Saturday, 24 November 2012

Compassion and holding snakes lightly.

"Compassion is a muscle that gets stronger with use." Gandhi

If I say I am currently wrestling with the urge to open a packet of Percy pigs I was foolish enough to buy, my regular readers (ha!) will know all is not on an even keel. It's better than last week though, having survived a full on -and if I'm honest-emotional week.

On one day alone I went from carer of frail member of the family to chairing a key meeting in the afternoon with a considerable drive in between. That morning also included taking her to see the GP who was kind and competent but the star for me was the receptionist. She had gone out of her way to be kind and respectful in the face of frailty, with a strong dash of practical competence. I thank goodness for her...not just for my family but the many families she helps.

I was reminded of that when I attended the conference on person centred care the next day. Some key questions were posed like how do make make compassion reliable? And also important messages that person centred care is not just about choice, it's about control .Its about the how of care, not just the what. Food for thought indeed when you are living through this on so many levels. But as the day reminded me and many others, this isn't just about healthcare. It's about social care of course but more than that it's about the world we inhabit and the milk of human kindness.

In the week when Age UK has encouraged us to look out for our frail and elderly, who are so vulnerable in the winter, I have witnessed huge care and compassion from friends and neighbours. And seen the absolute difference that has made.

In addition an article in the Huffington post described research from the US that showed the difference a close support network made to breast cancer survival.  The take home message was  " if you know someone with breast cancer, show her as much as possible that you're there for her and will put in the time and effort to help. If the Kaiser Permanente study is right, it could make an even bigger difference than you thought possible."

Now I don't imagine this is only true in breast cancer but equally so in many conditions. In Scotland we are rightly focussed on achieving health and social care integration but let's not forget that the glue in that integration will be the third sector in its many hues, it will be communities,  it will friends, neighbours, families. And the smart money is on the communities and organisations that recognise ,empower, trust and value all those dimensions.

As I have mulled over these thoughts this week I came upon the article by Professor Phil Hanlon in the Scotsman called "Change one day at a time". It's challenging and far sighted and resonated with so much of my own thinking just now.

Reading this helped me value again the time spent developing Mindfulness. This weeks story was an allegorical tale which spoke of handling snakes - dealing with the difficult things by- holding them lightly, not denying them or ignoring them or battling with them, just holding them lightly. Like the snake in the story.
So in a week when I have not so much held the snake lightly , but have strangled it (oops!) instead I have been very glad of my own:

 Reasons to cheerful: Christmas is emerging and the lights in Covent Garden this week were so cheering when I visited with a friend. the fire has been on and Cara is loving it as you can see. She is now getting off the lead and seeing her run like the wind ( but still come back to us...phew!) is wonderful and exhilarating. She has to wear a coat in the cold which challenges my husbands sense of manly dog walking at times. But the final straw was when he noticed she was untypically composed walking along recently because she had picked up a babies dummy and was trotting along with it in her mouth...........street cred lost completely! You must admit its a hilarious image....keep smiling and hold those snakes lightly:-)

Wednesday, 14 November 2012

What doesnt kill you makes you stronger?

What doesn't kill you makes you stronger! A Scottish homily that reflects the stoicism in our culture. But is it true? Considering my recent decision to swallow brave pills and take a big step, it is certainly influenced by my recent illness. I know I'm not alone in making a decision following a cancer diagnosis-to make a long held wish a reality. And the knowledge that you have faced the hard stuff and survived is a powerful affirmation of for me at least at one level its true.

But it's also influenced my health and that too affects my opportunities and decisions. Does one cancel out the other? I suppose that can only be weighed up be each of us. But the truth is for many a cancer diagnosis affects their employment, income and housing fundamentally so whilst it may be counter balanced by a bold decision for quality of life for some. For many there will be no choice, no long held ambition to realise, just a tougher reality to adapt to.

And physically there are often consequences of treatment, like radiotherapy and chemotherapy, while on average there will be chronic pain following surgery in over 30% of people. I am not saying this to depress you as I will also hear many say the cancer did them a favour, jolted them out of sleep walking through their lives but the truth is much much more complex for many.

So recently at a conference when we were asked to write some six word stories - to teach us to market our organisations succinctly-this one came to mind.

Breast cancer
Changes everything
For good.

But thats not the end of this weeks story as we had a family illness. And an older family member ended up suddenly in hospital. Now I cant fault their care in hospital, kind, thorough, informed. But the discharge procedure was woeful. Does it matter? Yes yes yes! A frail elderly person is not made stronger by illness, usually the opposite. Their confidence, strength and well-being  fundamentally changed. The person admitted not the same as the one who leaves. The future suddenly has new hue. But support systems have not. It's more than  drugs people need on discharge, its careful planning. And if you want to guarantee a readmission then don't plan a discharge. I guess leaving in the IV cannula wasn't planned either ( sorry I am angry!). So the six word story I thought that the hospital ward would write would be :

Discharged home
What next?
Don't care

Reasons to be cheerful. The care and compassion a family demonstrate in hard times is our greatest gift, no doubt.As you will see above, Cara the lurcher is settling really well now. Her ears are a different shape each day and the cat has almost forgiven us.......well I needed to end on a positive!

And look at these November skies we have had in Edinburgh of late! Wonderful:-)

Monday, 5 November 2012

A week for a big decision.....

