We Are All Patients: Yes and no

We Are All Patients: Yes and no

A response to Dr Mike Smith, Co-Chair, Patients Association

I asked the Patients Association on Twitter recently, why there were no patients on its Board of Trustees. In my opinion, the Board is made up of people portraying themselves primarily through their professional roles and expertise. No patients.

The Co-Chair, Dr. Mike Smith replied that all Trustees were passionately committed to defending the interests of patients (I believe that) and that all Trustees are, in any case and of course, themselves patients.

Many people on Twitter went on to support my challenge. They added that the legitimacy of the Patients Association was undermined by not practicing what it preaches by putting patients at the heart of its work. The Patients Association has not responded thus far.

This blog explores Dr Mike Smith’s claim that ‘we are all patients’. I hope it also helps others to unpick this ubiquitous phrase.

We are all patients (because we all will be)

The over-riding intention of the phrase ‘we are all patients’ seems to be to help overcome the boundaries that divide us – patients from professionals – and find ways to work for the common human good. I applaud that. But dig a little deeper and it is not so simple.

Sometimes, professionals add that ‘ultimately, we will all get sick, become ill and grow vulnerable’ and point to this shared vulnerability as a way of transcending difference and deepen connection between us.

In a depersonalised healthcare system, staff may themselves feel cut off a daily sense of humanity, so this appeal can tug at the heartstrings. It allows the emergence of kinder and more compassionate work (see, for example, my previous blog and the work on vulnerability by Bene Brown).

But, hang on. Just because we will in the future, all be patients, does not mean we all are now! We will all ultimately become grey haired, maybe bald, and die. But that does not mean I know what that will be like. I may one day take to wearing hats when it is cold, but that does not mean ‘we are all hat wearers’ and that I know what it feels like to wear a hat.

Saying what we are, based on what we will be, is a logical nonsense. If that reasoning is applied to representational politics and I claim to speak on behalf of the sort of person I will one day become, it equates to usurping the voice of people who already live that vulnerable life. Try and understand others, yes. Open the door for their perspectives, yes. Claim to speak on their behalf, no.

We are all patients (because we all use services)

Another interpretation of the phrase ‘we are all patients’ is that we have all used healthcare services or been ill, currently, or in the past. The implication here is we know what it’s like to have visited the GP surgery or attended an out-patients appointment or blood clinic.

However, as one Twitter observer with a long term condition (LTC), noted: It’s like saying that we are all nudists because we occasionally take a shower.

Of course there is a spectrum of ill-health and use of services. But there is a distinction to be made between people who have had life-changing illness, injury or disability or who have a long term condition, and those who visit a GP from time to time. Sporadic users will have a different view of healthcare than those who suffer day in and day out, or whose lives, body and mind have been shattered by pain and challenges to their identity and place in the world. If you have not had a mental health problem, you simply won’t understand the stigma it brings, for example. I am indebted to Mark Doughty for this insight.

It is fun (or tiresome, depending on your view) to navel gaze and conduct semantic debates about ‘what we mean by the word patient’. But when it comes to healthcare policy and decision-making, it is even more crucial to distinguish between the perspectives of sporadic and regular users of services. So, no Mike, none of your Trustees can speak for me.

We are all patients (because some of us are)

Of course, many healthcare staff and clinicians (not ‘all’) are also people with LTC and regular service users. The way in which people reconcile these twin perspectives is fascinating and worthy of further exploration – being inside and outside the system, being both provider and recipient of services.

It is powerful when professionals ‘come out’ about their own suffering. Sometimes, having patients or users telling their story provides ‘permission’ for others to do so. Both ‘sides’ can then explore the nature of human and professional boundaries in profound ways.

However, there is still a difference between those on the ‘inside’ and those who are not part of the system. The latter are often constrained by professional role responsibilities, institutional accountabilities and a cultural mindset that limits possibility for change. During my work, it has seemed to me that many staff seem less able to speak out, challenge or come up with ideas for completely new ways of doing things.

Crucially, patients outside the system need their own voice in discussions about service improvement and governance. Many professional bodies exclude professionals from being ‘lay’ members for precisely this reason.

We are all patients (because we are all citizens)

Another meaning of the phrase ‘we are all patients’ seems to come with broader intent. Think of Simon Stevens slick phrase ‘think like a patient, act like a tax-payer’. Here, the appeal is to our wider vision of community. We are all taxpayers and citizens, with a ‘stake’ in the future of health and we should all ‘pull together’ for common cause.

‘We are all patients (aka citizens)’ is laudable, given that a sustainable healthcare system is dependent on co-production and co-design. And, yes, we are all citizens. But as my work on the Engagement Cycle reveals (www.engagementcycle.org), having a role as a member of the public, citizen and tax payer is about how (my) money is spent and how (my) local plans are developed. My role as patient or service user in pathway redesign calls for me to bring my understanding and expertise about what it is to use services. Being a patient is different to being a citizen.

Why this matters

The phrase ‘we are all patients’ is well-intentioned, but loaded. It can serve to exclude patients, users and carers from power. It is an appropriation of legitimacy.

Professionals have enough influence as it is, without claiming more. They have adequate means by which they can express a connection with their own and patients’ humanity. We are all human yes. But we are not all patients.

Professionals should and can bring their own truths to the table. But please stop hogging the whole cake. For years, patients have wanted to join the professionals’ club. Now they seem to want to join the patients’ club.

This may be a sign of the times, as faith in professional certainty wanes, institutional citadels crumble and the call for change from patients grows louder. We need to work together – patients with their view of their truths, professionals with theirs. It should be a coming together of world views, not a territorial battle. By over-reaching and claiming all to ‘be patients’, professionals continue their land grab, rather than let go, practice shared decision-making and acknowledge their own limitations.

True partnership between professionals and patients, between institutions and communities, can only happen if we both respect our common humanity AND acknowledge difference. It also means recognising power imbalances. Saying ‘we are all patients’ is often an insult to those of us who really know what that last word means and, who should have the last word.

Historically, those in power always argue for the right to speak for the powerless. The NHS can be read as a fifty year battle between clinicians, managers and policy makers to ‘represent’ patients’ interests. The assumption is always that patients and service users cannot do it for themselves.

At an individual level, patients and service users are expected to be adults now, taking more responsibility for their own health, but are treated like children when it comes to being equal partners in decision-making. The use of the phrase ‘we are all patients’ is only the latest disarming tactic that professionals can use to abrogate patient rights.

Many organisations are now more open to patients being at the heart of decision-making, and at corporate governance level on Boards. You would expect patient organisations to lead by example. Many do, and have moved beyond sole reliance on professional or even ‘lay’ members as Trustees.

For a leading patient organisation to claim it speaks on behalf of patients, yet have no patients on its Board raises serious questions about legitimacy. To defend this stance by saying ‘we are all patients’, in my opinion, adds insult to injury. But I am open to dialogue and exploring different truths. How about a chat, Mike?

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.

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