Peer Leadership Academy, days three and four.

It seems like the last month has passed by in a flash and I found myself travelling back to Loughborough to participate in the second installment of the Peer Leadership Academy co-produced by the lovely PeopleHub and NHS England.

Considering how surprised I was by the first session I had less expectation and more anticipation about what might take place this time around. We had a broad outline, but given the unique nature of the experience, shaped very much by the contributions of my fellow cohortees, it was not possible to guess just what could unfold.

We settled down more quickly this time as everyone knew each other and dynamics in the group has been previously established. In the first two days in May the focus had been on introductions, knowledge sharing and really understanding just what Personal Health Budgets and Integrated Personal Commissioning were from a bird’s eye point-of-view.

This time around, much was given to individuals telling their own stories to the group, firstly as a means of receiving feedback on how we all did and also for us to understand more about each other’s own experiences. The diversity of the conditions my fellow participants deal with is vast, encompassing a range of progressive diseases, different accidental injuries, as well as those who care and advocate for family with similar conditions.

The overall aim of the academy was beginning to become clear to me, and also to each one of us who was taking part. We were beginning to ‘get’ just how powerful a change the personalisation of care and health was going to be. This was both in the differences it had made to us individually, in terms of control and wellbeing in our own lives and also how transformative and potent it would eventually become in the NHS when embedded.

Sam Bennett, the Deputy Director Personalisation & Choice, Head of Integrated Personal Commissioning & Personal Health Budgets for NHS England devoted a couple of hours of his time to present and answer some pointed questions about his team’s work in relation to our own lived experiences on the coalface. I thought he answered them well and took feedback in good grace. It is a shame that other officials in many of our organisations are less willing to be placed in the limelight as Sam was by us.

The last afternoon was particularly emotional for me. I was very tired, having slept badly the night before.

Witnessing the stories of two others in the group, who frankly dealt with more daily challenges than I do because of the physical nature of their conditions, made me realise that there was in fact hope to be held.

For much of the last five years, life has been about a day-to-day existence, with so little ability to make plans that there becomes no point in trying to reach for anything beyond getting past the next 24 hours. Seeing the pictures of others who have lived with their conditions for far longer than me; who had set up companies and charities, travelled and developed relationships had a profound effect. The emotion I had been carrying welled up, and I broke down. The experience was very cathartic and shared by many of us in the room as we carried similar burdens. They are heavy but their constant presence anaesthetises you to them. A reminder can be like letting the dam go, and I had a bloody good cry. I think that we bonded in a way that was quite unique through this.

Living with a long term condition which affects every area of your quality of life is something you cannot comprehend until you have it. Despite the diversity, the similarities in the challenges we had faced and had overcome or were working on, were startling.

We realised collectively the importance of our contribution as peer leaders. Many in the room had overcome personal challenges and has been pathfinders for others; forging ahead when what we needed or wanted was not available. Others of us were still finding our feet. Despite being something to be proud of, being an innovator can add to the isolation and loneliness that is already present with a long term health condition.

IPC focusses on the need for peer support networking, and that afternoon showed me how often peer support can be poorly aligned along geographical proximity, or diagnoses for example. The real difference is made when peer support is less contrived and people who have deeply personal, shared experiences are brought together with sensitivity.  I am so pleased to have been able to connect with my peers in such a way. It was a deeply moving experience, and one that touched me in many ways. I am still much further behind others whose story I heard that afternoon, and finding the strength to keep going when you don’t know what the end point might be is hard. Seeing others being where I wanted to be, and hearing the insight they gained along the way reminded me, first to keep positive and second to enjoy what I am learning as I travel to wherever it is I am going to end up.