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.