a wide variety of countries including Australia, Jamaica, Guyana, Brazil, New Zealand, Zambia, South Africa, Germany, Canada and the USA. And that's not including the temporary carers who have covered for my regular PAs when they are on holiday or sick leave. At times my home has resembled a branch of the United Nations. It's wonderful to be able to learn at first hand about other cultures without even having to step outside my front door.
My contact with PAs has helped me to appreciate the diversity of human beings. I once had a PA who had some form of mental illness. There were aspects of her behaviour which were rather strange and in the first months she was with me I found her habits disconcerting. Gradually, though, I learnt to overlook them. The important point was that she was a caring person and did the job satisfactorily. The time I spent with her increased my understanding of mental health problems considerably.
I've also learnt from my PAs how to be less worried about possessions. Two instances come to mind. The first concerns attitudes towards books. I've always regarded books as precious objects. My parents used to be teachers and I had the pleasure of growing up in a household surrounded by books. To me a book is a reservoir of knowledge, a treasure house of people's ideas, and for that reason they should be treated with care and respect. I would never dream of damaging a book anymore than I would dream of hurting a human being.
Imagine my shock then when I discovered a few years ago that a PA had torn a page out of one of my books. To be fair to my PA, it wasn't exactly a valuable or rare book. We're not talking about the Lindisfarne Bible or the Book of Kells. I had merely lent her my A-Z. Nevertheless, I still expected it to be returned in one piece. Instead I was startled to find that she had torn out a page (presumably because she couldn't be bothered to carry the whole book with her) and then tucked it back in again when she had finished with it. For a while I thought about raising the issue with her but eventually I decided against it. I came to the conclusion that it wasn't worth damaging our relationship for the sake of a book I could easily replace.
A few years later my attitude towards material goods faced a greater test. Most of my PAs leave their mark in an emotional sense, but one former PA left a mark literally. While doing the ironing, she made the mistake of dropping the hot iron. As a result, I now have an iron-shaped burn mark on my living room carpet. When I first saw it, I must admit I was horrified. It looked so large and ugly. Of course, there's nothing you can do to mend a burn mark and its presence seemed to taunt me, emphasising my powerlessness. I could feel a huge desire welling up inside me to criticise my PA for being so clumsy. However, with an effort I managed to suppress my annoyance and I'm glad I did. It would have been unfair of me to complain. We all make mistakes. My PA was a very caring person and she was clearly as upset about what had happened as I was. I told her not to worry about it. After all, it's better that a carpet gets burnt than a human being.
I can certainly say that working with PAs has aided my personal development. It has forced me to be less shy and more assertive. What's more, there was a time when needing PAs spurred me to overcome an odd foible I used to have. Throughout my childhood I had an intense dislike of telephones. Even during my secondary school years I would avoid using them as much as possible. But when I reached university I had no choice but to use the telephone to ring my notetakers to organise their rota. I can therefore thank my disability and my PAs for forcing me to overcome my telephone phobia. Nowadays I wouldn't be able to do my job if I couldn't use the phone.
My experience of employing PAs has helped me to develop management skills. I've learnt how important it is to communicate with your colleagues, how it benefits both you and your "staff" if you take their concerns and ideas seriously, and how necessary it is to treat all PAs equally. I've learnt how a manager needs to tailor his or her approach according to the psychology of the individual they are dealing with, how increasing people's morale tends to improve the quality of their work, and how much people appreciate praise and recognition for good performance. I've also learnt how most people are more likely to improve if you make your expectations clear and give them constructive advice rather than if you criticise them, which will only alienate them and undermine their confidence.
In practice, this means I try to hold regular private meetings with each of my PAs to give them a chance to raise any worries or concerns they might have and to enable me to give them formal feedback. I try to give them as much advance notice as possible of any changes that might affect them. I try to make sure that the workload is divided fairly between my PAs and that I take reasonable steps to ensure their health and safety. And if they make a mistake, I try to make them aware of it in a tactful way that doesn't upset them. I'm very aware that I sometimes fail to meet these standards. For example, I was dismayed a few weeks ago when I realised that I had forgotten to tell two of my PAs that I had a school governors meeting coming up. But during the last 16 years I know I have improved as a manager.
The best aspect of needing care is that you encounter the most attractive side of human nature. Over the years I've been helped by some incredibly kind, conscientious and diligent people, who have often gone out of their way to support me and enable me to accomplish what I want to do. Numerous examples come to mind but I will mention just a few.
My work PAs have sometimes stayed late in the office to enable me to meet deadlines or have started earlier than normal to fit in with the needs of my job. Recently one of my work PAs cancelled two days of annual leave because my other work PA was off sick and she knew it would be very difficult for me to manage with two agency carers at the same time. Meanwhile my home PAs are often willing to work extra hours to provide cover when one of them is away (thus saving me the stress of having to use an agency carer who might be a complete stranger to me). They have never complained when I go to the theatre in the evenings, even though this means they will get to bed later themselves.
PAs have often brought me back beautiful souvenirs from their holidays or given me very thoughtful Christmas and birthday presents. At university a PA gave me the autobiography of John Hockenberry, a paraplegic American foreign affairs correspondent. She knew I was interested in becoming a journalist and she wanted to encourage me in my career choice. This book certainly helped to convince me that I wasn't being totally unrealistic in expecting to be able to work as a journalist while also being a wheelchair user.
One of my PAs, knowing my interest in Doctor Who, bought me a Dalek which now has pride of place in my bathroom. (It's not a full-size one, I hasten to add). Another PA once presented me with a bag I had expressed a liking for in a museum gift shop that we visited together. Last year, when I was unwell, a PA gave me a CD of classical music that she had taken the time and trouble to compile herself, while I once had a PA who regularly bought flowers to decorate my living room.
Perhaps the most bizarre example of carers going beyond the call of duty occurred when I was at university. At that time I lived in a charity-run care home for disabled students which only employed one carer after 11pm. However, I need the help of two people to get to bed. The evening before one of my Finals exams I was desperate to do some extra revision and I needed to stay up late. Two of the carers who were off duty found out about my predicament and kindly offered to help me when they returned from the pub. And so it happened that, shortly after midnight, two carers who would definitely have failed a breath test put me to bed. It made the process rather entertaining, to say the least. I felt like I was in the middle of a sitcom. By chance, the topic I revised that evening came up in the exam the next day. If those two carers hadn't been so altruistic, I wouldn't have done so well in that exam. I owe them a great deal.
During my life I've experienced many similar acts of kindness from my carers. However, there is one drawback to having high-quality PAs. I spend much of my time feeling guilty. I would love to be able to pay my PAs more than I do. Being a PA, particularly a PA for someone with a spinal injury, is a skilled and difficult job. It's not glamorous, there are hardly any perks and the shifts for a live-in PA can be long. Good PAs deserve a much higher wage than they currently receive. Sadly, I'm restricted in what I can pay by the level of my care funding from the state. It's frustrating. In my opinion, my PAs are worth just as much to society as the bankers and stockbrokers who will be receiving huge bonuses this year.
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 runs 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.