As another Patient Leadership Training Programme kicks off , I wanted to tackle one of the most common misconceptions about Patient Leadership – that it is elitist – an exclusive club that is inherently institutionalised (or could be) and that can blunt patient voice.
Those who raise these objections tend not to have read much about it, or to misunderstand what it means.
Patient Leadership is about ‘those affected by life-changing illness, injury or disability being able to influence change by being equal partners in decision making at all levels’. I believe anyone can do that – with the right help and support.
It is about bringing our newly valued and polished jewels of wisdom and insight from the caves of suffering into the heart of citadels of power.
More prosaically, it is about people who have been through stuff, who know stuff wanting to change stuff. In 35 years of this game, I have not met anyone, black or white, poor or rich, who would not be able to do do this stuff. If they want to. It is precisely the lack of opportunities and support available that makes patient and public engagement – as it is CURRENTLY undertaken – elitist.
Patient Leadership rips apart (if you are feeling tetchy today) or builds upon (if you are feeling charitable) traditional engagement modes of (child-parent) feedback mechanisms and (adolescent-parent) representational models.
People who criticise Patient Leadership for being elitist make one or more of several erroneous assumptions.
First they tend to look at the word ‘leadership’ through ancient eyes. They equate the word ‘leadership’ with formal hierarchical and traditional leadership. These days, leadership means far more than that – I am not a theorist, but the intention behind the concept is that it foregrounds collaborative leadership, even ‘servant leadership’ (do look that one up) and borrows more from Brene Brown than Donald Trump. It stresses being able to influence people and change through productive relationships.
Some see the word ‘leadership’ in ‘patient leadership’ as necessitating followers, or having to ‘represent’ the views of others. I see it more as about leading change and that we are all leaders and all followers – every patient leader I have ever met is an inspiration. And the role of a good Patient Leader is to open up opportunities for others, and in an improvement or governance role to make sure there is widespread inclusion and diversity in any engagement or patient experience data gathering activity. I have long campaigned for the destruction of the notion of representation – that the role of a lay rep is a dangerous Catch 22.
People are also tending to see me as a Patient Director as the only manifestation of patient leadership. That a Patient Director is ‘The’ Patient Leader type role par excellence. That is a total misunderstanding of the concept and the role of a Patient Director - I am not there to represent myself or anyone else, but to broker space for equalising power in training, education, research, improvement and governance work and embedding cultures, systems and processes for patient leadership, good engagement and impactful patient experience work.
Just as a Medical Director is not there – should not be there – to ‘represent’ his (sic) medics, rather to uphold the essence of high quality, safe, effective, evidence based clinical care – the principles of good treatment, so a Patient Director is not there as some sort of unionist only protecting the interests of one group or individuals over others – we are there for ‘patient-ism’ in all its manifestations, primarily by ensuring a sustainable focus on what matters to people who use or might use our services, as well as wider community interests.
The model of patient leadership implies creating opportunities at all levels – from peer support, through to improvement and governance roles and should also be about opening up professional roles to those with lived experience and encouraging and supporting them to apply, by making reasonable adjustments and more - perhaps putting ‘D’ for desirable or even ‘E’ for essential alongside roles like Transformation Manager, or Quality Improvement Coach - making it explicit that a life time living with a limiting condition is equivalent to a degree.
People tend to assume that patient leadership leads to a narrowing of roles rather than the fact that it leads to the articulation of new ones and the infiltration of lived experience into old ones.
Patient Leadership is only elitist in the sense that few roles and opportunities are available and investment in building capacity is missing - but this is an indication that it doesn’t really exist yet, rather than a reason for dismissing the concept. It is akin to saying we don’t have power in the system, cannot see it working yet, so let’s keep things the way they are.
In fact, claiming that the notion is elitist says more about the elitist assumptions one makes - about the term itself and about the health care system - and perhaps dare I say it, about oneself. Maybe the mindsets need to shift?
To criticise the concept based on false assumptions or based on what you think it is (rather than critique something once you get to know it) denies the fact that anyone who has been through stuff knows stuff and could help change stuff. It denies the fact that all of us have the potential to speak truth to power, to engage in dialogue about what matters. It denies the potential of all of us to take charge and have more power.
