The battles you know nothing about

Yesterday was one of those days that really made me think. I was  hugely moved by an individual seeking me out at a dinner to say thank you to me as Chair of the Health and Social Care Alliance. It was for an award they have received from The Alliance to take forward crucial work that they believe will make a significant difference to some of the most vulnerable in our society. Now there are many to thank before me but as someone who got the charity of the ground and enabled all the work that its now responsible for I was delighted to see her reaction. The great team at the Alliance and the Scottish Government ministers past and present and Health and Social care directorate are those who have made this a reality and as we approach self-management week I would like you all to stand and take a bow.....in full knowledge the work you do changes lives.

And yesterday was a day to make me aware of the need for this for other reasons. I met with someone I hadn't seen for some time who told me of their recent illness, the impact it had made, the life changing decisions that needed to happen. And as we compared notes, the significance of serious illness in our lives was tangible. But we were also out there in the world, working on issues close to our hearts and making our own difference. Probably only ourselves knowing the cost of that….like so many others. With our experience also giving us renewed passion for the work we do.

It was lived experience too that led to Cameron contacting me this week to ask me to help his family raise awareness of mesothelioma. Do read their blog and why its so important to them. The love and passion to make a difference shines though each word. So when I heard this I thought of them. A wee sound cloud clip from Karine Polwart- it will make your day.

Reasons to be grateful. I’m off to Argyll soon, one of my favourite parts of Scotland. It will give me time with friends and exploring new territory too. How fortunate am I? And at last I got my hair cut-nothing dramatic just a much needed post-holiday tidy up. Nothing like a haircut to make you ready to take on life!

An office with a view...

A man's work is nothing but this slow trek to rediscover, through the detours of art, those two or three great and simple images in whose presence his heart first opened. Albert Camus

As I write this I'm returning from a trip to our hill top house in Bulgaria. In recent years we have been less as I dealt with various episodes of surgery and treatment. But this year it felt like the time to finally ( fingers crossed!) heal from all life has thrown at me. I always leave with a heavy heart but once I'm home for a while, I wonder about the madness that made us buy a home there.But as soon as I arrive back again I know why we fell in love with the wee house with the giant view. The mountains seep in to your soul, just inviting you to relax but this year I wanted to see if I could do some work from this inspiring spot. So my office for a few days was under the sun shade, at the table, with the mountains as my backdrop and the shepherds dogs snoring peacefully.

I was doing some reading and writing around working in organisations. This proved a fascinating topic as the rural community around me started its work, it's ancient autumnal rituals. While I sat with a laptop-connected to wifi- even managing a business Skype call, the contrast couldn't have been more stark. Our work environments now often have no boundaries, with 24/7 connection, no day is sacred time off, no seasonal rhythm. Just plugging in and plugging on, often now doing more work with less people; technology both our saviour and slave master.

During this visit  11 horses arrived one day, in the next door small holding. The elderly couple, whose home it was are now both gone, and what we realised was a group of loggers were staying there  to collect the felled logs in the nearby woods. We watched the next day as the beautiful, well cared for horses ( that's not always the situation for the working horses here) were saddled with what seemed like self made saddles and harnesses and ridden out to gather the wood with the men. It felt like something from another time. As I reflected on the demands on our current and future workplaces, we were witnessing an almost ancient ritual, untouched by machinery. Dangerous but quite beautiful in its own way.

Today's  health epidemics in the workplace are stress and depression. And the recession not the only cause I suspect. As we hear daily about the need for more humanity and compassion at work, there's a paradox  when we seek the answers in technology. There is no doubt the lives of the horses and the men would be enhanced by the technology we take for granted in the UK. But what would the impact be? I'm not suggesting we can or should go backwards but perhaps we can learn from what we have lost from our separation from the land, from communities, from the rhythms of the seasons and see how we can reconnect in other ways ?

Reasons to be grateful. We live in a beautiful country too and having the dog is a great excuse to get out in it .As we left we saw the first dusting of snow on the Rila mountains. After a fine summer, winter beckons ..

Tamoxifen tales.....

It was August 1999 when I finished my five year course of tamoxifen. There were a few tablets left in the box so I smashed them up with relish much to my kids alarm. That's me reclaiming my life I thought. So in 2011 when it was offered to me again ,after a diagnosis again of early stage disease, I declined...politely.

It may seem a paradox as perhaps one if the reasons I'm still here so many years later is because of tamoxifen. But also having taken it for 5 years I know the side effects. I gained weight, I felt overwhelming fatigue at times , I burned up when I least expected it, I felt flattened by it. I even had to have an ovary removed because of an ovarian cyst, another increased risk with tamoxifen. But I also knew the benefits of taking it having researched it thoroughly and what mattered to me was to be there to see my children grow up. So I  dutifully took it for five years.

