Transformers and Enablers – the new Patient Leaders

 David Gilbert, a former mental health service user, and Mark Doughty, who lives with arthritis, are leading the charge to up the patient participation game by launching Patient Leaders.  This will be a hub or centre that offers learning and development and a community of practice for a new generation of Leaders.  MAC has worked with David for a number of years and in many contexts  – he helped with the evaluation of the Pilot Patient Forums project.

His latest idea is founded on a profound experience and knowledge of health services both as a service user and a public engagement consultant. We wish this venture well and look forward to working with it. He says: “Patient leaders have a valuable role to play in tackling the problems facing health and social care at a national and local level, but we need to improve the development of and access to learning opportunities in order to grow this pool of talent properly.”

Rise of the Patient Leader

Below is a taster from David’s recent opinion piece in Health Service Journal on “The Rise of the Patient Leader”  in which he describes his vision for different types of patient leaders and a new generation of “unusual suspects” to help tackle the crises in health and social care. The whole piece is a “must read”.   It is clear that Patient Leaders intends to move well beyond patients as merely well-informed service users or even as “experts” in their own condition and treatment.

Amidst the chaos of reform and unprecedented challenges to improving health, the biggest asset we have – people who live with health problems and use services – remains untapped. Instead, patients are a problem to be solved, not the solution.

Patient and Public Engagement (PPE) has been co-opted by institutional interests as a buffer against change, rather than as a co-production engine for it. Despite the rhetoric of ‘nothing about me without me’, organisational approaches to involve people seldom move beyond tokenistic consultations, questionnaires, one-off projects or overly-bureaucratic structures with a seat for a public representative. The engagement industry gathers data through an endless variety of specialist techniques but avoids using that intelligence to inform decisions.

Meanwhile, the NHS cry has gone out for new and innovative leaders to steer us through the storm. Leadership programmes for health professionals abound, yet the only people deemed worthy to lead are clinicians or managers.


Even the words are loaded. Take the phrase: lay representative. ‘Lay’ comes from ‘laity’ invoking notions of a priesthood that excludes non-members. Sterile debates about whether patients can represent others serve to distract from a proper definition of the role, which is two-fold:

  • Community channel – externally facing, keeping in touch with local communities and bringing in wider perspectives;
  • Critical friend – internally facing, flying the patient flag and offering strategic advice from a non-institutional perspective.

Being clear on this ‘outsider-inside’ role can lead to better discussions on the competencies required and what learning and support should be available.

But beyond the thousands of representatives or advisors, there are many others keen to lead change and improve health in the community. These are the health champions, community development practitioners  community researchers, peer-to-peer mentors or even patient entrepreneurs.

So, we have the emergence of two sorts of Patient Leaders:

  • Transformers – System-facing leaders wanting to improve the health and social care system (the representatives and ‘advisors’)
  • Enablers – Community-facing leaders wanting to improve health and well-being in their  community

But, where is the learning and support for such a blossoming of talent? Professional development is a well-recognised term after decades of investment in staff training. Learning and support for Patient Leaders is almost non-existent.

Patient Leaders – an idea whose time has come 

Gilbert and Doughty have been delivering learning programmes for different types of patient leaders over the last couple of years. These are based on action learning and co-production principles. The CLAHRC in NW London funded four ‘effective patient and community representative’ programmes.  Croydon Voluntary Action and Hammersmith and Fulham PCT followed suit. An online community of practice is being developed alongside a wider variety of learning offers on the Patient Leaders theme. The programmes have been evaluated and show significant impact in terms of people’s own self-esteem and confidence, ability to contribute to dialogue and accountability, and in catalysing individuals own projects in the community.

Patient Leaders is in conversation with several statutory and voluntary organisations about working together to develop the ideas and a wider pool of talent.  National Voices seems particularly keen on advocating for the idea at policy level and in making patient leader programmes available to its members.  Others, such as the National Rheumatoid Arthritis Society have run learning sessions for their regional ‘ambassadors’.

We are sure this is an idea whose time has come.  Patient Leaders can take hold and make a difference. This is something that commissioners and their providers in primary care and Foundation Trusts and patient-led organisations can really get behind as it is in everyone’s interests.

The idea is also receiving international recognition. Ashoka Changemakers is a global online community of action that connects people to share ideas, inspire and mentor each other, and find and support the best ideas in social innovation. Patient Leaders is one of 15 finalists in its Innovations for Health Award. There were 370 entries from 70 countries.

Let’s see some patient leaders in neurology

MAC would particularly like to see some patient leaders in long term neurological conditions.

“For this clinical area, the department left the implementation to local health commissioners but gave them no leadership at all. It set no baselines and failed to monitor progress. The present government needs to understand what went wrong here for the future.”

That’s the damning conclusion of the Public Accounts Committee investigation into Services for People with Neurological Conditions published in March this year. It is a hard but deserved judgement and pretty much what we said to the PAC in our memorandum of evidence.

If ever there was a time the neurological world needed leadership it is now.  Who better to give it than well supported patient leaders with neurological conditions?  We look to neurological 3rd sector bodies to understand  and unleash the power of their members and enable them to lead neurological services to a much better place for themselves as patients and for clinicians who need liberating to do a much better job of providing integrated, quality services.

Leave the blandness behind

We think this case for patient leadership is strong and that Patient Leaders is a terrific idea.  Such a welcome departure from the usual blandness about patient and public engagement which sees it as a “good thing” but never focuses on what it is for and what it can achieve.

Leadership is undoubtedly essential for effective engagement. Clinical, managerial and lay (service users, carers and the public) are leadership’s three legs.   All three are needed for meaningful decision making.  Two-legged stools don’t stand up.

The new clinical commissioners – and their providers – must appreciate that clinical leadership and clever managers are not enough. If they are divorced from PPE-led change, then frustration and contention are the likely outcome. QIPP-type reconfiguration – which usually can’t be done without decommissioning and reinvestment – is not going to get any easier. Or any cheaper.  Lay (patient) leaders are integral to the process of leading local change.

Lay leadership is not a magic bullet – no one argues that it is. But without the lay enablers and lay transformers, as David Gilbert describes them, who are able to operate throughout the system, the challenge of reforming the NHS will be insurmountable.


The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing.  Feel free to contact us to discuss the opportunities.


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