Online voice for drug users and people with mental health problems

Drug users are being given a rare opportunity to comment on the quality of the services they receive, due to the expansion of Patient Opinion, a social enterprise that has pioneered online user involvement in the health service.

Users of the Primary Care Addiction Service in Sheffield are the first drug users in the UK to be able to give their views, on the web and by phone, on how they would like the service to better meet their needs.

Former drug addict, Jason Gough, 39, who has led the user-involvement pilot while volunteering for the Sheffield Drug Action Team (Dat), says Patient Opinion has had a much better take-up than other models of user involvement, such as surveys and questionnaires. “Drug users have a degree of mistrust and are marginalised, isolated and often coerced into treatment by the criminal justice system, so the fact that Patient Opinion is a third party – rather than the clinic or Dat trying to canvass views – and is anonymous really gives people a voice.”

With a quarter of addiction service clients having access to their own email account, more than 60 comments have been posted on the website during the 10-month pilot. The majority have been about longer-than-expected waiting times experienced by many of the clients when they come for an appointment. The main reason for the long waits, Gough says, is that some people turn up in a crisis needing to be seen immediately, and so jump the queue. But what made clients angry, he adds, was that no one had told them this was what was happening. “This intensified their feelings of being left out, that no one cares about them,” he explains.

Comments are answered by clinic director Roger Smith and by specialist nurses and local prescribing chemists.

Since Patient Opinion was established in 2005, some 24,000 online comments have been read by service providers, which Patient Opinion chief executive Paul Hodgkin says leads to improvements.

Although the Department of Health online information service, NHS Choices, now allows people to post comments about a hospital or GP practice on its own website, Hodgkin says: “Our independence is important for service users, and because we are small we are better able to innovate. But these tools are so new, it is important to get them right. Is it important who runs them? No one knows.”

Tomorrow sees the official joint launch with NHS Choices of Patient Opinion’s service to NHS mental health trusts. Since April 2009, all 61 mental health trusts across the UK have been able to subscribe to Patient Opinion, with NHS Choices paying the social enterprise to train and support trust managers in how to respond to postings. To date, 45 trusts have signed up.

The 200 postings received on mental health issues range from a user of day services complaining about the noisy, intrusive shopping centre location of a clinic, to an inpatient criticising the lack of confidentiality and negative staff attitudes on her psychiatric ward. Staff have also used it to whistleblow on bad practice.

Maria Slater, head of services at the Warrington-based 5 Boroughs Partnership NHS Trust, which in October 2008 piloted the impact of Patient Opinion on its mental health trust, says that making feedback more accessible gave her legitimacy to improve services.

“The first posting we got was a very negative one, about an area where there were genuine issues that were already causing unhappiness for staff, managers and patients,” she recalls. “The posting gave me an opportunity to call a clinical meeting without middle managers or frontline workers feeling that I was interfering or non-trusting. Because the comments came from a service user, people could see this wasn’t management just being critical. And because the posting was public on the web, I was able to get a sense of urgency in responding to it.”

Slater drew up an action plan with senior staff and posted it back on Patient Opinion. “The fact that our actions were timely (complaints are usually a month at least out of date) made it more pertinent and the fact that staff [themselves] replied created ownership and a willingness to sort things out,” she says.

Gough, who has just been employed as a user advocate with Patient Opinion, hopes the success of its roll-out to mental health services and the pilot with drug users in Sheffield will encourage more health and social care agencies to give marginalised groups an opportunity to make their views heard. He says: “We need the collective experience of people using a service in order to improve it.”