Benefit of experience

The move from service user to professional is encouraged by the government, although critics raise concerns about objectivity. Anabel Unity Sale talks to some who have crossed the threshold to find out what they can offer

Allan Bowman’s appointment to replace Jane Campbell as chair of the Social Care Institute for Excellence has raised a few eyebrows. The fact that she is a renowned service user campaigner – and he, a former social services director, is not – has triggered a wider debate. If social care organisations are to adequately fight the cause of service users some would argue that they should be headed by the people they represent. But is it the case that some users at the top of agencies lack the objectivity needed to make crucial decisions fairly given how close they are to the issues personally?

Bowman’s appointment led to initial fears that the end might be nigh for Scie’s focus on service users (Eyebrows raised as institute picks chair, 23 February).  However, given that no service users applied for the position, it seems that the organisation had little choice but to appoint someone with a different background from Campbell’s. Nonetheless, Scie chief executive Bill Kilgallon has emphasised that applications for the post would have been welcomed from any of the organisation’s social care stakeholders.

Ensuring service users have more involvement in the development of social care services is an area that the government appears committed to. Last year it announced the creation of a new role for a part-time learning difficulties tsar, to be filled by someone with learning difficulties, to work alongside the national director of learning disabilities Rob Greig. Just last month it announced how an advisory group of disabled people will work alongside government in setting up a national forum to represent the interests of disabled people in policy and services.

Yet crossing the threshold from service user to policy-maker can be a challenging step. Andrew Lee, director of learning difficulties charity People First, has first-hand experience of this transition, having taken on his current role six years ago. He says: “I believe passionately in fighting for the rights of people with learning difficulties and I had personal experience of my rights being taken away.”

For John Knight, head of policy at disability charity Leonard Cheshire for the past 11 years, the move from user to professional was a gradual and natural progression. His first job out of university was as a trainee bank manager – “I hated it with a vengeance, I was innumerate” – before working for the Department of Health. He then worked at Hammersmith and Fulham Council as disability services officer before joining Leonard Cheshire.

A similar experience was had by David Crepaz-Keay, the Mental Health Foundation’s senior policy adviser for patient and public involvement in mental health. As a user of mental health services since age 14, he felt the time was right to move from campaigner to social care professional after he was made redundant from the water industry 16 years ago. “I’d done some campaigning on improving mental health services so knew what I wanted to be changed.”

There are many benefits for an organisation that employs service users in strategic roles. Employees who are or who have been service users appreciate what it is like to receive support. “You really do understand what characterises and what constitutes a good and bad service,” says Crepaz-Keay. “You also tend to be less constrained in your creative thinking because you think about what makes life better for users rather than ‘how can I deliver this service?’.”

Plus, the actual experience of living with a condition or impairment can never be truly understood by even the most understanding and aware of social care professionals. Knight says: “Having a disability can’t be mimicked; you either have it or you don’t. The benefit of having it is it gives you insight into how to live, day in day out, with one and how services can be made more effective for people.”

There is also a sound business case for involving service users in the provision of services. Bob Reitemeier, chief executive of the Children’s Society, thinks that consulting users, such as young people, leads to better results for the client group the service seeks to reach. “A child has a better perspective on what works for them than an adult and if we don’t involve them it makes for a very weak system.”

But when service users start working as social care professionals are they seen by their peers to be crossing the line and joining “the establishment” in return for a nice, fat pay cheque? Lee says the answer depends on how active the individual will be in changing the system and improving provision. “If they are going to an organisation that is not making any attempt to change then yes, that would be seen as abandoning the values of our movement.”

As it was, disabled people reacted positively to Knight’s first professional appointment because they saw that it would allow him to speak out for their common cause. “Disabled people saw it as a gradual erosion of the exclusion we had had from influencing public life and public policy.”

Although service user involvement in organisations has its advantages, it also has its pitfalls. One is that a service user turned professional will be deemed to represent the plight of all service users, which can never be the case.

Whether a service user turned chief executive can be objective is also a concern. Crepaz-Keay says that, as well as remaining objective, a service user in a leadership role must also ensure that they step back and look at policy from a broader, strategic position. “While you may expect the chief executive of Tesco to walk the shop floor, you wouldn’t expect a head of a social care organisation to spend a lot of time thinking about things in such a narrow way.”

It is not always practical – or feasible – for every social care agency to be led by a service user, for example, where the agency represents children. So non-user-led social care organisations need to reach out to the people they represent.

Embedding the view of users in everything an agency does and monitoring their feedback on provision is key to this, says Reitemeier. His organisation seeks to involve children and young people in its work by having young people sit on its board and by consulting a user panel.

Crepaz-Keay, meanwhile, thinks that the best mechanisms to engage with users will vary according to the client group in question. He says the methods for engaging with users will also depend on whether the agency wants to improve current provision or future services.

All agencies – Scie included – must make an effort to engage users in more than just a tokenistic way, says Kilgallon. “Tokenism is insulting and demeaning and should have no place in social care,” he says. He suggests asking current clients about the type of mechanisms that encourage them to become more involved.

As for service users with ambitions to become social care professionals, Lee has some simple advice: “I’d say go for it! Individuals need to believe in their own ability to start with but also to change employers’ attitudes towards hiring disabled people.”