Saturday, 7 March 2015

The paradox of health?



"The ultimate paradox of thought: to want to discover something that thought itself cannot think."
Kirkegaard  


I can’t be alone in seeing the contradictions in where we find ourselves in the great health service debate currently? 
It's no coincidence of course that approaching one of the most hotly contested general elections in Scotland and the UK the health service is taking centre stage. With headlines of missed targets on each news report not only in Scotland but also across the UK are these headlines and blunt measures missing the point and masking the very things we need to be talking about? 
In recent research (http://www.oasishumanrelations.org.uk/content/uploads/2015/01/7-Principles-to-Shape-the-Workplace-of-Tomorrow.pdf) I did with Oasis School of Human Relations I found studying the paradoxes that emerged from the question about the Workplace of Tomorrow were a vital clue as to where the heart of the issues lay. Those paradoxes illuminate the apparent contradiction and through this the connection to a possible undiscovered truth. That experience has led me to want to question what the paradoxes and fundamental questions of health and care are from my perspective.

The paradoxes of health?

The unparalleled access to treatments alongside a building need and desire to learn and access self-care:
   Are they contradictory or are we at a stage in the process of healthcare and the pursuit of wellbeing, where we are awakening once more to the reality that our experience of wellbeing will be within ourselves? Yes medicines and other treatments have a role in the management of illness and disease but they will not make us well. The medicalisation of health means that as a culture we need to (re)learn to self-care and self-manage.  And the answer to that is unlikely to be in traditional health systems but in wellbeing focussed approaches, peer based support, in community, in connection and also in increased self -awareness. 

The gift of longer life or the curse of longer life?
Before we leap to complain about so many of us living longer can we pause to celebrate the longer lives that many can now expect? Age is not disease; surely our goal instead could be to create a society that celebrates ageing: that understands that memory loss does not makes us less human or valuable, just more vulnerable and that recognises as we age we can play a different role in society, not necessarily a worse one. Let's reframe our attitude to ageing, to disability, to caring and maybe we can start to experience it differently too.

Focussing on healthcare at the expense of enabling well-being 
So used are we to the solution to health being in healthcare we have lost trust in our ability to self-care. We have set aside ancient and inner wisdoms in favour of a prescription. We even need prescriptions for exercise for us to know that keeping active will keep us well. The all-consuming machine of healthcare means it’s easier to fund expensive specialist treatment for our 90 year olds than it is to provide flexible compassionate care and support. Healthcare development has added life to our years and years to our lives, I know this well but I suspect we never intended it to take precedence over everything else. Let's start to look now at how we balance the specialist with the holistic; creating a more mindful, person-centred service. 


An emphasis on social independence at the expense of interdependence
Ours is a culture that has valued independence above so much. We have praised those who have survived alone, we live in glorious isolation even as we recognise our need for social interaction and we see dependency as failure. Loneliness is becoming our worst long term condition without a smoking ban equivalent to hold it in check. Is it time to question this value on independence now? Can we begin the conversations that say as my need grows I want you to help me understand and achieve what helps me live a fulfilling life and contribute to the world. Can we start that process for ourselves even, rather than our only directive to our children being; don't let me be a burden? 

The acute care distortion and the impact on research and resource for long-term care and support
It's long since been the accepted assumption that the successful doctors and nurses worked in hospital with consequent lesser respect for people who worked with those with long term needs, with families or with community. One of the consequences of this prejudice is that acute care isn't just seen as the “sexy” side of healthcare but also the most deserving of our money and our attention. This matters because it’s almost impossible to get funding for research in to the so called Cinderella services unless it’s for profitable drugs. And without evidence it’s very hard to change practice and policy. This way drugs become the only answer and for long-term care, particularly for older people this means we are distorting our focus. Is it time to question the balance of priorities and value and support the practice of those who care as much as those who cure?

