the paradox of illness?

I'm in a strange paradoxical place just now; slowed by the rhythms of breathlessness to a

different pace that's closer to becoming my norm now. My head is in a dilemma of how to

recover my former state whilst accepting or at least working within my new reality. It's the challenge of managing a long term condition and knowing how and where to push the

boundaries of an undiagnosed problem. It's exhausting at one level and at another level,

strangely, it's quite compelling; that call just to sink into the soft landscapes of being

peaceful.During the time in the wonderful landscape we visit in Bulgaria it was simpler just torespond and to rest. The mountains reach into the soul and soothe it in a way that justinvites a different pace, a different living. The internal and external find an equilibrium that is so very inviting. I found myself thinking of it today as I listened to this podcast by John O'Donohue and Krista Tippett.

I'm reflecting on whether I'm typical or unusual in a way that I'm finding myself discovering a kind of well-being through illness. It's focusing the mind, slowing down the body and creating a different, slower way of being. And it's quite welcome in a way. Maybe I'm always destined to learn the hard way but at least I'm still learning!

I'm reminded of a section the Mary Oliver poem

Wild Geese

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert repenting.

You only have to let the soft animal of your body

love what it loves.

Today the soft animal of this body just wants to rest so that's what I'm doing. It's been a

lovely summer, though punctuated by illness, it's also been that depth of reminder of the

importance of love and family; of taking time to listen to the soul and responding to its

voice and of having time just to be in the preciousness and arbitrariness that is life.

I said this year would be about making memories and they are all precious, even the hard

ones. The soul is fed by many things and to finish I want to share with you the song that

moved me ( and many others) to tears as I watched the Glasgow Girls ( go and see it!) in

the Edinburgh Fringe. In a week when images of children have stabbed our eyes and

raised our consciousness yet again of the trauma being inflicted on Syria and beyond, I

share with you the song; "It's no a wean's choice" ( it's not a child's choice)

We need to talk about targets...

As part of the portfolio of work I do, I'm proud to be the Associate Director for the Health and Social Care Academy, a programme of the Health and Social Care Alliance. The Academy’s particular purpose is to "drive transformational change in health and social care in Scotland through the lens of lived experience" a focus I strongly believe is a key component of transforming care.
Following a recent think tank we developed the Five Provocations to help focus on key areas  where our work highlights that we can make a transformational difference to peoples’ lives. Through all our work we  seek to embed and reflect the PATH ( person-centred, asset-based, transformational and from a human rights perspective) and both shape what we do and why.

