What's the trickiest part of being paralysed from the neck down? Despite what you might think, it's not being unable to walk. I adjusted to that aspect relatively easily. Neither is it the fact that I've occasionally faced discrimination and prejudice. No, the most challenging consequence of becoming tetraplegic is that I need to rely on other people for help 24 hours a day, seven days a week.
Until I was 18 most of my care was provided by my parents. The local education authority employed people to assist me at school but my parents helped me the rest of the time. At university I lived in a charity-run care home for disabled students and used a government allowance to pay for additional helpers (mostly postgraduate students and sixth formers who wanted to earn some extra pocket money). However, since graduation I've lived independently in a flat and organised my own care with my parents giving me support with the paperwork.
Disabled people use a variety of terms these days to describe the people who assist them, according to their personal taste. Older people still tend to use "carer" but among younger disabled people, who have been influenced by the disability rights movement, "personal assistant" is now becoming the norm. Personal assistant is preferred by many disabled people because it implies that it is the disabled person who makes the decisions and is in control of their life rather than the person helping them. I've also heard disabled people calling their assistants enablers, facilitators, helpers and, in one case, a "doer". I tend to use the term personal assistant but that job title does have its downside. Sometimes the person I'm speaking to thinks I'm referring to a secretary. For this reason, I often use the term carer as well, to avoid any confusion.
In a typical week I am helped by six different PAs. To list all the tasks they do for me would take far too long so here's just a sample. My home PAs wash and dress me, clean my teeth, help me use the toilet, prepare food, go shopping, switch the radio and TV on and off, turn pages of books and newspapers, answer the telephone, help me search the internet, keep my flat clean, help me travel to and from work, and accompany me to the theatre, cinema and exhibitions. My work PAs help me to use a computer, type documents, make notes, push me to meetings and operate recording equipment as well as assisting me with personal care.
If you need a live-in carer like me there are various ways of arranging a care rota. Some disabled people employ live-in PAs on 48-hour shifts (48 hours on duty followed by 48 hours off). Others operate a week-on, week-off pattern where a PA works for seven days in succession but then has seven days of free time.
These are long shifts for carers but they are normal in the social care world. Live-in carers cope with these hours because normally a large proportion of their time is spent on-call. Although they have to be in the disabled person's home in case they are needed, they can watch TV, read a book or listen to music while the disabled person is engaged in some other activity. Being a live-in carer can be appealing to people from overseas who want to live in this country and need somewhere to live. Having said that, the hours that live-in care work involves can take their toll. While some people may make a career out of it, most PAs will only do live-in work for a few years.
I organise my care very differently to these models, partly because of the nature of my disability, partly because I have a full-time job and partly because at the moment I rely on unpaid family carers at weekends. I employ a live-in PA who stays with me at my flat in London and helps me from Monday to Friday every week. Alongside her, I have two part-time PAs who help me on weekday mornings before work and in the evenings. At work I employ two full-time PAs who are with me normal office hours. Their main role is to help me do my job but they also assist me sometimes when I'm on leave. Most weekends I'm helped by my parents at their home in Essex so I have a third part-time PA whose role is to accompany me from my parents' house to my workplace on a Monday morning.
Due to the severity of my disability, I need two PAs available at any one time during the day. There are a number of reasons for this. For a start, several parts of my care require two people. It takes two PAs to help me get up and go to bed, to take me to the toilet or to alter my position in my wheelchair. Two people are also necessary for the well-being of the PAs themselves. As I require assistance with most tasks and have a busy lifestyle, helping me can be an intensive job so having two people is essential to enable each of them to have breaks.
Moreover, I need two people in case one of them suddenly becomes unwell. There have been four occasions in my life when one of my PAs has had to be rushed to hospital by ambulance. (Before you get the wrong idea, I would like to point out that these incidents were unconnected with my care. I don't behave in a way that injures my PAs!) If a PA becomes too ill to carry on, it's important that there is somebody else on hand who can take over straight away.
My live-in PA has her own bedroom in my flat and she also receives certain travel expenses. Some disabled people also pay for their PA's food bill. I have never done that because I noticed in the early years of using PAs that some people ate more than others. It seemed unfair to me that those with bigger appetites should have more money spent on them than those who didn't. My policy is to incorporate the food allowance into the main pay of my live-in PA so that each person receives the same amount of money and they can decide how the money is spent.
I employ four of my PAs myself and two are from care agencies. The main advantage of using an agency, rather than employing PAs yourself, is that it simplifies your paperwork. There's no need to worry about administering tax and national insurance payments. You simply have to pay the bill when the invoice arrives in the post. You also have the peace of mind of knowing that the staff have been through a CRB check and that if anything goes wrong it is the agency's responsibility to sort it out. When the carer takes a holiday or rings in sick then it's up to the agency to organise a replacement.
However, using agencies does have major drawbacks. High-quality agencies tend to be very expensive. They charge far more than it would cost to employ a carer directly. The agency that sometimes provides cover when my regular PAs are away charges about £15 an hour, and twice that on a bank holiday. (There are slightly cheaper agencies but the strength of this one is that they can usually find carers for me at short notice.) Even if I wanted to use agency staff the whole time I wouldn't be able to do so because I couldn't afford it.
