You got a friend this October?

 

Join the Breakthrough Bake Off, Im with dog here!

I've been planning my week ahead and knew that its coming; breast cancer awareness month that is. No longer do I have to dress in pink, to go about my work but nonetheless the reality is that October is still very pink. My careful packaging away of my own history, to be pulled out when I approach my review appointment in December, is no longer intact.

It's insidious at first; some articles appear in women's magazines. Stories of survival abound. The ones who don't are less spoken of this month it seems. There are the others too of course, who wouldn't describe themselves as survivors, living with metastatic cancer who can feel  in the shadow of the pink hued October time. But for many of them their daily life has become survival, their personal marathons to live with pain, fatigue and more. Somehow that pink ribbon just doesn't really seem cut it for them.

Of course breast awareness is important and I'm grateful for that focus and hope this month too will save lives through early diagnosis. Also the breast cancer charities rely on this month to raise much needed income to do their research, support and information, all of which help. So do what you can, it makes a difference. And share this TLC message to friends too; we all need to be breast aware.

But don't forget the impact on your friends with breast cancer, don't think that it's gone now they are back to work, or had good news at a follow up. And even more important are those friends who don't get the good news, who live everyday with metastatic cancer, please make sure they don't disappear into your shadows. Be their friend still.

I saw James Taylor this week in Glasgow and he was wonderful.His hair may different from the poster I lovingly gazed at on my bedroom wall as a teenager but his voice is still beautiful. As he sang You Got a Friend I remembered the time after my first diagnosis of breast cancer, watching him sing this song on a TV programme with the tears rolling down my cheeks, knowing that that message was so important to me and mine then. To know you've got a friend means so much.

Look after your friends this month....and all the other ones too of course. 

Generous in love?

If there has been a theme for this week, it would be love. It started and ended for me with discussions on how to improve care and support for those in need of health and social care. And trying to capture what is the essence of creating a quality approach. Now I could talk of asset based, person-centred, responsive, flexible, respectful, partnership based but those kind of words roll of the tongue and don't always connect us with our humanity.

We collect those words to get closer to that seemingly indefinable essence of what enables wellbeing and change in relationship with others. We wonder if its ok to provide comfort in the moment with a hug, to describe someone we care for in terms of friendship, to put another's needs before our own, even if we're not related because someone has told us its unprofessional.

 And yet we know in our own hearts that we want those who care for and support us to meet us as people, as equals and not hidden behind the shield of a title or indeed a uniform. But as themselves in all their imperfections and in that moment of contact willing to meet us as people, not conditions, not problems but in all of our humanity.  As I have explored what enables that in so much of my work this week, I have come to believe that it's about releasing people's capacity to love, in all of its senses.

Of course love exists not only between individuals or in families but in communities too.

I saw it today as people carried bags of groceries down the Royal Mile in Edinburgh ( the tourists must have wondered what was happening!) to collect and disseminate to local food banks. Oh how I wish I didn't live in a country where wealth is so poorly distributed we need food banks to correct the balance. But I'm glad nonetheless to see so many show care for others in communities all over the country. That gives me hope for better things.

So what's love go to do with it? Just about everything I think, don't you?

A new life at its term?

Proudly holding my Women for Independence Mug and stroking Cara.

What a few days this has been in my homeland. As most of you will know, I supported Yes for a chance to create a better form of social justice in our land, in particular one that ensured every voice counted. Well time will tell what the promise of new powers will deliver and if that will ensure we can build a more just and equal society. But we have shone a light on democracy and illustrated that social movements can emerge and create change. 
Recently a friend said that social movements rarely create the thing they set out to do but they do create change. Let's hope so. I have loved being part of this social movement and I will continue to do all I can for more socially just, equal and importantly to me, heartful community in all my life and work. I'm especially fortunate to have the opportunity to do that. It's been an honour to meet so many  passionate people dedicated to improving things for everyone. It gives me such hope for the future. I was one of the 45% as the movement is describing itself, but I feel no need to define myself as that. I would rather work into the future, for the wellbeing of all in our communities and our nation, however they want to define that.