One of the key provocations identified was the need to review the target culture of our care systems. There was a consistent and insistent theme that targets affect the whole system of care and consequently set a culture of care that may indeed fly in the face of many of the other transformative changes we seek. What is measured will shift the focus of care and may have a paradoxical and distorting impact, not least on the experience of those receiving care.
My background is in nursing, I have trained in health service redesign and more recently have been a leader of third sector organisations  Diabetes Scotland and Breakthrough Breast Cancer in Scotland, as well as founder member and Chair of the Alliance. This gives me a broad perspective on the widespread influences on this subject. But what perhaps matters most right now is my lived experience in this territory.
I've had breast cancer three times now in my life, most recently within the last year. And I would like to use the rest of this blog to explore what I have learned through my recent experience and how that has shaped my thinking in this context. Let me tell my story this year to identify what has excelled in my care and what hasn't but importantly  what could have made a transformational difference too.
I was re-diagnosed at a routine follow up appointment at the end of the year. The tests were done as a one stop shop in the clinic and although I was last to leave that day ( experience has taught me the significance of that) I then just had to wait for the detailed pathology analysis. The consultant phoned me with the results and talked me through my options. He mentioned we could start treatment immediately by prescribing a drug that would target the cancer cells which would meet the target for treatment and importantly give me the time I needed to know what surgery to have. It also would give me time with my family at Christmas, time to see my Mum with Alzheimer's before my surgery, time to decide what was right for me, time to adjust to a third diagnosis and what that meant for my life in the future and time to organise work commitments ( as someone who is self-employed that was crucial for my business to survive too). I needed that time,how can blanket treatment targets really reflect that for every individual? What mattered to me was to know as soon as possible, to have the information to make the decision that was right for me and my family and to be supported in that and then to plan my surgery that took account of my life circumstance. That included being able to still have my 60 birthday celebrations with my family and friends in my post-operative period. The surgeon and breast care nurse both took account of this in planning my surgery and persuaded me not to cancel. They knew that celebrating my birthday with those I love would be as crucial to my recovery as any prescribed treatment. Throughout that time I felt cared for, felt trust for all of those who cared for me, it felt like clinically skilled and deeply compassionate care. I felt very fortunate.
And I wish that was the end of the story but sadly it isn't. Since the surgery I've been breathless which remains disabling. I still don't have a diagnosis and have found myself bobbing around in a system that's ill equipped to cope with the complex. My experience has reinforced for me how difficult it is to be seen as a whole person and an individual. Every significant person I have seen has been competent and often compassionate but the system is not only letting me down, it's letting them down too. The breast surgeon and nurse, the GP and now at last ( delayed referral and an appointments system that would challenge the patience of a saint)  the respiratory specialist are all trying their best but without a diagnosis and a key person with influence holding the situation I remain vulnerable and without the information I need to make things better. The system and my diminished health has disempowered me. I'm trying to find the fight to be my own advocate but that's draining of my limited resources and also I want to live my life beyond hospital appointments and ill-health.
So what would help me now? I want someone to understand the complexity of my situation and that we collectively have all the information to help make shared assessment and partnership decisions about how to improve my situation. I need the information myself to understand the issues better and know what I can do to self-manage whats in my grasp. I need an appointments system that recognises I have a life beyond hospital care. I need someone to see me as a whole person, not a cancer patient, a respiratory patient or any other system that fails to see all of me. I need someone to advocate for me when I can't and to know they will be listened to. I need the system, not just individuals within it, to be flexible enough to respond to what matters to me.
The only targets that will respond to those needs I have described will be focussed on person-centred outcomes. They will be targets that recognise and work with my assets as well as my needs. And they will be targets that recognise my human rights reflecting the PANEL principles ie that ensure my participation in my own care, they will be accountable to me, they will be non-discriminatory, they will be empowering not the opposite and reflect the legal framework within which they function.
Ultimately how we measure the outcomes of our systems of care will have a powerful influence in how they work. My professional and lived experience has taught me that change will come through a change in relationships at all levels in the system. There is an opportunity to be really transformational in how we approach this, let's take the opportunity in Scotland to reflect the changes we are collectively seeking and are absolutely necessary.

The power of kindness...a post script to my last blog

This is a short post script on my last blog. Yesterday thanks to the response of my local team to my blog, I was offered a cancellation at the respiratory clinic. No answers as yet which I'm not surprised by as this has been a complex situation but at least I'm in the system at last.
I'm writing this to say a warm thank you to the nurse who hugged me as I cried and spoke about how hard a year it's been. I want to say a thank you to the radiographers who were kindness itself when they did a CT scan. And I especially want to thank the consultant who pulled favours and went the extra mile to ensure I was ok. I felt his kindness and concern.
And so I return to the theme of the blog. My concern has rarely been about the people. I have seen small kindnesses ( to others and to me) in particular in the Western General Hospital in Edinburgh, it's in the culture from porters to medics there I believe. BUT some of the systems are letting this good hearted team down. And of course they are letting down the very people who need them.
I'm hugely appreciative of getting seen yesterday but what about those who can't or won't do that. I wont be content till we get it right for them too.
In a week when we lost Kate Granger who did so much to raise awareness of compassion in care  lets be reminded that the little things matter as much as the big things and that kindness too is a therapeutic tool.

An appointment with the NHS.

An appointment with the NHS.

You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.” 

― Atul Gawande, Being Mortal: Medicine and What Matters in the End

I’m a health activist and I work as a coach and leadership consultant with a special focus on health and social care. I've been a nurse and health sector charity director and I have done all of this because I'm passionate about having the best health and care possible.

This year I've come through treatment for my third diagnosis with breast cancer and my care for that has been outstanding. Excellent clinical care combined with a compassionate team at all levels.

