Friday, 21 February 2014

When nothing is sure, everything is possible...


"Do you people here in Scotland ever talk about your history" was the question that got the biggest response in the fascinated audience. It was a slightly nervous laughter that spontaneously entered the room. Oh yes we talk about our history, especially just now as we approach an independence referendum. But that wasn't what the lecture was about, it was about the Alaskan approach to building wellbeing in, with and through a community, the Nuka system. The story of this thirty year process was inspiring and thought provoking.
There's much for us to learn from this I'm certain.
There's so much we are doing well here in Scotland. A focus on person centredness, on co-production, on safety and quality are so important.   They feel hugely important parts of the jigsaw but just maybe not the full picture. The difference in the Alaskan experience was the community involvement and the commitment to that at every level. It's a cultural movement, a social movement, an unashamed paradigm shift in power and influence in health care. All voices are heard within the system. It's  a system that serves its community, that focuses on well-being not ill-health,it's not a fix it model it's model of shared responsibility.
What's interesting is it was born out of oppression, of a failing system but became a leading and much admired success story. It's a story of leadership at all levels, of a joined up approach that teaches everyone it's core concepts with the neat acronym of WELLNESS, with a consistent feedback loop for all.

 Core Concepts

  • Work together in relationship to learn and grow
  • Encourage understanding
  • Listen with an open mind
  • Laugh and enjoy humor throughout the day
  • Notice the dignity and value of ourselves and others
  • Engage others with compassion
  • Share our stories and our hearts
  • Strive to honor and respect ourselves and others

 It listens and learns, focuses on humour and compassion. No one  can opt out, no one is too important to sabotage it. I'm absolutely certain it won't be perfect all the time, what is? But what is clear its a full and absolute commitment to relational systems and care, to well-being , it's culturally shaped and it recognises and values the spiritual element in a care system. 
I'm sure many of us were inspired. I certainly was and know there are many who want to work in this way here but we aren't there yet. We need a more holistic approach not just in health and social care but in our communities and our culture. I read a quote by Margaret Drabble recently that said, "when nothing is sure, everything is possible". Of course when you are deep in uncertainty, whether through illness, burnout, the stress of social pressures that could sound trite. But if you are thinking about real paradigm shifts maybe they only will happen at those times.
We are recognising that small tweaks to a system is not going to be enough to deal with the challenges of health and social care and its not peculiar to them either. Education, housing, the benefits system need to reflect the values we are crying out for in our lives and work too. Politicians alone cannot achieve this, it's down to all of us, we need to step up and work with leaders at all levels to do this, the politicians role is to support the right environment for this. 
The parallels are there in the experience of illness. Sometimes it takes a serious diagnosis like cancer to review your life and relationships. To let go of relationships, jobs, behaviours that aren't serving you; the chaos giving you the clarity and courage to act. The freedom created when you are challenged at your core to know what's important, what's right shouldn't be wasted.
The question for me is are we there yet? Are we ready to acknowledge the extent of the disease in our systems? Will we be courageous enough to really change how we receive and deliver care, letting go of hierarchy and power and really embracing the potential for shared responsibility at all levels? What the Alaska experience shows that once we are everyone will gain. That's the outcome to aim for.

Reasons to be hopeful
I noticed this week lots of conversations about the lecture. Many have been thoughtful and reflective about what they heard. I heard people stimulated by and hopeful about the potential for change. We need to all step forward now to make it happen. I'm definitely up for that and it seems to me the right time has to be now.

Friday, 14 February 2014

Love bombs or working mojo?

I will admit to the odd rant at the news this week. It's a heightened time in Scotland as we approach a referendum on independence so we are getting used to political posturing.  In this week alone we have had the prime minister asking the rest of the UK to love bomb the Scots to persuade them to stay in the Union. I won't take it personally but I have had a distinct lack of love bombs from the south. I'm sure ever rising flood plains are a much bigger issue for most and rightly so. It's been a terrible spell of relentless rain and a large dose of misery for many. The spring cannot come soon enough.  
And then the chancellor arrived in my home town to tell us we can't have the pound if we vote Yes to independence. Whatever your voting intention you could be forgiven for thinking "but its our £ too". He didn't even stop for an Irn Bru.

