Patient Leadership is Dead – Long Live Patient Leadership (a sideways look at Covid)

This #MadCovidDiaries is a reblog from David Gilbert’s excellent blog published on the 14.4.2020

Rather than reinforcing our reverence for the heroic – our regression to applauding the tough guys who sweat it out on the frontline – this virus might serve to amplify our common vulnerability, fallibility and suffering. But also the jewels of wisdom and insight that are dug from the caves of suffering. Lockdown can unlock our human potential.

In many senses, this crisis is a societal macrocosm of the individual lived experience of being affected by life-changing illness, injury or disability.

That is not to say that this virus has equalised humanity. It hits the poorest hardest and exacerbates inequality.

But those of us who have been banging on about patient leadership or ‘lived experience’ or ‘experts by experience’ know that, along with the pain of suffering and loss of identity and purpose, comes a deep knowledge of what matters in our lives, the primacy of relationships, and vision of what good care and treatment looks like.

On the one hand, those people living with long term conditions are suffering hardest as a consequence of Covid. And are also affected disproportionally by societal measures to contain it. But, paradoxically, many are well-used to isolation, marginalisation, lack of agency and connectedness that others are feeling for the first time. A few people with mental health problems – a minority it should be stressed – have even reported feeling that their symptoms have been alleviated.

We know what this is like – we know what being alone feels like, the fear always in our heads, uncertainty, loss, dependency, guilt, helplessness. Welcome to our territory.

So, it is ironic that our expertise is again being marginalised.

On the one hand, it is understandable that the urgent trumps the important. Patient and public engagement, like its close cousin, diversity and inequality work is seen as dispensable at times like these. Crisis-driven management changes means that national, regional and local policy making in health and social care has been bereft of patient, user, carer and citizen input.

I worry that patient leadership as a whole has taken a backward step. I worry that it might be dying, or dead. I see no evidence of patient leadership at any level of strategic or operational decision-making during this pandemic.

However, the cautious optimist in me welcomes some countervailing trends. Firstly, that community connectedness has risen visibly to the fore. I don’t need to rehearse the ways in which this is happening. It is obvious to us all.

Secondly, patient-professional interactions are changing. This is partly the result of the shift to virtual consultations in primary care and some parts of secondary care. I have spoken to several clinicians over the last week or so, and several of them report intriguing shifts in the dynamics of these sorts of encounters. One stated that the relationship “has become more equal. They see me in my home, and may feel more comfortable. I have to change my way of using language and, in some ways, things have become more patient-centred, with us agreeing that who does what needs changing”.

May this ‘disruptive innovation’ be sustained! I know one GP who is talking to his practice about this, and is very mindful that not all patients are IT-literate. He is hopeful.

Thirdly, there is a cadre of health professionals whose lived experiences are valuable and needed more than ever right now. Professions and professionals should take stock of what they have learned and how suffering augments their expertise. And here I am thinking of the work of Natalie Kemp and others who have founded In2gr8mh.

Fourthly, the activating of peer support networks in mental health trusts shows just how integral this emerging work force is for the future. My amazing friends at Sussex Partnership Foundation Trust are leading the way!

The secret will be to connect these things together, so as to create a ladder of opportunities (alongside learning and support at each stage) for people to lead – from leading their own care, to supporting others as peers, then on to collaborative leadership roles in improvement and governance. This ‘Patient Leadership Ladder’ will help embed an infrastructure that is critical to a sustainable engagement model and the well-being of healthcare systems.

Meanwhile, there is a further struggle just to get back to where we were before this crisis. There has been a justifiable centralising of the NHS that lends itself to command and control styles of leadership and a reinforcement of existing power structures (doctors, hospitals, big pharma). But we cannot allow that approach to be locked in while we are locked down.

We need soon to re-inject patient leadership into policy and practice – now more than ever, we should have learned that valuing wisdom and insight gleaned from the caves of suffering is the key to NHS decision-making. Without that, we will lurch from one crisis to another.


(With particular thanks to Richard Pemberton, Natalie Kemp, Simon Mudie, Jo Hemmingfield and GIles Hazan).

If you liked this blog, you might also like this one: Valuing What We Bring – an open letter to NHS England

(C) 2020 David Gilbert

David is author of The Patient Revolution – how we can heal the healthcare system and his first full poetry collection The Rare Bird Recovery Protocol is now available from Cinnamon Press.  

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!

One thought on “Patient Leadership is Dead – Long Live Patient Leadership (a sideways look at Covid)

  1. ‘valuing wisdom and insight gleaned from the caves of suffering is the key to NHS decision-making’ – I am curious whether there is some system that stores ‘wisdom and insight’ – and that the contributors can push instead of of the consumers having to glean. That way, both contributors and consumers can at least have a shared source of truth from which a shared dataset can be used to put forward continuing improvements in policies targeted correctly of course.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: