Monday, 24 June 2013

The music behind the words

It's been about seven years we have been coming to Bulgaria. And to my eternal shame I still can't speak much Bulgarian. We speak some french and german so western Europe was much easier for us but here it's a different story.  Some key words get us through but mostly it's the language of the shrug, a gesture , a smile, a hand grasp, a kiss on both cheeks, a wave. Their eyes tell of their warmth  and welcome. But there is a catch. With one important gesture we understand the opposite, because here in Bulgaria a nod means no and a shake of the head means yes. Now I have always known that "da" means yes but every time it's accompanied by a head shake I'm thrown. I receive the answer as "no" until I have to adjust my thinking to the accompanying verbal answer of yes.

Seven years on that's still true. The power of body language and the reminder that what we communicate is much more than what we say. When I facilitated counselling training we would describe the need to listen for the unsaid, for the music behind the words to truly understand how to enable wellbeing. To really understand people we need to explore whats the music behind their words. A beautiful illustration of this for me recently was hearing of the woman who became distressed going to theatre for surgery for breast cancer and when this was explored further she explained that her husband had recently died and she was facing this all alone. The nurse returned to the ward and got his photograph from her bedside. The comfort of his photo and the act of caring calmed and restored her throughout her treatment there. Actions, not just words you see.

And the Bulgarians we meet show their nations culture through their actions. Their generosity in helping out others, their frequent refusal of tips-"that's not needed", their family centredness so much part of what makes our visits here so special. Yes we know there are problems of corruption in this fine and beautiful land but thats not the dominant culture from our experience. So when I hear doubts expressed in the UK about Bulgarians being free to come over I feel aggrieved. Perhaps our own culture in the UK could benefit from some more of the qualities we have seen and experienced here. Their young people especially ,are beautiful and carry themselves with a grace I envy and admire. We can only be enhanced by their presence I suspect.

Reasons  to be cheerful
It's been very hot but last night a storm has freshened the air. Jacko the shepherds dog has returned with his grin welcoming us back.  I have as usual taken lots of photographs of the Rila mountains. The house has an undisturbed view to them and with each shift of the weather they change. The photos never do them justice but I keep trying!  And mostly it's wonderful to have the chance to restore the soul with the beauty of the place.

Sunday, 16 June 2013

On empathy and the search for meaning

 But there was no need to be ashamed of tears, for tears bore witness that man had the greatest of courage, the courage to suffer.
Viktor Frankl "Mans search for meaning".

I met some great people this week. People who made an impact -and not just on me. People who have been brave enough to tell their stories to help others understand more from their perspective, to challenge current practice, to enable change to happen. I know that's not easy and not without a cost but it does make a difference.  Tommy Whitelaw is one of them: an eloquent and passionate story teller.

 His campaign to raise awareness of dementia touches the deeper places of our awareness, leaves people unable to look away. Hearing his and his Mum's story holds up the mirror on our care systems. Tommy respectfully but powerfully articulates this, helping us see it through his eyes: yes as a carer, but also as a loving son. A system that sadly allowed him to find out what might have helped him and his Mum only when it was too late to make a difference. A system that allowed people to care for her for years without knowing who she was or what and who mattered to her. Our collective challenge is to listen to Tommy and Joan's story and make sure it's not repeated.

And others I met told their story of how a disability can, without the right support , lead to imprisonment in your own home. One amazing man imprisoned  in one room for more than a decade saw his life transformed by the good work of a charity, Housing Options Scotland. This has led to him now able to get out, his world enhanced beyond measure.

Such powerful stories build our empathy for their situations, understand better how to meet needs in the future. For that time we walk a little way in their shoes, see the world through their eyes. And eventually we know what to do to change things. I have seen this DVD from the Cleveland clinic a couple of times now, each time it moves me. Do watch it. Its not just being touched by my shared experience  but the small discoveries below the surface that make a scene all the more powerful. Thanks to all of those who share their worlds below the surface, it's not easy and takes great courage and strength to show your vulnerabilities.

It also led me to think about resilience in the face of crisis, change and trauma. It's an oft used term in our currently challenging world. How do we help people build resilience, what helps them survive? Victor Frankl in his book  "Mans search for Meaning" describes that from his experience of surviving in a concentration camp, it is about finding meaning and  purpose.

