To see oursels as others see us?

This strangely mild January in Edinburgh I have been reflecting on when I worked in a medical practice as a nurse leader, every conference I attended had something on medico legal issues. It was guaranteed to give me at least one sleepless night that week. Here we were in many ways at the leading edge of new practice and any innovation put us at risk according to the advice. I'm surprised we achieved anything new given that- but we did. We worked hard, we looked at the evidence, we consulted with those receiving the service, we planned, we did our best. Any grumbles we learned from and genuinely tried to do better. I was proud of our work, it wasn't perfect but we cared about people and improving the service and it showed. 

So when my own father experienced a poor standard of care it absolutely distressed me. I complained because I knew it could be different and wanted it to be better for others. An unplanned discharge caused him extreme pain ( not least when he fell trying to get to the toilet with metastatic bone cancer-a hasty , uninformed discharge meaning nothing had been put in place to support him even though his mobility was by then very poor) and all the family huge distress and concern. As a family we were well placed to be able to quickly turn it around but what about those who can't? Less than two weeks later he was admitted to the hospice ward which was through double doors from his original ward and culturally was a whole world apart. We were all supported and cared for and my father died peacefully without pain. It's twenty years ago and I remember every detail. That's the impact of poor care and indeed good care. After he died I wrote not only to complain but also to praise the hospice care, employees of the same hospital after all. I never had a response to the praise and my complaint was initially met with defense so I didn't let go-we finally got an apology. At that stage I had recently finished treatment for breast cancer and was at my lowest ebb but it was the final thing I could do for my Dad and I needed to complete it.

Why is this in my mind now? Because there has been much written on the power of complaints recently, the importance of apology, the value of feedback and I found myself back there again. The experience of taking  the time to write a complaint and then having it met with defense was awful. And also my mother had to cope with the aftermath, her distress about my fathers last few weeks lived on, an apology helped her to let go. It's all we wanted, a simple we are sorry ,we should have done better. We will learn from this. The reluctance to do that reduced the power of the apology when it finally came.

I know in many organisations feedback can one of the hardest things to receive as an employee, the NHS is no different. Is it a British thing? Do we squirm in our seats before we give feedback, even if its good job? How hard it must be when the only feedback you get are complaints. Yes a box of chocolates from grateful people is nice but its not feedback. You don't know what you did right, never mind what you did wrong. And how many people like me have been trained in giving feedback as the aptly termed "shit sandwich". Yes really! When all we do then is wait for the shit, the bread long forgotten as the shit lands. How genuine and person centred is that and what is the result?

If we want to get complaints and feedback right, to learn from it, to grow personally and organisationally then it has to permeate the whole culture. No blame culture will result in mature responses to feedback. 

We do have existing mechanisms to help with this; we have the patient opinion website to feedback into the system ( remember the majority of the feedback is positive through patient opinion), we have the opportunity for people powered  healthcare to help improve and  co-produce services, we have volunteers and so called patient leaders in places,  we have complaints procedures-complex as they are. But are they enough in themselves? Only if they are embraced by the whole service in my experience. We need mature systems and leaders who are self aware and responsive, who are willing to learn, to change, to be flexible, to listen. We need a system born of compassion and collaboration , not competition and judgement-responsive to people not only focused on targets.

We aren't there yet everywhere, but I see in my work people who are truly open for this, who recognise the need for change and are actively pursuing it. That gives me real hope...the next stage is to make that the norm, working with the culture rather than in spite of it. I know it's possible and the time is right...

Reasons to be heartful

My work and life gives me the opportunity to work with really inspiring people. To see their efforts despite a grinding schedule and an ever growing need to make a difference in their world. Perhaps sorry still seems to be the hardest word but maybe we can practice getting better at it together as well as celebrating the great care delivered each and every day by carers formal and informal, paid and unpaid. Next week I'm looking forward to a celebration of carers for people with dementia, hosted by Tommy Whitelaw and colleagues from the Health and Social Care Alliance Scotland. Eddie Reader is headlining and I'm hoping as Burns night approaches she might do my favourite Burns song, her beautiful version of Ae fond kiss. It's  going to be a fabulous evening I know and I suspect as a daughter of a mother with dementia, not a little emotional. But with dementia being such a prevalent and growing condition as we age as a society, I won't be alone.

