Saturday, 20 December 2014

Let it go....



The A82

Any regular readers of my blog will know I'm regularly in the business of supporting the transformation of health and social care. It's inspiring work, especially when I work with people truly committed to improving people's experience. But as we know we are told constantly that the service is in difficulty, that the needs are outstripping the resources. Constant tales of unaffordable medicines and waiting times in A&E fill our newspapers and so when I do work with the public on how to improve health and social care it's those stories I wait to hear.
And yes I do hear of people wanting to go home from hospital but not able to do so because of lack of proper home care support, the kinds of issues that creative responses to integrating health and care may actually help with but that's not the main issue. Neither you may be surprised to hear is it about access to life lengthening drugs for people with cancer. These issues are real but they aren't the ones on most people's lips. I'm sure I will have met those who have hung about in A&E for a bit too long but generally if the care has eventually been fine they are happy to accept a wait, however inconvenient.
Can you guess what people tell me when I do this work? Most often what they say is we want them to really listen to us, to hear what we are saying and treat us with respect.  To invest in the things that help us to help ourselves, to help us understand how to keep ourselves well, whatever our conditions and help us understand where we can look for support when we need it. See me not my condition the plea.
I work too with professionals who want to deliver quality care and support, who see the contradictions in their role, who too want to be heard, respected, treated with humanity. 
Indeed a group of person centred coaches I work with developed this list of hopes for Christmas for those  in the field of health and care.

The 12 days of Christmas."integration" brought to me..
Love
People matter
Encouraging culture
Openness, trust and respect
Nothing about us without us
Positive risk taking
Celebrating success
Learning from mistakes
Feel valued
Everyone involved is on the bus
A82 vs dual carriage way
Let it go……..

We thought maybe we could adapt the words of a certain song for number 12 but on further listening the much heard lyrics seemed strangely appropriate!https://www.youtube.com/watch?v=L0MK7qz13bU....enjoy a wee sing a long!
 But you do have to be a local to get the A82 analogy of number 11 but actually it's one of the most beautiful roads in Scotland, you just don't want to have a medical emergency on it! But there is a beauty in our all messiness as human beings and in the local communities which remain close and connected and whilst they may not have shining motorways, there is still heart. 
And that's the theme I hear lying underneath all of this. Let's bring our humanity and our heart into health and care. I know there are big decisions to take, challenges to face and long lives to accommodate but it seems to me if we bring a our hearts, our humanity and ensure individuals and communities are key participants in this decision making we are more likely to get it right.
And don't just take my word for it. this years Reith lectures are focused on enabling the right conversations at the end of our lives. The wonderful Atul Gawande makes a very strong case to do this differently. do listen
http://www.bbc.co.uk/programmes/articles/6F2X8TpsxrJpnsq82hggHW/dr-atul-gawande-2014-reith-lectures
So I don't want a lot for Christmas, mostly it's to let our hearts shape our work in health and care, recognising our shared humanity is the change we collectively seek. That's the beginning of our path to wellbeing....
Wishing you all the best of the festive season...


Monday, 15 December 2014

Seasons of Grief


Seasons of grief

Cold and frost define
Your loss 
Christmas cheer 
Jars with the
 Devastation of grief

Your heart shattered 
By love and loss
A future changed 
Scarily unknown
Far too soon for goodbye 

In the dark shadows
Hold on to 
Your love, your memories
The gifts of joy
Celebrated, precious

Your greatest gift
Of your love and care
Leaving this world
At home with those he loves
And always will

Be warmed by this love
And those around you
Kindness and love will cause
The frost to thaw
Hold it close

There will be happier times
Again for you all
Spring will follow in time
As will summer
Till then keep
Warmed by those who love you.

I wrote this poem for a young family who have lost a husband and a Dad this week. It's my way of trying to bring comfort, as much as anyone can just now. I share it in case it helps anyone else struggling with loss just now. A thinking of you all. 

Friday, 5 December 2014

Living not waiting?




The Waiting Room

Intent on newspapers, phones, the floor
We wait, a studied calmness
I see the strain in faces
The men alongside the women
Silent in the main
Waiting our purpose here

A sigh, a shuffle of paper
Down turned eyes
The door opens
A name is called
We settle back to our waiting
For our turn to leave

The December frost sets the tone
Of this winter day
Life bustles with Christmas
But in this room we wait
Our lives on pause
Our breath held till we know

Behind me the Blackadder painting
Attempts to soften the blow
The soft purple Iris bring
Colour and life to the starkness
A fellow survivor-so her work
Holds that deeper meaning

Twenty years since I first sat waiting
To know my fait
To learn that cancer would change my path
To scar my breast and my life
Is that it's legacy?
Waiting to know its next move

The king of players
Omnipotence in it's hand
Defiant I set my face against it
My life, my decisions give me
An illusion of control
That's enough for now

The ebb and flow of the waiting room
A hypnotic movement
One tense face replaced by another
Flicking through journals to stop
Thinking- mind full not
Mindful in this waiting room for life

My turn in time
I face the judgement of the
Clinicians skill and cold steel
Of the mammogram
I leave with a warm dose of optimism
No longer waiting but living

Actually it was out to a walk though the park on a wonderful winter day,a fabulous blue sky then tempted us into a walk through the Botanic gardens. 




 

Saturday, 15 November 2014

Still feisty after all these years...



I come from a long line of feisty women. No surprise there I hear you mutter. And mostly it serves us well. My Grandmothers lived through two world wars, deep recessions, losing babies and teenage children even and then widowhood. These were such tough times.
 My own mother in some ways had it easier; better times and better medicine eventually made her life more comfortable, her own babies safer. But she too lived through her teenage years in a town that was relentlessly bombed during the war and that left its scars. Her evident fear during a storm a testament to those early years spent in bomb shelters.




