This blog is about my thoughts on my own experience of breast cancer and becoming disabled, on self care, my passion for improving health and healthcare and about heartful leadership in all areas of life.
Tuesday, 31 March 2015
Are you curious about what it means to be wholehearted?...see my new course
I'm so pleased to be delivering this as one of a group of people not only across the UK but in Brazil too. My course will run in Edinburgh from April 20 until the end of June in the Edinburgh Gestalt Institute in Lothian Road. If you are interested in becoming more mindfully self-aware, deepening your courage and resilience and working with your purpose and passion in life then come and join us. The dates for the course are April 20, 27, May 11, 18 and 25, June 15.
Only the lonely....
I was
reading an article recently and it posed the question "what do you fear
most?". Straight away I thought "loneliness" and I admit it
shocked me. Where did that come from? Of course I know we have an issue with
loneliness in our society. We have more single person households than we have
ever had and that affects not only older people but younger people too. We have
more digital interaction but that in itself can erode human relationships and
connection which we need to thrive and to stay well. Loneliness has an impact
on life expectancy equivalent to 15 cigarettes a day. The connection of mental
health issues, especially in men who are isolated, young and old, is clear and
a serious concern.
But as
someone who doesn't live alone, is meeting with people daily, who does a job
she loves which is all about connecting with others, why did it spring to my
mind immediately? Perhaps it's because I know the impact on me when I feel
disconnected from the world. And it's been illness that has caused that for me
in the past. Even as a child who had recurrent asthma in the winter I remember
that sense of missing out on time with my pals, of life passing me by. More
recently of course it's been breast cancer alongside the asthma flair-ups that
has had an impact. My friends from the breast cancer community who have
developed metastatic disease describe so movingly the isolation that their
devastating diagnosis can bring. All their energy stolen by medical
appointments and even the fear of the future itself robs well-being.
I have seen
too the impact of dementia on my family and how that robs confidence, mental
wellbeing and can hugely increase anxiety leading to social isolation and
crippling loneliness. Seeing my own Mum retreat gradually from the world due to
Alzheimer's has been heart breaking. Perhaps it's no surprise then that I fear
loneliness. So what can we do?
Listening
to a radio show about the Big Sing brought this to mind again. One of the
benefits of singing in a choir they mentioned was bringing people together not
only to make music but also it reduces loneliness, stimulates endorphin release
and improves immunity. I'm signing up! One of the commentators on the show said
that the NHS had to tackle social isolation and I found my heart sink. Really
has our NHS to be responsible for that now as well? How is that even possible?
Has our reliance on the state come to this? In my view the NHS and social care
has role in recognising the impact of isolation on health, on how ill health
impacts on isolation too and very importantly it has a role in ensuring health
care does not increase loneliness and isolation. I would question for example
if the desire to keep people at home whatever the situation is always right?
More person-centred homely options should be our goal for many people as their
independence declines. If our service increases their isolation we must
challenge it.
As
individuals too we need to recognise that wellbeing is served not only by
healthy food and activity but through social connection.
My own
recognition of that has made me consciously find ways to connect more, to find
time to spend with family and friends to make myself connect even when I feel
least like it.
My work
with the charity sector also highlights how huge a role that sector can have to
prevent isolation. Sometimes that may be
in recovery or during illness, like the national organisation Maggie's centres or fantastic local organisations like the Serenity Cafe in Edinburgh or
the Hope Cafe in Lanarkshire and Midlothian's very own Pink Ladies 1st. For all of
them peer support and human connection and compassion are the compelling and
impactful mix. For others it maybe the early morning call of organisations like
the "Good morning service", it’s the lift to church from a
fellow worshiper, it's the community friendship group...the list is endless of
charities making a huge contribution to individuals and communities. The role
of health and social care is to connect the vulnerable to those organisations and
communities and recognise and value their vital role.
As the
recent publication the Enabling State illustrates, the state’s role here is to get out the way. A role ably demonstrated
by the self-management fund in Scotland which is funded by government and
developed and delivered by the Health and Social Care Alliance Scotland. The
more initiatives like that happen, the more we will see change.
And
finally my personal hot tip for connecting with your community is get a dog!
Preferably a rescue one and then you have blessed two lives, yours and theirs.
Our dog Cara, from the Dogs Trust has
connected us as nothing else could just now. I know so many more simply lovely
people just because of her. How could you resist those ears after all?
Happy
Easter to you all. May this start of spring bring you connection and joy.
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...
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