Saturday, 22 October 2016
Disrupted is the word to describe me after I watched the documentary The Age of Loneliness. Yes I shed tears when people told their stories and saw myself reflected in some of them too but what I noticed mostly was that it left me more thoughtful than fearful. Because if I'm honest, fearful was what I expected.
You see I realise that my desire to watch it was akin to a finger reaching out to scratch a sore. One of the participants said they didn't fear death but what they did fear was loneliness. I nodded as I heard those words. It's not that I'm lonely, it's that I fear loneliness in the future. They held up a mirror to a reflection I'm not keen to acknowledge. There was a time I wouldn't have felt the fear so strongly but having seen the impact of social isolation on my mother as her dementia impacted and a recognition of my own vulnerability to social isolation through illness this year has changed that. Many long term conditions disconnect people from the life they want to lead.The fragility of life and what we take for granted has been something of a theme this year.
For generations now in our culture we have made independence our goal for ourselves and our families . Standing on our own two feet a source of pride. Young or old we proclaim our need to have our own space, we pride ourselves on being able to do things ourselves and we celebrate that in others, we make statements about not wanting to be a burden. And yet as the documentary demonstrated, that very prize has become a potential threat to our wellbeing. Somehow the loneliness of the young people interviewed felt the most upsetting. Often surrounded by others and yet alone; their loneliness illuminated by social media stories of different lives just out of reach. Their tragedy was of life passing them by and yet unsure how to change that.
For the other people interviewed it was the loss of partners, parents,friends and wellbeing that left them describing a loneliness that seemed unlikely to change for some at least. An unknown time reaching out into the future to face alone. A 92 year old widower told us that, even with her dementia,he would wish his wife back to him because then he would still be able to care for her; deeply moving words of love and loneliness.
Loneliness is of course an internal state, its social isolation that's triggered by external changes. What the documentary teaches us is that we are all at risk. This is not something we can vaccinate against or spend our way out of. But there are things that we can do both internally and externally to change things. I was really pleased to see Contact the Elderly mentioned in the programme. I volunteer with them and know that the afternoon each month when I take an isolated older person for a welcoming tea to another volunteers house, enriches my life as well as theirs. And there are many other supports in the community, what's important is that people get connected to them.
However, more widely in our culture I wonder if we need to not make independence the ultimate goal but to find a way for interdependence to be valued. Id like to create a society that builds and values connection, that allows extended families to be around each other, that reaches out in times of illness, stress or loss. I would love to see us create the policies, systems and legislation that encourages us towards communities that care....however unlikely that looks in our post-brexit Britain.
What it also reinforced for me is that we ourselves need to do what we can to build our own resilience which will enable us to live on our own,as that could well be our future. Perhaps the documentary helped me acknowledge that, rather than hide from it. And while in the meantime it has reinforced for me the need to invest in friends and connections as well as family, life has also reminded me this year that it isn't predictable or controllable.
So I'm reminding myself to live in the fullness of the here and now and enjoy life's connections as they eb and flow. In spite of illness-or maybe because of-we've packed in a lot of truly special experiences in this year. And I'm savouring every single moment.
I leave you with the wise words of Mary Oliver ...
Wednesday, 28 September 2016
And so it approaches, the end of September and we're not just heralding the season of mists and mellow fruitfulness but also October brings an omnipresent pink hue which means it's breast cancer awareness month. We can wear it pink, buy pink items of clothing, furniture, jewellery and food even and all to raise awareness of breast cancer. But for all the pink clamour of October Does it really have the impact it was designed to? I do wonder if we really serve all those people affected by breast cancer by the pink wash that October has become. Breast cancer has become a commodity, a way to sell a product that leaves me at best uncomfortable at worst angry. Don't let me put you off buying and wearing your support even but do make sure you know where the money is going.
I notice how reluctant I am to say anything negative about having had breast cancer. It feels that this month you're only allowed to be a plucky woman telling your survivor story with a smile. Can people affected by breast cancer really be served by the pink washing of what is still a devastating diagnosis, followed by often brutal treatment and yes of course survival is now so much better but nonetheless it leaves a legacy nobody would wish for. In a year when I personally have seen two very special women die in their 50's , I feel very fortunate still to be here, savouring life. But with each diagnosis and treatment I have lost wellbeing and capacity to take on life in all it's light and shade.I'm grateful everyday for all I'm still able to do and enjoy but I'm sad too for what I've lost and for all the days lost to the grey, emptiness of depression which so often accompanies a cancer diagnosis.
To be honest you can map my recovery in bras. Early this year they were grim postoperative white monster bras, to be worn 24/7 to protect the surgery. After that I've tried prettier versions which though still shapeless, at least weren't the post-op variety. But just this week I managed to use some lovely gift tokens and get three beautiful new bras. That feels like a big step forward and I've enjoyed throwing the others away. A stage at a time, I'm reclaiming myself and that feels good.
I loved the song Tears of a Clown as a youngster and it's words are resonating for me just now. So if there's a smile upon my face, it may in part be there to fool the public as the song goes but it's also real- if still a little fragile at times. The tears are real ( and yes they are mostly when no one else is around) too for the people who are no longer here and for the suffering breast cancer causes to people and their families. If you want to wear pink of course you should but do also look out for those you know who are affected by breast cancer in whatever way that is and hold them close. October for them can be a painful reminder. Put your money if you can spare it to charities who will invest it wisely and prioritise being breast aware as shown here at Breast Cancer Now. They estimate that if every woman checked her breasts regularly we could save 1,500 lives a year. Now that's worth a smile.