The other disadvantage of agencies is that you have far less choice over who helps you. If the agency sends someone you don't feel is suitable then you can request they allocate you someone else next time, but there's no guarantee that the office staff will be able to respect your wishes. They might not have the flexibility in staffing to take into account all their clients' preferences. There's also less chance of achieving continuity of care as agencies tend to have a relatively high turnover of staff. As it's very important to me that I can choose who assists me, I recruit and directly employ the majority of my PAs. So why do I still pay agencies to provide two part-time carers?
On Monday mornings I use an agency carer to take me from Essex to my workplace in London. It's expensive but as only a small number of hours are involved it's worth paying the extra in order to reduce the amount of administration I face.
My other agency PA has been with me for more than 10 years. When I first moved to London in 1999 I needed to find a part-time carer very quickly and the easiest way to do this was to book an agency. My plan was to use the agency for a couple of months and then recruit my own PA. However, the carer sent to me by the agency was so wonderful that I've never wanted to say goodbye to her. After a decade of working with me she knows me and my needs very well. Luckily, the agency she belongs to has a very reasonable rate, so having her as one of my PAs doesn't break the bank.
Every week I spend approximately £1800 on care. My home PAs are paid for by my local authority's social services department and by a national government-funded agency, the Independent Living Fund. The ILF exists to top up social services funding in cases like mine where a person has high care needs. I receive direct payments which means social services and the ILF give me the money to spend on care in the way I feel is most appropriate. I have a separate bank account to handle my care funding to keep it separate from my personal income and expenditure. Every four weeks social services and the ILF put money automatically into this 'care account'. I then use this money to pay care agency bills and the wages of my directly employed PAs.
My work PAs are funded by the Employment Service under the Government's Access to Work Scheme. Each month I submit an invoice to my employer's HR department which sets out what I've spent on my work PAs' salaries together with the cost of agency cover for their annual leave and sick leave. My employer reimburses this money into my 'care account' and then reclaims this expense from the Employment Service.
Being a PA employer is more complicated than you might think. For a start, you become responsible for administering their tax and national insurance payments and producing their payslips. At the moment I sort out tax and national insurance myself with the help of my dad but there are payroll services which cater for disabled PA employers and I might use one of those in the future. Secondly, you need to have both employers and public liability insurance in case your PAs injure themselves or someone else while they are on duty. Fortunately, there is an insurance company which specialises in policies for PA users.
Thirdly, you have to be accountable for how you spend taxpayers' money. The three public bodies which give me funding to employ PAs - social services, the Independent Living Fund and the Employment Service - all require you to keep a record of how you spend their money. They carry out regular reviews to ensure you are not abusing their financial support. Any disabled person who employs PAs needs to become adept at filing.
Whenever there is a change in my life I have to consider the impact on my PAs. My last flat was privately rented and not designed for wheelchair users, so when a housing association offered me my current wheelchair-friendly property I knew it would be sensible to accept it. However, my delight in moving to more suitable accommodation was almost cancelled out by the fear that I might lose one of my excellent part-time PAs. She faced the prospect of a longer journey to my new home and I was worried this might stop her coming to me. Thankfully, she chose to carry on and seven years later she's still with me.
Using PAs also has an impact on my career. Although I'm naturally an early riser, it's difficult for me to take on any job that involves starting very early in the morning. I can't get out of bed without the help of my part-time PAs and they would have problems getting to my flat much earlier than they do at the moment. Similarly, if there was a possibility I might be given a job that involved working later in the evening my first action would be to hold a meeting with my work PAs to discuss what effect it would have on them and to find out how they felt about it. Any change in my working hours obviously means a change in their hours as well.
As I am their employer, I also have to take reasonable measures to ensure my PAs' health and safety. A few years ago, when two of my PAs said their sitting position at work was hurting their backs, it was up to me to instigate an assessment of their seating. Likewise, when one of my home PAs told me that she was having difficulty turning me at night, it was my responsibility to arrange for an occupational therapist to give her advice on developing a new moving and handling technique.
In a way, disabled people who employ PAs are in a similar position to working parents. Just as working parents have to take into account the needs of their children when making decisions about their career, I have to take into account the needs of my PAs. You can't only think about yourself, you have to think about other people as well. A tetraplegic person who wants to lead as normal a life as possible has to learn to juggle lots of balls - the demands of your job, your family, any commitments outside work and, of course, the needs of your PAs.
I can understand why some elderly and disabled people might not want to receive direct payments and would prefer to stick to the old system of social services organising people's care packages. Not everyone will feel comfortable with the extra responsibility and paperwork that employing PAs involves. But for me it is by far the best way of funding my care. It gives me more choice over when I receive assistance and who assists me than I would have otherwise. I'm grateful that I live at a time when the campaigning of the disability rights movement and the decisions of enlightened politicians have given disabled people like myself such control over our own care.
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.