But that's not been enough as since my surgery I've been disabled by breathless which isn't related to the cancer or evidently to the surgery. And because of this I'm undiagnosed in a system that doesn't deal with this. Without a diagnosis you are lost in a system that doesn't connect and certainly doesn't see you as a whole person.  I've been scanned and tested but still no answers. And all I have are verbal results so I have no ownership of my own information. This is the only part of my life where this happens. Finally a referral to a respiratory clinic was made in May. Well it was mentioned in a letter to my GP and copied to the clinic who didn't trigger a referral as I discovered several weeks later when I called concerned I'd heard nothing.

Finally an appointment came in when I called, so I planned a holiday I had had to cancel earlier in the year as I simply wasn't well enough. You see I know now to not dare to change an appointment.  I'm self employed, an appointment on a day I'm working is loss of income and loss of trust in my reliability. But that counts for nothing in the appointments system. I knew to my cost this already when I changed a CT appointment and got a delay of another 6 weeks.  I'm awaiting another CT as there was an issue that needs monitored and have tried to avert a problem of it arriving when I'm committed to something else, but that couldn't be done in advance I was told. So instead I have to wait and risk a delay all over again because I'm not expected to have a life beyond appointments.

So this week as I get excited about my holiday an appointment change arrives for the respiratory clinic and its when I'm holiday. I call up to explain and say I want the one I had, but that was cancelled as the consultant is off. With 10 days notice apparently. Now call me psychic but I'm suspecting its holidays. When I ran clinics as a nurse I had to book my holidays well in advance to avoid this very scenario. Is that so difficult here? So the first next appointment was the end of August on a day I have a full team event. I can't do it I said and was told  in that case I had to go back in the system. My NO contained all my frustration and anger at this unnecessary treatment. Finally I got one the next day at the very end of August and an offer of a complaint form. I was also told my unhappiness would be noted so I await my appointment with a consultant already on the defensive. That bodes well doesn't it?

So I'm breathless since January and have an appointment for late August to find out the cause. Frankly this isn't good enough. And part of the cause of this is an appointment system that is inflexible and completely not  person-centred. And the appointment staff who on have been at best inflexible and at worst unpleasant.

I know the clinic is busy but this behaviour is avoidable. There are many ways to reorganise appointment systems to make them more person-centred. And also if we are espousing a partnership approach, why don't I have my copies of all my results? I know I probably should have got pushier earlier but I didn't because I haven't been well enough. I needed my limited energy for more life enhancing things. And that will be the case for so many in this circumstance.

So hereare some links for those who are accountable for improving care.The evidence that this can be better; it can be improved with the will to do it.

http://www.rcgp.org.uk/clinical-and-research/bright-ideas/person-centred-appointment-system.aspx

http://my.clevelandclinic.org/ccf/media/files/redefining-healthcare/patient-centered.pdf

http://fabnhsstuff.net/2016/07/19/55-million-patients-england-set-benefit-accessing-gp-record-online/

And a reminder from me that no matter how good the staff are if the systems aren't person centred then the whole experience of care is affected  and the quality of a persons life is seriously limited in the meantime. I'm hugely grateful for the superb care I have had, free at the point of need, but not only is the system letting people like me down but it is letting down the very people who are truly doing their best to plug those gaps. This can be changed with some imaginative thinking, some courageous leadership and frankly some humanity. If you want help to do this, I'm just the person to help. And now I'm on the case, I'm not going away.....

Cornfields

Cornfields; Ayrshire a poem inspired by a painting by Barbara Rae on exhibit in the City Art Gallery Edinburgh. Thanks to Helen Boden for the stimulus and encouragement. 

Cornfields

The ravens flight
breaks the horizon
the corn threatened
by the coming storm.

They soar like acrobats
caught by the wind
the performance as dramatic as the sky
no net for us they cry.

I have a new Prime Minister

I have a new prime minister

I'd gone out

just for the morning

And heard it on the news

Is this

taking back control?

Be glad its a woman-

Remember Thatcher?

