For My Tired Friends - don't give up!

by David Gilbert

May 4, 2017

My friends seem tired. Those ‘patient leaders’ – people with life changing illness, injury or disability – continue the slog with the rock up the hill. Those ‘patient and public engagement’ champions, ditto – professionals who continue to make the space for others to have difficult conversations and to influence resistant NHS cultures.

My friends, Simon Denegri and Jess Cunnett, two of the kindest, most experienced, wise and passionate ‘PPI’ professionals have both recently blogged their frustrations. The former about being deemed ‘too professional’ to be a ‘patient advocate’ and the latter appealing to a rekindling of a mindset that values people and simple conversations as the basis for PPI. This latter blog seems critical of the ‘engagement industry’ that can be self-serving and sometimes over-complicates things.

Meanwhile, I have heard about an interesting conference taking place about ‘mis-selling of PPI’ and the possible lack of evidence of impact. I laughed at first at the cleverness of the title and then felt undermined. I know it’s a joke. I know it’s well meant. I know we need evidence.

But it felt to me like another ‘why have I bothered’ moment. I imagined people in a room somewhere dissing what I have done for 30 years. Paranoid? Moi?

At the same time, I know of patient leaders who have been triggered back into illness because of the sacrifices they have made for this outsider cause, this unpaid, undervalued, under-invested in, impoverished terrain of work. I have written about the ‘emotional labour’ of being a patient leader elsewhere. Now is not the time though to brood…

Could these pent up frustrations, these sighs, these outbursts, be signifying a deeper shift in the patient movement landscape? And signal a need to double our efforts? While some of us see immense frustrations in breaching the walls of the citadels, maybe something else is happening too. Maybe this is what they call a ‘tipping point’. An over-used phrase – sorry.

Two weeks ago, 11 patient leaders in our Sussex MSK Partnership came together for a planning day to develop our fragile but emerging network – our merry band. Two have gone away (and come in to the office) to write role descriptions and welcome packs and to help plan the next phase of recruitment. We are developing information governance and confidentiality processes. I am writing guidance for staff on how to work with patient partners – two patient partners will be presenting at our staff conference the week after next on what it feels like to be partners. As one of them said, a long time 'involved patient': ‘ It feels like we are doing something special and different to what we were doing before’.

Meanwhile, at national level, about thirty amazing patient partners are helping to co-design a national patient and carer partners network – slowly, carefully, gently and trying to practice what we preach about how we work together along the way. Watch this space.

And last week, there was an amazing workshop with patient partners and health professionals at the BMJ-IHI safety and quality conference on ‘patient partnerships’, that I co-facilitated with the fab Carolyn Canfield, Alies Maybee and Jonathon Tomlinson. The freshness of conversations to me indicated a real hunger for an international network of patient partners. And Carolyn, Alies and their fellow pioneers are leading the way with a ‘Patient Advisers Network’ in Canada.

So, perhaps it's not all doom and gloom. Perhaps the frustration is a sign that we are getting somewhere, that a new line of resistance is being drawn up – by well-meaning academics who demand evidence which may be useful, but could also stifle progress through an over-reductive approach; by intransigent activists who are not yet in partnership mode, by the unconscious blindness of people in the system who fail to see our value and continue putting up the barriers (we can’t pay you; we can’t invest in training; we just want feedback fodder). Maybe we are just more visible. Can we reframe our frustrations and signs of impact?

Maybe we are at the next stage of the struggle. I am tired too, I have to say. If someone were to pay me to write poetry for the rest of my life (fat chance) I would take it. But now is not the time to stop.

Yesterday was the clincher. I was at a leadership meeting of our organisation. We talked about difficult stuff – about the challenges of shifting the system and holding onto the vision of what we want to do with, and for people who we serve. I was bowled over by the passion, wisdom and insight of those around the table – people that I would have labelled a few years as ‘faceless bureaucrats’. To hear them talk about why they were in this game gave me fresh hope. I thought – I am glad I have fought back from two breakdowns this year to do this work. I don’t care what I’m called – a patient leader, a mental health service user, a PPI professional, a manager, an advocate… Whatever.

So, here we are. A NHS crisis. A world gone slightly mad. And the emergence of something fresh. It is spring after all. Vive la patient revolution. Excuse my French (grammar).



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6 comments on “For My Tired Friends - don't give up!”

  1. Interesting read David & sorry to miss the BMJ-IHI conference. I'm slumped on my settee after doing my local PPG meeting-just another strand-& I'm beyond exhaustion.

    Who is coordinating a patient/carer network? I've been impressed by what is going in Canada & had a call last year with one if the organisers to get a picture of how it works there.

    Appreciate the ray of hope coming through this blog too. Thank you.

  2. I'm sorry you are in a tired phase right now. I am strangely in a high-energy one, but it's not always like that. I hope you can be patient with yourself, and take care of yourself, until the energy comes back. times, There's a Hopi prophecy/poem that helps me during discouraging times, so I thought I'd share it. (I blogged about during a time when I needed help with perseverence here, if that's of any interest: Be well; we need you.

    From the Elders of the Hopi Nation

    Oraibi, Arizona June 8, 2000

    To my fellow swimmers:

    Here is a river flowing now very fast.

    It is so great and swift that there are those

    who will be afraid, who will try

    to hold on to the shore.

    They are being torn apart and

    will suffer greatly.

    Know that the river has its destination.

    The elders say we must let go of the shore.

    Push off into the middle of the river,

    and keep our heads above water.

    And I say see who is there with you

    and celebrate.

    At this time in history,

    we are to take nothing personally,

    least of all ourselves,

    for the moment we do,

    our spiritual growth and journey come to a halt.

    The time of the lone wolf is over.

    Gather yourselves.

    Banish the word struggle from your attitude

    and vocabulary.

    All that we do now must be done

    in a sacred manner and in celebration.

    For we are the ones we have been waiting for.

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