” Next stop Phi Phi Islan ” the Thai tour guide shouts in broken English. The rickety boat speeds through the water with black diesel fumes spouting from the motor like an old jakey puffing out the smoke from his black lungs.
The boat slows to a stop before we see the beach. I look at my reflection in the water the hot sun beats down on my neck warming me. I’m happy and I remember why I’m here.
My mind tumbles back to that night in marshmallow towers. My almost empty, 13 floors up coffin. I was the pay master again that night . Paying for the white lines and green plastic bottles of apple flavoured acidic ,gut rot. I paid for the company of a cardboard friend , giving him my drugs and drink in exchange for a few hours of fast conversation and a break in the routine of loneliness, and talking to my monkey mind. Talking to my walls.
I take another fat stinging line up ma hooter and in my intoxicated haze I notice that the film ” The Beach” is on the TV . Leonardo jumps off a cliff into the most beautiful peaceful place I have ever seen . White sands, turquoise water, green, green jungle and peace. Oh the peace. Paradise!
” I’m going there John!” I exclaim. ” Don’t talk shite Dave, you’re schizophrenic and ye canny even get yer arse on a bus. Only place you’re going is fuckin Gartnavel Royal” John sneers at me. I shrink into myself and retourt nothing because I know he’s right.
The drugs are gone and my cardboard companion leaves,….but his remarks don’t. The soft edges of Marshmallow towers become sharp and jaggy again as I sober up.
The voices start and then the disorganised thoughts and delusions . “I’m being watched, ….they are after me! I’m evil. I’m worthless.” …. CPN help! they’re coming to get me !…… And off I go …..McNair house here I come!!!…. Paranoia and fear.
John’s comments going through my head, cutting and slashing me.
Resentment turned to determination, I was going to get better.
I thought I was a million miles away from the Beach, but really I was only 12 steps away.
Coffee and a regal king size and its….
” keep coming back son” ” Don’t lift the first drink and you can’t get drunk” ” if you stay sober you can have a life beyond you’re wildest dreams ” ” do lots of meetings ” …..” God’s good Son! ”
Determination turned to forgiveness, not just for others, but myself too . I righted wrongs and humbly asked others if I could make things right to them.
Compassion came too and lots of it, Compassion for others who suffer. Compassion for me.
As my addictions were removed my mental health improved. Prayer and medication.
So I trudged the road to happy destiny and five years later…… here I am , looking at my reflection in the turquoise water. ” you okay? You excited? Kirsty asks . “Aye am great”. “It is beautiful here and looks much better than it did in the film” .
The boat bobs in the shallows and Kirsty and I jump into the cool water. I inhale deeply and feel the gratitude. We swim to the beach and I’m there. Peace. Paradise. Maybe we will get married, have two kids a house and a dog? Who knows. Stay in the present. Not in the future. Enjoy the beach. I can’t help it. My mind wanders again and I think…
I could still be in Marshmallow Towers talking to the walls, if it wasn’t for someone’s observation of the way my life was going…… thank you John and thank you ” The Beach”
“Wherever the art of medicine is loved, there is also a love of humanity” – Hippocrates
In 1816 René Laennec, a 35-year-old French doctor, invented an instrument that would allow him to listen to a woman’s chest without having to place his ear against her chest, thereby preserving her modesty. “I rolled a quire of paper into a kind of cylinder and applied one end of it to the region of the heart and the other to my ear, and was not a little surprised and pleased to find that I could thereby perceive the action of the heart in a manner much more clear and distinct than I had ever been able to do by the immediate application of my ear,” he wrote in the preface to De l’Auscultation Médiate in 1819. The instrument, which he named the stethoscope, quickly became popular and in the words of medical historian, Stanley Reiser, “led to a seismic shift in how doctors evaluated illness and their relationship with the patient.” In his book Technological Medicine: The Changing World of Doctors and Patients, Reiser expresses concern that over-reliance on technology has replaced openness to the patient as a whole person. The new technology, he wrote, “made doctors more interested in the physical findings of disease than in the life of the patient.
Humanity in healthcare rests on an awareness of patients as human beings first, patients second. Sir William Osler (1849-1919), who is often called the father of modern medicine revolutionised the teaching of medicine by bringing students out of the lecture hall for bedside clinical. One of his most famous sayings was “the good physician treats the disease; the great physician treats the patient who has the disease”. This I believe is the essence of humanity in healthcare – the ability to see beyond the biomedical model of disease to the life into which the disease has intruded. “The foundation of healing”, believes Dr Adrienne Boissy MD, Chief Experience Officer of Cleveland Clinic Health, “begins with reassurance that [patients] have been seen and therefore valued and appreciated for the human that they are beyond the disease”.