But it wasn't that that made me lecture the newsreader. It was the pronouncement about the new procedures to focus on getting people back to work when they have been off for 4 weeks. Now I absolutely agree that returning to work is an important part of recovery and wellbeing so when people are well enough it's vital to get the support to get there.
But what about those who aren't well enough? What about people who are struggling to regain their health, whose emotional well-being is hard to measure but disabling nonetheless, who are living with long term conditions which mean a life with constant pain, breathlessness and so on? What of those on treatment for cancer: surgery, chemotherapy and radiotherapy the health depleting cocktail?
There is a recurrent rhetoric that people need to be encouraged back to work but interestingly our rate of absence through sickness is among the lowest in Europe and has halved over the past decades. So what is the problem we are trying to solve and even more importantly at what cost?
 I have seen this dilemma from both sides of the consulting desk. As a nurse I would frequently be advising people not to go back to work too soon, having seen many a tentative recovery crumble under the pressures of work. My honest recollection is I have never thought someone was deliberately avoiding work, perhaps I'm just lucky or seriously naive. But I know from my own experience my drive was always to go back too soon. It's the thing that signals the illness or treatment is over, life is returning to normal and for most of us that's what we want. Some jobs lend themselves more to easing yourself back in, or to escape from the isolation of your sickbed-but not all.
I eventually realised that although my treatment was over, my stamina had slipped out the door, my mojo missing in action. As a charity director it was a wonderfully challenging and motivating role but it didn't have an off switch. I had no need for anyone to encourage me back to work, I needed them to wave a magic wand and help me get back my wellbeing over night. No one could of course. My last year, working independently, being able to give life a different pace has allowed that, practicing mindfulness has helped, taking part in The WEL course a turning point too. There are no magic wands just the knowledge, space and rest to care for yourself mind, body and spirit enables your health to return.
That doesn't happen by merely pressurising people back to work, but I'm sure  courses like the WEL widely available would. As would mindfulness classes, self management support- from peers as well as professionals- make some of the difference to people. I wonder if our modern approach to medicine is part of the issue at play here? A culture used to taking a pill and getting better has lost a tradition of self care. If we are to protect people's long term wellbeing we need to help them relearn this. To understand that their modern medicines will be important but will not and can never be the whole story when recovering from illness or living with long term conditions. We need a health system that recognises this and values a holistic health as well as working environments and benefits systems that prioritise long term well-being. If we don't the costs will be so much more than financial.
Reasons to be cheerful
A family weekend awaits and I'm very much looking forward to it. The book is emerging as a much more real possibility now too. It's no guarantee anyone will read it of course!
Have a good weekend all. May the sun shine on you.

Thursday, 13 February 2014

All you need is love...all together now.

I posted this a couple of years ago and its eerily topical-right down to losing at the rugby and the chest infection-so its for my even longer suffering husband as valentines day approaches.

An alternative Valentines…So here are my thoughts about what love really is to me

It's making my favourite soup when everything else makes me cough
It's putting up with Leonard Cohen on the iPod deck for the zillionth time
It's singing Flower of Scotland with my Mum (they are both English!) And not laughing when we lose the rugby (again)
It's knowing he's there for the kids, whatever it takes
It's not going Duh! when I say maybe I have been over doing it
It's saying I look lovely when I feel it least 
It's welcoming my friends in his life too
It's not resenting the job when it takes so much of me
It's making me laugh at the worst of times
It's letting me cry at the worst of times
It's not complaining when we have to change our plans again
It's supporting me when I decide to have more surgery
It's not flinching as I do when I see the prosthesis I need still to wear
It's being there in the bad and the good times
It's looking forward to celebrating the better times to come...

Friday, 7 February 2014

Part of the story but not it all?

The Field of Light St Andrews Square

It's been my birthday this week and you know how it goes with these dates in the year. It stimulates reflection on life and the universe and so forth, pledges to make this year special and I even asked for a food processor for the first time in my life! It's still in pristine condition but I will get there.....really. Perhaps my biggest decision however was to join a writing class. It's a wonderfully old Edinburgh experience with a tenement stair being the entry to a different world. Our workshop leader has a well thought out method and an engaging other worldliness. My sense is already that I will learn a lot and who knows what will emerge?
I haven't thought of elaborate fictional plots but instead wondered about a similar approach to my blog where I weave through my own experience, what I have learned about life and love ( in its widest sense-a Barbara Cartland is not not my goal!) and I started not quite clear of my path but trusting that this would emerge.But I found that whatever direction I try to go in my inner steering wheel pulls me back to my lived experience of cancer. I consciously decided I did not what this to be my focus, no desire for the condition to define who I am, it is behind me and so on but somehow my subconscious wont let me. Although my blog has meandered through this territory it hasn't encapsulated it all, hasn't brought together what this life experience has taught me and who I have become as a result. I'm beginning to conclude that's still a story to tell, maybe not a best seller but its my unfinished business. It kind of feels that I can't write anything else until I have written this.
My reluctance to make breast cancer my focus has also been that many have written about this too. The story has been told so to speak and mine isn't so different or any more interesting after all. But of course it's my own story and how it has made me who and what I am in all my guises and no one can do that but me.
Perhaps what has convinced me was the controversy this week about a campaign by a pancreatic cancer charity with an image and a quote saying "I  wish I had breast cancer". It's caused a huge response from the breast cancer community. I suspect I'm not the only person whose main reaction was not anger surprisingly but honestly, it was that I felt hurt. Not just for myself but for all those whose lives have been changed by and lost to breast cancer.  Hurt caused by one group in the cancer community to another is hard to understand or forgive. No one wants any cancer and that's an end to it. And it does seem that the hugely improved survival statistics mask so much still.  And so my proposed book will be my attempt to build empathy and understanding for this vulnerable seems that job is not yet done.
My birthday is shared with World Cancer Day and in previous years I have wishes to change the title to F*** Cancer Day-in part because I'm angry it's stolen my birthday....and so much more. But maybe it's also my reminder to accept that its part of my story too, but importantly not it all, oh no.
Reasons to be cheerful
I had a fun birthday and even saw an Edinburgh Tram that evening as we set off to see the beautiful field of light in St Andrews Square. The trams are not an urban myth after all and setting aside any rants about costs and mismanaged projects, they really are quite splendid. Their  elegant traversing of the city sure to enhance it. Also we went to a house party where two excellent musicians played traditional pipes, sang Gaelic songs and told tales from ancient times in Highland Scotland. It was uplifting and quite wonderful. What a gift they have a what a pleasure it was to be part of it. 
That's me under the hat-fortunately the tram  took off in the other direction!!