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Friday 25th May 2018

What A Difference A Day Makes

5th January 2007

16012007_margaret.jpgI was invited back to see the completion of a three-partner pan-network project for which  I had previously been the nominated project officer under the Interreg 3a funding stream.  The EU provided matched funding to two UK networks, who in turn were supported by the Cancer Services Collaborative Improvement Fund monies.

The conference was the culmination of the previous two years’ work within the scope of the Interreg 3a project, and the fulfilment of one of the outset objectives, due to my previous involvement and I was invited to write up the conference experience and overall project delivery.

The conference location was deliberately chosen to allow the opportunity for all three networks – the Kent & Medway Cancer Network, the Sussex Cancer Network and the RĂ©seau Onco-Normand – to undergo a journey away from the familiar and into a shared territory in which the conference experience would be co-created. Within this was held the recognition that this is the experience of the cancer patient’s journey from diagnosis, to treatment, to cure and care.  Significantly, on the outward journey from the UK certain challenges arose; not least Operation Stack. A blockade of the French ports by French port workers, which had a knock on effect into the UK road routes to France, and the unexpected fog (brouillard) that descended from nowhere on the French side.  The experience of the fog may be seen as a metaphor for the experience that cancer can have on the heart and soul of all those concerned on the cancer journey.  Once in the fog, trust, hope and a determination to get through prevailed; as did the unspoken doubt, fear and uncertainty of the travellers.

Translating the idea of holding a patient-led conference into the reality and resounding success that then transpired was a feat of inter-partner collaboration.  Asking patients what they wanted to feature and how business was to be conducted paid dividends on the day and suggests that future patient involvement will unleash hitherto dormant talents for the benefits of patients, carers and staff.  Initiatives such as The Expert Patient Programme, Cancer as a Long Term Condition and the soon to be developed Cancer Coach Resource Tool (sponsored by Macmillan) will demonstrate that collaborative partnerships between the lay and professional participants on the cancer journey have much to gain by challenging workforce assumptions and by sharing expert knowledge, such professional knowledge being tempered and expanded by the wisdom of the patients themselves.

The main patient conference facilitators led the day, held to time by “the keeper of the bellâ€?, another patient representative.  The main programme included the features of Patient Involvement locally and nationally, a viewing of the Macmillan DVD “Breaking Bad Newsâ€?, and two short presentations by the Director of Cancer Modernisation, and representatives  of the French National Institute for Cancer.  A Cancer Journey was described by past patient participants, in which the complexity of the journey was revealed, along with some of the highs and lows of the cancer experience. The sharing of such a personal experience was a much valued contribution, highlighting for the professionals present the human cost and involvement that is often hidden in the terminology of 2 week waits, planning, MDT reviews and that the end resides in the “cureâ€?.  My story becomes our story, and through it we are all wiser and richer.  This is something to remember given the suggested current climate of scare stories about scarce resources, reduced investment and postcode lottery treatment allocation. The richness of experience is ever-present.

One of the recurrent themes of the day was that once cancer was “curedâ€?, its impact did not stop.  Reverberations continued around the loss of companionship post chemotherapy completion, the realization that physical changes continued after active treatment had ceased, and the impact on the carers was raised as an area in need of future support.

16012007_shirley.jpgAnother of the highlights of the day was the workshop provided by Michael Angelo Petrone on “The Emotional Cancer Journeyâ€?, providing, in Michael’s own words, the opportunity to “colour our feelingsâ€?.  Within the workshop, participants were led on an inner journey of outer emotional expression using colour and artwork to give voice to silent feelings.  Real-time simultaneous bilingual translation was achieved by the use of headsets that alternately provided translation into English or into French.  Art provided a medium by which all could participate in a common language.  To this end, each delegate pack contained a leaf, to be decorated either in the workshop itself, or at any time during the course of the day.  Each leaf had a ribbon to allow it to be attached to the “Tree of Lifeâ€?.  Both patients, past and present, and professional participants were offered the opportunity of expression - one that many took with moving consequence and healing potential.

Uniquely, the Emotional Cancer Journey Workshop combines the patient and carer world with that of the professional, illustrating the shared challenges, hopes, fears and pain that may exist in both, the aim being to maintain boundaries of professional safety whilst challenging boundaries that keep the self from itself and each from the other.  The emotional availability of self expression has long been recognised as a means of healing, alongside the accepted therapy regimes.

Obtaining a live, suitable tree from France during December was no mean feat of manifestation.  Yet, on our arrival at the conference centre, there it was, propped up forlornly against a wall.  Its transformation into a live record of expression and hope was alchemical in nature, and beautiful to behold. Symbolising that tapping emotional intelligence reveals, as did Michael Angelo Petrone’s Tree of Life idea – what’s in a name – literally, Michael’s unique ability to reveal “The Angel in the Stoneâ€? within each one of us.

We are always changed by our relationships, consciously and unconsciously.  Cancer calls the person into a relationship with themselves initially and with others along the way.  As patients, carers or professionals, we are changed by the relationships we have with each other, soul imprints, whether we recognise it or not.  A day out of time, a patient led conference provided a space to honour, alongside the day-to-day business of the agenda, the sacred space that is being human, being frail, being vulnerable, the human being.  A place often lost in the pace of health system reform and the burgeoning change agenda.  The conference provided a space for reflection and of reflection, the outer experience of the world being a reflection of the inner.  Making connections may be done first with oneself, and then with the other, or vice versa. 

From the experience of the patient-led conference in Rouen, the verbal feedback on the day, the official feedback received since, the Interreg 3a project entitled “C’est possibleâ€?, my original project title suggestion and my only two French words at the time, was a success.  Measuring success is often accomplished in outcome data; to this end, the formal feedback validates the initial vision and the tangible outcomes of the day.  This patient-led conference was one of a kind, crossing professional and personal boundaries, crossing networks and ultimately uniting the essence of cancer network collaboration.  The point of network working is that together we are always more, always enhanced and always challenged out of our solipsism and into the opportunity of co-created working for the benefit of patients, carers and staff.

The conference itself gave all participants the opportunity of being as well as doing, balancing the need to allow participants to participate, whilst acknowledging the arduousness of the experience, due to the level of emotional intensity present.  The outcome of a patient led conference was an objective set, as previously stated at the outset.  The unintended consequences of three networks working together across common and uncommon pathways of care have been as important as the delivery of the objectives.  At the outset, you don’t know what you don’t know;  by the end all is revealed.

The future of the Interreg 3a project is in its end delivery.  Further projects will be identified and submitted to the future Interreg 4a stream.  Interreg aside, the overall project experience was one that was thought provoking, innovative and had a grand vision on a grand scale.  Delivery was through individuals, both lay and professional.  Patients leading, deciding and demonstrating their capability to deliver alongside their professional colleagues, Making Connections and Creating Partnerships was a fitting finale.  During the conference evening dinner recognition and thank yous, I was thanked by the patient representatives for my “initial visionâ€?; it was good to be recognised as a fellow traveller and collaborator.

 Images are used courtesy of MAP Foundation (www.mapfoundation.org)






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