The music behind the words

It's been about seven years we have been coming to Bulgaria. And to my eternal shame I still can't speak much Bulgarian. We speak some french and german so western Europe was much easier for us but here it's a different story.  Some key words get us through but mostly it's the language of the shrug, a gesture , a smile, a hand grasp, a kiss on both cheeks, a wave. Their eyes tell of their warmth  and welcome. But there is a catch. With one important gesture we understand the opposite, because here in Bulgaria a nod means no and a shake of the head means yes. Now I have always known that "da" means yes but every time it's accompanied by a head shake I'm thrown. I receive the answer as "no" until I have to adjust my thinking to the accompanying verbal answer of yes.

Seven years on that's still true. The power of body language and the reminder that what we communicate is much more than what we say. When I facilitated counselling training we would describe the need to listen for the unsaid, for the music behind the words to truly understand how to enable wellbeing. To really understand people we need to explore whats the music behind their words. A beautiful illustration of this for me recently was hearing of the woman who became distressed going to theatre for surgery for breast cancer and when this was explored further she explained that her husband had recently died and she was facing this all alone. The nurse returned to the ward and got his photograph from her bedside. The comfort of his photo and the act of caring calmed and restored her throughout her treatment there. Actions, not just words you see.

And the Bulgarians we meet show their nations culture through their actions. Their generosity in helping out others, their frequent refusal of tips-"that's not needed", their family centredness so much part of what makes our visits here so special. Yes we know there are problems of corruption in this fine and beautiful land but thats not the dominant culture from our experience. So when I hear doubts expressed in the UK about Bulgarians being free to come over I feel aggrieved. Perhaps our own culture in the UK could benefit from some more of the qualities we have seen and experienced here. Their young people especially ,are beautiful and carry themselves with a grace I envy and admire. We can only be enhanced by their presence I suspect.

Reasons  to be cheerful
It's been very hot but last night a storm has freshened the air. Jacko the shepherds dog has returned with his grin welcoming us back.  I have as usual taken lots of photographs of the Rila mountains. The house has an undisturbed view to them and with each shift of the weather they change. The photos never do them justice but I keep trying!  And mostly it's wonderful to have the chance to restore the soul with the beauty of the place.

On empathy and the search for meaning

 But there was no need to be ashamed of tears, for tears bore witness that man had the greatest of courage, the courage to suffer.

Viktor Frankl "Mans search for meaning".

I met some great people this week. People who made an impact -and not just on me. People who have been brave enough to tell their stories to help others understand more from their perspective, to challenge current practice, to enable change to happen. I know that's not easy and not without a cost but it does make a difference.  Tommy Whitelaw is one of them: an eloquent and passionate story teller.

 His campaign to raise awareness of dementia touches the deeper places of our awareness, leaves people unable to look away. Hearing his and his Mum's story holds up the mirror on our care systems. Tommy respectfully but powerfully articulates this, helping us see it through his eyes: yes as a carer, but also as a loving son. A system that sadly allowed him to find out what might have helped him and his Mum only when it was too late to make a difference. A system that allowed people to care for her for years without knowing who she was or what and who mattered to her. Our collective challenge is to listen to Tommy and Joan's story and make sure it's not repeated.

And others I met told their story of how a disability can, without the right support , lead to imprisonment in your own home. One amazing man imprisoned  in one room for more than a decade saw his life transformed by the good work of a charity, Housing Options Scotland. This has led to him now able to get out, his world enhanced beyond measure.

Such powerful stories build our empathy for their situations, understand better how to meet needs in the future. For that time we walk a little way in their shoes, see the world through their eyes. And eventually we know what to do to change things. I have seen this DVD from the Cleveland clinic a couple of times now, each time it moves me. Do watch it. Its not just being touched by my shared experience  but the small discoveries below the surface that make a scene all the more powerful. Thanks to all of those who share their worlds below the surface, it's not easy and takes great courage and strength to show your vulnerabilities.

It also led me to think about resilience in the face of crisis, change and trauma. It's an oft used term in our currently challenging world. How do we help people build resilience, what helps them survive? Victor Frankl in his book  "Mans search for Meaning" describes that from his experience of surviving in a concentration camp, it is about finding meaning and  purpose.

“Life is never made unbearable by circumstances, but only by lack of meaning and purpose.”

― Viktor E. Frankl

Having the right environment to live and the right network of support can change meaning and purpose so much. And what could that mean for those working in health and social care? What better purpose can we have than enabling another's wellbeing? And yet we learn that resilience is tested with current working practice and cultures. What in the system stops people having a sense of meaning from their work as care givers? What is lost that we need to recover? Unlocking that is I’m sure how to secure the best experience for all in those precious relationships.