I need to know

what she'll do

not her gender

She wants to unite her country

this disunited kingdom

Poverty and place

Power and privilege

Are the hard borders of division

A referendum

I didn't vote for

A result I didn't vote for

A prime minster

I didn't vote for

I have a new prime minister

Who will make me less European

Powerless in my capital city where

75% of us voted

to stay in the heart of Europe

Since June 24 I've grieved

I've puzzled

I've tried to understand

I've looked everywhere

for silver linings

She alone had the courage 

to fill the empty shoes in these turbulent times

She's spoken of  governing

for all not just the privileged

So I'm clinging to some wreckage of my hope   

What  would fill my half empty cup?

A sense of all voices heard and valued

the evidence of compassion for the vulnerable 

the earning of trust

my hope for this new Prime Minister 

Compassionate disruption?

This blog is a sort of confession, I'm a wee bit addicted to politics. I have grown up with a belief that democratic politics is a force to enable all of us to have a voice and even when I have at times lost faith I have still been drawn to the possibility of something better.

So this last two weeks have tipped me into a horrible crisis of addiction to news and social media. I have read everything I can to make sense of what has transpired in the UK since voting narrowly for leaving the EU. I have looked under every stone for a glimmer of hope of something better emerging. Now I'm Scottish so that glimmer of hope for me has been our First Minister who has shown a compassionate and strategic leadership that is outstanding and yes reassuring too.

But Westminster politics has left me breathless- literally! I will admit to a temptation ( ok I've given in to it at times) to kick back in the chair, open up the popcorn and marvel at the Machiavellian drama. But mostly I'm sickened by it. It's that behaviour which has led to this situation and it seems the answer to our awful situation is to behave even worse. 

I'm sure there are those who mean well within the parties embroiled in internal warfare but those they have collectively let down are looking on in horror and fear. The roots of this decision to leave Europe go back decades; decades where a whole swathe of our population in the UK has been ignored at best, sacrificed at worst. This they believed was their opportunity to have their voice listened to and they took it. But is anyone listening to it? Not the so-called leaders of the “leave” campaign who have retreated into the cess pit of their own creation; leaving the rest of us looking on with something akin to despair and most certainly with disbelief. I can’t be alone in feeling overwhelmed.

And now the Chilcott Inquiry report delivers its verdict and my head is finally in my hands. I’ve tried to find ways to communicate my feelings but frankly I can’t find the words. No words are enough and anyway it’s a visceral loss; a grieving for a different time when the needs of people not neoliberal ideology shaped our decisions and for a time when the political elite in Westminster earned our respect and support.

 

Thankfully this weekend in Edinburgh there was a moment when we were able to believe in our better selves. This section of the First Minster’s speech helped me lift my head higher. She described a Scotland I could recognise and be proud of;

“We are the grandchildren and the great grandchildren of the thousands who came from Ireland to work in our shipyards and in our factories. We are the 80,000 Polish people, the 8,000 Lithuanians, the 7,000 each from France, Spain, Germany, Italy and Latvia. We are among the many from countries beyond our shores that we are so privileged to have living here amongst us.

“We are the more than half a million people born in England, Wales and Northern Ireland who have chosen to live here in Scotland. We are the thousands of European students studying at our universities and our colleges. We are the doctors and nurses from all across our continent and beyond who care for us daily in our National Health Service.

“Whether we have lived here for generations or are new Scots, from Europe, India, Pakistan, Africa and countries across the globe we are all of this and more. We are so much stronger for the diversity that shapes us. We are one Scotland and we are simply home to all of those who have chosen to live here. That is who and what we are.”

It’s tempting to resort to blame and anger at this time and I absolutely understand the impulse. But these are emotions that are not only destructive to the individual over time; they are destructive to reflection and learning; they are destructive within communities and they do not move things forward. Indeed the risk is that they leave us compounding the issues.

I have found myself revisiting this quote this last couple of weeks. And I share it with you now. In particular it reminds me that if we want to see a more compassionate world then we need to reach out with compassion and not judgement. The truly disruptive and transformative work we can do just now is to show compassion and consider as we do realign ourselves to transform things for the better; as Lao Tzu also said the best fighter is not angry.