I vividly remember the day I was diagnosed with breast cancer twelve years ago. The doctor who delivered the news ignored my tears, and while he spoke, didn’t make eye contact, reassure me or make any other effort to acknowledge my shock and distress. When I remarked on the doctor’s lack of empathy to a family member later that day, he asked me whether I would rather be cared for by a skilled surgeon with a poor bedside manner or a caring and compassionate surgeon with adequate but not exceptional surgical skills. Does it have to come down to a choice between compassion or competence? Can’t we have both?
Compassion and empathy should be at the core of any good therapeutic relationship, but as Dr Rita Charon, founder of the Program in Narrative Medicine at Columbia University, wrote in a 2001 paper for The Journal of the American Medical Association, “despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses.” Dr Charon believes that “a medicine practiced without a genuine awareness of what patients go through may fulfil its technical goals but it is an empty medicine, or at best, half a medicine.”
Clinical empathy has been defined as the ability to stand in a patient’s shoes and to convey an understanding of the patient’s situation. It means not just recognising that the patient is suffering, but acknowledging the distress and moving to address it. The ability to listen and empathize is central to establishing trust in the clinical encounter, and yet these skills are undervalued and often ignored in traditional medical education. In years past, clinical empathy was simply viewed as having a good bedside manner, a “nice to have” rather than a “must-have” trait in medicine, but a wave of recent scientific research has now shown positive correlations between empathy and improved patient outcomes, satisfaction and adherence. A study conducted with diabetic patients showed they had better control over their illness and fewer diabetes-related complications requiring hospitalisation if their doctor scored high on cognitive empathy. In another study, patients who rated their surgeons as highly caring during their stay in the hospital were 20 times more likely to rate their surgery outcome as positive. And empathy is not just beneficial to patients, a 2013 study suggests that doctors with higher empathy levels—meaning that they are aware of their patients’ emotional needs and respond appropriately to their concerns—experience less stress, cynicism, and burnout than those with less empathy.
An extensive scientific literature review conducted by the Center for Compassion and Altruism Research and Education (CCARE) at Stanford University demonstrates that “when patients are treated with kindness — when there is an effort made to get to know them, empathize with them, communicate with them, listen to them and respond to their needs — it can lead to faster healing of wounds, reduced pain, reduced anxiety, reduced blood pressure, and shorter hospital stays.” The research also shows that when doctors and nurses act compassionately, patients are more likely to be forthcoming in divulging medical information, which in turn leads to more accurate diagnoses. They are more likely to adhere to their prescribed treatments, which leads to fewer readmissions. The authors of the review conclude that “kindness shouldn’t be viewed as a warm and fuzzy afterthought, something nice to show after the “real” medicine is administered. Instead, kindness should be viewed as an indispensable part of the healing process.”
More recently, Mills and Chapman in an editorial published in the Australasian Medical Journal, go beyond kindness and empathy to a call for compassion in medicine. They draw a distinction between empathy, which relates to an awareness of another’s experience, and compassion which relates specifically to contexts of suffering and the alleviation of it. “Compassion is more than just kindness,” they write, “it involves cognition, affect, intention, and motivation; that in a context of suffering, relate to the alleviation of that suffering.” In an article in Modern Healthcare, Julie Rosen, executive director of the Schwartz Center for Compassionate Healthcare, writes that compassion is the foundation of good medical care “recognizing the concerns, distress and suffering of patients and their families and taking action to relieve them”.
I believe compassion in medicine is based on acknowledging the difference between illness as a diagnostic entity, and illness as the way in which the disease is perceived and responded to by a person. In limiting its focus to the physiological effects of illness, medicine often overlooks the human experience of illness and is in danger of losing sight of the person with the illness. The late neurologist, Oliver Sacks addressed this failing when he observed that “medicine has shifted its focus to getting to know and treat a disease instead of getting to know and treat the person with the disease”. This echoes Donald Evans in his book Values in Medicine: What are we Really Doing to Patients? who writes, “the contribution of science to the development of medicine has made remarkable strides in the delivery of effective health care, but it has also tended to remove the patient’s experience of illness from centre stage.”