I have spoken often of the great care I have received throughout my recent treatment for breast cancer. And this week Professor Mike Dixon, my surgeon, has been awarded an OBE. He has worked relentlessly for others and its so clear that what makes him resilient is the meaningful (if often heart rending and exhausting too )work he does and the purpose which he has never lost sight of. Truly inspiring. It's an award for services to breast cancer and charity. It could not be more deserved.

Reasons to be cheerful.

One of the great joys this week was a reception hosted by HRH Prince Charles for Breakthrough Breast Cancer  supporters in Scotland in Holyrood Palace . The pleasure for many in meeting the Prince was matched by meeting Professor Mike Dixon too, lets be honest! For many of us there, he has seen us in less elegant attire perhaps but he never forgets a face ( at least I think it's the faces he recognises!).It’s so fortunate to have such times to celebrate when the backstory is so challenging. And for me it was so good to see old colleagues rising to the occasion and many old friends in their finery, celebrating such a special occasion for all involved. My only sadness is that it was over too quickly to have all the conversations I wanted to. The reception came at the end of the excellent  two day NHS Scotland event …..the change of shoes wasn’t quite enough save my feet but I’m sure they will recover in time?!

Audrey goes to Holyrood

What Matters to you?

 

Kissing Cara!

It's been a fascinating few weeks, steeped in developing principles for person centred care. The process brought together people working in health and social care in all sectors and those with lived experience of services too.  I found myself wondering which I was....what side of the fence? The healthcare professionals were familiar; a warm and a  recognisable part of my past. The third sector is definitely part of my tribe now:I'm proud of the  innovation, the flexibility, the person centredness at its heart.   But I recognised where I felt I really belonged was with those with the lived experience for this work. The words expressed went to my heart and its absolutely that, that fuels my passion for the work.

My name badge just had my name on it. Just me. Part of every tribe and none. I admit there is liberation in that. Feeling able to see all parts and advocate for all in the system is part of what I can offer. The symbol we developed for person centredness does not have a unique collection of words, they have all been expressed before but they are the ones we connected with. They are all of our words and they tell the story for all, not just those with lived experience of care but all of those in the unique relationship of enabling wellbeing, for themselves, with others. And there is a sacredness in that relationship. From the trust between the surgeon and patient to the carer of the person with dementia who together find how to reach out and connect through the dense fog of the condition.

The strongest message that has gone to my heart is that for this to thrive we need compassion, trust and respect for all in the system. And that's not what I hear about in so many places. A system perfectly designed to not enable person centredness is the risk. My fear is that this won’t change if it looks like the only thing we care about in health care is waiting times.  Hardly a day passes when our news channels don't resonate with talk about waiting times, leaving a system at risk of distortion. Yes if I need a simple orthopaedic procedure I'm happy to go where necessary to have it done. But if it’s about a longer term relationship, frankly I would rather wait for the person I know, the person I trust. Yes , even if it’s for cancer treatment. Let's not pretend all waiting is equal, let's allow a flexibility that instead offers safe and relationship based care. Make the headlines about the real concerns for health and social care in the future. All of us need compassion, trust and empathy an everyday reality in health and social care. Let's campaign for that-for all in that sacred relationship. They all deserve better and we all have a part to play in that.

Reasons to be heartful.

The commitment that I have seen in the last few weeks to make person centred health and care a reality has been inspiring. Let's keep the inspiration flowing. And there is a burgeoning romance in this household. Cara is smitten by Buster the chocolate lab who lives around the corner. It seems mutual (if not exactly exclusive- but hey!) so happy days all round. Kissing Cara is her new name and their antics guarantee a smile!

An opportunity to think differently?

                      "In the middle of difficulty lies opportunity" Albert Einstein

If I'm honest I have hesitated before writing this blog. Talking about access to medicines is politically something of a hot potato. And if there is a ,on the face of it ,a difference between England and Scotland its a case of light the blue touch paper and stand well clear. But it's important we explore the issues away from party politics but as a necessary question for contemporary health and social care. And this blog is my personal attempt to widen the discussion.

When we set up the Long Term Conditions Alliance in Scotland one of the first things we looked at was access to medicines and in particular prescription charges for those with long term conditions. There were huge anomalies with people with conditions like diabetes being eligible for free prescriptions ( although not if treated with diet alone) whereas those with asthma or arthritis for example had to pay. I worked with Diabetes UK then but felt it was important to argue for a principle of equity. And when I then moved into the cancer field it similarly felt too simplistic and self serving to only argue for better access to cancer medicines; having no appetite for a "my illness is worse than your illness" argument.

