ANTHONY

I'm welcomed into the bungalow that Anthony shares with his parents in the West Country. Sitting in his wheelchair, he's surrounded by a panoramic view that is breath taking. "They told me I had a life expectancy of just five years" Anthony announces with a wry grin on his face, "that was 26 years ago… My plan" he says, "is to outlive the consultant who told me that."

Anthony's life changed dramatically at the age of fifteen, when he rode pillion on a motorbike with his brother. The accident caused permanent injury to them both, but Anthony came off much the worse, with a broken neck. "Tetraplegia to be precise" explains Anthony, "caused by damage to the fifth cervical vertebrae in my spine. (C-5)" After spending eleven months in hospital, he remains paralysed in all four of his limbs and now uses a wheelchair to get himself around. Anthony is also unable to use his hands and wrists effectively and is therefore physically dependent for many of the everyday tasks that the rest of us are able to simply take for granted.

"UNTIL THREE WEEKS AGO, MY PARENTS HAVE NEVER HAD A HOLIDAY TOGETHER."

"Access to Continuing Care money from my Primary Care Trust" says Anthony, "has given me an individual budget. This has meant that I've been able to design and implement my own daily support infrastructure… and get on with my life." For over a quarter of a century, Anthony's parents have been taking care of all his routines and daily assistance, now his mother is paid for one day each week and his live-in carer is employed for the other six. "Until three weeks ago" says Anthony, "my parents have never had a holiday together as a couple on their own. "

"THERE'S NOWHERE ELSE CAN YOU GET THIS TYPE OF FLEXIBILITY."

Anthony met Home Care Direct a couple of years back and wasn't planning on getting care at that time. Later he got in touch. " It's critical to get the right person and I wanted to recruit myself; Home Care Direct were happy to let me do that." He says, "but taking on things like the payroll would have been a pain, so they do that for me. This kind of service gives you choice and control to do things in a way that makes most sense to you in your own particular circumstances. As an option to any other form of care that's registered to National Care Standards, there's nowhere else you can get this type of flexibility."

Anthony sought staff who were going to be reliable, intelligent, a degree of empathy, be quick learners and have a driving licence. Above all, they needed to be people who could get on well, both with him and his family and learn to share their home without being over intrusive; quite a tall order for many people. Anthony logged onto Gumtree.com, an Australian website with a bulletin board for ex pats. "My thinking was, he explained, "that someone from abroad would be free from family ties. They would perhaps be more likely to have a flexible attitude. I interviewed by email" he says and came up with a short list of four." Jolita, who is from Lithuania, fitted the bill and became the successful candidate. Jolita uses Home Care Direct's technology (attached to a computer via the telephone line) to automatically register the number of hours she has worked, so there is no need for writing out time sheets and receives her pay cheque regularly. Home Care Direct take care of her as an employee and see that her training is up to date and that she has support and supervision whenever she needs it. Anthony looked across toward Jolita, "The role of carer can be an isolating job with a good deal of responsibility and little support and supervision, it's very healthy for my staff to have help twenty-four a day on the end of a phone."

Anthony has his budget from the Primary Care Trust credited directly to his on-line bank account with Home Care Direct, this way he has all his budget details at his finger tips and can access them at anytime.

But it's not the money that makes services work at their best; it's the understanding and sound relationships that develop between people that really make it happen. Having the total freedom to choose and be in control of your own affairs gives people the opportunity to live the lifestyle they really want for themselves. Over time, most people learn to deal with their various impairments, but what seems to disable them most, is being surrounded by too much unwanted agency interference, unnecessary paperwork and bumbling bureaucracy. "This form of support" says Anthony, "is pretty close to a perfect service."