The quiet revolutionaries: patient leaders

Patient leaders are those who work with and influence others to promote positive sustainable change, new solutions to health challenges and collaborative systems of care. They are everywhere: in the community promoting wellbeing, working with health professionals and organisations to improve services and developing new solutions as entrepreneurs.

Previous articles in this series looked at the need for patient leaders, the challenges they face and the source of their leadership − the learning gained from leading and managing their own health and wellbeing. In this article, we ask some local and national patient leaders what they think about patient leadership.

‘You can’t be in it for quick wins’: Nicola Kingston

Nicola has been involved with the NHS since her son was diagnosed with diabetes at the age of one, and she also became a carer. After working in housing, she then worked on the Expert Patient Programme, and moved into public health. She became involved with local involvment networks and is now co-chair of the Lambeth branch in London

What do you think makes a patient leader successful and effective?

Resilience. It’s a long game and you can’t be in it for quick wins. Health and social care is so complex, particularly now, so it’s really important to get training and development for patient leaders – and we need to campaign for that. Build strong ties to the voluntary sector, and keep on top of things.

Main barriers

The sheer complexity of everything now, and the time being spent on reorganisation, threatens the loss of focus on what matters. We just don’t know where the push for involvement will come from.

There is an overwhelming desire to achieve budget reductions from short-term measures, without building the self-care skills and community assets that will prevent demand rising and will bring long-term financial benefits.

Why are patient leaders needed?

Because services need to become more patient- or user-centric, that does not mean doctors speaking for patients. It means patients speaking for themselves. The whole theme of shared decision-making and self-care is hugely underdeveloped and we need patient leaders to push the whole future of the NHS to involve people in their own health and social care.

What are you excited about in terms of patient leadership?

‘There are huge opportunities and needs for networking’

We are co-producing Healthwatch Lambeth with our council and CCG, which is truly innovative. There are huge opportunities and needs for networking now. For this to happen, there needs to be proper support and development that provides ways of bringing all sorts of patient leaders together eg HealthWatch representatives, CCG lay members and hospital governors, but also with other types of people, such as councillors and academic groups.

What do you want to achieve?

I would love for Lambeth to be seen as the leader in bringing co-production and community assets into the work of the health and wellbeing boards.

‘My vision is a quiet revolution’: Alison Cameron

After a successful international development career, Alison was diagnosed with post-traumatic stress disorder following an accident in which her colleagues were killed. Building on her experiences of using and identifying gaps in services, she became a mental health advocate and governor of a trust. She now has various national roles, beyond mental health. She is developing numerous projects on coproduction and has just been awarded a fellowship at Imperial College London/National Institute for Health Research looking at engaging with so-called “hard to reach” people in health and social care services

If you were to give one piece of advice to patient leaders, what would it be? 

Leadership starts from within. From there comes the resilience needed to keep motivated despite the barriers and realise that sometimes it’s two steps forward one step back. Take small steps. I started by making observations about gaps I saw in services for those with dual mental health and substance misuse issues. I then got asked to do more and more.

One thing you are most proud of?

I came from a place of passivity and self-stigma. But I have become proactive and been able to sow seeds of change in the minds of people, often with hitherto entrenched positions and resistance to allowing the likes of myself out of their boxes.

What have the main barriers been?

‘I fight against the “service user” label, but it holds a familiar security’

To be on equal terms with paid professionals requires the courage to say: “If you truly value what I bring, show that tangibly”. Professionals seem wary of working with competent, forthright patient leaders. But self-doubt in my own abilities, created by the system, is a challenge. I fight against the “service user” label, but it holds a familiar security. I need to reflect constantly on my own practice to challenge this self-stigma.

What do you want to achieve?

Patient leadership is about social justice – championing our right to full participation in society. It’s not about the kudos of belonging to a narrow group of ‘representatives’.

If people are seen as assets, the most ‘seldom heard’ can be effective leaders. Professor Edgar Cahn in No More Throwaway People said: “No more ongoing dependency as the implicit price for receiving help.”

