“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.
“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.
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 Health and Social Care Academy and educational providers are hosting an event on Wednesday 7th December at the Paisley campus of the University of the West of Scotland, 11am – 3pm with lunch provided.
We are looking for a cross sector of future leaders who are studying health and social care and those with experience of health and social care services to take part in discussions about how services should look and ways of making this happen. This is an opportunity to be involved in exciting transformational change that will make lasting changes to people’s lives. This event will inform a national Think Tank in early 2017, which will bring together future and current leaders.
At the event we will be exploring these four questions and giving you the opportunity to share your views:
What is your vision of the future?
What will help you realise your future?
What do you see as the current obstacles and opportunities?
What are your recommendations for how the current system needs to change?
In order to ensure an equal spread of students in health and social care and those with lived experience, we are asking potential participants when registering their interest to self-select the option that describes them best and we will notify you when you have been selected.
You can register your interest for our West Regional Hub on the 7th December via our Eventbrite page.
Further information regarding the East and North Regional Hubs will be released shortly.
Co-production Week Scotland 2016, running from the 14th – 20th November, highlights the co-production approach, shares the vision for co-production in Scotland and celebrates examples of it in practice on a local and a national level.
This week Ashleigh de Verteuil, Policy and Information Intern – People Powered Health and Wellbeing and Dementia Carer Voices at the ALLIANCE, provides a snapshot of where we are with co-production in health and social care across Scotland.
Co-production. Either love the word, or hate the word, it is increasingly being recognised as the transformational change health and social care services need. Auditor General Caroline Gardner has backed the use of co-production at a local level across Scotland as a means to better recognising what works for people in health and social care.
Giving evidence to the Public Audit and Post-Legislative Scrutiny Committee on Audit Scotland’s recent NHS in Scotland 2016 report, Ms Gardner responded to questioning by Gail Ross MSP by noting that some NHS Boards were involving people by “not just consulting on plans but involving people in developing those plans.” She also noted that the NHS in Scotland “can’t do too much of that”.
In an online survey which 60 health and social care professionals completed, we asked ‘how important should using a co-production approach in your role be?’
PPHW Survey: Health and Social Care Staff’s response for the importance of using a co-production approach
The survey presented a situation where professionals at a strategic and frontline level are at the early stages of adopting co-production approaches, and feel as if they are making progress, but acknowledge that they face a number of barriers to developing their engagement further.
And that’s exactly what People Powered Health and Wellbeing want to tackle, to help embed co-production approaches across Health and Social Care Partnerships. This would result in shifting the balance of power, to enable people with long term conditions and disabilities to be recognised as experts in their own health.
Results from PPHW survey also showed that respondents identified access to online examples of good practice as a helpful means of support, as well as co-production masterclasses, training conferences and events. They also identified the potential for practical development and consultancy support. The ALLIANCE can, therefore, play a key role as a hub for co-production work; producing materials and tools, sharing information, news and good practice, and brokering and supporting links between practitioners.
Across the UK, the NHS, in particular, has often been accused of using “external stimuli such as targets” when attempting to make significant change.
Recently, the Health and Social Care Academy of the Health and Social Care Alliance Scotland (the ALLIANCE) and The Royal College of Nursing Scotland hosted a round table debate on changing our targets culture.
In the latest Academy podcast we hear from Hugh Henry, a former Scottish Executive Minister and MSP, on the challenges of a “target culture” and what we need to do to create a culture that enables change.
It seems extraordinary that it has been just 10 years since the birth of the ALLIANCE. A decade ago, the voice of the people who use health and social care services was muted. Now, people in Scotland are at the forefront of change. Read More “People in Scotland at the forefront of change”
Has Scotland missed an enormous opportunity to have the expertise of some of the 2 million voices of users feed into the DNA of the new Health and Social Care Integrated Joint Boards?
In common, it appears, with most of Scotland’s national and local politicians, I had accepted that the obligation to have one third sector member, one carer member and one service user member on each of the new boards ensures the voice of the ‘customer’ is built into the new structure. Read More “The Courage to Cede Power”