Amplifying the voice of lived experience and supporting transformation of health and social care
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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!
Later this month, more than 1,500 people will descend on the Scottish Event Campus in Glasgow over two days for NHS Scotland’s annual showpiece event.
The official theme chosen for this year’s gathering is ‘Working differently across boundaries to transform health and social care’, a reflection of the consensus that transformational change is now needed if Scotland’s health and social care services are to be fit for the future.
In this vein, the Health and Social Care Academy has recently been working closely with a group of people that we think are essential to this transformation effort, our ‘future leaders’ in health and social care.
We worked alongside Scotland’s Universities and Colleges to support students of health and social care disciplines and young people who are living with long term conditions or in caring roles, to co-design and deliver regional ‘hub’ events, aimed at initiating a discussion among their peers about what the future of health and social care should look like. After all, these young people will be providing the care and support of tomorrow.
This culminated in a national event last month held at Glasgow Caledonian University, which brought these future leaders together with the ‘leaders of today’ if you will – senior figures from the Third Sector, the Scottish Government, Healthcare Improvement Scotland, NHS Education for Scotland, NHS Health Scotland, the Scottish Social Services Council and more.
It’s fair to say that if anyone had any initial concerns that the future leaders might be nervous or overawed by the unique audience they had assembled in front of them then these were quickly put to bed! The future leaders confidently and articulately fed back to the delegates about the key issues that they and their peers had identified, spanning a wide range of areas including;
Examining the application of performance targets within health and social care in favour of a ‘more progressive’ approach
Further embedding the concept of health and social care integration in the way that undergraduate courses are taught, with more opportunities for students of different disciplines to learn and problem-solve together
Improving health literacy and better involving the public in shaping and driving change in health and care
Recognising and fostering leadership at all levels, including better tapping in to the wealth of ‘hidden talent’ that exists at delivery level
A strong plea from the future leaders was the need to create a culture and attitude towards risk that enables change to be instigated and fully realised, including giving people permission to develop bold and radical solutions.
They felt that current staff and ‘the system’ needed to be accepting of the new ideas of people entering the health and social care workforce. In the words of one student “they need to be prepared to work with this ‘bright spark’ that we have, or else it will just go out”.
So what next?
We heard that the future leaders would welcome opportunities for further ‘learning exchange’ in the future, noting that events bringing ‘future’ and ‘current’ leaders together in this way (and particularly on an equal footing) were pretty rare. Some of our current leaders have already made offers of mentorship, which is great. If this is something that you would be interested in offering to our future leaders, we’d love to hear from you.
In the more immediate term, we’re delighted that a number of the future leaders will be accompanying the Academy to the NHS Scotland event later this month.
So if you’re there, check out our ‘Spotlight session’ on the afternoon of Day 2 of the conference to hear what they’ve got to say, and keep your eyes peeled for our ‘Future Leaders Vision of Health and Social Care’ poster presentation in the exhibition space.
Chris Doyle, Policy and Information Officer, Health and Social Care Alliance Scotland (the ALLIANCE)
Glasgow Centre for Population Health recently published their latest research report Asset-based approaches in Service Settings. The report considers a number of examples of asset-based approaches in health and social care services across the Scotland, the benefits they bring and their future potential.
A recent Academy blog noted the links between the Academy’s Five Provocations for Health and Social Care and the new report.
In this latest podcast, Andrew Strong meets Jennifer McLean and Val McNeice to discuss their findings how they can be applied across different settings to stimulate transformational change.
“Kindness is the language which the deaf can hear and the blind can see” – Mark Twain
This is the quote that sits above me on the noticeboard. It is one the welfare rights team here at Deafblind Scotland embody.
Working in any Welfare Rights team can see you assisting those with complex needs, from different backgrounds to ensure they are given fair representation that is all the more complex when those who need support have a hearing and sight impairment.
Many people living with sight or hearing loss do not have the means in which to research what benefits would they could be eligible for. Even if they did have this information, making a phone call or filling in a form would be very challenging or impossible. We feel that with the correct support those with dual sensory loss can flourish and feel confident to seek advice on welfare rights and even challenge decisions.
We assist those in their preferred communication whether that is speech/hearing, British sign language, Deafblind manual, Deafblind hands-on signing and so on. Those who seek help may be deafblind or may have been assessed for a visual impairment. We understand people with a visual impairment can also struggle to access benefits. We can offer communication support such as large print, braille or moon (a system of raised shapes, which can help blind people, of any age, to read by touch). It is imperative that the service user understands what we are applying for on their behalf and that they are happy for us to do so.
We make home visits which service users prefer as they do not have to organise a guide or transport and endure the stress and anxiety that comes with an unknown journey. Our job is to assist them in their welfare rights and treat them as an individual and put the control in their hands where at some points in their life they feel this has been taken away from them. This could be something as simple as reading and interpreting letters for them or attending appeal hearings with them.
We work in partnership with other mainstream organisations and also take welfare rights referrals from them
As a charity Deafblind Scotland have around 750 members with about 95 accessing the guide service. They are guided and given communication support to get to medical appointments, go shopping, go to the bank, socialise at clubs or whatever else the service user would like. The service user builds up a partnership with the guides and from these visits guides have referred members to Welfare Rights. Service users know that the Welfare Rights team have the same understanding of their various health conditions or communication needs. This puts them at ease and feel more comfortable accessing the service. Different services may not be able to easily explain what they need, understand the communication they need and most importantly deserve to have.