 And that is important not being alone as we all tackle the health and social care needs moving forward , support will be the key to resilience for us all.

Tower of song

My Mum is staying with us just now and we have noticed her increasing frailty during this stay and that's so hard to witness. But it was seeing her reaction to The Sound of Music that reduced me to tears. Her enjoyment was evident and seeing her sing along quietly to the line "my heart will be blessed with the sound of music" was my undoing. 

The film of course reaches down through my childhood. My first trip across the Forth Road Bridge was to see the film in Edinburgh....a big trip, planned in detail by the community I grew up in. As a child too my grandmother had the LP and I listened to it every Sunday we visited, absolutely word perfect as a result. Even as an adult a trip to the singalong Sound of Music was a wonderful cathartic combination of laughter and singing-with a Glasgow heckle to Maria of "Gaun yersel hen" a hysterical high point! So it was both old memories and fear of the future that brought my grief to the fore. The positive role of music in people with dementia is now well recognised of course and alongside my tears I was thankful for her pleasure too.

 I got a new iPod for Christmas so as i fill it I will  create my own favourite theme tunes that will enhance my life right now...but who knows maybe at some stage in the future they will help me raise my head and make me sing too. My taste in music leans to reflective singer song writers. From my youth (after my Sound of Music days that is!) it would be James Taylor, Joni Mitchellhttp://www.youtube.com/watch?v=oiAuXRK3Ogk, Leonard Cohen and Carol King  who adorned my music collection. I never owned an Abba record in the 80s but recently downloaded Abba Gold and love it. Its easier to singalong to than Leonard Cohen, lets be honest!Perhaps our sound tracks need to be that eclectic mix of all of the music we have sung to over all the years. My Dads favourite songs to sing would need to be on it ( "You must have been a beautiful Baby", "For Me and my Gal" ) and I'm now realising The Sound of Music should be there too.

In many ways its been a very moving start to the year. Mine is the sandwich generation and on one day this week a good friend called me to let me know her father had died after a long illness. Just a few hours later another friend was in contact to announce the birth of her first grandchild. How poignant  it was to experience the juxtaposition of their news.

Reasons to be cheerful. We had a lovely family time over Christmas and New Year and also welcomed with joy the news of a family engagement. Im so delighted! How fortunate we are. I hope you too find joy and connection this new year. And maybe you could join me in collecting some of your songs that connect you to the past and to what gives you joy....our collective thank you for the music.

This one is for the men who are affected by their partners breast cancer.

This is a different kind of post for me as its a guest one. I don't normally do this but when i was approached I was keen to pursue it as its some tips for men whose wives have been affected by breast cancer. A much needed source of advice from someone who has been through it.

His name is Todd and here are his tips. Do pass them on.The men involved need support too and often are much neglected. Thanks to Todd for his honesty and willingness to share.

Audrey

 

Three Goals for Guys

 

                Soon after my wife was diagnosed with breast cancer I went in search of helpful information and tips that would prepare me for my role as a support partner. This information wasn’t readily available.  There were plenty of books, magazines and web sites devoted to a woman’s needs (and rightly so), but guides designed to help men were fewer and farther between.

                In short order, however, I began receiving helpful counsel from friends and family members who had walked this path with their wives.  There were more breast cancer survivor husbands than I realized.

                Taking away the best of the best, I eventually settled upon three goals that I wanted to achieve as a support partner and husband through my wife’s breast cancer journey.  I pass them along here as key ingredients to your support, and hope you will find them helpful.

                Goal #1:  Be the support—don’t just talk about it.

