Lynn reflects on yet another Carers’ Week in the context of a tumultuous General Election.
When I was asked to write this blog for Carers’ Week, I was conscious of the looming General Election. I did some fine-tuning post election on three hours sleep last Friday; still trying to make sense of it all (and not doing very well!).
Here we are then – Carers’ Week. It’s my second as an “official” full time carer – someone who provides 35 hours or more of care for the princely sum of £62.70 a week.
It’s not a landmark I want to celebrate, for a number of reasons.
I miss being in full time work; I miss earning a decent wage and I miss being valued by society. As a “scrounger”, I am deemed to be a leech sucking on taxpayers’ money. That’s what many in the political world would have you believe and yet, carers are essentially a significant, poorly paid public service, which underpins our communities and our economy.
Carers’ Week should be a spur to action – to improve carers’ experience and outcomes and to improve the way we treat disabled people. However, it seems only to elicit the usual platitudes about unsung heroes (my least favourite phrase). For many, Carers’ Week serves to remind us of how little progress has been made; in many ways, we are going backwards. The services and supports we need are not always there; the right services and conditions for our loved ones are eroding fast.
This past year has seen many of my friends and fellow activists fighting local authorities over destitution level care charges and further cuts to crucial care services. I’ve watched families brought to breaking point by a deeply flawed interpretation of legislation, which was meant to transform our broken social care system.
Continued cuts to respite and community support; further benefit reductions and cuts to pupil support all combine to leave families coping with more than most can imagine. Dealing with constantly challenging behaviour; lack of sleep; learning to use medical equipment; physical lifting and turning; washing; wiping and changing beds are a daily part of our lives – yet public services meant to make life easier often fail to work with us. The facets of good public service, outlined in the work of the Health and Social Care Academy seem quite elusive. Rather than ceding control to families to achieve good outcomes, carers feel that they have no control over their destiny. Carers’ Week often hides the less sanitary and salutary aspects of caring.
It has also coincided with the fallout from last week’s election – an election marked by chaos and change. Those concepts are not unfamiliar to carers and yet, there is no comfort here.
The result doesn’t help appease my worries for the future. It won’t do much to secure much-needed investment for social care or other services we rely on. It’s also unlikely to shift the debate on the value of unpaid care or the pitiful level of Carers’ Allowance.
Carers are a pretty cynical bunch – we will continue to be cynical as we wind our way through another Carers Week. And we’ll be watching what happens post election – with more than a passing interest!
In this blog post Pat Tyrrell, Deputy Director of Nursing and Midwifery at NHS Highland continues our #EmphasisingHumanity theme and talks about the importance of this, not only for patients but staff working within the health and social care systems.
Our health and social care systems are full of those who care deeply about the people with whom they work – both their colleagues and the people for whom they provide care and support. Minute by minute, hour by hour, day by day, we see interactions and services which are designed to respect the rights and needs of our fellow humans. This design delivers time and time again the kind of care that supports and helps the most vulnerable in our communities meet their potential and flourish with love and compassion.
We also know that the experiences of many people, both working in the health and social care systems and those experiencing the services of these systems, is not always a fulfilling one. People are often left feeling dehumanised and devalued, on the receiving end of transactional processes which fail to recognise and respect their needs as human, sentient beings.
We cannot talk about emphasising humanity in health and social care systems without recognising that this must include everybody within that system – staff and patients are not separate entities when it comes to considering the basic needs which we all have for relationships that respect our rights and which are based on compassion and kindness.
In Reinventing Organisations, Frederic Laloux states that “Extraordinary things begin to happen when we dare to bring all of who we are to work.” He also recognises that “In a forest, there is no master tree that plans and dictates change when rain fails to fall or when the spring comes early. The whole ecosystem reacts creatively, in the moment.”
Here he recognises what we know to be important – that we respect and honour our individuality and diversity and that as individuals we interact with others in a way that enables each and everyone of us to develop and to adapt in ways that meet changing needs and contexts.
It was on many of Laloux’s principles that Jos de Blok, the founder of Buurtzorg, the Dutch community based nursing service, established his new organisation on in 2006. This was in order to address the problems which he identified within a fragmented and transactional health and social care system in Holland – a system which met neither the needs of the patients nor the staff.