 The return to free prescriptions in Scotland has created the opportunity for people to have  better control of their long term conditions, with less angst ridden conversations at pharmacies, people no longer having to ask "which one is really necessary" when presented with the bill. Of course it's controversial like any universal benefit. But ultimately if it has enabled people to self manage their condition better and that's good news all round at both a personal and economic level.

So it is right that it shouldn’t be the individual who is concerned as to the cost of their prescription but while the prescriptions may be free, the treatments are not.  We still hear tales that some people aren't getting access to the treatments they need in an equitable way.  How widespread this is, is very hard to know. I welcome that systems are being redesigned, especially being   made more open and accountable. I welcome that debate is happening. But I wonder, are we having the right debate yet? Whatever the process is, one of the questions needs to be how much money is in the system to meet the need now and  even more in the future?

Person centred healthcare means not only designing services around the person but also increasingly it's about more and more personalised medicine too. The recent discussion about genetics and breast cancer is the tip of the iceberg of the discussion we need to have to understand the implications of personalised medicine. Targeted therapies mean they can be tailored to need but profits from the drug that benefits all are different from the one that benefits a niche group only. Is the impact on price therefore inevitable perhaps?

What does that mean for cash squeezed healthcare systems? Rather than solutions that rob Peter to pay Paul do we need to have the debate about how much we each are willing to invest in our health system? Person centred approaches mean that when people are fully informed about their options when the chips are down, they make different and individual decisions. One cancer patient declining treatment, prioritising their quality of life  while another's goal is to prolong life at any cost, giving them precious time. But we have new drugs in the wings for many people offering potentially fresh choices. And who of us will want to risk being denied the choice of treatment should the time of need come for ourselves- or those we love?

So are we willing to tackle this challenge in fresh ways?  Are we willing to pose the difficult questions? Like exploring if we are willing collectively to pay more for our healthcare (and not in a way, like prescription charges, which simply charges for illness)? And are we willing to discuss an open approach to rationing as costs rise and whats available to invest doesn't? Would increased taxes for example be part of the answer to ensuring that the best care and treatment is available to all equitably?  My prescription is : let's have the real discussion we need to have, about how much as a society we are willing to invest, to change, to do differently in order to have world leading quality health and social care for all?

Reasons to be heartful.

These wild flowers were plentiful on a walk I did recently with a  really special woman who has been walking around Scotland to raise funds for Breakthrough Breast Cancer. I loved joining her for a short time, walking is such a symbolic transition and this recent time has been about transitions for me in lots of ways. Like the weather I feel I have come around a corner to see the sun shining. Hope it has for you too.

Not just Angelina

As someone who never does well in the celebrity section in a quiz and who declines the celeb mags at the hairdresser in favour of the newspaper I have found myself, perhaps surprisingly, very moved by the Angelina Jolie story this week. I can't recall ever seeing one of her films but such is her celebrity my daughters first two goldfish were named after her and Brad! As a wee freckled Celt her olive skinned statuesque beauty is something I can only look on with awe.

Working in an industry which as we know places beauty and youth above so much , especially for women, is not easy in the best of times. And learning you have a faulty gene that puts you at very high risk of breast cancer and ovarian is certainly not the best of times. Living with the knowledge of that risk has a massive impact on those affected. The fear is omnipresent. And so she made a choice to reduce her risk that resulted in a mastectomy of both breasts and reconstruction surgery. Psychologically that's a huge decision and physically it's impact should not be forgotten. This  is massive surgery and will have taken its toll. She has shown us she is so much more than her beauty, her body, her breasts....she is an empowered, informed, woman and perhaps very importantly to her, a mother. She knows how it is to lose a mother long before her time. And she has dared an industry who judge women harshly to risk treating her differently.

I remember crying quietly when I learned of Linda McCartney's death from breast cancer. A woman  I never really warmed to. She wasn't even married to my favourite Beatle ( that would be George) but I guess what I did know is that she was a committed mother with much to live for. And her wealth couldn't save her. My tears not just for her but for the rest of us for whom money might not be enough to save us too.

Yes Angelina's wealth will have helped . In the US she will be seen as fortunate, many will  wish 
they could afford to be screened and have the option for risk reduction too.  But they will not have the
 kind of insurance that would allow that. In the UK those who are at high risk can make those choices without the worry of cost. But they do have to factor in the impact on their health and wellbeing.

There are studies too that look at tamoxifen as a preventive option. That's the same drug that many with a diagnosis of cancer stop taking because of its side effects, too lengthy to list here. Not much of an option is it? Regular screening is also an option but can only identify an early cancer with ensuing physical and psychological Impact. Reconstructive  work on a breast that has been treated for cancer can be much less successful. There are no easy answers here, yet.