                This was important on many fronts.  There were many aspects of my wife’s journey that were not conducive to my presence.  I would have rather talked about these, or assigned someone else to “be there.”  For example, spending the night with my wife post-surgery was a draining experience (the cot, the sleeplessness, the discussion with nurses).  But I couldn’t just say I was supportive, I had be there with my wife, by her side, and with every one of the subsequent steps in her healing it became easier to accomplish.  Our love deepened through these fearful and uncomfortable points, and I was glad that I made every effort, cleared my calendar, and took the journey with her.

                Goal #2:  Wear different hats.

                The breast cancer journey will press men to be and do what they didn’t think was possible.  During my wife’s surgery and recovery period I learned how to cook from her recipes, completed my first loads of laundry, changed bed linens, fluffed pillows, made runs to the grocery store, accompanied my children to school activities, and generally ran the household by myself for a short period.  I wouldn’t say I was a single-parent, but close.  All of these varied endeavors taught me much, however.  And I essentially learned that I had a greater capacity for multi-tasking than I realized.  Even work was easier once I returned to the desk.  After breast cancer, the rest of life is gravy and the days seem simpler and less complicated.  Wearing all of those hats increased my life skills and my talents.

                Goal # 3:  Bring our lives back to “normal”.

                Well, what’s normal?  In truth, life never completely returns to the same place after a breast cancer experience.  She is changed.  And he usually is, too.  But this isn’t a bad thing . . . in fact, it can be quite positive.  What I discovered is that we were creating a new “normal” post-recovery.  My wife changed careers (this is more common than you think!) and I was soon talking about these experiences and seeing the carry over to other aspects of our lives (marriage, parenting, careers).  All in all, getting back to normal is simply learning how to help your wife live as a breast cancer survivor.  Time changes things—and most couples discover that the new normal is better than the old.  It’s all in how you look at it.

~Todd Outcalt, author of Husband’s Guide to Breast Cancer (Blue River Books)  

 

Only once imagined....in pursuit of well-being.

"What is now proven was only once imagined" William Blake

Recently I have been blogging about my experience of the WEL course and having now completed it I  feel strangely bereft it’s over, in some ways it's a lifelong course I know, but that time regularly to tune into ourselves, be challenged in our thinking and to learn new information and skills felt very precious. Inevitably some parts stand out for us all differently. I have already blogged about food ( my most read blog to date!).The statement you are not your thoughts and the focus on mindfulness has also resonated for me.

Perhaps most importantly as we travelled through the course my belief that the "fix it" model of health we currently embrace cannot survive has strengthened. We filled in a questionnaire at the beginning of the course and repeated in at the end. I realised I had moved from stated aims like I want to reduce my allergies and asthma, I want to get fitter to now saying I want to be at peace with myself and my wellbeing. Laying down a sense of guilt around having been ill, letting go of fighting ( how often we use war analogies with cancer) and instead accepting that we all get ill, we deal with difficulties in our lives and we need to focus on healing, recovery, repair -salutogenesis-not just fighting it with chemicals.

This has been reinforced when recently reading recent calls to find the cure for the war on dementia, hailing the prevention of breast cancer through drug treatment and an article from the BMJ around the issues with regard to big pharmaceutical companies and their impact on the treatment of diabetes. Our fix it model of health leads us to see the solutions in drugs often, evidence based research reinforces this whereas experience has taught me that usually  what people want is more information, support and empowerment to regain their health and reduce their risk of disease. My work in healthcare and third sector in diabetes taught me that people never ask for help to reduce their blood sugar, they ask for support to manage work, relationships, holidays, school.

But it's so much harder to get funding for self-management programmes to support this than it  is to get prescribed drugs even when other research tells us they are often not taken. The more drugs we prescribe, the less people take. Perhaps because at heart they too know they are not the whole answer and that they don't understand how they work and why they are important.