The practice of medicine is both a science of knowledge and the art of humanity. For too long we have trained doctors and nurses to see illness through a bio-medical lens which reduces patients to a set of symptoms without taking into account the wider emotional and social aspects of illness. Attending to how patients experience their illness within the context of their lives, rather than the narrow confines of symptoms, provides a richer perspective within which to learn how to care for the person with the illness. Collectively we must learn to cultivate the skills that are essential for humane medical care – empathy, dignity, respect, caring, kindness, compassion, and above all, a willingness to see and understand the person behind the patient. Repeated cases of failure in health and social care have revealed a common failing – staff lost sight of the person and stopped responding to patients as people. Building a culture of compassion doesn’t involve any large capital outlay, but in reframing medicine through this human lens we will reap a greater reward in terms of meaning, context, and healing in healthcare.
To celebrate National Acts of Kindness Day, Dharmacarini Kuladharini of the Scottish Recovery Consortium makes the case for #EmphasisingHumanity and why we all need and should encourage kindness.
Try A Little Tenderness…
A week into the national kindness challenge, Kinder Scotland 2017, I find myself writing chalk messages of appreciation on the pavement outside the building that houses the Scottish Recovery Consortium. In the heart of the merchant city in Glasgow people stop and stare and smile.
Kindness is something we all need more of; its that connection, acceptance and loving regard that is part of what helps all humans feel well, alive and that life is worthwhile. Bruce Alexander in his seminal work, “ The Globalisation of Addiction”, calls this experience psychosocial integration. We know our place in the world and in the hearts of our loved ones; we are part of a real community.
Dislocation is when these connections, environments and those secure places in the community are broken. This can happen through war, economic upheaval, loss of family and nation as well as other aspects of the unrelenting march of hyper capitalism, from the mass indoctrination into self-interest and greed being the only interest worthy of attention to the loss of support services that kept you from falling off the edge.
This dislocation, he says is at the heart of the spread of addictions in the world. We use substances and behaviours that we feel will soothe us and reconnect us quickly with a sense of well-being. As Johan Hari points out in “ chasing the scream” humans and animals take substances to alter their experience of emotional pain as well as physical pain. This is normal.
When the dislocation grows and gets more extreme some of us will turn to more substances, more shopping, more working, more video gaming, more overeating, more gambling, some of us will get very depressed, some will commit suicide.
The chronic health problems of the 21st century are resistant to public health strategies that focus exclusively on the individual as the source of the problem. Phil Hanlon, while he was Professor of Public Health at Glasgow University, called the problems of addiction, depression and obesity ‘diseases of modernity’, products of our market driven, highly materialist, individualized form of economy. He suggest that new forms of public health action are needed to stem the tide of pain.
At the SRC, we are all about the love, the human connection, the real community and so we have joined up with U lab Scotland and Carnegie Trust and surprising bodies like Visit Scotland to promote that spirit of Kindness, that will be part of helping us all heal. It’s not the only change we need but it’s a great contribution.
To celebrate the Kinder Scotland 2017 challenge, the SRC has made a PDF of its Scottish Recovery Workbook and is giving that away to anyone anywhere in the world that could use it to recover from addiction. It’s a gift from people in recovery in Scotland to people suffering from addiction anywhere in the world. Connected through kindness and our beautifully flawed humanity.
To me, to create true transformation in health and social care, transformation needs to be considered on an individual level as well as looking at the wider transformation landscape. This personal idea of transformation should be able to slot into the interactions people have with the health and social care professionals they come across throughout their life – but for this to happen there is a need for a shift in the way that the health and social care system across Scotland operates. The introduction of Health and Social Care integration was promising and in theory makes absolute sense – however in practice will this turn out how we imagine it and truly benefit the individuals that it needs to?
On a personal level I think of transformation as the ability for me to live well with a long term condition, but also to be able to learn, adapt and develop as a person in response to this, with the support of those around me including health care professionals. The support that I have received over the last two years from health professionals has been very hit and miss. I know I am very lucky to be receiving and have received the support I have thanks to our NHS – however this system is far from perfect and I have been victim to the postcode lottery which exists in mental health care support across Scotland. I did receive crisis support but not without a fight, but 9 months on from when I first presented to a GP in crisis I am still on a waiting list to see someone from the Primary Care Mental Health team. I have had to ensure that I am still on the correct waiting list as it seemed that one hand does not know what the other is doing. I am proactive and capable of advocating for myself which has prevented me falling through gaps – however, what about those who don’t, or those who like me have tried to advocate for themselves and seemed ‘too well’ to receive the appropriate support and treatment? It should not require an individual or their families and carers to have to fight and chase up services?
