Occupying the spaces for transformative change

There is an audible hum across our city just now. The festival in Edinburgh is always heady stuff, creativity crackles, all the senses are tested, choice of entertainment abounds and there is never enough time to do it all it seems. But this year we have the additional hum of political conversation about the Scotland we want in the future. I have never known such inquiry and engagement before. Even as I write this I get “goosebumps”, seeing a nation alert and listening and awake to possibility.

I have been asked to speak at an event on how we keep people engaged after the referendum, a vital question I believe.

It struck me that it’s the same for teams in organisations, for public health campaigns, for enabling wellbeing too not just in individuals but also in their communities because it’s  about ensuring people have a voice, it's about listening, being responded to and knowing you have influence on your condition, your life, your community, your organisation and even your nation. In many ways it’s simply about trust and letting go of control. What can affect our wellbeing most of all is a sense of not being in control, of not being able to change anything.

Perhaps my scariest times have been taking the first step after a cancer diagnosis on to the runaway train, not knowing its destination and feeling unable to influence that. Once I could, a greater sense of calm returned. When I'm coaching people, my role is often how to enable them to see their options, to understand that they do have choices and that they can believe in their own ability to achieve the transformation they seek. It's always a joy to be part of that journey whether that's with individuals, organisations or communities.

So my key message will be keep listening to those communities who have come together. I put the question out on twitter and I loved the advice from Cormac Russell ofABCD, “to discover the spaces where people have had the most transformative conversations, then enable them to occupy those post referendum.” We would do well to heed that advice, whatever the outcome.

Health care has become part of the debate of late and there are many health and care providers who are also undergoing unprecedented change just now. In Scotland that change is aimed at integration and requires different ways of working. In England the pressures on top of that are around commissioning of services and the real concerns about a privatisation agenda. They also want and need to have the transformative conversations, recognising beyond the political debate there is a big job to be done and only doing what we have done previously quicker won't be enough.

 In Scotland we are responding to this by developing the Health and Social Care Academy to enable those transformational discussions, focussing on those relational aspects of change, informed by lived experience. I'm delighted to be a champion for Health and Social Care Academy in Scotland and as such I'm always alert to work from elsewhere to inform this. And so it was with interest I read an article about the story of Dr Cosgrove from the Cleveland Clinic.

TheCleveland Clinic has come to my attention before, in part as a result of their excellent videos. The focus they have on empathy and deeper communication stands out in a sector in our western world where strangely we still seem rather reluctant to talk about feelings. Especially if it’s our own feelings, we are still a bit inclined to squirm in our seats at the thought of any disclosures. But their videos do just that, they remind us we aren't just workers in a service, we too are part of that vulnerable community and that shared experience is valuable information for how we want to grow as a service.

Interestingly it was personal feedback for Dr Cosgrove that helped him reform in such a successful way. It stimulated him to prioritise empathy in the service, recognising it as the magic ingredient (that previously he had boxed away as a form of self-protection). This lens helped him look at the complex systems in new ways, identifying that the person’s experience was affected by everyone they came into contact with. Consequently they now describe every worker in the system as a caregiver. Dr Cosgrove insists that deeply caring about people--patients and employees alike--is at the root of all their success. Now that's a lesson to learn from- and not just in health and care.

Reasons to be cheerful.

Family, friends, and celebrations are all to look forward to this week and great work projects too. And not only have we got tickets to see the stunning Camille O'Sullivan this week at the fringe, we are going to see "Playing Politics" too. Music and politics, that's my perfect week!

Getting to know me ....and Robbie

Robbie on the day we got him.

It's  a few years ago now that I was heading out the door for a weekend and glanced at our dog who was staying behind with a friend. I noticed a trail of blood coming from his mouth. A further examination showed a growth and an immediate trip to the vet confirmed it was serious. Likely a cancer.

Robbie the dog was our very much loved golden retriever. We had got him after an awful few years when I was recovering from cancer and my dad had died from it too. He brought the laughter back in our lives. You could rely on that warm golden presence to make life feel better. By then he was thirteen with a heart condition but a good quality of life. The vet referred us to the Dick Vet hospital in Edinburgh. At the time we lived 80 miles away but we wanted to do our best for him and we were told they were the best, especially with oncology.

My daughter and I were welcomed warmly and efficiently. Care was taken of us all. We sat down with a from to fill in. I expected the usual stuff, name, vets name etc. but this form was different. It asked us about him, what he liked to do, what his favourite toy was, when he had his meals, who was important to him, what kind of walks he liked, where he slept. It was a way of getting know him, what mattered to him, and what helped his quality of life. 

I was so impressed. I felt trust in them because they cared about him, not as any dog but as himself. They cared about us too. Giving us good advice but also firmly saying we need to do whats right for him and his quality of life and ensure he had his dignity and the things in life that mattered to him. We took him home to die the next day, his cancer had spread and any options were uncertain of good outcomes and would have caused distress. But really we took him home to live. And he had a good few weeks, where we spoiled him, took him his favourite walks. When the time came to save him further pain and distress, he was surrounded by the people he loved. The kids, now adults, came home, we took him on his favourite walk, he said goodbye to his (and our) good friends (Kirsty and Margaret)  and then to the vet. It's a painful memory still because of all he meant to us but I know he had the best care possible, thanks to that holistic service and the love we all had for him.

If my cancer comes back I want to go there, to the Dick Vet hospital, I said. They asked questions about Robbie, no one ever asked me the first time I had cancer. I was in my late 30's and had two young children. I felt strongly they needed to know me to know that people needed me. So the photo of my children I had taken with me to the hospital I displayed for all to see. I wanted them to know that my life was precious, I needed to be there for my family. I was treated with kindness and sympathy I  remember but I have no sense that they really knew me and what mattered to me. That, therefore, enhanced my sense of fear and isolation throughout the treatment. Twenty years later I can still feel it.

This week I had the honour of working with a group who are looking at how to improve their person-centred care. I love seeing the enthusiasm and passion that emerges as people see the difference that even small changes to people's lives. The woman who spoke of her experience as a carer for her husband with dementia was so powerful in her messages. Two of those messages stood out for me. One was that he has made it clear he wants to be free to do the things that matter to him, even if that puts him at risk. She also said let's not just focus on dying with dignity but ensure people are enabled to live with dignity too. She said it perfectly, do watch the video.

The tool described by the dementia nurse consultant struck me as the very thing that could enable that. It's called "getting to know me" and I recommend it to you. It's not only suitable in dementia services but also for any service, particularly for vulnerable people going between home and care settings. But as much as anything it's also about the conversations around it so anyone caring and supporting you sees the person behind the condition. It's simple, what a difference it would make to people to see this type of approach used everywhere.

Reasons to be grateful

I love seeing enthusiasm and fire in the belly for person-centred care and I'm always delighted to be on that journey with people. Robbie's story came back to me when we spoke of the "getting to know me" tool and although I didn't opt for treatment at the vet school when my cancer did come back, they did help me understand the importance of that approach. I remain deeply grateful to all those who work that way- and I experienced that second time around myself-it makes all the difference.