This week has found me in deep reflection about the past. November 12 was the anniversary of my fathers death. Twenty years have passed and perhaps it's juxtaposition to the Remembrance ceremonies, with that 100 years commemoration of the start of the war that was to end all wars,that made it so poignant. We came upon this wonderful tribute from his home village on return from serving in the war. 

So many lives changed by that war and others. This of course was the stimulus for our welfare state, people no longer willing to accept the status quo. Are we really willing to stand by and allow it to be dismantled with all it stood for? He for one would be very, very angry if he were still here to witness it.

The twenty year anniversary of course is also of my mother being windowed. And although over the years she has spent many holidays with the family, all celebrations shared together, weekends with us all and so on, nonetheless each time she has returned to an empty house. Of course she had her routine, punctuated by time with friends, reading, favourite TV programmes, hobbies and the like. But in the last few years Alzheimer's has robbed her of those and of her fragile peace of mind. The time had come that being home alone was jeopardising her wellbeing and safety. Of course that feistiness served her well but it was no longer enough. And so this weekend she went to try out a care home to see if it would help. The family achieved a remarkable changing rooms transformation on her room. Creating the familiar around her. It was overwhelming at first but she has quickly adapted and is thriving with having company. All fingers are crossed that may even help her regain some of her dramatic weight loss but if not at least she will be feeling safe and be celebrating her regular quiz and dominos success! It has taken support from the family to enable that and it also takes real courage to face the kind of change she has. 

Much of the drive in health and social care is to keep people out of hospital, to stop admission, to enable early discharge and of course that's right. No one really wants to be in hospital. But we are social beings. We need the connection of others. Especially when we are unwell. The milk of human kindness is part of healing and wellbeing. I fear for our future, where single households are the norm and in general we are a more disconnected society. Can we start to find ways to respond to this now?

We do need however to ensure that health policy and personalisation approaches connect rather than isolate people. Prescribing a pill may lift a low mood but it won't stop loneliness. We prize independence but do we also need to relearn interdependence, how to share, collaborate and create together. As family units change so can social units maybe? The answer doesn't need to lie with institutions but within communities too. Of course there will always be a need for increased support as our frailty increases. And our own experience reminds me that we shouldn't fear modern care homes who offer person centred support and kindness when we need it.

Courage comes in many forms, keeping going through the hard times and also knowing when to accept help. The public services role is to support our personal and community assets, not undermine them. If we keep remembering to ask what matters to them we are more likely to respond accurately to the need, not making assumptions that can threaten wellbeing. Yes we need to keep people out of hospital but that doesn't mean the only answer is to be at home alone at any cost. Is there a creative answer to this I wonder?

Sunday, 2 November 2014

People powered reform of health...thats got me singin.






Yet again I have had to engage with the NHS recently and I have been treated with respect, compassion, taken seriously and supported with clinical competence. I'm so grateful to all who play their part. In many ways the system works well for me, especially as I  have a good level of health literacy, given my nursing and public health background. But when it comes to my Mums needs, frankly, its poor. Frail both physically and mentally now she is so vulnerable and without my sisters nearby support, coordinating her care, advocating for her, plugging the many gaps and lack of joined up thinking I really find it hard to see how she would have survived, and certainly not at home.
Aged 86 and well until recent years she has done well, but its heartrending to see her decline now. She is typical, not unusual. Thankfully she and my father saved for this rainy day and it is helping her afford the care she needs but my sister has the finger in the dyke of her need and lives with the constant anxiety of what will happen next.
It's no surprise to me therefore that we have had reports of the pressure on the system, on waiting times, on recruitment, on burnout of staff. I have suggested in the past like others we need to decouple health and social care from politics but let's be honest that's not likely to happen. But the pressures on our health and care system is echoed across healthcare systems in the developed world. The combination of us living longer and therefore developing longer term and more complex needs for care and treatment of course are part of this. So too is the development of expensive treatments that extend and improve life in a way we couldn't have imagined a generation ago. We look on and expect others to make decisions on which drugs to fund, to play God or a kind of Russian roulette to decide who can have the life extending drugs and which we can't afford.
We expect targets to be met at the same time as politicians in Westminster are saying austerity measures cannot be avoided. It's not sustainable to expect both and we all need to be part of the conversation to decide how we improve and sustain things in the longer term; as well as what we are willing to pay to achieve this. There is no doubt that health will become the political battle ground of the next election but I fear that will serve nobody in the longer term.
We need a vision that enables a greater wellbeing for all, that works with individual and community assets not their deficits,we need to bring love and humanity into the whole process of care, and have honest conversations about what we prioritise and what we don't. And we need to stop thinking that changing structures or organisations will solve things, they won't. The best thing our politicians of all hues and nations could do now is get around the table with representatives all of those who work in and experience the service. Then commit to working with them, to really listen and to learn from them to work out the best way forward and indeed what that will cost.
Let's also have the wider civic conversations like we had in the run up to the referendum here in Scotland about our health and care system and recognise that we all have our part to play to support the services of health and social care to thrive. 14,000 people in Scotland did submissions to the Smith Commission, can we harness that engagement around our health and care service and shape together the future service we need?
I think we can, I think we need to. We know this matters to people, let's trust them to understand the issues and  to help shape the future.   
I leave you with the words of that well known optimist Leonard  Cohen for all you who feel concerned that the opportunity for positive change wont come," Youve got me sininging."