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

by David Gilbert

April 14, 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.  

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5 comments on “Patient Leadership is Dead – Long Live Patient Leadership (a sideways look at Covid)”

  1. For me the effective PL doesn’t only fill-in the missing pieces in the jigsaw across the system, they help link the bottom-up with the top-down. What’s happening now is that we have a new and untried set of politicians trying to lead in a crisis — inevitably they are spending most of their time getting their messages consistent and this more even than in normal times makes the top-down prevail. Local leadership is standing to attention awaiting further instructions, whilst PLs are either socially isolating themselves or cut out of the equation. Most patient leadership in truth is more tokenistic than genuine so it’s too easy to cut them out of the discussion process.

  2. Hi David, you may remember I contacted you to come to our Trust to speak about your work and to try and work out how we encourage and enable a patient leader here. Since then with Covid 19 things have changed and I etc your thoughts in this article. I am employed in out Trust as the Lived Experience Advisor and am now the only person being a permanent employee doing SU input work and have made them aware the senior team that is that I am still indeed the only person left to do any of this work but so far apart from an encouraging email from our CEO have not heard back from anyone else about engaging in work where it affects our Service users in the covid crisis. We have become completely superfluous in our roles and agree I feel we gave taken a backwards step in what we offer. I have explained in my email to them that if they value the input we bring then there is still a place for me at least even if they can't use our volunteer SU people to input into the Trust decisions. They a&e setting up a committee to deal with complex ethics issues around Sus and covid and have applied to be on it but the response we will ask if anything crops up that we think you could help with but that's it. We were making huge strides here but if now seems to be irrelevant in their work which makes me struggle to understand whether they really valued in the first place. So often we are just still considered as patients how ever good and constructive our engagement is and hi feel very sad about it and I do agree I feel we have taken a huge step back. There is still this feeling that they know best.

    1. Yup, that sounds about right. Show them this blog? Tell them that in Sussex MSK partnership, I am now being brought back in for post-Covid recovery planning - helping with any patient-facing comms and beginning to be in on op detail. Happy to talk one day.

  3. Hello David, I do share your concerns about patient involvement and have very long concerning story to tell which is sadly too much for this space due to negative experiences. However, I agree that there will be no progress unless codesign and coproduction are embraced and there is a move away from the tokenism we so often witness and the facade of deciding to trying to appear to involve patients just to 'tick a box'.

    Sadly many people who have tried to share their issues and concerns have lost faith and trust that their lived experience actually means anything to those who have power to influence decisions and initiate the required changes and actually wholeheartedly value their contributions.

    There are so many issues with healthcare that need to be redesigned and unless there is real codesign and coproduction involving ALL stakeholders including patients and their cares and all levels of staff from the relevant service and any related 3rd sector organisations, the changes that are needed to ensure improvement will not be highlighted and embraced and initiated.

    We certainly need much stronger passionate patient organisations and charities who support them who are totally independent of Government and NHS funding, so that they can properly advocate for patients and push for the necessary changes. This needs the proper processes in place to ensure patient advocates and their experiences are truly listened too and that they are valued and can constructively inform the changes that will need to be implemented in our PostCovid world.

    Ensuring codesign and coproduction is embraced will undoubtedly save time and finances and improve outcomes. By continuing to do more of the same and ignoring this valuable resource will be a missed opportunity that will have serious consequences on the future of our NHS as we try to create a better post Covid world that attempts to meet everyone's needs and to ensure that we will leave no one behind.

  4. Thanks for your thoughts. I agree with them all. You may be interested in my book ‘The Patient Revolution’ that looks more deeply into the rise of patient leadership and critiques the current approaches to engagement (including the role of the vol sector that, I believe, has partly contributed to the malaise)

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