The time when patients were the passive recipients of care is meant to be long gone. For the last few decades the emphasis has been on involving patients in decisions – both on a personal level about their own care, and consulting them and the wider public about the development and delivery of services.

But many people would argue that this change has not gone far enough. Care is still something that “happens” to many people, with little shared decision-making. Consultation and engagement with patients and the wider community can feel superficial, an affirmation of what the professionals wanted to do all the time, rather than a genuinely open conversation.

A new type of patient leader is challenging this paradigm. Sassy, well-educated and connected, and often informed by their own poor experience, they are having an impact on thinking across the system. These are far from the stereotypes of placard-waving protestors or a dozen pensioners roped into a focus group on elderly services. They are often relatively young, from a professional background, and willing to debate with managers and doctors on their own ground – and to use social media to great effect. And that is what makes them both a challenge to the existing hierarchy and a catalyst for change.

Alison Cameron is one of these leaders. She is a member of the expert advisory group for the new Independent Patient Safety Investigation Service, chair of the patient safety champion network at Imperial College Health Partners, a King’s Fund associate and runs her own consulting company, which helps health and social care professionals work in greater collaboration with patients.

Passive victims

Alison’s own story is a shocking reminder of how even middle class professionals can see their lives fall apart in the most dramatic way. After graduating with a degree in Russian, she started working in international relations. By 1990, she was working in the parts of Belarus which had been affected by the 1986 Chernobyl nuclear accident.

She felt some charities were portraying the people of Belarus as passive victims, ignoring their resourceful nature. “Those on the receiving end were sitting with skills that could be key but were not being utilised,” she has written. “Much well intentioned effort was contributing to a dependency that could not be helpful in the long term.”

She encouraged her bosses to support locally run projects that encouraged capacity building, in marked contrast to the notion of the Belarusians as simply recipients of aid.

Coping with a bullying culture

However, this came to an abrupt end when two of her colleagues were killed in a horrific accident. She was not in Belarus at the time but had to fly in to identify and organise the return of the bodies. The way in which the tragedy was handled by some of those around her at work contributed to her distress and she was diagnosed with post-traumatic stress disorder.

“Before being ill, I worked in a very bullying target-driven culture with a lot of political interference. I went into that job full of values, I remember a day coming into work [when] I was asked a question and I realised I had ceased to care,” she says. “Something profound had happened to my personality because of my working culture.”
She turned to alcohol to self-medicate and enable her to continue working in what she now views as a toxic environment. Now she can tell her tale calmly, but it led to her losing both career and home “and becoming a scourge on the NHS”, she says. She had over 100 admissions to hospital and one junior doctor described her as “a maelstrom of mayhem”.

Angry patient

The mayhem she wreaks now is more constructive. She has used her own experience to push for more meaningful patient engagement – not just with individual patients at the point of care but as partners in how policies and services are designed and delivered.

She found the tokenistic involvement in decisions about her own treatment and future made her worse. Professionals were ticking the boxes for her “involvement” but the fundamental power imbalance remained. “I had to get power back in managing my own health before I could go on to move to a more strategic level,” she says.

She freely admits she started her greater involvement with the NHS as an “angry patient” and it was coaching and support which got her past it. “There were no constructive channels for me to be a partner in change. I had nothing but angry passion and motivation but did not really know how to work in partnership and be strategic, when to use my story and when to leave it at the door.

“I was lucky enough to find help to get there but so many more of us could if there were more opportunities like I had. I almost found that by chance.”

And she warns that it is important to widen the range of those who are considered leaders. If organisations or whole sectors just think about those in the upper echelons of their own hierarchies as leaders, they will miss out. ‘It’s a waste,’ she says.

Source of leadership

She told this year’s MiP conference that patient leaders could help raise some of the issues that concerned professionals. “As a patient I often have more power to speak out than any of you professionals do,’ she says. “Consider us as a source of support and solidarity,” she explained.