A wise older doctor said to me after my first diagnosis, more than 20 years ago, that there would be better times. And he was absolutely right. So to all of you who are struggling with the impact of breast cancer, when the tears are real and important to shed, remember that whatever happens, there will still be good times and my advice would be to be sure to really treasure them. I know I do. Like my recent holiday to Rome with the family, I savour every moment. Here's to more of those times for us all.
Sunday, 21 August 2016
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
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, Ishare with you the song; "It's no a wean's choice" ( it's not a child's choice)
Saturday, 13 August 2016
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.
Wednesday, 27 July 2016
This is a short post script on my last blog. Yesterday thanks to the response of my local team to my blog, I was offered a cancellation at the respiratory clinic. No answers as yet which I'm not surprised by as this has been a complex situation but at least I'm in the system at last.
I'm writing this to say a warm thank you to the nurse who hugged me as I cried and spoke about how hard a year it's been. I want to say a thank you to the radiographers who were kindness itself when they did a CT scan. And I especially want to thank the consultant who pulled favours and went the extra mile to ensure I was ok. I felt his kindness and concern.
And so I return to the theme of the blog. My concern has rarely been about the people. I have seen small kindnesses ( to others and to me) in particular in the Western General Hospital in Edinburgh, it's in the culture from porters to medics there I believe. BUT some of the systems are letting this good hearted team down. And of course they are letting down the very people who need them.
I'm hugely appreciative of getting seen yesterday but what about those who can't or won't do that. I wont be content till we get it right for them too.
In a week when we lost Kate Granger who did so much to raise awareness of compassion in care lets be reminded that the little things matter as much as the big things and that kindness too is a therapeutic tool.
Saturday, 23 July 2016
An appointment with the NHS.
You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.”
― Atul Gawande,
I’m a health activist and I work as a coach and leadership consultant with a special focus on health and social care. I've been a nurse and health sector charity director and I have done all of this because I'm passionate about having the best health and care possible.
This year I've come through treatment for my third diagnosis with breast cancer and my care for that has been outstanding. Excellent clinical care combined with a compassionate team at all levels.
But that's not been enough as since my surgery I've been disabled by breathless which isn't related to the cancer or evidently to the surgery. And because of this I'm undiagnosed in a system that doesn't deal with this. Without a diagnosis you are lost in a system that doesn't connect and certainly doesn't see you as a whole person. I've been scanned and tested but still no answers. And all I have are verbal results so I have no ownership of my own information. This is the only part of my life where this happens. Finally a referral to a respiratory clinic was made in May. Well it was mentioned in a letter to my GP and copied to the clinic who didn't trigger a referral as I discovered several weeks later when I called concerned I'd heard nothing.
Finally an appointment came in when I called, so I planned a holiday I had had to cancel earlier in the year as I simply wasn't well enough. You see I know now to not dare to change an appointment. I'm self employed, an appointment on a day I'm working is loss of income and loss of trust in my reliability. But that counts for nothing in the appointments system. I knew to my cost this already when I changed a CT appointment and got a delay of another 6 weeks. I'm awaiting another CT as there was an issue that needs monitored and have tried to avert a problem of it arriving when I'm committed to something else, but that couldn't be done in advance I was told. So instead I have to wait and risk a delay all over again because I'm not expected to have a life beyond appointments.
So this week as I get excited about my holiday an appointment change arrives for the respiratory clinic and its when I'm holiday. I call up to explain and say I want the one I had, but that was cancelled as the consultant is off. With 10 days notice apparently. Now call me psychic but I'm suspecting its holidays. When I ran clinics as a nurse I had to book my holidays well in advance to avoid this very scenario. Is that so difficult here? So the first next appointment was the end of August on a day I have a full team event. I can't do it I said and was told in that case I had to go back in the system. My NO contained all my frustration and anger at this unnecessary treatment. Finally I got one the next day at the very end of August and an offer of a complaint form. I was also told my unhappiness would be noted so I await my appointment with a consultant already on the defensive. That bodes well doesn't it?
So I'm breathless since January and have an appointment for late August to find out the cause. Frankly this isn't good enough. And part of the cause of this is an appointment system that is inflexible and completely not person-centred. And the appointment staff who on have been at best inflexible and at worst unpleasant.
I know the clinic is busy but this behaviour is avoidable. There are many ways to reorganise appointment systems to make them more person-centred. And also if we are espousing a partnership approach, why don't I have my copies of all my results? I know I probably should have got pushier earlier but I didn't because I haven't been well enough. I needed my limited energy for more life enhancing things. And that will be the case for so many in this circumstance.
So hereare some links for those who are accountable for improving care.The evidence that this can be better; it can be improved with the will to do it.
And a reminder from me that no matter how good the staff are if the systems aren't person centred then the whole experience of care is affected and the quality of a persons life is seriously limited in the meantime. I'm hugely grateful for the superb care I have had, free at the point of need, but not only is the system letting people like me down but it is letting down the very people who are truly doing their best to plug those gaps. This can be changed with some imaginative thinking, some courageous leadership and frankly some humanity. If you want help to do this, I'm just the person to help. And now I'm on the case, I'm not going away.....
Thursday, 21 July 2016
Cornfields; Ayrshire a poem inspired by a painting by Barbara Rae on exhibit in the City Art Gallery Edinburgh. Thanks to Helen Boden for the stimulus and encouragement.
The ravens flight
breaks the horizon
the corn threatened
by the coming storm.
They soar like acrobats
caught by the wind
the performance as dramatic as the sky
no net for us they cry.
The ravens flight
breaks the horizon
the corn threatened
by the coming storm.
They soar like acrobats
caught by the wind
the performance as dramatic as the sky
no net for us they cry.