For now I will dry my tears and plan how I can align all my life and work to work toward what I believe in. I will keep you posted! Thanks so much to all of you in Scotland who have got us to this next step, the work continues, there is so much to be proud of and I'm so honoured to have been part of the journey.
 I leave you with the very wonderful Seamus Heaney. A friend reminded me of his quote about poetry and music being food for the soul. As poetry, music and song have been a key part of this very wonderful social movement, this feels right.

Human beings suffer,

They torture one another,

They get hurt and get hard.

No poem or play or song

Can fully right a wrong

Inflicted and endured.

The innocent in gaols

Beat on their bars together.

A hunger-striker's father

Stands in the graveyard dumb.

The police widow in veils

Faints at the funeral home.

History says, don't hope

On this side of the grave.

But then, once in a lifetime

The longed-for tidal wave

Of justice can rise up,

And hope and history rhyme.

So hope for a great sea-change

On the far side of revenge.

Believe that further shore

Is reachable from here.

Believe in miracle

And cures and healing wells.

Call miracle self-healing:

The utter, self-revealing

Double-take of feeling.

If there's fire on the mountain

Or lightning and storm

And a god speaks from the sky

That means someone is hearing

The outcry and the birth-cry

Of new life at its term.” 

― Seamus Heaney

Burdens or assets?

Recently I had a reunion with my fellow nursing students from the University of Edinburgh. It was a fabulous weekend connecting with people who were such an important part of my life at one stage. Some have stayed in it of course but how special it was to meet again  and look back at our younger selves as so many memories were awakened. 
How did we feel the course had affected our lives, we wondered? I recalled that a former student had told us, the degree in nursing gave her skills for life. I remember thinking with a youthful arrogance, really, is that all?Of course it was nt all but now I know what a fundamental gift that was. Our Professor was the unique Professor Annie Altschul. She was a mental health nurse by background, an Austrian who had left her homeland when fascism was plowing its devastating furrow. Her special research interest was the therapeutic relationship. We recalled her words to us: that the best tool we had as nurses, was ourselves. An overwhelming thought when you are a raw 18 year old, but now I recognise the deep wisdom she spoke.
Not only are we older, greyer and our lives have had some unpredicted twists and turns but the world we work in too is different. The people we care for now have complex illness, they tend to be older and usually have more than one condition to deal with. In some respects that is a success story as we live longer now, but the reality too is that we live longer with long term conditions.
Its hard to hear this spoken of in healthcare without words like burden and wait for it; multimorbidity  being used. I have been known to introduce myself at such events, as Audrey a walking multi morbidity! Yes it's a joke but its also my way of reminding us that we are people, not burdens, not the blame for pressure on the health system, we are the reason the system exists. I absolutely understand the challenge of caring for people with complex conditions, the primary care system is buckling with that pressure. But we know our medical and nursing education  does not currently prepare people for the reality they face. Undoubtedly we need to change our approach to a person centred one, with people not conditions or systems of the body the focus. An assets based approach where we help people discover their resources to enable their own wellbeing, whatever their health issues. Where we focus on fostering self belief and self management, enabled, not disabled, by our health and care needs. Where health and care workers recognise their role is to enable wellbeing not merely to treat disease or support people safely. And they too as staff are valued, supported and stimulated in their work. A culture that starts with "what matters to you?" is the one which will create the conditions for wellbeing in our selves and our communities. 
The young nurses setting out on their journey as I did so many years ago, will see a health system very different to the one I did. In very many ways it will be better but also wakening up to the fact it needs to change. We need to respond to that call and give those professionals the right tools and conditions to do that. Language is so important so let's stop talking burden and start talking assets, it will start to turn the wheel in the right direction and give us all the starting point for change.
Reasons to be cheerful.
I'm working with a great organisation who have embraced the future with a very personalised form of support. I spent time with the manager, who told me, "since I started this project, I haven't worked a day". A team who love their work because they see the difference it makes. Now that's a great starting point too. 

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.