Monday, 28 October 2013

The grief that does not speak...

       "There is no grief like the grief that does not speak" Longfellow

Is grieving something that comes naturally or do we need to learn it? Maybe we all instinctively know what to do but something in our socialisation means we bury it away? It’s part of living of course but I wonder how often we really give it the time and space it needs.
 A good friend was once trying hard to reassure me that, the fact my usually gentle golden retriever had just killed their family pet rabbit was really ok.
 We got the rabbit to help the children learn about life and death and how to cope with that, she explained. I have long suspected it was more like an introduction to terrorism but it I tried to take comfort from her reassurance! And she is so right that one of our key roles as parents is to help our children learn how to do the hard stuff like grieving ,too.
But grief is such an individual thing. I learned many years ago not to make assumptions. As a fairly young health visitor I was referred to do a bereavement visit on an elderly lady who had recently lost her husband. I knocked on the door with trepidation, wanting to find the words to offer support to someone I hadn’t met before. I haltingly stammered out my sympathy and asked how she was. I missed the dog more, she told me. I tried to hide my shock and listened as she explained her husband had routinely abused her. She was of a generation that never spoke of such things. Even the time he broke her jaw for a mark on the cooker she had told not one. The dog however had loved her unreservedly. Yes I learned a lot from her, her courage, her honesty, her final disclosure, allowing her to grieve for all life had dealt her.
As regular readers of my blog know my father died just after I finished breast cancer treatment for the first time. My grief was so complicated by his dying from and my coping with my own cancer but also that I lost his warmth and love at the very time I needed it most. Just last week I went to pick up the phone to talk to him about something I know he would have been very interested in and even- nearly twenty years later -I felt his loss. And this week seeing the impact of Alzheimer’s on my Mum I recognise there are so many different stages of grief in a condition like this too. But her joy in her great grandchildren is a marvellous way to be reminded that it’s those moments that count now.
As the wise GP I read once said, no one ever prayed for more time at the office on their death bed, no we pray for precious time with those we love. So perhaps the best preparation for grief is to not regret missing time with those you love. Create the memories now that will warm you after they are gone. And remember too that grief is part of life but the milk of human kindness will ease its journey.

Reasons to be grateful. Time with family was precious this week and welcoming the new baby of the family. And its all about new babies this week...looking forward to lunch with old colleagues and meeting the new baby too. 

Saturday, 19 October 2013

pink ribbon blues.....

I have tried-I really have- to resist the urge to write about "pinktober" but I'm giving in now. My fellows in the breast cancer community, especially in the US, have rightly stated their concerns about how the movement has at times been distorted. Understandably have challenged the pink ribbon and what it has seemed recently to represent ( or not), importantly shouted out about metastatic breast cancer and I have looked on with concern that I found hard to articulate. My own feelings are ambivalent and complex. The sharing again of the Scar project with its strap line of breast cancer is NOT a pink ribbon helped me begin to articulate my thoughts and feelings.

What I notice is I have not, perhaps for this first time in nearly 20 years, worn a pink ribbon. I have worn at times a gold plated ribbon brooch for two reasons, one it complimented the red jacket it's on ( yes I am that shallow) and two it seemed to say with a bit more gravitas somehow that this is my tribe. I wear it with pride honestly to acknowledge my membership but importantly I know I can wear it without embracing the pink and fluffy.  

I guess I'm acknowledging my anger at what cancer has taken from me and that at no level do I wish to be seen to celebrate that. Although I am still here and maybe that's just cause for celebration but not for smugness or even complacency. So I thank those who are making genuine efforts to help detect breast cancer early, who are raising much needed funds to invest in the research that will ultimately save lives in both early and later stages of breast cancer and those seeking to alleviate distress in all its forms- I commend and want to support your work. But this year at least, I'm just not wearing pink.

Please let's not fragment this powerful breast cancer movement. There isn't a hierarchy. Primary and metastatic breast cancer are not pink ribbons in any sense. And today's survivor of primary breast cancer is tomorrow's metastatic patient; we still don't really know who that will be. So it's all our fear, the fear that unites us I suspect. I can't be alone in suffering survivor guilt over the friends and family I have lost to breast cancer. Why have I survived when they haven't? Why has my luck held out when others, sometimes much younger than me, have gone on to look their mortality in the face.  I grieve for their situations; feel distress when I see breast cancer rob them of youth, of children, of wellbeing, of hope, of a future. Breast cancer is not a done deal at any level and no pink ribbon can ever do justice to the impact of a diagnosis. But fundraising in October is vital to many charities doing great work so it you are walking, running, partying or  having a fun pink bake-off thank you so much, you will make a difference. But also spare a thought for those for whom the pink ribbon is an unwelcome reminder of a cancer that changed their lives for ever.

I believe we really absolutely need the awareness the pink ribbon stands for and maybe its most important we ensure every person wearing it understands that breast cancer remains a huge challenge at both a personal and population level and that their support needs to be well invested in the organisations whose wise investment will find the breakthroughs and provide much needed support. Every month in the UK alone 1000 women die from breast cancer, that's a whole lot of broken hearts and lives changed for ever. And for every one of them there are many others living with the thought that next time it might be them. We owe them our commitment to work together for better outcomes for everyone.

Reasons to be grateful. The breast cancer community has shown global solidarity to fight for better outcomes for all women and men affected by breast cancer. I'm proud to be one of them .....even when I stuff my pink ribbon back in the drawer and wish I wasn't.

Friday, 11 October 2013

The way of truth and love.....

