Six years ago, Michael Seres, a champion for patient centred care, Alison Cameron, a consultant in patient and public involvement, and I, gave evidence to the Future of NHS Leadership inquiry. It was led by Robert Naylor, then CEO of University College London Hospital (UCLH). We were part of an emerging community of patient leaders, with experience of life-changing illness, injury, or disability, trying to influence change through partnership working.

Despite discussing patient leadership in depth and making the case for senior paid roles for patient leaders, the panel (no patients included) stated: “we have rejected the suggestion that a ‘chief patient officer’ or equivalent should be appointed to the board of every NHS organisation.”

Since then, I’ve worked as the first patient director at the Sussex Musculoskeletal Partnership (Central), an executive role commensurate with clinical and managing director to: hardwire patient-centred systems and processes; broker opportunities for dialogue between patients/carers and staff in decision-making (at operational, educational, improvement and governance level); oversee coordinated approaches to wider engagement and patient experience work; model collaborative senior leadership principles; work with our Personalisation Care Team embedding shared decision making.

Last year, Lesley Preece, a patient partner at Sussex MSK Partnership, and I were expert witnesses for the National Institute for Health and Care Excellence (NICE). 

The NICE Guidance on shared decision making, released last week, advises that  “every organisation or system, regardless of its size, should….consider appointing a patient director (from a healthcare service user background)… responsible for: raising the profile of the service user voice in planning, implementing, and monitoring shared decision making, especially from those in under-served populations; supporting the embedding of shared decision making at the highest level of the organisation.”

The advent of such a role is the first structural and functional accommodation for true patient power at a senior level in the NHS’s history. It’s the result of extraordinary emotional labour by a growing cadre of patient leaders, “lived experience practitioners” and “experts-by-experience” such as community health champions, activists, system influencers, peer support workers, committee members, improvement advisors, research partners, trainers… the list goes on.

We bring wisdom and insight about the lived experience of having illness, injury, or disability. We know intimately what it’s like to feel vulnerable and powerless, the impact of pain and suffering on our lives, the primacy of healing relationships in care, and what good and poor services look like. This combination of vision, humanity, and authenticity are essential components of high-quality leadership. Add in people’s expertise and competence from professional and family experience, then our potential for helping the NHS becomes obvious.

But, for patients and carers to be “involved” in the NHS means a neutering of that leadership potential. One is left to turn up at focus groups, fill in surveys, or if you’re lucky, make people cry at conferences (then cry yourself in the toilet because it’s triggering). You become feedback fodder. Or you wear a suit and become a “representative,” without clarity of your role, without support, and slotted into narrowly defined institutional committees—often sheer tokenism. 

I’ve discussed elsewhere these failed modes of engagement. This is “patients at arms-length” rather than at the heart of care. 

The advent of co-design means some get a taste of being “improvement partners.” In mental health, there is a welcome evolution of peer support models. But subsequent rungs of the opportunity (and payment) ladder are broken. There have been no embedded opportunities for those wanting to manifest and develop their true qualities. 

When Sussex MSK Partnership made the bold step of appointing a patient director, a few others followed. UCLH did so in their own MSK Pathway. Sussex Partnership Foundation Trust appointed equivalent roles in two directorates. Devon Partnership NHS Trust appointed two associate directors. These were all modelled on the original patient director job description from Sussex. 

But a patient director alone won’t suffice. Our Sussex MSK Patient Leadership Triangle means the patient director’s role is bolstered by a pool of patient and carer partners, who are paid, supported, and trained as improvement partners. This has had an impact on policy and practice, for example, prioritising health equity plans, co-researching remote consultations during covid-19, co-designing shared decision-making training and pain management programmes, peer-led research on shared decision making, transforming admin systems, as well as ongoing participation in training and recruitment panels. 

Patient partner and corporate priorities are now inter-twined; patients facilitate staff wellbeing events—staff say that they have found their authenticity and vulnerability inspiring. Staff have more in common with patients than they thought. The Care Quality Commission (CQC) rated our service as outstanding, partly due to the acknowledged contribution of our patient partners. 

The third apex of the triangle is our patient-centred governance mechanisms. We’ve shifted from a dedicated patient forum to patient partners on each of our core governance structures—quality, operational, and finance. This provides the bedrock of legitimacy and accountability for our patient-centred work.

The NICE guidance seems to have taken our model seriously: “Identify … organisation-wide ‘service user champions’ to work with the senior leader, patient director and professional champions for shared decision making. They should be recruited from people who use services.”

In effect, we have developed an embryonic ladder of progression, from people being feedback providers, to improvement partners, to governance members and finally, to senior roles. I want to see that ladder of progression everywhere. 

I would have liked the NICE guidance to better articulate the patient director role and embed a model of patient leadership. But it’s a great start. And now the NHS—providers to commissioners, primary care networks to ICS’s, local, national, and international systems and agencies—must take the next step in the patient revolution.

People affected by life-changing illness, injury, or disability, must now have real power at all levels of healthcare policy and practice. Patient directors are one embodiment of that systemic commitment to shared decision making.

David Gilbert is patient director, Sussex MSK Partnership (Central)

Competing interests: DG is the author of The Patient Revolution—how we can heal the healthcare system (Jessica Kingsley Press, 2020) He is director of InHealth Associates, where he runs patient leadership programmes, and provides consultancy support for organisations.