As a disabled person, I often feel that I have two jobs. There's my normal job working as a radio producer and there's my role managing a team of carers (otherwise called personal assistants). Of the two jobs, being a radio producer is considerably easier. At least radio producers get time off. One of the hardest aspects of being a PA employer and needing 24-hour care is that you never feel "off duty". At any time a PA could present me with an issue or concern that needs tackling.
There was an occasion when a previous PA came into my bedroom one morning to get me up and began complaining straight away that I had paid her the wrong amount that week. So at 7am, before I had even washed and dressed, I found myself explaining about the intricacies of income tax, national insurance contributions and the workings of HM Revenue and Customs. That was a fun start to the day. Another former PA once called me on a Saturday evening to ask if she could book some annual leave. I wouldn't have minded except for the fact she rang while I was watching an Alan Bennett drama on BBC2. Interrupting Alan Bennett is a cardinal sin in my opinion.
A few years ago a PA rang me at 3am to tell me she was unwell and wouldn't be able to make it into work the next day. I always ask PAs to let me know as soon as possible if they need to take sick leave, but this particular PA took it to extremes. Of course, this woke up not only myself but also my live-in carer who was not very happy to be disturbed at that time in the morning. When the ill PA was back at work I explained to her as gently as I could that there was no point ringing during the night because I couldn't arrange cover until after 7am anyway.
Whenever the phone rings, a part of my mind automatically starts to fret. Is it a PA informing me that she is too ill to come to work? My heart lifts the moment I discover that it's a friend ringing for a chat. Coping with PAs' sickness can be very difficult. I'm lucky in that my two part-time PAs are often willing to work extra hours at short notice to cover each other or my live-in PA when she is unwell. I've also kept in touch with a few of my former PAs who are sometimes able to help out. But, of course, these people have other commitments and are not always available. In this situation I have to turn to an agency to provide cover and this can be daunting.
First of all, there's the anxiety about whether they will have a carer available. Luckily, the agency I turn to is very efficient and usually they are able to find someone for me. Nevertheless, the period between me making the initial phone call to the agency and them ringing back to give me the name of the carer booked to come is always a nerve wracking time.
Once the booking is confirmed, the worry about not having a carer at all is replaced by concern over who the carer is. My agency tries very hard to send me carers who've helped me before, but obviously if you book agency care at short notice you just have to accept whoever is available. When an agency sends me a carer who is new to me, I have to explain my needs from scratch and this can be tiring and emotionally draining.
Of course, no organisation is infallible and care agencies are no exception. When an agency makes a mistake and a carer fails to turn up, the impact on my life can be frustrating and distressing. It might mean I'm unable to get up in the morning and am stuck in bed for hours staring at the ceiling, waiting for a carer to arrive. It might mean I'm late for work or have to miss an appointment. Or it might mean I'm unable to get to a toilet when I'm desperate for the loo. Fortunately, over the last decade I've seen a considerable improvement in the quality of service care agencies provide. Most of the time, I'm pleased to say, the agencies I use are caring, organised and reliable.
When a home PA is off sick, life can be stressful but when a work PA is ill, the consequences can be more serious. At home it doesn't matter if tasks don't get done or take longer because the agency carer is less experienced at helping me than my permanent PAs. The only person affected is myself. However, at work I have to meet deadlines and if I don't do my job properly then not only will it create
extra problems for my colleagues but it could also affect the quality of the programme I'm working on.
The people who assist me at work need to be both able to do personal care and have good computer skills. Agencies sometimes have difficulty finding staff who meet both criteria. Luckily, I employ two full-time permanent PAs so when one is absent I usually still have the other one with me. On a normal day the work PAs share out the hours equally between them. However, when there is an agency worker, my full-time PA does 80% of the work and the agency worker mainly helps me with lunch and personal care. This minimises the impact on my job. Even so, I still find that I get less work done.
Covering a PA's sickness not only creates practical problems, it can also be a financial headache. Agency care is expensive. The agency I turn to for cover charges about £15 an hour. If a live-in PA is off sick for five days, the cost of cover is more than £700. There is some money in my care funding to pay for cover but not that much. If a PA is off sick for a long time then my "emergency pot" of money soon runs out and I have to resort to using my own savings. I can apply to social services for extra funding but there's no guarantee they will agree to it. For this reason, a PA who doesn't need much sick leave is worth her weight in gold.
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.