Political focus on targets in contrast to people's concerns about the human side of care
Missed targets, if leading news stories are to be believed, are a sign that our NHS is in crisis. Although when pushed its acknowledge that in the main in Scotland at least we are actually doing well. It's rarely I hear mention of huge waits for treatment as there were a number of years ago. Targets have improved waiting times for things like orthopaedics and it’s a welcome improvement for so many waiting in pain for treatment. But when you look at things like the wait for Children and Adult Mental Health services for example the story is rather different. That is a situation that we must address but it needs more than simply investment in more of the same, it also needs new models of care. I suspect they are community based and designed by and with young people themselves.How much resource do targets distort and distract us, from this service and others, from looking at what are the long-term changes that are needed? A focus on targets risks creating a focus on short-term fixes that perpetuate the issues.
So often feedback to improve the NHS in general is for better communication, for more mutual respect and for more information and support at the right time. Targets can't fix this, focusing on people can.

Evidence-based focus contributing to declining compassion and care
I have begun to believe that perhaps the focus on evidenced based medicine in training medics and others may have had the unintended consequence of leading to a loss of the care for the person. When someone can write as I have read " there is no evidence compassion improves outcomes" we have to accept that things have tipped too far. A focus on finding the answers through medicines and interventions has perhaps inevitably led to us being distratced from the human being in our care. How do we rebalance care to ensure that the art does not trump the science of care?

These are contradictory and complex times in healthcare which is why when the answer is seen in one dimensional terms, no answer will be right. The truths are multiple. Undoubtedly there is outstanding care given to people now in our health and care services. I work today with some of the most motivated, compassionate and informed teams I have ever done. They are outstanding in the care they provide and also in their efforts for change to a more partnership approach to care and support. But what's also true is that they are stretched by the sheer numbers and complexity of the people they serve. 
Alongside the complexity of the health and care issues people present sits a consuming bureaucracy. What I notice is an increased focus on processes that were thought to help but instead create their own disorder, their own tyranny of wasted energy and distorted focus. We need to free people up to do what’s right and re-engage them with their own human response to need; free of unnecessary bureaucracy.  Neoliberal politics and policies have infected our culture at all levels and healthcare culture too has not been immune to its impact. What could we enable instead by simply trusting more?
Perhaps the ultimate paradox for me is that we maintain a focus on fixing the damage and yet march on with a system which widens social inequalities which in turn have a serious impact on health outcomes and also perpetuates the myth of a pill as an answer to every problem? I urge us to awaken to all of those paradoxes and identify the many more that exist, to start to explore the deeper challenges, to recognise that these are the things we need to tackle and we won't do that by keeping doing the same at a personal, societal and indeed political level. 





Sunday, 1 March 2015

Proceed till apprehended....







It's now March, six months almost since one of the most outstanding times in my nations history. The Independence Referendum engaged so many of us in conversations about the world we wanted to live in, the society we wanted to shape and the things that offended our values, kept us a wake at night and that we wanted to be different for our future generations. We met in church halls, yurts, cafes, street corners, you name it, we met there, we gathered, we hoped for something more than we were being served up as the only way.

And then we woke up. We woke up to a no vote. We woke up to the fact not everyone wanted things to be different and to the fact that those with a very huge interest in keeping it the same had thrown every single fear in our faces, piled the pressure of doom on our heads and had stopped the social movement winning.

But did they? We all have our stories to tell about what have experienced since then. And in many ways I know I'm still working it out. I know I'm not ready to step back and accept the status quo: our unequal, ill divided society, that puts economy before community.

The question for me is how best to play my role?

I have stood for selection for Westminster as an SNP candidate and didn't get selected from the many others who were skilled and passionate too about making a difference. However my relief at the result has told it's own story to me, I'm happy for others to make there mark in Westminster. But I learned a huge amount and will take that with me, the learning and the challenge secured. And what's more I enjoyed the hustings, the debate came to life again and that's what mattered. Like many others I'm working out how best to influence for change and I know it's multi factorial. And that's not only ok, it's pretty exciting too at times.

