Saturday, 20 September 2014

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.” 

Monday, 8 September 2014

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. 

Wednesday, 20 August 2014

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 its the same for teams in organisations, for public health campaigns, for enabling wellbeing too not just in individuals but also in their communities because its  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 its 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 its 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 persons 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!

Sunday, 10 August 2014

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.

Tuesday, 29 July 2014

To make us well?

In 1948 the  World Health Organisation developed this definition  of health: "Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."
Who could argue with that? But how much do we invest in the whole concept of health and well-being; preferring instead to invest in fix-it models of healthcare? We know how to do this after all....or do we really? Yes healthcare helps to reduce symptoms, occasionally even affects a cure-although more likely a move 
from an acute to a chronic condition-it provides opportunities to extend quantity and hopefully quality of life and sometimes it even relieves pain and suffering. So it's important to have these drugs, therapies and treatments to improve our options and by extension our lives. But what is clear to me is that, this is not enough to enable well-being at a personal or community level.
Does it really make sense to give priority only to healthcare (and we could argue whether even that is enough) when the things that effect health are under so much pressure. When the words "housing crisis" have become common place, when we have more waged than un-waged poor, when food banks have crept into our communities in an unprecedented way; is it enough to rely on our health care system to fix it?
Health inequalities are increasing across Scotland and we see no reversal in this trend. In Glasgow alone there is 13 years difference in male life expectancy from the most wealthy compared to the least wealthy. We are an increasingly 
unequal society and there are no policies currently at UK level which will address this. 
And in spite of assumptions,  health inequalities are not inevitable; a more equal society has better health outcomes for all. But for more than a generation they 
have become our norm. An acceptance that Scotland's gift to the world is deep fried mars bars, early death from poor lifestyles our norm, a self defeating normality fed by both media and our poor self concept. But it can be different. 
 A medal haul to be proud of in Glasgow's Commonwealth games can begin that shift in self esteem. A confident nation, awake to its possibilities and ability to self determine is an important next step. The former CMO in Scotland, Sir Harry Burns expressed that an independent Scotland could also be a healthier one. I wholeheartedly agree. A nation self confident and self determining with a shift from learned helplessness and hopelessness which has literally seeped into our DNA ; to be one of energy, confidence, compassion and collaboration to create a better nation for all is also a nation to be proud of.
But let's not rely only on the transfer of power from London to Edinburgh alone 
but remember too the message from the disability movement -nothing about us, without us -and ensure that applies at all levels in communities and for individuals. That's how health and wellbeing flourishes in ourselves and in our communities.
Reasons to be cheerful.
Thank you to the super athletes in Glasgow for inspiring a nation and a generation not only to be active and fit but also to remind us that we can achieve great things with the right support and determination. Let's use that knowledge wisely. Someone asked recently what the game changer would be in 
the referendum, I replied it would be confidence to believe we can be capable of 
more. I suspect that day has come and it's now we will see our health and well-being improve as we realise our whole potential.
I would urge you to listen to this version of Caledonia, by The Libations. The profit from every download will support food banks in Scotland. A worthy cause but even more importantly let's work for a time when they aren't needed, when wellbeing is the experience for all of us. 

Friday, 25 July 2014

A warm smile to welcome and a sad goodbye

I haven't taken any photos of the mountains since I have arrived this time. Other distractions of family to photograph instead, maybe. But tonight they are spectacular with light and cloud dramatic and moody. I can hear the sheep bells, being taken out now that the day is cooling. 
We heard yesterday that the lovely Jacko is no more. Our undstanding of bulgarian does not lend itself to the complexities of the cause but we will never again see his smiling face welcoming us when we arrive. 
These are not the pampered pooches of home, their lives not protected by vaccines and vets I suspect. So it's a sad goodbye to Jacko, we will miss him. There is something special about the touch and the love of an animal that brings a sense of joy and comfort too. I have seen often that importance of a pet to an many a person. Their lives given a rythm and sense of purpose, especially when their contact with the outside world is limited. When loneliness is our fastest growing longterm condition do we take account enough of the importance of a pet in a persons life when we arrange care and support, I wonder?
There are many stories of how animals like children and music can enhance the lives of those who are hardest to reach in ordinary ways. There are many abandoned animals in rescue centres and many a heart that could be lightened if we could find a way to care for all those needs togther. Now wouldnt that be a good solution?
Here is the lovely Jacko for one last time. May your lives be lifted by such a lovely smile too.