Life is never made unbearable by circumstances, but only by lack of meaning and purpose.
Viktor E. Frankl

Having the right environment to live and the right network of support can change meaning and purpose so much. And what could that mean for those working in health and social care? What better purpose can we have than enabling another's wellbeing? And yet we learn that resilience is tested with current working practice and cultures. What in the system stops people having a sense of meaning from their work as care givers? What is lost that we need to recover? Unlocking that is Im sure how to secure the best experience for all in those precious relationships.

I have spoken often of the great care I have received throughout my recent treatment for breast cancer. And this week Professor Mike Dixon, my surgeon, has been awarded an OBE. He has worked relentlessly for others and its so clear that what makes him resilient is the meaningful (if often heart rending and exhausting too )work he does and the purpose which he has never lost sight of. Truly inspiring. It's an award for services to breast cancer and charity. It could not be more deserved.

Reasons to be cheerful.
One of the great joys this week was a reception hosted by HRH Prince Charles for Breakthrough Breast Cancer  supporters in Scotland in Holyrood Palace . The pleasure for many in meeting the Prince was matched by meeting Professor Mike Dixon too, lets be honest! For many of us there, he has seen us in less elegant attire perhaps but he never forgets a face ( at least I think it's the faces he recognises!).Its so fortunate to have such times to celebrate when the backstory is so challenging. And for me it was so good to see old colleagues rising to the occasion and many old friends in their finery, celebrating such a special occasion for all involved. My only sadness is that it was over too quickly to have all the conversations I wanted to. The reception came at the end of the excellent  two day NHS Scotland event ..the change of shoes wasnt quite enough save my feet but Im sure they will recover in time?!
Audrey goes to Holyrood

Thursday, 6 June 2013

What Matters to you?

Kissing Cara!

It's been a fascinating few weeks, steeped in developing principles for person centred care. The process brought together people working in health and social care in all sectors and those with lived experience of services too.  I found myself wondering which I was....what side of the fence? The healthcare professionals were familiar; a warm and a  recognisable part of my past. The third sector is definitely part of my tribe now:I'm proud of the  innovation, the flexibility, the person centredness at its heart.   But I recognised where I felt I really belonged was with those with the lived experience for this work. The words expressed went to my heart and its absolutely that, that fuels my passion for the work.

My name badge just had my name on it. Just me. Part of every tribe and none. I admit there is liberation in that. Feeling able to see all parts and advocate for all in the system is part of what I can offer. The symbol we developed for person centredness does not have a unique collection of words, they have all been expressed before but they are the ones we connected with. They are all of our words and they tell the story for all, not just those with lived experience of care but all of those in the unique relationship of enabling wellbeing, for themselves, with others. And there is a sacredness in that relationship. From the trust between the surgeon and patient to the carer of the person with dementia who together find how to reach out and connect through the dense fog of the condition.

The strongest message that has gone to my heart is that for this to thrive we need compassion, trust and respect for all in the system. And that's not what I hear about in so many places. A system perfectly designed to not enable person centredness is the risk. My fear is that this wont change if it looks like the only thing we care about in health care is waiting times.  Hardly a day passes when our news channels don't resonate with talk about waiting times, leaving a system at risk of distortion. Yes if I need a simple orthopaedic procedure I'm happy to go where necessary to have it done. But if its about a longer term relationship, frankly I would rather wait for the person I know, the person I trust. Yes , even if its for cancer treatment. Let's not pretend all waiting is equal, let's allow a flexibility that instead offers safe and relationship based care. Make the headlines about the real concerns for health and social care in the future. All of us need compassion, trust and empathy an everyday reality in health and social care. Let's campaign for that-for all in that sacred relationship. They all deserve better and we all have a part to play in that.

Reasons to be heartful.
The commitment that I have seen in the last few weeks to make person centred health and care a reality has been inspiring. Let's keep the inspiration flowing. And there is a burgeoning romance in this household. Cara is smitten by Buster the chocolate lab who lives around the corner. It seems mutual (if not exactly exclusive- but hey!) so happy days all round. Kissing Cara is her new name and their antics guarantee a smile!