Paying the Price: The Emotional Labour of Patient Leadership

I attended an hour’s workshop on the ‘future role of the patient’ at a big conference last week. For 45 minutes, the ‘facilitator’ held forth on new ways that healthcare organisations needed to ‘put patients at the centre of care’. He talked about dialogue, partnerships, empowerment, not once realising how ironic his didactic mode of delivery was. He talked about listening, yet talked and talked…

As my tide of frustration swept up from my toes, the nagging thoughts began. Should I say something? What should I say? How? Was it worth it? Did I want again to be the one to raise the patient flag? Was I a nag? Or could I say it with charm? And as I got more nervous, I felt less and less centred.

Finally, it was too much. I raised my hand and gushed. One of the things I remember saying was that if he was serious about his intent to explore the issues raised, perhaps we could hear from other people in the room. He snapped back by saying ‘would you like to come and facilitate?’. I said no, but suggested that we would probably benefit by tapping into other people’s expertise.

The remaining time, I spent wondering whether I had been right or wrong, constructively challenging, or overly-critical. I felt isolated, vulnerable, irritated and confused.

As I walked back along the long corridor back to the main conference, I was reminded that I had felt this way before. Twenty years ago, after a horrible discharge planning conference, I had walked back to the ward, down a long corridor, feeling isolated, vulnerable, irritated and confused. Then, my ire had been directed towards a host of professionals who had surrounded me and ‘put me at the centre’ but ignored my views.

The world of then had become the world of now. It was all mixed up in my head. The resonance of this latest encounter meant I was living it again.

I am white, male, middle-class, educated. My mental anguish is largely in the past. If I could be triggered in this way, what about those who come from other parts of society and have been more hurt than me? And what are the implications in terms of providing emotional support for patients and carers who want to be part of events, or participate in service improvement or other activities?

Earlier in the conference, we had heard the sensational Camila Batmanghelidjh from Kids Company talk about the latest neurological research on the traumatised children and young people with whom she works. Basically, she said that, in severely traumatised people, the underdevelopment of the frontal lobe (that helps inhibit response to stimulus) and an over-stimulated limbic system combine to determine an (over-)emotional response.

The consequence was that the kids she works with – some of the most vulnerable and hurt in our society – are not able to choose their responses. This is because they cannot distinguish between the current situation they face and the memory of it. The floodgates open and the overwhelm of living both the ‘then and now’ is too much to cope with.

During the conference, several of my fellow patient/users talked about their experiences. Their physical or mental health conditions had flared up, due to the stress caused either by the emotional consequences of participation, or by the physical demands. Whereas many professional participants may have gone home merely tired, my friends spent the whole weekend recovering. It’s a high price to pay.

We talk a lot in the patient movement about the need for support. This usually focuses on the practicalities – how much we should be paid, how access can be enabled, what information we get given. Rarely do we talk about the emotional consequences.

We do what we do because of our passion. That fuel gets us into exciting places. But I fear that many of my friends are burning out. With few spaces (online or offline) to support each other, little investment from professional leaders and even their own reluctance to say no (fearing the missed opportunity), the fuel tank empties. In some ways, some people are being abused all over again.

The work of the Kids Company also shows a deeper level to this problem. Our involvement at strategic level echoes that of our experiences of using the system. Not only does this further reveal the need to model shared decision-making at all levels, it also introduces a deeper element of involvement. Only those who really understand this deep sense of vulnerability can offer the insights needed to change the system. The sensitivity of patients is both a blessing and a curse.

If professionals are serious about working with patients as partners for change, they need to recognise what we bring, as well as what we need in terms of emotional support – this is as true at the strategic as it is at the personal level. We talk about the emotional labour of being a healthcare practitioner. This is a relevant phrase also for patients wanting to be partners in healthcare.

As one of my dear friends once said when I was at my worst: ‘You are stronger than you think you are. But not in the way you think you are’. In the meantime, I hope my friends have recovered. A weekend in bed is a high price to pay for unsupported involvement.

If you liked this blog, maybe check out some of the others at futurepatientblog.com

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8 thoughts on “Paying the Price: The Emotional Labour of Patient Leadership

  1. Many thanks for this powerful and salutary blog which absolutely hits the nail on the head. I’m somewhat red-faced at seeing aspects of myself in this (I facilitate workshops!) – it’s a really useful reminder of the inequalities that infect all patient engagement initiatives. I’ll share it with all and sundry, and I’d like to add it to our Co-production Wales web-site if I may.

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  2. Thank you for your honesty about your experiences. I hear much about this but little about support. I would welcome a conversation with you.

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  3. Challenging and thought provoking as always. I’m not a patient at the moment, so I can’t comment on whether it’s spot-on re: how many feel, but I suspect it is. It will prompt of fair amount of self-reflection on my part and make me think about how we are emotionally supporting the patients who are helping to lead our improvement network. I hope you will have an opportunity with other patient leaders to set out a very clear vision for what the ideal looks like and help build it.

    A simple way to begin to address this may be asking EVERY patient who is asked to contribute/share their expertise: “how can we work together to be sure this is comfortable, meaningful, and worthwhile experience for you?” or “are we planning this together in a way that makes you feel respected and like you are part of the team?” And then act on the feedback received. Simple human stuff that we so often forget.

    Side note not meant in any way to diminish any of what you’ve said: trying to enhance patient leadership can be emotional for all involved. Some clinicians/improvement leaders are trying very, very hard to do a better job including patient partners and are working in systems that make it challenging. That can be very draining, especially for those who went into these fields because they wanted to work closely WITH patients. And speaking only for myself, to be really honest, there are even fleeting feelings of guilt that we are trying to do improvement work at all as “non-patients.” So again, all parties involved checking in with each other to see how their partnership/collaboration is making them feel can go a long way in navigating this tricky ground together 🙂

    Lovely blog!

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  4. Excellent post–you’re getting at the murky side of advocacy, and the things we’re rarely allowed to talk about. But I have certainly thought about this topic, and have had similar experiences of having being tokenized, like you were, trigger memories of other situations in which I was, as a mother of a child with extremely complex needs and multiple vulnerabilities, lacking in power and options, yet expected to remain positive, friendly, solutions focused, etc. Posts like yours help us simply be aware of the emotional costs of doing this work, and hopefully allow a dialog that will allow us to continue without burning out or harming ourselves. Personally, the work that is being done by Parker Palmer and the Center for Courage and Renewal has been helpful for me, as someone who is looking to remain courageous enough to speak up when it’s needed, but also healthy enough to continue to do so for a long time. I truly hope that we get the chance to meet soon.

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