So yesterday's Women for Independence event, that I helped to shape and chaired part of,  in Edinburgh was a first in the east of Scotland. We worked with a tiny budget and created a day that stimulated, motivated and celebrated women making a difference in politics. Like me many of the women are still working out how they too can play their part. The message of the day was, you are already changing things, keep going. But also know that you can take action.

I would summarise it as: Think big, act small, start now!



I wrote this poem to help me capture the impact of the day on me.



"Proceed  until apprehended "



The church glistened in late winter sun

Spectacular windows framed

The austerity of its presence

Tucked away behind

Gregg's and Lidl

Emblems of our times



A chatter of women gathered

Purposefully, expectantly

Together their voices rediscovered

We stood on shoulders

Of female giants

And felt them with us



We cheered for justice

For fairness

For equality for all

For bairns before bombs

For our voices heard

For change secured



The opposite of poverty

It's not wealth is it?

No it's equality

And that's our goal

Women against indifference

Women organising for change



Proceed until apprehended

Do you know what?

I think we will...



 
Never doubt that a small group of thoughtful committed citizens can change the world;indeed its the only thing that ever has. Margaret Mead

And this week too I'm talking at a Common Weal event in AreaC coffee house in Leith with my friend and colleague Andrew Lyon. We hope for great, radical conversations about the future of health and wellbeing. Six months on, yes it feels different, the giddiness of opportunity not the same but the desire, need and momentum for change hasn't died at all. What next we wonder? More of the same? I don't think so...








Saturday, 21 February 2015

what a wheeze....






I started this blog when I was rediagnosed with breast cancer and working as the director for Scotland of Breakthrough Breast Cancer. A tricky combination that made life challenging and my blog helped me make sense of it all. A few years on, I blog about lots of things to do with healthcare, leadership sometimes even politics but I rarely blog about asthma. But it is probably the thing that has sapped my wellbeing much of my life.
Of course often I don't notice it, think of it even, as my symptoms are well controlled with a combination of treatments and the avoidance of triggers. Food can be my downfall and I know to avoid wheat, apples, chocolate (not fair!) but sometimes I get caught out. Mostly it's a virus that pushes me down the slippery slope.
I have steroids at home to take if I get acute symptoms quickly and usually wait too long to take them. I have a cough that shakes the rafters at times and I want to wear a sign that says " I have never smoked" because I notice the look on people's faces. Mostly, like this weekend, I feel dog tired when its bad. Do I check my peak flow- yes occasionally but I know when I feel my necklace is too heavy that things aren't good. When I cough no matter what I eat, that I need to take more treatment. When I'm worried about going out in the cold especially if its windy and I know a walk on the beach with the dog is unthinkable, I know then I need to take more of my inhalers. 
Like many people with long term conditions, I do my best to get on with it. I try to hide its worst impact and I self manage the avoidance of triggers and the side effects of treatments. I balance taking the blue inhaler with the risk of the shakes that make you look like you have had a night on the tiles. I balance taking steroids with the knowledge they will affect my sleep and that the combination of too many inhalers and steroids will give me a horrible headache.  Like many people with long term conditions I don't talk about it, I even feel  guilty for having to give in to it. Even laughter makes me wheeze.
 I'm not seeking your sympathy ( honestly!) but as someone who is a health activist who works frequently with people who struggle with many hidden conditions I thought rather than blog about cancer today I would speak some of the truths of asthma instead. 
I'm feeling resentful of having to give my weekend up to the effects of asthma. I'm trying to stop my thoughts of how could I have thought of a political career when I find myself felled like this at times. After all if I had a more obvious disability I would surely not want to exclude myself or others from public office? And I know now to not make career decisions when I feel like this as it will pass. I need to remind myself having asthma is not a weakness, it's a condition I do my best to control. So this blog is for the huge number of us who live with the hidden conditions and do our best to live the life we want to. Let's give ourselves a pat on the back.....because frankly sometimes it's just a long hard slog.
So this weekend I will ensure I have time to rest and recover and maybe tomorrow if nothing improves I will start the steroids .....
But the good news is this time means I'm reading Sally Magnusson's book Where Memories Go and feeling in awe of her talent and admiration for her courageous commitment to improving our understanding of dementia. Words can change understanding and attitudes, especially those written with such eloquence and compassion. 

