Feel the power?

Self-directed support will radically transform mental health care, says the government. By 2011 ministers want more service users to manage their care budgets, so empowering them to decide their care and who provides it. Out with inflexible council-run services and in with personal assistants, care entrepreneurs and Buddhist retreats. That’s the idea. But what’s happening on the ground? Adam James investigates

Getting fit and losing weight. That is the priority for Patrick Reid, a 37-year-old diagnosed with schizophrenia. Medication and inactivity had seen his weight boom to 22 stone.

Patrick is one of 72 people who participated in a government pilot of individual budgets, whereby people with mental health problems receive cash to chose and buy their own social care for the whole year.

Patrick, from Skegness, Lincolnshire, was granted £4,200. He bought subscription to a gym and a mountain bike. “I’m on my bike around Skegness nearly every day, and I go to the gym five times per week. I have lost 43 pounds in weight,” he says.

Patrick also says his disabling paranoia has reduced. The gym visits and run-arounds in a second-hand Volvo bought from Ebay means he socialises more.

“I used to avoid going out,” says Patrick. “But having my own transport has improved my life no end. Without individual budgets I would have probably have just struggled on as I was doing last year. It has given me a kick start. I am feeling alive.”

The government will enjoy this kind of testimony as it promises to realise “personalisation” and “self-directed support” in adult social care. More and more service users – both those with learning disabilities and mental health problems – are set to be manage their own funds to not only decide what social care they have, but to shop around for it.

Ministers hail self-directed support as ushering in a “radical” transformation of social care. Underpinned by a social model of disability, they say it will empower users to decide their care and who provides it. The idea is out with archaic, inflexible council-run day care services, and in with personal assistants (PAs) and entrepreneurs offering care. The first manifestation of self-directed support was in 1997 with the introduction of direct payments. Then, in 2005, the concept of “individual budgets” arrived, enabling users to claim money from more funding streams.

The mental health individual budget pilots in five local authorities do indeed show people are steering away from traditional services, and instead are hiring PAs to accompany them do what they want – whether it be a trip to the grocers or a football match. Others have bought a tent to go camping in Cornwall, enrolled on Buddhist retreats, photography courses and signed up to dating agencies.

“Within history of mental health it was presumed that people with mental health problems would appreciate the value of day centres, to be with others with the same problems,” says Tina Redshaw a community psychiatric nurse in Norfolk who has worked with six people on pilot individual budgets. “But I am finding that they don’t. They want to go to places and do what you and I do – things that we take for granted”.

But a reality check shows that self-directed support has hardly got out of the starting blocks for both people with earning disabilities and mental health problems. Eleven years on, of the 1.7million people receiving statutory social care, the Commission for Social Care Inspection (CSCI) reported that just 40,600 adults in England had a direct payment, as of March, 2007. In Scotland it was 2,291. Just 2,085 people with mental health problems receive direct payments. Around 300 people with mental health problems have personal budgets (the social care component of individual budgets).

The CSCI blames councils for failing to provide information for service users, low staff awareness, patronising staff attitudes, inadequate advocacy and bureaucracy. Now Health Secretary Alan Johnson has told council managers that by 2011 they must have made “significant progress” in enabling all people eligible for social care to manage their own budgets. This momentum continued in July when health minister Lord Darzi’s review of the NHS spelled out plans for patients to be also given personal budgets for health.

Organising self-directed support is not, on the face of it, complicated. The service user and care manager (often a social worker) complete a questionnaire detailing support needed. Then, if they have different opinions, they come to an agreement. The questionnaire is then sent to council finance officers who calculate how much per annum a person is entitled to. That’s when a service user writes their own support plan, with hoped-for outcomes, and buys support. Vitally, s/he can choose to be helped by a care manager, family or friends or an advocate in setting up a bank account, organising a pay roll and other administrative duties.

As for the social worker, their role is likely to change from one of being the gatekeeper to services to one of expert adviser. “The social worker’s current role is to assess a service user and make a care plan from it,” says Carey Bamber, self-directed support lead for the government’s Care Services Improvement Partnership North West. “With individual budgets [and personal budgets] the care plan is substituted with a support plan which service users write themselves. It’s a huge challenge for the culture of social care”

Concerns have been aired that social workers will become defunct. That’s “rubbish”, says Ian Johnston, chief executive of the British Association of Social Workers. “There’s a shortage of social workers and the need for social workers to assist people gets greater.”

But will self-directed support be all its cranked up to be? Will the wants of service users be vetoed by risk-averse local authorities wary of the idea of someone scooting off on a holiday rather than being safely tucked away in day centre? Will there be enough choice of care? Sufficient advocacy services? Will there be the political will?

No one can say. But Peter Beresford, professor in social policy at Brunel University and a writer on personalisation in social care, is deeply concerned. He points to claims by Demos associate Charles Leadbeater that, with the shaving off of council administrative charges, personal budgets will cost up to 45% less than statutory-run services. “Are we going to be talking about an empowering idea, or a budget-driven approach. I fear it will be the latter,” he says, adding that, despite the rhetoric, there is, on the ground, no choice for users.

Bamber is more upbeat, arguing that creative thinking by individuals and social enterprises will spawn choice. “I think people will get better value for money. For example, a local authority or agency carer can cost £25 per hour, but people are using personal assistants for a third of that. People can do much more, for less, and it’s not about driving down quality.”

Self-directed support benefited Patrick. But the other millions are going to have to wait and see.


Self-directed support – the ups and downs

Michelle Coleman, 50, cares for her brother, Wilfrid, 67, diagnosed with schizophrenia in 1962. Wilfrid spent nine years detained in a Victorian asylum in Canterbury, Kent, before being discharged to his parents’ home. Wilfrid, a wheelchair user, lives in the family home of Michelle and her four children.

“Wilfrid has always been cared for by his family. And he has been on heavy medication throughout his life. My mother and father first cared for him and I have cared for him for 20 years. Wilfrid needs help with everything.

Before direct payments, what social services did provide was inflexible. For example, if a driver came to pick Wilfrid up on a Wednesday morning to go to a day centre or for breakfast and, because of his poor mental health, he could not go, he would lose the service for that week.

I found out about direct payments when a leaflet dropped through the door. But from the start I felt mental health services were uninformed. I asked for a 20-hour care package for Wilfrid each week, and eventually a seven-hour package was agreed. I was made to understand that this was one of the highest support packages that any service user receives from the mental health centre.

We had to set up a bank account, and social services agreed an hourly rate for Wilfrid’s PA, who is a family friend. And we organised a pay roll and insurance. We set it all up with a direct payments worker from Kent Social Service, a community psychiatric nurse, myself and Wilfrid. It all had to be approved by the social worker and care manager. The PA takes Wilfrid out shopping, for example. But if he does not want to go out the PA will assist Wilfrid in anything he wants to do.

Just because Wilfrid can’t fill in forms, does not mean he does not understand. With an advocate people like Wilfrid are able to use direct payments.

We are considering an appeal against a decision that one of my daughters can not stand in for holiday cover. This has been refused as my daughter lives in the same house and relatives can not be paid from direct payments. To use an agency is £17 per hour, plus travel expenses, and they tend not to be flexible. But we can only pay £8 per hour. For 47 years we have used members of the family, not agency staff. With agency staff you really do not know who you are getting

Direct payments are better, but not perfect. However, it has meant that Wilfrid is now able to decide for himself and not lose out. Under the old system he could not.”

* Some names have been changed

* An edited version of this article first appeared inMental Health Today magazine

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