To be able to provide true transformation across health and social care in Scotland, there needs to be a shift in attitude towards person centred approaches – there is already evidence of this being demonstrated by the outcomes of projects funded through the Transforming Self Management in Scotland Fund. Approaches like those that funded projects provide need to become more common place – putting people at the centre and working with them to design, deliver and evaluate services. The true worth of Health and Social Care Integration won’t be clear for a while, but to get the most out of it there must be true partnerships between statutory and third sector agencies, there must be a trust placed in the third sector that they already are and can continue to develop and provide a kind of support for people that is not currently available through statutory agencies and must stay where it is to protect the true nature of this work. Strong partnerships supporting these approaches are needed to move away from a postcode lottery and ensure that everyone who needs support can access it in a way which suits them and in a timely manner. People are more likely to thrive, develop and therefore give more in return to society if approaches are person centred. There are partnerships forming across Scotland between statutory agencies and third sector organisations which are effectively providing services and support for people in a way which is right for them, precisely because it has been designed and developed in conjunction with them.
Transformation in health and social care: ‘all that matters is what we do’
Transform, evolve, improve, change, design, innovate. Words so interchangeably used they’ve all but lost their utility. Yet, we know it when we see it. The (ongoing) transformation of health and social care is something I have both watched and lived for many years.
I work in digital public services transformation, but my professional life is not my only reference point. In my personal capacity as a person with multiple sclerosis (MS) I have lived long enough to have witnessed the transformation of health and social care services. My own relationship with the idea of health and social care has also transformed utterly since being diagnosed with MS over 20 years ago. The challenges this has brought into my life have led me on an often difficult and equally often life enhancing journey of exploration of self, of society and its attitudes towards illness and disability, and of our health and social services.
I grew up in a Scotland where ‘the doctor’ was someone you saw very rarely and who ‘made it better’, and ‘the hospital’ was somewhere people went to give birth, die, or have emergency treatment. Both were to be avoided if at all possible. Feeling ill, minor injuries, these were things your mum or your granny dealt with. There was no internet to be consulted, just the internet of women who knew what to do until such time as they decided it was a matter for ‘the doctor’.
In the early 1990’s, the health service wasn’t really prepared to deal with someone with a progressive and incurable disease. They didn’t know what to do with someone who couldn’t be fixed, and I didn’t know how to be unfixable. I suspect we both felt disappointed by each other. For some reason none of us considered the idea that perhaps the need was to learn to live with, not focus on ‘being fixed’. The transformation I am seeing emerge now is one of embracing the idea of managing health together. As MS clinics and nurses, new symptom management and disease modifying drugs, and patient support groups popped up I began to understand that how I lived with my multiple sclerosis would be as much an outcome of what I did as of the medical profession’s interventions.
It seems strange now but when I was younger ‘health’ was something other people did to me, rather than something I had or controlled. As the century drew to a close that began to change. Self-management entered my vocabulary. The web gave me access to information. I began to feel more in control of how I lived with, even if I could not control what I lived with. That’s the transformation I have seen emerge.
Now it’s not been without its teething problems: when should or shouldn’t I seek medical profession support; which of these conflicting bits of advice is the correct one; what happens when I have become convinced that a treatment or drug will help but it is not available on the NHS; do I call the GP or the MS nurse when something happens; who is my ‘go to person’?
Still, teething problems aside, the transformation in me has been significant. I feel much more confident in my ability to constantly adapt to the changes of a progressive disease. I view the medical profession as just one part of my self-management system, rather than as the place that owns ‘making me better’. Even if in my low moments I still wish that ‘the doctor’ could make it better I have become much more positive about my ability to live with MS. As I get older and experience greater disability my mind has naturally turned to care as much as health, and here too I feel more willing to explore what I can do to ensure I have the care I need. I’ve made adaptions to my home, and there are more planned. I’ve prepared an advance directive, looked at care options and costs, and generally begun to prepare for a time when my ability to look after myself may be impacted (the most annoying thing about MS is that you simply cannot tell what it will do to you until it happens).
Of course there’s a but… and it’s that I am lucky. I am still functioning physically and cognitively pretty well. Unlike most people who have had MS 20+ years I am still able to work, thanks largely to a profession that lends itself to accommodating my condition, and a highly supportive employer. I have a family who provide a huge amount of additional support with health needs and around the house. I live near NHS Tayside’s Ninewells Hospital in Dundee where I have the support of an excellent MS Clinic (MS nurses, MS physio, neurologist) and I have the future security of a pension. Without all of those would I be so positive about the transformation I have seen in health and social care, so able to self-manage, so willing to engage with professionals as part of my support team? Even with all of my advantages there are times when I feel bewildered and overwhelmed by the effort of self-management, fearful of the future. How can we ensure that the benefits of this transformation are evenly distributed and what about those who just want someone to make it better or who will never be able to independently self-manage?