Tuesday, 10 February 2015

Youthdew


This time it was perfume
A drift of a scent
A memory evoked
A heartbeat skipped
I thought of you
As you were

As I glimpsed I saw
An old man turn
A stranger of course
My own Dad
Long gone, long mourned
Still missed

But you've been luckier
A new generation 
Has been born
You have watched as they thrive
Their smiles warm
Your ever shrinking life

Your life now is in the moment
And that's enough
It has to be
Memories- no one can take them
You told me recently
I smile and wish that was true 

Saturday, 7 February 2015

Are you changing soundtracks?








I have found myself thinking about soundtracks of late. In the WEL we talk of changing our personal soundtracks. You know the ones?- that say we aren't well enough,or maybe good enough, strong enough or similar and they can stifle our recovery and our achievements even. Maybe your soundtrack is downbeat at times, sad too or even jarring and discordant but essentially you feel it doesn't enhance your life. But here's the thing, you can change it. And what's truly wonderful is when you change the soundtrack you change how you experience life. We aren't born with these soundtracks but life starts to orchestrate them for us. Often we think we are stuck with them but the reality is we aren't. It's a liberating thought, all we need to do is find a new soundtrack and focus on that one and create the right conditions for it too. Still the mind, be mindful rather than mind full and practice the new music. It takes effort but it does help.

Much of my work of course is with organisations and groups within them not just individuals and I have been reflecting on organisational soundtracks too. Is there one theme, one orchestra or are the strings not playing, the horn section in a different key, the brass section too loud? Is there a discordant soundtrack creating the stress and tension that gets in the way of our purpose? You get the analogy I'm sure. What creates the music though? It's the space between the notes, the relationship to each other that creates the sound; it's how they relate to each other that matters, not each one on their own. So maybe the biggest learning is that we transform organisations not in isolation, we do it through building relationships and enabling a soundtrack that is dynamic and uplifting. Its the long game, no quick fixes here but its the game of sustainable change nonetheless.

It was my birthday this week. A few years ago I discovered its world cancer day on my birthday. Its been a particular source of grievance for me! It feels in the way of my birthday somehow but this year I decided to change that soundtrack. Because what two cancer diagnoses teach you is that the only thing worse than getting older, is not getting the chance to. When I was diagnosed in my thirties I never thought I would get to this age and Im so grateful to have been able to celebrate with family around me. 
I also heard that day that I hadnt been successful in my campaign to be selected to stand as an MP in Edinburgh. And that felt ok too. I had lovely feedback from people, was true to myself and my values, met great people along the way and learned loads. I had pushed myself out of my comfort zone, which I regularly encourage others to do and maybe I didnt succeed, but neither did I fail. So my soundtrack just now is a joyful one full of lifes wide experience with a rich tapestry of a much loved family and great friendships and I intend to play it as long as I can. And to live up to this message too....feel free to join in the chorus?




Sunday, 25 January 2015

Tae a breast...

Apologies to the Bard on this his birthday, but I wrote this a few years ago after my second diagnosis of breast cancer. I must admit when I was thinking about the future I didn't think I would be doing what I'm doing now. But I guess this life expereince has taught me not to waste life and to make the difference I can when I'm able. For all who face adversity, you never know what life can hold, don't waste a minute of it....

Tae a breast!

Wee sad and broken tim'rous breast,
O, what a panic was in my head!
I need na worried awa sae hasty,
Wi' fear and fright!
I wad be laith to lose thee
Withoot a fight!

