A co-production legacy

By Emma Clarke, Director of Services and Grant-Giving, Weston Park Cancer Charity, Sheffield

I have a confession to make: I am not a blogger.  This is my first and may indeed be my last, but you’ve got to try everything once in life, right?  So why do I feel compelled to put pen to paper now? Well, I guess it’s not often one faces a global pandemic only shortly after losing your most trusted friend and mentor, so it feels timely, necessary, personal.

Co-production Week 

Weston Park @WPCancerCharity on Twitter 

Maybe it’s the cathartic process of reflection and pondering I’m craving, or maybe it’s the recording for posterity the events I have been through, what I have seen and what I have learnt.  Or maybe it’s my way of re-connecting to Jeanne Carlin, a love letter if you will, to show her that all she taught me hasn’t gone to waste, that I listened, that I learnt, that she equipped me well and I am forever grateful. 

Jeanne died on the 31^st of January and left a gaping hole in my life.  Over the past few months as, like many, my professional skills and personal resilience has been tested like never before, I have lost count of the times I have wished I could picked up the phone to her, to rest for a short while in her caring wisdom, to move forward better equipped and restored.  Instead I have captured moments – little vignettes – that I know she would have appreciated and I hope they offer you, dear reader, something too.

The world is full of gifts if only you look

We closed the door of our Cancer Support Centre on a Wednesday.  I could feel anxiety in the air as the team collected up equipment and resources to take home in readiness for working there for who knows how long.  This frisson of energy slowly dissipated as one by one I watched the team drive away, knowing their fears would be taken home and remain for some time to come.  It was at the end of that day that I picked up a call to our helpline and spoke to Peter.  His question was simple – how can I get my food shop next week as I am on chemo and my clinical team have told me not to go out of the house?  

Next week will be the 14^th week I have shopped and delivered Peter’s groceries.  I could have easily delegated this to one of the team, freeing myself up for so-called strategic work that becomes the language that accompanies the title I now hold.  But I see it differently. Peter feels like a gift, our weekly chats have helped me see the world through eyes that matter; in a fast-paced environment they have helped me make decisions which feel right.  Jeanne always encouraged me to change my lens, to see the world through the eyes of others, to see human rights at a micro level.  To not get above my station. I did it without thinking. 

When things get tough, connection is your lifeline

It was over a cup of tea (hers: bag dunked for mere moments; mine: steeped until the spoon stands up) that we had the Twitter debate.  I remember telling her I couldn’t see the point, her telling me it enabled connection with her many networks across health and social care.  But it wasn’t only online where she cultivated the power of networks, it was over coffee, dinners, wine; she blended the professional and the personal to the point where the seam became invisible and the creation was all the better for it.  It’s funny how the tougher the days and weeks became during the early phase of COVID, the more time I made for my networks.  They informed me, they supported me, they linked me to others who could help, they showed me my feelings of doubt were natural.  They provided the fire cover when the bullets were raining down hard and fast.

Wear your own lived experience like you would the cape of a superhero

“So how are your family”? she would ask.  We’d talk about the ordinary ups and downs of family life, the joyous moments and the challenges we all face.  We’d exchange experiences of being family carers, the love, the frustrations, the tiredness.  It was only recently on the Leadership for Personalised Care programme that I saw what she had skillfully been doing all along, developing my courage to share my own lived experience, to talk without my voice shaking and to weave this more explicitly in to my professional thinking. 

So over recent months, as I have sat in the garden of my two shielding parents having conversations through an open window, I have married up the personal and the professional like never before.  How did my dad feel getting his shielding letter three weeks after everyone else? What does the word ‘vulnerable’ mean to them as people nowhere near 70? Not that 70 is by any means a definer! What freedoms and liberties do they miss the most? Who would they trust to provide help if me, their only child, was taken ill?  Jeanne taught me that these are the conversations that are happening in homes across the country and that listening to those closest would help make me a better decision-maker, a better leader.  Because my barometer would always be ‘is this good enough for the people I love?’

So what next? Well, as I pass the milestone of one year in the job, I am returning to first principles.  I (along with my rather amazing team) will be listening to – and sharing power with -  people with lived experience. As Co-Production week launches across the country, I am proud to announce a partnership with Co:Create and Viewpoint, two Sheffield-based social enterprises  sprung out of South Yorkshire Housing Association, which will steer us well for whatever the future holds.   

If you are living with or beyond cancer or caring for someone who is, and you would like share your views and experiences to design and decide how we use our resources and assets to make the most difference, then please get in touch emma@wpcancercharity.org.uk or @emilys_pine on Twitter.

When hugs were permitted, and boy are they missed