But let's not blame the pharmaceutical industry, tempting though that may be, they are only responding to the current market driven culture that acts as if profit and growth are the ideals to pursue beyond everything else, even when common sense tells us the ultimate impact of this makes no sense.

There will be no magic bullet cure for dementia nor for breast cancer, both are a complex system of diseases. And while we need to continue funding crucial research into the treatment, prevention or reduction in risk of these diseases 

(much of this funded by vital charities) , we also as a society need to wake up to the many real issues for the people living with them. Those caring for loved ones with dementia are not usually lying awake at night calling out for a cure, they want the right support for all concerned that allows them all to live with dignity whilst protecting everyone's well-being.

These are the here and now challenges of living with long term conditions in all respects.

Developments in medicine have been amazing even within my lifetime and I admire and thank those pioneers of healthcare who have made this happen but it mustn't be the focus of all we do or invest in. The work we have campaigned for through the Alliance for many years now has highlighted this, the work on the WEL course illustrates the importance of this too, the development of mindfulness in our communities and many many other areas of peer based and community led work show the importance of salutogenesis not just at an individual or group level but really at a community and societal level. Practice based evidence needs to be valued alongside evidenced based practice too. I was delighted to see Don Berwick talk about his own journey to pursue this deeper understanding of the purpose of healthcare. 

"I have two grandchildren. I want to hand them a planet that is really thriving" 

Don Berwick

The tide is turning..... because it has to.  And that tide has to have kindness and connection in its essence, these are at the core of well-being.

I'm often described as a patient advocate and I always react to that description. I'm not a patient, I'm a person who advocates for others to be seen as that first, not merely a collection of symptoms. But that's not only what my reaction is about I know, it's because my interest goes well beyond the need to improve health and social care to looking at how we can promote and enable salutogenesis in our services and communities. No small challenge but if we don't collectively see the need for that we will not tackle the huge issues we face in our societies.

Reasons to be hopeful?

I was inspired to read this quote from Pope Francis on the need to tackle inequlaities. It's good to see so many with influence saying similar things, my plea as this year closes is please, please let's make sure we listen and play our own, however small part in being part of a healthier, kinder, more equal and compassionate society.  Thanks for following my blog and I look forward to journeying with you again I hope in 2014.

Enjoying the little things?

A short Friday inspiration today. I have had a family week with Christmas visits to the fore. I have loved every minute. From time family around their tree and watching the new Hunger Games film which I loved- to long a planned visit to Krakow. What a wonderful city it is, beauty, thought provoking history, warm, welcoming people and classical concerts in tiny churches to lift the soul. (...and warm wine to restore feeling to the feet afterwards I wont lie!)
But whats been best of all is special time with people I love so I'm sharing too this image from the film UP. Its a wonderful film,if you get the chance to see it, you may need a hanky but it will also steal your heart. Enjoy your own big and little times.

Borgen blues......

Borgen, Birgitte and......

One of the inventions I enjoy is the ability to record your favourite TV or films to watch when you want to. That ability to kick off the birkies , put up your feet and savour the delayed gratification that comes from saving the treat till the work is done cannot be overestimated. Of course if you are like me and also engage with twitter it's essential to avoid the live twitter feed if you have it on record. Spoilers abound but it's not that reason that the recent episodes of my biggest obsession- which of course is Borgen- have caused me distress. Oh no, it's the storyline of late.

As a political anorak of sorts, I admit my idea of a good night is watching Danish political drama with subtitles requiring my full attention. In fact one of the highlights of this year for me was watching the last two episodes of the of the last series at the Filmhouse in Edinburgh, followed by an interview with the actress , playing the states minister, herself. Believe me I wasn't the only person there with a bit of a girl crush on her.

Over the earlier series I have also ( like many women I guess) seen a little of myself in her dilemmas between family and a demanding career, the value bases challenged in a masculine culture, the inner idealist struggling with the paradox of power and powerlessness. But let’s be honest the similarities have been tenuous, she is younger, more glamorous, very eloquent and successful and she can wear high heels and power macs with more style than I have ever managed.