But breast, I tried before wi’ sma’ gain
In proving foresight may be vain;
The best-laid schemes o' mice an' men
Gang aft agley,
An' lea'e me back to face more pain,
And chance o’ more!

And sae to clinics I maun go
And nae new cancer to show!
Decision time wis loomin
Wid staying as is stop me from bloomin
Aye the answer had to be and sae
To the surgeon I maun gae

Still I am blest, we must agree;
Only the surgeons knife will toucheth me:
And och! I must cast my e'e,
On hopes for prospects cheer!
An' forward, tho' I canna see,
I guess an' try no tae fear!

Saturday, 24 January 2015

Almost like the blues..





January can be a difficult month for many, depression can stalk us when there is such little day light. Its lightened only by scenes like the one above that greeted me this week in Inveraray.

Like many I have experienced and witnessed the impact of depression on myself and people I love and its a devastating illness. So often it's undiagnosed and diminishes lives, steals joy, steals life even.  It's the great unspoken illness. Years ago we used to whisper the word cancer, now it's said more openly; but not so depression. It's still held secret often and nursed as something shameful; a failing. But no one would choose depression, would they? That dark tunnel of anxiety, that crushing burden of joylessness, that feeling of hopelessness, those weights tied to your life dragging it down making the simplest of tasks a nightmare to achieve. No-one would choose it and yet still guilt sneaks in, part of the symptoms it seems, destined to feed the condition, to further dent a fragile self esteem. 

So when I read an article that said actually depression isn't the psychological problem we thought but really more a physical one, I caught myself feeling an element of relief for a moment. "Not guilty your honour, wisnae me, a virus done it and ran away". So I kept reading....


The researchers had noted that depression frequently was preceded by illness and they noticed increased inflammatory responses. Is depression a kind of allergic reaction to illness perhaps? We recognise that inflammation plays an important part in our most recent epidemics and  some suggest depression may even be as a result of infection.

But..

" Others arent willing to go that far, not least because infection is not the only way to set off inflammation. A diet rich in trans fats and sugar has been shown to promote inflammation, while a healthy one full of fruit, veg and oily fish helps keep it at bay. Obesity is another risk factor, probably because body fat, particularly around the belly, stores large quantities of cytokines.

Add this to the fact that stress, particularly the kind that follows social rejection or loneliness, also causes inflammation, and it starts to look as if depression is a kind of allergy to modern life ."



Depression may be a kind of allergy to modern life; a challenging statement and yet it also makes sense. So what is the answer? It's complex isn't it?
Perhaps not, the answer lies in an anti-flammatory pill say the researchers, maybe taken alongside an antidepressant to improve the effectiveness. Crack out the neurofen! Of course the solution to our modern life will be a pill, that's in keeping with how we run our modern lives, isn't it? But I found myself deflated when I read this. It was a bit like almost finding a secret treasure and then realising it wasn't special at all.
If we think of allergies after all, we might take an antihistamine but we would also avoid what made us allergic wouldn't we? I agree it makes sense that depression isn't only psychosocial, but the solutions must surely also lie in how we live our lives and how we treat ourselves and others with compassion.

I do hope our answer will instead be to begin to peel back the layers of the unintended consequences of modern living. We need to get back to eating food, ( see my blog on this) not a manufactured version of it and as a society we need to make that easy to do. Let's  collectively acknowledge the impact of modern living on health and not blame individuals for this but instead work together to make it easier to embrace wellbeing in its widest sense.

I firmly believe the call for change we see in politics just now is people finally saying we need to change how we do things. And that's scary, but maybe it's scarier to do nothing?

Governments can't have all the answers, no one does but let's give our support to those who are willing to focus on wellbeing for all, foster thriving communities and who demonstrate compassion for all. We can make that difference and the right time to start is now. 
For my fellow Cohen fans....here he is throwing out a challenge as only he can do..as he says ,its almost like the blues.