‘Humanity beyond bureaucracy’ is the mantra of all the nurses who work within the self organised teams in Buurtzorg. They work in teams of no more than 12 people, where respect and dignity are at the heart of their approach towards each other and towards the communities with whom they work. 10,000 frontline staff are supported by an organisation of 45 backroom staff. And there is no hierarchy. Decisions are made and enacted by teams, based on the needs of their patients and staff.
System design is important in enabling this. I have been fortunate enough to spend time with one of these teams in Rotterdam and know only that the positive visceral and emotive which I have experienced told me that emphasising humanity in everything that we do is a core essential of success in health and social care systems.
There is an urgency to redesign our health and social care systems in Scotland. As we advance with this redesign we must recognise both the individual and the system components that enable human flourishing. We can now make unprecedented decisions which challenge existing organisational paradigms and halt the perpetuation of poor experiences. We just need to be truly human and brave.
Lynn Williams, unpaid carer, argues that humanity should be at the heart of every political decision driving public service reform.
Caring for someone you love often plunges you into the heart of a public service maelstrom. The last few years in “Chez Williams” have brought numerous professionals into our lives – physiotherapists, OTs, a whole gaggle of different hospital consultants, specialist nurses and so many others. (I’ll leave our recent DWP/ATOS experience for another day!)
In reflecting on all that has happened to us, there has been one factor clearly evident in every good experience; professionals who have treated us both with tangible humanity.
The consultant who hunkered down on his knees to speak face to face to my husband – who saw the funny and deeply intelligent man behind the wheelchair; the specialist nurses who understand my husband’s needs and who have helped us to laugh during difficult periods which I can’t even begin to describe; the local rehab OT who took time to get to know us, to listen to my husband’s desires for his life and who worked with us and identified a service we didn’t know existed.
Humanity, compassion – and yes, the word of the moment, co-production. At the heart of those positive interactions, my husband has been treated with deep respect, with honesty and with the humanity that should form the foundation and building blocks of strong and effective public services.
This doesn’t mean that those working with us can always offer practical help or provide answers to our questions. Often, we just have to find our way through the next challenge. However, with someone at the end of the phone; with someone who has taken the time to understand our wee family, the challenges we face become more bearable.
If only that humanity was more evident in all aspects of public service; if only a desire to maximise quality of life sat squarely behind every commissioning exercise and at the heart of service and policy development.
The sad fact is that the lives of disabled people and their families are often reduced to numbers; to a unit cost in the equivalent of a factory production line. This culture is sadly too evident in the work and myriad of papers that drive the work of the still new Health and Social Care Partnerships. “Commercialisation” of public services can effectively squeeze out humanity or compassion for our fellow citizens – the criminality of charging for help to get to the toilet, to get out into your community are perfect, if somewhat disturbing, examples of this.
Like others, we have sometimes become lost in a maze of jargon, bureaucracy and confusion, deftly described by the Christie Commission seven years ago. Families are sadly still left to fight the public services which are supposed to be helping them.
In that fight, people are left exhausted and de-humanised; that was not what was envisaged in the journey to transform health, care and other services. Unfortunately, compassion and good outcomes often happen in spite of policies like integration or self directed support.
My husband and I are incredibly grateful to the many professionals who have touched our lives. They have helped us deal with dramatic changes and some dark days. Our experience should not be the exception and therein lies the challenge.
How we “measure” the humanity of public services must be considered by the Burns review of health and care outcomes; humanity should be sought in every manager and director who wants to progress their career in public service.
Humanity should be at the heart of every political decision about the services which profoundly impact on people’s lives.
“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.
One of the Academy’s Five Provocations, Emphasising Humanity, is described as the need “to emphasise the humanity and human rights of the people accessing and providing support and services, to create relationships that enable people to flourish.” Here, Lucy Mulvagh explains why she thinks human rights can help achieve transformational change.
It was love at first sight (or should that be sound?) when I first heard about human rights. I can’t really remember a time as an adult when they haven’t figured somehow or another in my life and it’s usually a subject that’s knocking around my head on most days.
I’ve got many reasons for this passion, but primarily it’s because human rights can identify and challenge the myriad power imbalances that currently exist. I firmly believe that if we were to adopt a truly rights-based approach – as widely as possible in everyday life – then many of society’s ills and injustices could be overcome.