We have received positive feedback from service users such as; “Just to say thanks so much for all your recent help, advice & support with the PIP process. I really have appreciated this so much as I know I really couldn’t have managed this without your involvement. It’s a really stressful process to go through and you really helped in easing a lot of the stress and pressure for me”. “It’s really wonderful that Deafblind have received the financial funding to start and hopefully continue this vital service and support for the most ‘vulnerable’ members in the community.” Messages like this spur us on and let us know that the assistance we are giving is person-centred.
Deafblind Scotland’s Welfare Rights team has been supporting those with dual sensory loss and visually impaired adults since August 2014 and has raised more than £800,000 for those we have assisted.
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.
The leadership industry offers numerous theoretical frameworks and models, ranging from the instructional to the inspirational. The majority of these models are focused on external factors and offer up-skilling and progression as a solution to overcoming leadership challenges. But is this enough?
After spending 2016 as a Clore Social Leadership Fellow, I don’t claim to be an expert on the subject, but with the knowledge that I have gained from that intense fellowship year and reflecting on my 15 years of working towards social justice I offer this: leadership should be more about regression than progression.
The chances are we probably once had many of the qualities that would make us a strong leader, but we have lost or forgotten them. Perhaps more concerning, we might have learned not to value them as we should. We need to tap into our inner-child and re-learn the qualities that childhood gifted us, and value them as leadership traits.
Key to this is our curiosity. I’m sure none of our parents expected to give birth to pint-sized Paxman’s but this is what many of them got. “Do the trees make the wind?”, “Do they close the roads to switch on all the cats eyes?”, “where is my soul?”, and of course, “Where do babies come from?”. As children we’re naturally curious about the world around us, and less willing to accept things at face value.
The circle of why is a phenomenon that delights curious young minds and frustrates parents in equal measure. Yet at some point we learned to be less curious. “Why?” Because the very question became annoying and it stopped eliciting the responses that we liked.
Research shows that our questioning drops off dramatically after the age of five, suggesting that schools have a role to play here too. I remember from my own experience that school rewarded the children who knew the answer, not asked the best questions, and this pattern of rewarding answers over questions continues into our professional life.
So, what’s stopping us being more curious as adults? Potentially lots of things! Have you ever heard it quipped that there’s “no such thing as stupid questions, just stupid people”? Asking questions can cause us to be perceived as naive or ill-informed. Asking a question might feed our imposter syndrome, or we could risk letting our demigod masks slip in front of those who we want to see us as strong and all knowing – so they can trust us to lead them.
But without leaders asking why, what if, and how, we stifle our creativity and, at best, are doomed to tweak existing behaviours, programmes and ideas, and at worst repeat the mistakes of the past. If we’re to lead the change that we seek, then it’s critical that we think differently, and maintain a curious approach to everything we do, and everyone we do it with.
I started doing this a few years ago, particularly in relation to who I work with. It’s now habitual for me to be more curious soon after appointment to get to know my new colleagues more closely. I start with two questions. First I ask “what matters to you?”.
Beyond an interview environment and trying to impress the new boss, I aim to get to know my new colleagues more personally. I talk about what matters to me, and give the example of walking my dogs at lunch times, hoping to give them permission to share what matters to them and how we can fit work in to their life.
I also ask them to tell me about their favourite line-manager (or sometimes their least favourite – depending how mischievous I’m feeling). This gives me an idea of how they do/don’t like to be managed and supported. This curiosity is simple, but it has had a big impact on my relationships with colleagues and helps me to create an environment in which we can all thrive.
I’m also more curious in circumstances and conversations where I disagree. In the spirit of curiosity, I have become better at listening to understand, rather than listening ready to challenge with my own view.
What else could we relearn to be better leaders? My next blog will look at other child-like qualities we undervalue as adults.
It might now be considered trite to say it, but people are the lifeblood of any service. No matter the sector or subject, the system or the team – the driving force is the people who work in it and the people who use it.
This is why the publication of Glasgow Centre for Population Health (GCPH)’s new document ‘Assets based approaches in service settings’ is so welcome. Taking an asset-based approach to services means focussing on the potential of people who use them – not what is “wrong” with them or what needs to be “fixed”. By recognising and making the most of people’s strengths we can promote the factors that support good health and wellbeing. This requires an understanding that addressing complex issues needs much more involvement of the people who are at the centre of those issues – rather than being viewed as things that can be “sorted out” by professionals alone.
A couple of weeks ago I attended the launch of the new report and one thing struck me – the significant overlap between the vision in GCPH’s document and that championed in the Health and Social Care Academy’s Five Provocations for the Future of Health and Social Care. Leadership, humanity and cultural change are terms used throughout, which suggests that asset-based approaches are one key mechanism through which transformation can be delivered.
GCPH have made it clear that it is possible to design and focus delivery and practice towards assets, rather than deficits – even despite the many constraints placed on public services. Their new publication identifies examples such as Primary Care Learning Disability Local Area Co-ordinators, the Bridging employability service and Healthy Mind, a project designed to support access to online information and resources, as practical examples of asset-based approaches to the delivery of health and social care.
All progressive steps – but remain ‘far from the way we do things’. The rhetoric around asset-based approaches has yet to reach reality in a manner which could be described as significant. The Scottish Government has long been committed to the delivery of these approaches and, as GCPH note, this is informing and influencing the planning and delivery of some services. But as always we need to move comprehensively and quickly beyond rhetoric and to the practical application and incentivising of approaches which encourage people to flourish.
After all, the need to work differently is ever more pressing.
Assistant Director (Policy and Communications)
Health and Social Care Alliance Scotland (the ALLIANCE) @gas1883