“If you consider people like myself – patients who have the wider leadership skills, who know how to work in partnership – we are a source of leadership to share that. Perhaps to be the bridge between the frontline and back office. Why not see patients as a source of leadership? We are not necessarily in the formal hierarchy but in my view leadership is more about values and a way of being than position.”

When she has shared her experience it has had a profound effect on those listening. “I had one person break down and say ‘I now realise the extent to which my job has cut me off from the reasons I was doing it in the first place’. It is the cardboard boxes we are in… we need to destroy them before they harden into stone and become silos.”

“If you consider people like myself – patients who have the wider leadership skills, who know how to work in partnership – we are a source of leadership to share that. Perhaps to be the bridge between the frontline and back office.”

Getting acceptance can still be an issue. She was the first patient to go through the NHS Leadership Academy’s Mary Seacole programme, and is a fellow of the Collaboration for Leadership in Applied Health and Care in North West London — both rare examples of patients being able to learn and develop alongside professionals on an equal footing. Healthcare professionals have sometimes questioned her involvement and right to engage in this work. Occasionally she is not viewed as being “in health” in the way that NHS staff are – something which obviously grates. “One GP said ‘what are you doing here? You’re a patient while I have been to university’,” she recalls.

On the NHS Leadership Academy course Cameron was struck by the “overwhelming feeling of fear” from healthcare professionals, many of whom needed reassurance that they were safe to be open in that environment.

NHS patient engagement not fit for purpose

Like several other patient leaders, Cameron is now working professionally in patient engagement, managing to come off benefits last year for the first time in 17 years. Alongside her other commitments and managing her health, she runs her own company advising on patient engagement and co-production. It can come as a shock to some NHS organisations to find that many patient leaders providing what is, in effect, consultancy, are no longer prepared to give their time freely. Many organisations are used to getting a group of patients in the room talking to professionals and rewarding them with a cup of tea and their travel expenses at best.

As many patient advocates would point out, they are often the only person in the room who is not being paid to be there. At times, Cameron says she has found some of the NHS’s approaches to be exploitative. “I have frequently been nothing more than the ‘patient story” at the beginning of the meeting.

“I think the traditional mechanisms for patient and public involvement are not really fit for purpose any more. They tend to be based on patients as sources of data and experience which is captured.” But Cameron wants her experience to be “liberated” rather than captured, she says.

Old-style engagement methods, such as patient representatives and focus groups, are still important, but no longer enough, she says. “A lot of patient involvement is additive to existing structures, it does not move them,” Cameron says.

True co-production

True co-production is different. “Co-production is about equality of esteem and influence. People fear a loss of power when there is already a lot of fear and chaos in the system. People demanding to be part of the process of change can be very threatening. I would have found that profoundly difficult to deal with in my old job. I would have felt threatened, as I felt I was only just managing to keep all the plates spinning,’ she explains.

“But power is shifting anyway,” she adds. Cameron points to the massive impact of the internet and tools for patients to develop their own solutions, such as apps to record health data. She suggests the NHS should invest in some the initiatives being pioneered by patient entrepreneurs.

Patients often want to know how their contribution is being used and see it leading to change, Cameron adds, although sometimes they just want to get back to their lives or do something relatively low key, such as joining a patient participation group. “But there’s a certain group who are either mad enough or motivated enough to want to get more involved.”

In times of austerity, patients’ input may be a particularly useful resource which has not been fully utilised. Patients know about the points where services are not integrated and where they are fragmented, and where there are holes to fall into, and that insight is important, says Cameron. Patient engagement can be particularly powerful in demonstrating how healthcare doesn’t operate in a vacuum. As an example, she describes how she was labelled pejoratively as a “bed blocker” on a mental health ward because her home environment triggered relapses. What needed addressing was outside healthcare, but still had an enormous impact on both the patient and the healthcare system.

However, Cameron does feel the NHS’s tectonic plates are slowly shifting, with an increasing willingness in some areas to hear from patients. Drawing on her academic background in the collapse of the Soviet regime, she says: ‘There has been enough perestroika [reconstruction]. Perestroika is not enough by itself. You need glasnost [openness] as well.’