So my vision is a ‘Quiet Revolution’, with Glasnost openness in NHS and social care institutions, then Perestroika reconstruction that enables patients to use our skills to design, implement and sustain the services we use. This should be the norm that is welcomed, not feared!

Why are patient leaders needed?

With spending cuts and rising service demand, we need new approaches. Current models in care still focus on “needs” over seeing people as “assets”. People like me, rendered passive by having an identity subsumed by a diagnostic label, possess a huge wealth of skill and assets going to waste. Working in equal partnership enables patients and professionals each with their own perspective to find creative solutions. This will save money.

What are you most excited about in terms of patient leadership?

This is a time of uncertainty and a degree of chaos in the NHS and public services in general. The best creative thought and innovation seems to occur under such conditions. I am excited to be part of a growing movement of patient leaders who share a vision which goes well beyond the safe and staid traditional “PPI” world and are hellbent on using this opportunity to bring about real change.

Who is your leadership role model and inspiration?

My confidence originally came from hearing Dr Rachel Perkins speak of how her own experiences of mental health issues actually opened doors for her. This inspired her, and now me, to start speaking up.

‘Design for all’: Denise Stephens

Denise Stephens is founder of Enabled by Design, a social business and community of people passionate about design for all. They believe good design can support people to live as independently as possible, by helping to make day-to-day tasks that little bit easier

What do you think makes a patient leader successful and effective?

I never used to see myself as a leader, more of a follower. But this sort of leadership – where you involve others – is both. Empathy is key. It’s important to be able to walk in other people’s shoes and bring your own experiences together with those of others. I talk to lots of different people, so need to be reflective and join up knowledge.

Communication is two-way; listening, being approachable and constructive. It’s not about “broadcasting” or “throwing stones”. Language is important. I once came across the OXO Good Grips Y-peeler, a well-designed vegetable peeler based on universal design and thought “why can’t everything be designed like this?” Not everyone knows the term universal or inclusive design, both are similar, so I prefer “design for all”.

If you were to give one piece of advice to patient leaders, what would it be? 

‘Others may be right; I don’t know everything! But resilience is crucial’

Try to balance your health and workload. If you don’t rest, then you might not be able to carry on. I’m still struggling with this. I don’t want to let people down. It’s a hard job with lots of demands. You can’t keep everyone happy. Don’t take disagreement personally and use learning where possible. Others may be right; I don’t know everything! But resilience is crucial. Innovators may get negative feedback as they often pose a threat to traditional ways of working.

Main barriers

I used to get stressed about public speaking, which had a knock-on effect on my MS symptoms. Now the challenge is finding that all-important business model that allows us to cover running costs and build capacity. We’ve made start-up funding go a long way. But finding time to take stock? I’m so busy, there seems little time to reflect.

What do you want to achieve?

I want well-designed assistive technology and products that support independent living – good design that’s functional and pleasing. When my MS symptoms worsened, I became surrounded by ugly assistive technology. I thought: Does it have to be like this? I sought nicely designed stuff and shared what I found. Our vision of a ‘design for all’ philosophy is about how things can be used by as many people as possible without need for adaptation.

Why are patient leaders needed?

People in organisations can adjust to jargon and structures and start to think in a certain way. Patient leaders bring a different perspective and can bring much needed challenge. They can be trusted brokers and intermediaries.

What are you excited about in terms of patient leadership?

Patient leaders could play a range of different roles – adviser, entrepreneur, community leader – but the role needs development, recognition and money.

Your role model

Jane Ni Dhulchaointigh, founder and inventor of Sugru (a self-setting rubber for fixing and modifying stuff), has developed a product and business while building an active community. They’ve reached 155,000 people in 119 countries. She had the idea, made it happen and engaged a global community. That takes passion, resilience and a hell of a lot of hard work to stick with it.

David Gilbert and Mark Doughty are co-directors at the Centre for Patient Leadership