SPOILERS ALERT!!!

Of course this series has given us more in common. Her diagnosis of early breast cancer seemed to come out of the blue, not a classic lead up at all. ( How like life too...) So much so that the end of the episode she was diagnosed- left me unusually quiet. I then dreamed all night about her. Concerned that she got the support she needed, scared she made the same mistakes as me, if truthful. NO I wanted to shout, don't try to carry on, get support, allow yourself to be loved and held by those who care about you. It's hard enough, don't make it harder.   Of course I know she isn't real but I wanted to save her from herself. I wanted her to be wiser than me. I didn't want her to suffer more than she needed to.

But maybe for people like her and indeed for me the habit of pushing yourself to survive in a challenging world will also be something that kicks into play even when we know in our hearts it's not the solution; whatever the reason-but perhaps especially with illness. You know that to succeed as a woman  you usually have to do it all- but backwards in high heels as the Fred and Ginger analogy would have it. So if you add anything into the mix that smacks of weakness then in many parts of the working world the wolves circle, licking their lips. Of course it's not just that, we are also used to thinking first of our children or other family members , soldiering on whatever, wishing to protect them from pain and worry.

I confess my undoing was watching her children's reactions during last weeks episode.The hardest lesson I learned but still find hard to accept is that we just can't do that ;we can't protect those we love from things not under our control. But we can teach them how to look after themselves by trying to role model that ourselves. OK no prizes for that for me but it seems that like Birgitte I'm human too!

And so as she accepted the help, recognised her vulnerability, got cared for, her power returned, her roundness as a human being only enhancing her appeal. Let's  hope that continues. But there is still a plea from me. Lets not treat this health blip like she is just recovering from a cold. A cancer diagnosis, no matter how early, has an impact. In my role in Breakthrough, throughout my time as a nurse and now as a blogger and health advocate,I have heard the recurrent stories of those who wish people really understood the impact of cancer and that it doesn't end with treatment. In many ways that journey both psychological and physical is just starting. So I know Birgitte is a fictional character ( I do honestly!) and that the story is of people and politics, but if she shrugs off the cancer like a winter coat at the start of summer I will be pleased for her but then I really will know she isn't real.

Reasons to grateful.

After a busy but hugely enjoyable spell I am now on wind down toward Christmas and most especially time with the family over the festive period. How enormously grateful I am for that.

It seems impossible, till its done. Friday inspiration

Friday inspiration 
 Change is not based on effort, change is a creative process best not conducted as a war. 

I read this quote this week as part of the WEL programme and it has echoed over the week, not just in a personal sense but in how organisations can approach change too.
How many of us would recognise our own approach to change in ourselves and within our organisations past or present in the words "conducted as a war". How many gym memberships start that way, fitness classes, boot camps even! And how often do we catastrophise when we lose a battle that we have lost the whole war and so give up, eat or drink more, embrace the sofa and so much more. Wars are won or lost in traditional senses so even if you win temporarily , whats next? What damage needs repaired? What casualties have their been?

Instead a creative process feels so much more appealing. It's inspiring, it's stimulating, it's emergent, it has an energy and a flow. The energies therefore go into creating a future not so much on destroying a past. Suddenly it can feel such a different proposition. 

How would our organisations benefit from seeing a change process as a creative one, honouring the present and focussing on co creating a future with all,involved. How more engaged and excited do we become?

On a day where it feels a wonderful warm and inspiring light was extinguished, Madiba, let's  remember how he changed a very very troubled part of our world. He did it with warmth, with belief in our better selves, he listened , he loved unconditionally, he had a vision and convinced people they wanted it too-his humanity was his greatest gift to the work. What better legacy could their be for all of us to learn from that in all we do too. How his and others creativity was rewarded as their new nation emerged and turned away from war.

It always seems impossible until its done. Nelson Mandela. RIP