Dear Friend - a letter to Patient Leaders

by David Gilbert

September 14, 2016

Dear Friend

You care. That is your blessing and your curse.

You have fallen, been scarred, changed at the core by illness. Your identity has been stripped and you are a refugee from the old country of your body and mind.

Not only do you survive, not only do you take small and bloody steps towards well-being, you have chosen to try to change the world. Or at least a small part of it called healthcare. I do not know why. Perhaps it is because you believe that others should not have to go through what you did. Or perhaps it’s out of gratitude and/or the desire to gift your learning.

As a ‘patient’ (that word that we will continue to contest), you know that you are not merely an expert in your own condition. You have witnessed your own suffering and those of others. You have (humility allowing) an angular insight into being human & a glimpse of shared humanity – your ego may have broken a little and you are kinder. Let’s hope so.

If you are allowed into the corridors of power, you will certainly see through the games that people – powerful people – play. You will know that the words they use are a cloak to blind you with. You will threaten them – the experts – because of who you are, how you behave and through your passionate curiosity.

Some will welcome you and you will make good friends and allies. They too see the possibilities of a new way of doing things – a new way to share power – that everybody could win if you work together. But these people are still few.

You can both see that being vulnerable, fearful, uncertain is a path to kindness and compassion – that being ill is an insight into being human. You can tell if people are kind or not – you have a radar for authenticity at the decision-making table. No wonder you are a threat.

You can tell them, if they are able to listen, about what it is like to lose your identity and who you thought you were. ‘I worked, and now I don’t’. ‘I could do that thing and now I can’t’ ‘I was at ease and now I am not’. I was someone, and now I feel like nobody. You can bring so much more to healthcare than discussions of which treatment is the right one (though you can do that too).

You see power playing out everyday in GP practices (as you wait to be called in) and in hospitals (in your pyjamas). You see who has power in society and who has not. And see social injustices close up, perhaps in the psychiatric unit, or at the Job Centre when trying to get back on your feet.

You know what good and bad care looks like – you have a ‘vision’ (that’s what the experts call it) about what healthcare could look like. You know you want to be treated as a human being and not a number, you know the basic things that matter to all people who use services (not just in our own ridiculously titled ‘pathway’). You have seen dignity and respect shown to you by many healthcare professionals, but you have seen bad stuff too.

You know what it feels like to to receive an appointment letter that says ‘due to high demand, please keep your appointment’ and think ‘well, if that’s how they talk to me….’ I wonder what their care is like? You know how much it means to be offered a ‘convenient appointment’ and that someone asks you how they can support you. And when it comes to things like information, explanations, good relationships and shared decisions (let alone good treatment), you can spot the good stuff from a mile off.

If only those in power understood the passion and commitment you bring – you care. You are the only ones with real ‘skin in the game’. You bring new ideas, new ways of seeing problems and can help change healthcare practice for the better.

You will eventually refuse to be feedback fodder, to fill in meaningless questionnaires, attend focus groups  where reports will sit on the shelf, be a token representative in conversations that lead you up the garden path. You will cry out for different ways to have your say, and if you're lucky will stumble into a wondrous garden.

So, you have passion, humanity and vision. Like it or not, you are a leader. Not in the old way – leading loads of folk as some sort of authoritarian, but you have everything it takes to work with others as a partner for change.

And yet, and yet...

You care – that is your blessing (and what got you into this work) and your curse (and what the work does to you at times). Of course, there are the good moments, the exhilaration, the payback of being listened to, or better still being able to change something. Yay!

But it can come at a cost.

You are frustrated, you may not see things changing. You get little support, it’s a constant uphill battle – you are Sisyphus. You are alone, you get triggered. Because of your passion and sensitivity you get hurt. You have no team, no one to talk to. You go home to bed and think is it worth it? Maybe you have friends you can talk to on Twitter – and between the euphemisms there, you spot the gossamer web of likeminded people. And you connect. Yay!

But you are tired. This matters so much. Perhaps too much. You wear your heart on your sleeve. The emotional labour is too much. You are still playing the game of perennial outsider - it is tiring constantly to be the 'critical friend' and you want to belong. But when you feel like that for a minuscule moment, you are accused of 'going native' (oh the insults!).

You have difficulties with boundaries between the personal and professional. When the adrenaline from difficult meetings or exciting events wears off, you cry in the toilets.

