Sunday Thought June 7, 2015: Boxes, Labels, and Survivor’s Guilt

Grieving means I often feel emotional. I feel especially emotional this morning after watching this film of Alison Cameron’s Plenary speech: From Patient Voice to Patient Leadership at last week’s NHS Confederation conference.

The word ‘inspirational’ is often banded around so much it can lose its true meaning, but Alison is to me the very definition of it.

To give you a bit of background to Alison’s story, her biography on the Kings Fund website says:

Alison is a graduate in Russian who ran medical, scientific and humanitarian projects in the area affected by the Chernobyl nuclear disaster. Her career was cut short when she was diagnosed with post-traumatic stress disorder after her colleagues were killed in the course of her work. The consequences included homelessness, multiple admissions to hospital and identity loss. Alison resolved early on to put her experiences to good use and in the process started to reconnect with the assets that being a passive recipient of ‘care’ had frozen.

Alison now works as a consultant patient leadership and effective public engagement.

In her talk, Alison talks about how we are more than the labels we attribute to ourselves and to others. She talks with passion about how we need to end the tokenism of patient engagement and work together: staff walking in the shoes of patients, and patients walking in the shoes of staff so we can understand one another’s challenges. That ‘putting the patient at the centre of their care’ should have genuine meaning, not become another slogan. She uses the analogy of boxes: to break down these barriers while they are still made of cardboard, and before they become concrete silos.

Listening to this, my heart was filling with passion and enthusiasm. Such resonance: our stories are so different, yet so similar. That wonderful “Me, too!” moment.

Then the emotional climax, for me – the motivation that is survivor’s guilt. I work so hard on Hugo’s Legacy because I am all too aware that I am alive, and he is not because he was born far too early to save my life. I am all too aware that my story could have ended very differently. I know, rationally, that Hugo was born when he was to give him the best chance of life – but there isn’t much room for rational thought in the aftermath of trauma, bereavement, and living with grief.

Alison’s story inspires me to keep on going with #HugosLegacy, and with #MatExp. I have so much to contribute, I too want to be a patient leader: sharing and promoting my values about the care parents like me need and deserve to help all parents in situations like mine have the best possible experience despite trauma, uncertainty, tragedy, and loss.

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5 thoughts on “Sunday Thought June 7, 2015: Boxes, Labels, and Survivor’s Guilt

  1. Gill Phillips - Whose Shoes? says:

    Very moved that two of the people I regard as truly inspirational have come together through the growing social movement of positive people trying to use their experiences to help the world of health and care and wellbeing (so much wider than any ‘services’) improve for everyone. Well said, Leigh – I hope you two get the chance to meet in person before too long. xx

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  2. Mummy Writes says:

    What a powerful and positive post, Leigh! I’m not surprised you’ve been inspired by Alison, she sounds remarkable. It’s true that you need to find a channel for your grief and I think you will do wonderful things for #matexp

    Like

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