Friday, 18 July 2014

It will last as long as there are folk to fight for it...the NHS

I grew up in the NHS, even before I left school I tested out my future career by volunteering. I was smitten from the start. That sense of community, of working for a common good and being able to make a difference some times in a small way, sometimes in a huge way. Yes it's tiring usually, stressful often, the shift-work a pain but the satisfaction a balancing point usually. But I wonder if things are balanced now?
Levels of stress, of workload, of pressure from targets and- in England at least- endless reorganisation that has no apparent value or indeed common sense at its root, are taking their toll.    
The workforce is struggling that much is evident. What is amazing in a way is how much great work is done nonetheless; day in, day out. The evidence of cost effectiveness of a national health service is plentiful, we know its not perfect but its nonetheless impressive. Its part of our psyche, part of what we are proud of as a nation; be that UK or Scotland.
As regular readers of my blog know I have had many opportunities to be grateful for the work of the NHS and indeed to challenge it to be as good as it can be. I have twice had treatment for cancer and I haven't had to "break bad" to pay for it. Haven't had to see myself be financially crippled through bills (unlike my peers in the US in particular) to protect my long-term health. Of course I have had many other impacts and some of them financial but its not from paying for healthcare. I also know I would stand at the barricades to defend the NHS and its principle of free at the point of need.
But I look at the situation in England and see the integration of healthcare being fragmented, see private companies in the business of profit moving in to improve a service we are told and I see a situation when the tax payer funded sector is starting to fund private healthcare sector who are accountable to shareholders and not those who pay for it and I wonder where will this end? As it slowly shifts to private sector delivery, what is the logical next step in England?
I notice in myself a tendency to cross my fingers that this could never happen in Scotland. Health after all is devolved. And we have given commitment in Scotland to staying with a model of collaboration, of integration, of ensuring the voice of lived experience helps to shape not only the person-centred one to one care but also the service improvement. I applaud this and like to think I , along with many others have helped to influence this. And we see the positive impact of investing in self-management, of the reality of how involving people truly shapes policy and practice in a person-centred way, unencumbered by reorganisation, that is at best a distraction, at worst decimates a service that was previously successful.
How fragile is this approach however although it currently has collective support, a policy we sign up to and are still admittedly finding our way with. But as policy elsewhere in the UK shifts and changes how much does that create a tension that is unsustainable? How much does that shifting budget, between public and private, impact on how Scotland's budget is allocated over time? The budget then becoming the driver of a policy we don't want?
The political discussion around the referendum in Scotland has only recently shifted to focus on the NHS. And at first I was probably guilty of complacency. The policy here is so different, cross party consensus in health is fairly solid in most part but as I have looked at the question of divergence and budgets, my concern has grown.
I heard it said recently that so many in Scotland are "aff their sofas" and engaged in this vital constitutional debate. What I would urge us all across the UK to do is get "aff" our collective sofas and join in the battle for our NHS. Let's not be guilty of only realising what we had after we have lost it. But equally we shouldn't worship at its temple, more importantly we need to help it evolve, improve and be truly responsive in partnership with those it serves. Maybe we all need to be willing to properly invest in it too. And finally to ensure that those who govern are properly accountable to us for our health service and not impose policy that we didn't vote for and don't want; whatever our nation is now and in the future. 

Reasons to be cheerful: the sun is shining and I have worked with some super people this past few weeks. Not least in my first experience as a speaker for Women for Independence. I loved the engagement of the audience and the passion of those with a vision for a more socially equal and just society. It's inspiring to be part of this movement for change.