And too often, you can’t see things changing. You have to be reminded sometimes that the feminist movement took decades and is still trying to change things. That things go backwards as well as forwards – there are the Trumps of healthcare still at large. And in a recession and period of frenetic change and complexity, people lose sight that people like you can help. And the budgets for the work you do are…. cut. And oh boy does that remind you of rejection (in your life, in your care and treatment).

How do you look after yourself? How can you balance the work (all consuming) with the life of looking after yourself (all consuming). What gives?

I don’t know – please tell me. It’s more than mindfulness, a bit of poetry here and there, walks in the country, though all that helps.

It's more than learning resilience, though I am sure a thicker skin would help. But even if you could do that (I am not sure I can) wasn't it your sensitivity and passion that was the fuel in the first place - wouldn't you lose your mojo?

For me, I think one way is to come to the paradoxical truth that the work matters and yet it doesn’t. That you have to continue to reach for the stars, but be OK with the moon. Keeping the professional expectation high, but the personal one a little lower.

That the work you do is only a project – only an experiment – that you are planting only one seed amongst many others. That’s the aim for me at the moment, as I step back into the role of Patient Director that has almost done me in. That means taking off the superman outfit. I am not good at that. But I know it is either that or... Actually I hate to think of the alternative just now. I almost saw it six weeks ago as I was marooned again.

I am not sure how you get to that point. I am still struggling. The freight of the work is too heavy at times. The sense of responsibility too much. But we have to find a way of lightening the load – being gentle with ourselves and with each other - yet carrying on. If you have any answers, please let me know.

Be gentle. Carry on. Good luck.

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9 comments on “Dear Friend - a letter to Patient Leaders”

  1. We need to meet once a year and provide succour (is that the word?) to each other. Receive energy and give energy...though not like those big NHS events that sap energy! We can meet and come out replenished... Just not in London please! Great blog David! When you get back to work ...lists and being good enough always worked for me! X

  2. David this made very difficult reading and I am sorry that your passion to change things has taken such a huge personal toll. Selfishly we need you back, we need your expertise and insight. Without you we have begun to understand, and have seen first hand the huge barriers that you have been confronting day after day. What you have written resonates, we share your passion and over whelming frustrations. I should have been a better ally. Keep looking after yourself that is the priority.

  3. Wow, this really resonates with me, I've been trying to share these views for 5 years but mat able to articulate it. Thank you for sharing and being so inspiring, today you have just given me the reason to go on, " I care". Wish we could build our own establishand have the power to lead as a community. It is such a lonely place.
    When your not the only one it gives you strength and belief to carry on. Big Thank you"
    I am walking tall.

  4. Spot on David, and as a Carer of a child with lots of health needs, your letter can quite easily be written to us. It all made sense, and this in particular "It’s more than learning resilience, though I am sure a thicker skin would help. But even if you could do that (I am not sure I can) wasn’t it your sensitivity and passion that was the fuel in the first place – wouldn’t you lose your mojo?" is the bit I relate to the most.
    My sensitivity and passion is the thing that breaks me, because I can't let go. I have tons and tons of resilience, but I'll never have thick skin. So when I know I'm nearing the point where I'm about to go under, I have to stop the activism, campaigning, co-production, whatever you want to call it, because it's all part and parcel of the reason I'm going under, and it's difficult maintaining a reasonable, rational, 'professional' persona to people who could potentially then describe you as a difficult, aggressive parent with a horrible attitude! Think what I'm trying to say is for me it's all or nothing - if I didn't have passion, I wouldn't/couldn't do what I do (and I'd be healthier and less tormented by the crap my son faces).

    I really enjoyed reading your blog post, take care


  5. Dear David,

    I've just read this post.

    It was like you had stepped inside me and found the words, emotions, frustrations and pain, sprinkled with the passion, joy, dreams and sadness of the last 19 years of my kidney journey.

    Written so eloquently and beautifully expressed from a place that only we as patient
    leader could truly comprehend. It bought tears to my eyes.

    This, as you say is such a lonely path that we tread.

    I have spent many years asking medical professionals and other patients if they know anyone else 'like me'. And the answer has always inevitably been "no Zandria". I've searched for the opportunity to connect and share with others, someone, anyone, but like they said "No Zandria".

    What I have just read was like chocolate fudge cake with custard. (I'm a diabetic) Just a treat.

    David, in the English language we have only "thank you", which on occasion feels wholly in adequate, so "thank you" x 3, for just about everything you have been kind and generous enough to have given me in probably just 2 weeks of making contact with you. You have made a remarkable difference to my work and life in such a short amount of time.

    Just, thank you.

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