Last year when more research was published saying that there may be benefits in prolonged courses I revisited my recent decision with my surgeon. Perhaps I'm being reckless with my life, I said. I also explained I  had made the decision to work independently, setting up on my own. Could I do this while also taking a drug that I knew would cause such ill effects? We discussed it at length. He told me that there may be more known in time about whether reduced doses could have as beneficial effects, also about regimes that are different for example where you have a month off to kick start the effects of the drug as we know sometimes it stops being effective. He told me I could change my mind at any stage and would still benefit from it. I left reassured that I had made the right decision for me at this time. That what matters to me just now is that I have quality of life.

So it won't surprise you to hear that the recent research published saying that around 400 more lives a year are lost as a result of people not taking the full course of tamoxifen has made me revisit it.

But I haven't changed my mind. You see it's my choice and I have made it from a position of knowledge. My thoughts are with the many women who having heard the news feel guilty or fearful. Perhaps unlike me they haven't made an informed decision, they stopped taking tamoxifen because of side-effects that went unreported. They hadn't fully understood the risk they were taking and no one had asked them how they were getting on. Perhaps they were embarrassed to admit the side effects or had not had them taken seriously. I do know that not once in the five years I took the drug was I ever asked about how I was doing on it at my review.

Was I surprised by the research? No. Was I dismayed by the tone of the statements. Yes. They came from a medical centred perspective, not a person centred one. The implication almost that no one has the right to make a decision to stop a drug for cancer. The dutiful patient adheres to their treatment whatever it's impact.

So here are some thoughts from me  for professionals on how to do this differently:

Discuss the benefits and potential side effects with the women or men before prescribing and ask what matters most to them to enable an informed, person centred decision.

At follow up ask how they are and what would help and enable that to happen.

Be flexible and listen to what they say.

Support people to make the decision that's right for them.

Remember quality of life should not be totally sacrificed for quantity of life and that ultimately it's the individuals decision to make that informed choice. It's the role of the team involved to enable that.

And for the researchers, let's redouble efforts to create therapies that improve both quality and quality of life. We are in uncharted waters where people are surviving cancers for much longer and so future treatments need to enable that survival from a well-being perspective too.

And for the people diagnosed with breast cancer and  on tamoxifen do ask for help if you are struggling and need to control some side effects. Don't be afraid to ask questions and get the information you need to make informed decisions.

Reasons to be grateful.

Believe me when I say I am so grateful to still be here so many years after my first diagnosis and give thanks daily to all those who made that possible. But please don't judge me if I decide to do things a differently now. I may of course need to review that decision and some may have reason to question my decision in the future. But at least you will know it was my choice, made with knowledge and that's a good outcome too.

Just dont call it pink and fluffy!

Maybe its because I have most recently inhabited the breast cancer charity world ,when I hear the phrase pink and fluffy ,I come out in a rash-and not a pink and fluffy one either. Dressing any cancer diagnosis in pink does not mean it’s any less difficult to deal with and can hide the challenging reality. And so it is that when people talk about working with compassion, with integrity, with honesty and with respect as pink and fluffy,they seek to diminish its importance too. Somehow it’s not the real work, whereas spreadsheets, manifestos and business plans are seen as the tougher side of being in the real world of making things happen. But don't we all really know that what makes them stand or fall is based on relationships? It's the people stuff that is the factor that guarantees success or not, in business, in services, in life.

Bring this into the field of health and social care and notice that where there are "failing" organisations, there are people who aren't listening to each other, there are managers who have disconnected from their teams, there are people who have focused on only targets and not on the real outcome ; the experience of those receiving care and support.

And how pink and fluffy is it really to commit to listen to others, to be in respectful relationships, to bring empathy rather than judgement to our dealings with others, to act with integrity in all our work? Who of us can say we have always got it right (not me I admit), who hasn't had to learn the hard way sometimes, who hasn't felt the impact of others not working in this way? I know the lessons that I have been learned from such experiences have been the tough, life changing ones. And definitely not pink and fluffy.

It's hard not to think in terms of war analogies when we are in such a time as now, when parliaments and senates are seeking approval to strike targets in Syria. So is there also a risk that rather than looking for the longer term goals of culture change we deploy some "targeted" cruise missiles ; we bring in some new regulations, we find some individuals to blame and we change little really. I heard the quote in parliament that "appeasement never achieves peace" but does war? What achieves change in the long run is deep listening and honest, respectful, empathic, flexible communications and actions shaped by the very people who matter.

If we want to achieve real change whether that's in health and social care, our wider communities or our nations it's the people stuff that will lead us there ultimately. Let's be man enough to embrace it and stop belittling it as pink and fluffy or I just might have to resort to even more antihistamines......

Reasons to be heartful. I see a real willingness to engage in those discussions about how to change things for the better. Even in the debate on Syria the division is not about whether we all care about the awful reality in that devastated land, it’s about how best to help. I truly hope we find the right answers soon.

The fireworks tonight in Edinburgh herald the end of the festival and in some ways the end of summer. I hope the weather holds out to allow both to go out in style. I leave you with a photo of the war horse in front of Edinburgh castle. Beautiful and strangely moving in the majesty of the creation and the setting.