" Dont ask yourself what the world needs, ask yourself what makes you come alive and then go and do that. Because what the world needs is people who have come alive"

This has been a week for a huge decision. Not one that snuck up on me of course. It's been building for some time. As you know I have had the reminder , for the second time in my life, that life and health is our greatest treasure. And now I am mostly recovered from my recent illness it's made me think...what next? 

Now, not in a," what if I am going to die sort of way". More of a ,"how do I want to live?"And the answer is there are some things I still really want to do in my career and there is some balance I would like to achieve in my life. In order to do that, I need to make changes.

 I came to my role in Breakthrough to set up the charity in Scotland. I was fortunate to recruit a great team who shared my desire to be the best we could to represent the people affected by breast cancer in Scotland. And if I can be permitted a little immodesty...that we have done with style. I am immensely proud of all that we have achieved and I now feel its the right time to move on. 

Just writing that of course gives me a huge lump in my throat, I will be sad when that time comes at the end of January. But I know it's right nonetheless. I will of course continue my blog as its my story and what is clear is this next chapter is a important part of that journey too. And I also will stay engaged with social media around breast cancer, with some exciting plans afoot even. So i will remain involved with the breast cancer community...its part of who i am after all. Breakthrough will always be special to me and I will remain involved where I can help...I even plan to become one of the Breakthrough 100!

So whats next for me? I am keen to play to my strengths and experience and develop a portfolio style career.  I have long held a desire to do leadership coaching and development work with individuals and organisations to use my experience to support them to grow and develop for those they serve.  Also throughout my career my passion has been improving health and social care and of course I will seek opportunities to continue that , not least through my work with the Alliance. And who knows what else ? But I would really love to do a bit more writing too.......

So you'll have gathered its not to go and potter in the garden! But I do hope that I can ,within in those plans,  find a bit more time than my current role allows , to smell the roses.....or even the puppy:-) This feels like a big step I'm sure you will understand. A step into the financial unknown in the world of the self employed. So I need cheerleaders and friends to support me through this....I hope you will travel alongside me and cheer me on! My blog will plot my course, reflect on these big decsions and as ever do my best to make a difference.

Reasons to be cheerful. I have the support of the great people  in my life to encourage me to create a future that offers further career challenge and satisfaction doing the things I am best at....and gives me ,I hope , a better balance to protect my longer term health. 

 And my son has returned safely from an aborted trip to New York. He was in Pittsburgh with his girlfriend, seeing his favourite American football team for the first time when Hurricane Sandy struck New York, their planned next stop. But they had a great time with the good folk of Pittsburgh  instead and watched the terrible impact not only on the fine city of New York but other states  in the US and of course the Caribbean too. Changing holiday plans are a small thing by comparison. I hope the people whose lives were shattered by these events get the support they need.

Thursday, 1 November 2012

Settling arguments of breast cancer screening?

So at last we have it the results of the much heralded (in my world at least!) breast screening evidence review. It has been anticipated by the breast cancer community, in the hope that finally this is the one that settles the arguments. So does it? The UK breast cancer charities have looked at the outcome and feel ,yes, this is good news for women. The review has shown that breast screening can save lives-around 1300 a year in the UK, that’s around 130 here in Scotland.
But there are some downsides to screening reported in the review. The data suggests that 1 in 5 of those diagnosed through screening is over diagnosed. So some women are diagnosed and treated for a cancer that is at such an early stage it may not have caused them harm in their lifetimes. The problem is we don’t know at the moment which cancers will grow and become harmful so all women in this situation will be offered treatment.

But let’s not forget that also means 4 in 5 women who have a cancer diagnosed through screening are having treatment for a cancer that will cause them harm if left untreated, and may not have been found without screening.
But I guess a big question is how do women make sense of this report? What do you do if your screening appointment drops through the door this week? It’s vital to read the information to enable you to decide to attend screening –or not-armed with the facts and confident in your decision. In Breakthrough Breast Cancer we will continue to work with governments to get the leaflet as clear as possible and also provide and update the information ourselves to enable  informed choice at all times. And in the future work to ensure research offers us the ability to know which cancers will spread and which won’t ,therefore reducing the risk of over diagnosis. Does it settle the argument? Probably not, but it does move on the debate and offers access to updated information and that has to be a good thing.
At the heart of this debate is what’s at the heart of person centred care. It’s about giving people the right information, asking them the questions that help to explore what is a good outcome for them personally and then supporting them with that decision. Traditional approaches of - doctor knows best -has no place in modern health care.
As medicine becomes even more complex, with an increasing ability to look at individual’s risks, the skills of the healthcare professional need to evolve too. From my personal experience as someone who found making a decision on treatment this time around ,very complex and stressful, I know the value of a team who gave me the information,  tried as far as they could to explain my risk and supported me absolutely to make my own decision.

They also gave me time to make that decision. Often with a cancer diagnosis we panic and think there is no time..that’s not always the case so people should be given the time they need. To be honest sometimes I revisit that decision and think “did I get it right?” But I know it was right at the time and that’s ok. This blog apppears in the Holyrood Journal and the column is called Living with the C Word and the short answer is it is hard to do that at times and the recent controversy can make it harder.

 Some people may well now will feel stressed ,doubting their decisions or having difficulty making a decision that holds their life in the balance. Newspapers should remember that when they chose their headlines….
Reasons to be cheerful! The pup is getting out for walks. So trips to Cramond beach and Inverleith Park are making the transition to winter so much easier. But hello? What has happened to those ears!