Using rights to support decision-making – at the individual, community, regional or national level – means it’s based on fairness, transparency, equality and proportionality instead of (political) ideology, decisions around who is ‘deserving’ or ‘undeserving’, and (unwittingly or not) prejudice, bias and stigma.
I’m thinking of decision-making that can apply anywhere and at any time: how resources and budgets are allocated and disbursed; homes and public spaces are designed, built and sustained; health and social care services; income and social protection; good quality food, heating and clothing; transport; education; employment; … you name it!
I’m very sad that there is still such a great deal of suspicion and unease about human rights in some quarters. While this is due, in part, to genuine misunderstandings about rights being purely associated with lawyers, court cases and punitive action, I’m pretty sure that some is deliberate misinterpretation and misinformation by those who are challenged by the idea of greater equality in the distribution of power.
We all have human rights, simply by virtue of being human, and it’s a bit of a personal mission of mine to help raise awareness about rights and support efforts to increase our understanding about how truly revolutionary they can be – for all of us.
I welcome the growing appreciation – and name-checking – of human rights in national policy, but there’s still a long way to go to bridge the (growing) gap between rhetoric and reality and translate rights into everyday life. In the meantime much of the focus, including in health and social care, has been on concepts like ‘person centredness’, ‘compassion’ and asking people what’s important to them.
Don’t get me wrong, of course I agree we need as much compassion, kindness, listening and understanding as we can get. But I can’t help feeling that it’s a sad indictment of how we currently relate to each other – irrespective of where our interactions take place – that these could ever be seen as transformational. Aren’t they the basic minimum that we should expect when we relate to each other?
And what happens when, say, a service says that they listen to what’s important for people, but then they either don’t, or do but then don’t actually act on what they’ve been told? Very often this sort of practice is deplored and decried as unacceptable, and a (public) apology may be offered, but what difference does that really make to the people and institutions involved, and are we sure there are adequate concrete measures in place to ensure it never, ever, happens again?
We can’t, and indeed shouldn’t, legislate for compassion, but we can legislate for human rights and rights-based approaches – like the right to free, meaningful and active participation in decision-making – which means that when things go wrong there will be an open and honest approach to accountability, remedy and redress.
But it’s not just about the ‘stick’ of holding people or services accountable when things go wrong. Taking a human rights-based approach to decision-making means we can start with the ‘carrot’ and conceptualise and deliver support in very different ways, nip issues in the bud at a much earlier stage, and even avoid things going wrong in the first place.
I’m committed to spreading the love about human rights – who’s with me?
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.
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.”
It is an inevitable fact of life, often met with apprehension, reluctance and even tactical avoidance but awkward or difficult conversations are something we will have recurring experience of during our lifetime. Be it in our personal lives, or the workplace, as the recipient or the initiator, navigating how to handle these conversations can be a complex and intimidating affair.
The issue with awkward conversations is that they are often needed to be had, and when done right they can be informative, lead to a greater understanding, expanded perspectives…and dare I say it, even a resolution. When done right, they can move us forward.
But there are often a lot of variables at play – differing ideas and opinions, negative attitudes, defensiveness and fear of judgement are just a few of the causations that mean we approach these conversations with trepidation, and can all too often result in heads butting, voices not being heard and communication breaking down. The question is then, how do we handle these conversations? If there are so many potential benefits that can be reaped from an awkward or challenging conversation gone well, what can we do to make this a reality?
On the 24th January, the Health and Social Care Academy, in partnership with COPE Scotland will explore how to hold challenging conversations without them breaking down. As part of Workforce Scotland’s Firestarter Festival, a weeklong festival aimed to shake up and transform the way we work through a series of creative, disruptive and innovative collaborative learning events, Awkward Conversations will tackle the proverbial elephant in the room and explore how to create a psychologically safe space that will facilitate the opportunity for people to share some challenging issues without fear of being mocked or judged.
In health and social care, especially in the pursuit of transformational change in health and social care, awkward conversations will be an unavoidable part of the process. But if we can create the space to have these conversations in a purposeful, open and respectful way, then perhaps awkward won’t be something to be feared.
For further information on Awkward Conversations, and to book your place at this free event visit the Eventbrite page. Follow @HandSCAcademy on Twitter for updates.