I'm so glad that Angelina has taken this decision from a place of health, empowered to make the right choice for her. I welcome her honesty on behalf of others. And the ensuing debate about making these tests more affordable for others too. But let's not forget what we really need are far better 
options for people in this situation. Investment in research and collaboration to understand more fully
 how to prevent the disease has to be the best option for the longer term. And therefore better options than an are more available to frightened young women than this. 
They all deserve better.

The wisdom of patients...and carers.

Don Berwick: 'One of the most important guarantors of continuing excellence in the NHS is the ability to include and invite and listen to the wisdom of patients.'

It's been an inspiring week. I have heard some challenging and inspiring talks, had wonderful conversations, met some great people and touched base with old friends and new. I may be exhausted but its been worth it.
That's not only because of good outcomes but its also about spending time with good people. My new role is so much about connection and that's why I really enjoy it.

When I first left clinical nursing it was the connection with patients I particularly missed. That sense that you had made a difference to someone is often very immediate as a nurse. Its the thing that helps you deal with the emotional cost of the role. The power of the connection dependent on empathy,  respect and a deeper listening. It needs the right context too to flourish.  If as a clinician you are stressed through work pressures, illness or other external issues its hard to invest in a therapeutic relationship.

It's often said that people have to experience something to truly understand the issues for others. But does it really? After all we are different in our response to life's challenges so what I know about me can be in the way of what is another's truth. It's why self awareness is a fundamental part of the toolkit of the helper. Knowing where your experience and another's differ. But connecting to your own deeper understanding does help you be able to go there with others.

What being on the receiver end of care has helped me understand though is why    when your care is not person centred it is easy to disconnect. I hadn't understood before why people sometimes didn't  attend follow up. But  then when you wait hours in a follow up outpatient clinic to be told you are fine, without any exploration of what fine would be for you.  Nothing about how your life has been impacted on, simply about how a scar has healed...the visible ones at that. Yes I understand how it feels not to want to go back.

But my more recent diagnosis in a unit which is so focused on the person, my follow up has become a touch point for reassurance, talking through my options. Yes it can be the time when the journey might begin all over again...another mammogram showing recurrence but I know they will support me, care for me, do their best to see it through my eyes. Demonstrate empathy throughout my care. It's the fundamental difference between a good and bad experience of care. Securing that for everyone is something worth fighting for.

Reasons to be heartful.
I spoke to so many people this week so passionate about improving care for all I really do believe the time has come for change. And some cat and dog empathy is emerging in the Birt household. Moments of affection being observed. Breakthrough in team!

For mothers and daughters, wear your support.

When I joined Breakthrough Breast Cancer I looked forward to Fashion Targets Breast Cancer. Shopping for a good cause has a certain appeal-excuses to buy nice clothes I don't normally need. The fantastic photos of the celebrities supporting the campaign have offered iconic images over the years. One that stood out for me was Kylie wrapped in the image of the target, the emblem for the campaign. Her beauty and fragility in that moment captured for ever.

I was the same age as Kylie was when I was diagnosed with breast cancer for the first time. OK I know that's where the similarities end...my backside will never look like that! But I have recognised her reluctance to be defined by her cancer and then her courage when she has acknowledged it too. She hasn't pretended it didn't have an impact but she has also demonstrated her beauty and talent are in no way diminished.

This years fashion targets campaign has a focus on mothers and daughters. The stunning images of Sharon and Kelly Osbourne and Pearl and Daisy Lowe shine out from poster stands across the UK. As we know Sharon opted for a bilateral mastectomy after identifying her genetic high risk  of breast cancer. A brave decision which must have had a huge impact on her daughter too. As part of a  BCCEU tweet chat recently I asked the assistant director of research for Breakthrough Breast Cancer , Julia Wilson (@jul-wil)what reassurance could she give families in the future. Her reply was "our commitment we are ready to pick off different types of breast cancer one by one and stop mothers and daughter dying".
Campaigns like fashion targets may seem at one level glamorous but that's not what they are about.....they are to bring much needed funds into this work. So I will be wearing my support this year again. Here's more detail about whats on offer.

My family like many others has felt the impact for mothers and daughters. My step daughter, my daughter and I did the Edinburgh moonwalk a few years ago, less than a year after my step daughters mother had died of breast cancer. A poignant midnight trudge through our beautiful city, our hearts heavy with loss but strengthened but with that shared purpose. The sight of my son as a volunteer helper throughout the night brought tears to our eyes, as did the greeting from their Dad at the end.  Fathers, sons as well as daughters all feel the impact after all.

Reasons to be thankful.
I will leave you with the image of this particular mother with her daughter who is thankful everyday still to be here, 19 years after breast cancer first invaded our lives and also after its impact a second time. That's the result we want for everyone, so do wear your support, the money is well invested....in saving lives.