Realistic medicine, the integration of health and social care services, the growth of digital public services, all suggest that both the Health and Social Care professions and the people of Scotland are on a fast moving journey of transformation in how we understand, think about and attend to our heath and care needs. We have challenges ahead. This demands we learn to relate to each other in new ways, creates new pressures and expectations on both people and professionals, needs us to find new ways of thinking about old problems, even to rethink what we regard as ‘the problems’. What seems clear is that the time of ‘being fixed by the doctor’ is transforming into the era of working with health and social care professionals in the pursuit of the best health our circumstances will allow, and the care that will ensure we can maintain that as best our circumstances will permit.
What excites me professionally about health and social care transformation is the opportunities that come in the wake of this transformation, as all of us begin to acquire the skills of creativity and innovation that are undoubtedly at the heart of delivering it. What excites me personally is the comfort of finally accepting that learning to live with is the goal, and the realisation that as someone with MS I have a chance to be part of community driving national change in how we collectively learn to help each other live, and die, as well as we possibly can. As our other national bard, the wonderful Liz Lochead, once said (albeit in a slightly different context):
Only by a shift and sharing is there any chance
For the Welfare of all our people and Good Governance.
Such words can sound like flagged-up slogans, true.
The first in our brand new for 2017 series on ‘What is transformation in health and social care?’ is from Cath Cooney, Scotland’s House of Care Programme Manager at the ALLIANCE.
What is transformation in health and social care?
A good question to reflect on at the start of a new year. The word ‘transformation’ is at risk of becoming another well used but ever more elusive concept as it becomes part of our everyday language in the world of health and social care. Somehow despite our best efforts the thing we seek to develop becomes harder to pin down.
This past year saw some of the pieces of the transformation jigsaw come a bit more into focus as I’ve grown in to my role within the Health and Social Care ALLIANCE and the House of Care programme in Scotland.
In the House of Care programme, we use the T word a lot as well as coherence, person centredness, self management and sometimes even compassion. It’s a funny word – sometimes people move towards it in conversation and sometimes not. For me it’s a very important and fundamental jigsaw piece and I like the definition of compassion from Dr John Gillies, co-director of the Global Compassion Initiative and former chair of the Royal College of General Practitioners,
“an acknowledgement that a person or individual is suffering or unhappy and having the intention to take action to address that”.
Sometimes compassion gets a bad press as soft and fluffy – a luxury if you like in the real world of health and care but I don’t agree. It’s at the heart of the care and support planning conversations in the House of Care adopter sites across Scotland where prepared people and prepared staff develop a different kind of conversation.
It works best when there is a shift of intention towards sharing the power in the relationship and really supporting the person to be in the driving seat of their care and support.
It was heartening to read the recent social work report ‘It’s no longer them and us –it’s just us’, which also echoes the importance of co-production within a good conversation:
‘The relationship between the assessor and the assessed person is the foundations – it’s so important. It needs good communication – especially good listening – and honesty. Processes and systems should be built around this and enable it, rather than getting in the way.’
Hopeful signs perhaps that policy and practice in health and social care integration really are beginning to converge with the person at the centre.
We say we want a more human compassionate approach but when budgets are perceived as tight, services like this, which have high levels of support and satisfaction from people and their families are often cut; struggle to survive on short term funding; or are perhaps not even funded in the first place. Those services and staff are often judged against a reductionist effectiveness model, leaving the third sector to be the fertile ground for more person centred approaches and services that are informed by the voice of lived experience. We need a third sector that is truly an equal partner in health and social care.
But how can this shift in relational care be more clearly measured and evidenced? Sir Harry Burns is chairing a national review of indicators and targets. We must measure the process and the day to day business of the effectiveness of the systems but we need to include the voice of lived experience if we really want to understand what good care and support means. I hope that what emerges will also include the language of human, relational care in support of transformational change.
There’s a growing body of evidence to show that compassion is good for us all. Whether you’re a person living with a long term condition, an unpaid carer or a staff member, I’m hoping that in 2017 we openly move towards a kinder, more compassionate approach in support of transformation in health and social care.
There was an excellent piece in a recent Sunday newspaper where Dr John Gillies spoke bravely and clearly about the need for compassion and Dr James Doty, the neurosurgeon who founded the Centre for Compassion and Altruism Research at Stanford University, quoted the Dalai Llama:
“If we say the practice of compassion is something holy, nobody will listen. If we say, warm-heartedness really reduces your blood pressure, your anxiety, your stress and improves your health, then people pay attention.”