An alternative challenge is that by systemically embedding people ‘in’ the system, it can lead to blunting of independent voices. I have more sympathy for this argument. But my experience suggest the opposite - it is precisely the lack of power in the system that has led to terrible things at all levels.
I don’t think the answer to that is by maintaining marginalisation. It is again like saying ‘We don’t have power – but please don’t let us have any so we can continue shouting about how we don’t have power’. Or double locking a child in her room and saying shout louder and I will try harder to hear your cries. That way more scandals lie.
Patient Leadership by the way does not deny the existence, or need, for people outside the system - groups or activists – to be able to say what they think. The very reverse. But it does – or should – allow for channels of dialogue for difficult discussions to be had - at the heart of the decision making corridors and dark meeting halls.
It should also lead to a deeper dissection of what we mean by ‘independence’. In psychological terms, we move from being ‘dependent’ to ‘independent’ to maturing as ‘interdependent’. Patient Leadership in this light can be seen as a maturation of patient voice. And I recognise we have a million miles to go before we equalise power in that way. La Lucha Continua. It does not either disallow or disavow ‘anger’ or justifiable ‘rage’.
We should not let current system leaders ignore angry voices – we would not have had the Mid Staffs inquiry and a hundred others were it not for outrage. But that does not mean we shouldn’t try to re-balance the power inequities that led to the problems in the first place.
Moreover, Patient Leadership is not an excuse for training patients in talking politely and using words like ‘concern’ ‘appropriate’ ‘unhelpful’ or to help them pack away passion and emotion. The need for ‘hygienic’ discussions about terrible things should be gone. The fear of honesty is more a healthcare system problem than one about patient voice. But patient leadership is about being able to have a proper dialogue that explores what went wrong (or right) in a way that keeps everyone at the table.
Critiques of patient leadership that rest on ‘voice being neutralised’ assume that people aren’t capable of of having those difficult discussions. I believe they are.
It also assumes that we don’t have the wherewithal to withstand the seduction of office - well, that’s on us. That’s on us to reshape how improvement and governance takes place. That relies us on us to seize the language and discourse and say ‘let’s talk about what matters’ not just out there in focus groups – but here. Here where decisions are made about what to do about things.
Of course there is a risk of co-option and adaptation of the terms to suit current power inequities - as they say ‘tell me about it’. I see programmes for patient leadership that are misguided and adapted for institutional needs. I’ve had ideas stolen so many times and have been shafted so many times you wouldn’t believe.
But is that then a reason to give up? Or to ditch ideas? Isn’t that more an indication that we need to change things? Isn’t that more an illustration of how co—option of the ideas are happening precisely because we don’t have the power to shape them?
Another reason for this fundamental lack of change is that we don’t have an (Un?)Royal College of Patients - a collective of like-minded souls at a central level. The various charities and patient organisations are not on the whole led by patients - that is itself a serious indictment of the formal ‘patient and consumer movement’ to which the sector needs to respond.
But we are growing anyway informally. Maybe it’s better that way. Maybe the lack of a unified home allows for the concept to grow and infiltration of the system to happen in a million different ways. Perhaps the diffuse nature – our diasporic mind – serves the cause better? I don’t know.
For me at the moment: It is not the failure of a concept for change that is the problem - it is the LACK of its presence in the system that is - the failure of us to be equal partners at all levels; the lack of systemic investment in building capacity or in creating the right influential roles or opening up roles to those with lived experience.
Undermining Patient Leadership through making misguided assumptions is, to me is a bit like saying the Suffragette Movement was elite because they only wanted votes for posh women.
Challenge the concept, criticise it if you will - that will help hone the movement. But try not to criticise the concept without first trying to understand it. More deeply, try to be aware of the assumptions one is making about the phrase ‘Patient Leadership’ or the concepts and models arising from it. That in essence is one of the arts of being a good leader – being able to question assumptions.
The movement is fragile. Yes it is very amenable to being co-opted and destroyed at birth. But the charge of ‘elitism’ I fear may say more about those who make the charge than the concept itself. By maintaining that accusation falsely, based on outmoded assumptions, you may be helping bomb base camp before we reach the foothills.