From the age of 18 months, when he was diagnosed with polio, James Tatton has been a fighter. He forged a successful career as a printer and competed as a power lifter at the 1988 Seoul Paralympics. In retirement, the 68-year-old wheelchair user has continued to do voluntary work despite failing health.
Thanks to a scheme that enables him to employ his own carers, Tatton remains in his Ramsgate home - the three-bedroom semi he has shared with his wife, Valerie, for the past 40 years. By using a debit card issued by Kent county council, he buys the care he wants and has handpicked a team of personal assistants who help him with basic tasks and accompany him to charity meetings.
His tailor-made services are at the heart of the government's drive to extend choice to all users of public services. Last year, health ministers launched the Choose and Book scheme, giving hospital patients the choice of where and when to be treated, fitting in appointments with their own schedules. This year, the focus is on development of out-of-hospital care, empowering in particular the 1.5 million users of social care services by giving them greater choice over how care and support are delivered.
It is a scheme very much in this mould that has given Tatton a fresh lease of life. Kent social services is offering people with long-term needs the chance to choose their own care - paying for services through a debit card or using a "virtual bank account" managed by the council. The hope is that up to 9,000 people will be thus empowered to make the move away from dependency on council-run services.
Care package
Jean Penney, Kent's project manager for independent living, says the project is still being developed. But people are already reaping the benefits. "We have already got some people who use their cards to go once a week to leisure centres as part of their care package," she says. "Another lady, who was entitled to four weeks' respite care, chose to use the budget to go to Tenerife and arrange a package of care over there. If you can get the support, it makes sense to go somewhere warm rather than spend time in a residential home.
"People are also attracted to the virtual account as they want to have control on how their social services money should be spent - but don't want the burden of the paperwork. The government's system of direct payments proved unpopular because it was inflexible and people didn't like the paperwork. Flexibility lies at the heart of the new system. Care packages can be changed according to need. And in future, people may be able to top up the cards with their own cash."
It is not just Kent that is giving people the opportunity to live more independent lives without compromising their need for care at home. In Hampshire, 10 care users are using part of their direct payments for care to pay for weekly art classes. The group, which includes older people and others with learning disabilities, finds the lessons therapeutic. Other people with disabilities are using some of their social services budget for swimming lessons because of the health benefits they bring.
However, advice workers promoting independent living say that many people are unaware of their entitlement to direct payments, even though the system is supposedly universal on demand in England.
"Everyone assessed as needing care at home is entitled to direct payments," says John Browning, advice worker for the Southampton Centre for Independent Living, set up by the city council to give a voice to people with disabilities. "But there is a general ignorance about the scheme, which traditionally has been used just for domiciliary care." Having helped more than 350 people on to direct payments over the past two years, he is seeing people using the money in imaginative ways. "One lady, who is mad-keen on gardening, can no longer attend to the garden herself and she now instructs her personal assistant to do it for her," Browning says.
Unfortunately, schemes like those in Kent and Southampton are few and far between, according to the Commission for Social Care Inspection (CSCI), which is trying to encourage user involvement. While there is "good, exciting stuff" going on across the country, the commission says, it remains in pockets. All too often, people are locked into services provided directly by their councils, according to Frances Hasler, the CSCI's head of public and user involvement. "There are bright beacons of practice, but they are not far enough into mainstream work," she says.
Choice has developed at a faster rate in the housing sector, where a new generation of "extra-care" schemes is offering vulnerable older people choice and dignity. Local authorities are increasingly forging partnerships with housing associations in recognition that housing plays an important role in meeting health and care needs. Growing numbers of schemes now offer a combination of sheltered housing, with care and support, and intermediate facilities for people discharged from hospital.
One example is Hillside Court in Bristol, where flats have been adapted to meet the needs of older people with dementia and there is a choice of flats to rent or buy leasehold. The partners, the city council and housing association Housing 21, have created a self-contained environment, including a restaurant and hairdressing salon, but one that is open to older people from the local community. In a classic example of joined-up care, a treatment room is used by a chiropodist.
Elsewhere, the move towards choice-based lettings and away from traditional housing waiting lists has given tenants a greater role in deciding where they want to live and when they want to move. Housing officials in Harborough, south Leicestershire, are leading the way, with the result that allocations are no longer made behind closed doors. Properties are advertised in local newspapers and, armed with information on features such as central heating, location and nearby schools, prospective tenants may apply for a particular property. A banding system, based on levels of need, protects the vulnerable.
Culture change
There is no doubt that schemes like these involve a massive culture change - with authorities relinquishing some of their powers to individuals. However, research suggests that the success of a more person-centred approach rests on the provision of the information necessary to allow people to make informed choices.
A soon-to-be published study by health workers in Manchester highlights the importance of ready access to information. Based on a survey of more than 2,000 patients offered a choice of hospital after a six-month wait, it shows that, contrary to expectation, ethnicity, gender and deprivation made no difference to people's desire to seek an alternative provider. But 25% wanted more information about different hospitals and 40% wanted time to consider their options before making a choice about alternative providers.
Further, patients had fixed views on how they received their information. Most preferred to be given the facts face-to-face or over the telephone, rather than needing to rely on leaflets or the internet. Public libraries, where librarians can access the internet on behalf of users, were popular.
This study, the Greater Manchester Patient Choice survey, sponsored by the Department of Health, is already influencing the way the department is designing its Choose and Book scheme. But project director Chris Joseph believes it has important lessons also for development of the more person-centred approach in community services.
"It is clear that there are lots of choices out there, but we need to make sure people have the support they need to make choices," Joseph says. "Older people do not readily engage with the internet and prefer face-to-face contact. We need to look at strengthening existing support services to make sure everyone can base their choice on the same information."
For James Tatton, whose wife has severe arthritis, the benefits of choosing his own care are obvious. "I really feel as if I have my independence back," he says. "As an employer of staff, we can mutually agree the hours to suit us. If I was relying on council services, they might come to put me to bed at 7 pm. That is no life at all."