This week I have been  moved by historic tales of awful times that shaped where we are now, by three separate stories in as many days of failed care and also by spending time with people whose life time work has been to enable healing in others in its truest sense. And all of these have made me think about our times.

I sat in Pathhead halls in Kirkcaldy at a National Theatre of Scotland play entitled In Time of Strife. The play was written during the miners strike in 1926 in Fife to tell the story of that time, of those alienated communities , of the injustice and to raise funds for the soup kitchens that kept the people alive. I grew up in such a community and saw the impact of the miners strike of the 80s, so concerned by the situation that news bulletins punctuated our day. A new Mum at that time such was my engagement with the issues ,one of my sons first words was picket! This play resonated of those times and in many ways of now. The damage to all through alienation.

 Let me right at the outset define what I mean by alienation. It is the cry of men who feel themselves the victims of blind economic forces beyond their control. Its the frustration of ordinary people excluded from the processes of decision making. The feeling of despair and hopelessness that pervades people who feel with justification that they have no real say in shaping or determining their own destinies.

This quote from the 1970's is from Jimmy Reid a Scottish activist and politician who is now dead but the power of his words remain. They must feel true for so many now, in our modern recession that in many ways hides from the impact on the alienated.

Hearing the accent of my childhood describe the inhumanity of those past times was deeply ,deeply moving. Speaking afterwards to my mother now in her mid eighties, she said these brave men and women created the better situation that her generation were able to benefit from. But what is also true is that these communities no longer exist. They died as the pit heads closed. For many hope died then too. But who would want to work down a mine? A taxi driver I met recently who had been a miner over 20 years ago said to me he would go back tomorrow. Not for the job-for the community. Such communities helped them survive the hardship and daily danger -men and women alike.

When I was first a nurse , working in a hospital felt like being part of a community, a community of caring-if you were lucky. Certainly I can recall being fiercely proud of the

community I was part of, whose uniform I wore.  The sense of purpose, community, pride and belonging could be a powerful mix. So hearing several stories of failed care from one such institution made me yet again question where had that gone, was it only ever the exception , do any of these environments exist in healthcare now? But of course they do, I personally have experienced it in my treatment for breast cancer-I have felt cared for in every way. I see it too in creative third sector organisations who create communities of interest and services, prioritising quality of care in a person centred way.

It's vision, culture and leadership that creates the conditions for people not only to do things right but also to do the right thing. And what's also evident is that the path to health not  only lies with individuals  but with communities too. Communities create environments where we can thrive and survive even the hardest of times, especially when people can influence their own situation.

Reasons to be cheerful. I'm honoured to be part of charities who are striving to enable health and wellbeing in its widest sense, who are giving voice to the unheard, who are inspiring current and future generations to work differently to enable health.  Do look at the website of The Alliance to learn of their work and the inspiring work of the WEL programme enabling people back to wellbeing- staff and patients alike.

This collective work leads me to agree with these words from Gandhi 

Sunday, 6 October 2013

What transforms healthcare?

Gastein in Austria is just beautiful, every view a potential chocolate box cover. The buildings even in October resplendent with geraniums, it is surrounded by impossibly green fields and they even have glamorous cows! Now Scotland has spectacular cows too but let's be honest they are usually up to their ankles and mud, I'm not sure that would be acceptable in Austria.

So as a place to go to talk at a health event it may be a bit of a trip, but it was worth it. It was the European Health Forum and the Alliance was asked to speak on self-care. Sadly I couldn't attend it all but I did value the discussions I listened to and was part of. The report we were discussing at the session I spoke at was comparing 10 countries in Europe's attitude to self care and was fascinating. Perhaps what was most interesting was that people did recognise the importance of their role in self care but also that levels of confidence and health literacy were very low, affecting their ability to self care.

Scotland was one of the countries involved and the feedback from the researcher that the focus we have had on self management meant that we scored well overall. I've yet to see the detail but it was hugely encouraging to hear that. We are small nation but it shows what a focus on enabling self management and person-centredness can achieve. There has been political consensus in the main in Scotland re the direction of travel for healthcare in Scotland and that stability in a National Health Service  plus a commitment to improvement has allowed good progress. Having people at the heart as partners at all levels is our great strength and long may that continue to develop and be the positive influence it needs to be.

What was striking too was the commonality of the challenges. Health inequalities are widening across Europe with the affluent supplementing their treatment with private care in many countries. I heard some countries have stopped investing in new drugs or technology because of cost in a recession. Similarly demographic trends of ageing populations as well as public health trends like obesity are leading to shared concerns about the sustainability of health systems. The strength of these events is to share the challenges, learn from each other and give stimulus to change. But I still felt the person with the lived experience was missing from the debates. It we want to lean into the future in a way that enables the shift to people being true partners in their care, that won't happen without them being a key part of everyone forum for debate.

 "Transforming healthcare does not empower people or patients but empowering people does transform healthcare." 

I read this quote this week and thought it was absolutely right. And that's also about recognising the power of different information and support mechanisms. Patient organisations are under utilised resources and I suspect we have yet to learn the power of bloggers, tweeters, Facebook to inform, support and connect- all things that help as all improve our health and wellbeing.

Reasons to be cheerful
As ever it's connecting with people that makes life rich and interesting. I enjoyed time with new people at the health forum. The local people too were friendly and helpful. My German is now not just rusty it's completely failed its MOT.But I did manage the odd word in reply. Events that have most people speaking in accented English somehow always manages to evoke the European song contest for me but I'm glad to say the results from the Scotland jury were all favourable!
And finally Sunshine on Leith is in your cinemas now I hope. You can't help smiling and it's Edinburgh in its glory!Here's the trailer.