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!
“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.
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.
To me, to create true transformation in health and social care, transformation needs to be considered on an individual level as well as looking at the wider transformation landscape. This personal idea of transformation should be able to slot into the interactions people have with the health and social care professionals they come across throughout their life – but for this to happen there is a need for a shift in the way that the health and social care system across Scotland operates. The introduction of Health and Social Care integration was promising and in theory makes absolute sense – however in practice will this turn out how we imagine it and truly benefit the individuals that it needs to?
On a personal level I think of transformation as the ability for me to live well with a long term condition, but also to be able to learn, adapt and develop as a person in response to this, with the support of those around me including health care professionals. The support that I have received over the last two years from health professionals has been very hit and miss. I know I am very lucky to be receiving and have received the support I have thanks to our NHS – however this system is far from perfect and I have been victim to the postcode lottery which exists in mental health care support across Scotland. I did receive crisis support but not without a fight, but 9 months on from when I first presented to a GP in crisis I am still on a waiting list to see someone from the Primary Care Mental Health team. I have had to ensure that I am still on the correct waiting list as it seemed that one hand does not know what the other is doing. I am proactive and capable of advocating for myself which has prevented me falling through gaps – however, what about those who don’t, or those who like me have tried to advocate for themselves and seemed ‘too well’ to receive the appropriate support and treatment? It should not require an individual or their families and carers to have to fight and chase up services?
To be able to provide true transformation across health and social care in Scotland, there needs to be a shift in attitude towards person centred approaches – there is already evidence of this being demonstrated by the outcomes of projects funded through the Transforming Self Management in Scotland Fund. Approaches like those that funded projects provide need to become more common place – putting people at the centre and working with them to design, deliver and evaluate services. The true worth of Health and Social Care Integration won’t be clear for a while, but to get the most out of it there must be true partnerships between statutory and third sector agencies, there must be a trust placed in the third sector that they already are and can continue to develop and provide a kind of support for people that is not currently available through statutory agencies and must stay where it is to protect the true nature of this work. Strong partnerships supporting these approaches are needed to move away from a postcode lottery and ensure that everyone who needs support can access it in a way which suits them and in a timely manner. People are more likely to thrive, develop and therefore give more in return to society if approaches are person centred. There are partnerships forming across Scotland between statutory agencies and third sector organisations which are effectively providing services and support for people in a way which is right for them, precisely because it has been designed and developed in conjunction with them.
Transformation in health and social care: ‘all that matters is what we do’
Transform, evolve, improve, change, design, innovate. Words so interchangeably used they’ve all but lost their utility. Yet, we know it when we see it. The (ongoing) transformation of health and social care is something I have both watched and lived for many years.
I work in digital public services transformation, but my professional life is not my only reference point. In my personal capacity as a person with multiple sclerosis (MS) I have lived long enough to have witnessed the transformation of health and social care services. My own relationship with the idea of health and social care has also transformed utterly since being diagnosed with MS over 20 years ago. The challenges this has brought into my life have led me on an often difficult and equally often life enhancing journey of exploration of self, of society and its attitudes towards illness and disability, and of our health and social services.
I grew up in a Scotland where ‘the doctor’ was someone you saw very rarely and who ‘made it better’, and ‘the hospital’ was somewhere people went to give birth, die, or have emergency treatment. Both were to be avoided if at all possible. Feeling ill, minor injuries, these were things your mum or your granny dealt with. There was no internet to be consulted, just the internet of women who knew what to do until such time as they decided it was a matter for ‘the doctor’.
In the early 1990’s, the health service wasn’t really prepared to deal with someone with a progressive and incurable disease. They didn’t know what to do with someone who couldn’t be fixed, and I didn’t know how to be unfixable. I suspect we both felt disappointed by each other. For some reason none of us considered the idea that perhaps the need was to learn to live with, not focus on ‘being fixed’. The transformation I am seeing emerge now is one of embracing the idea of managing health together. As MS clinics and nurses, new symptom management and disease modifying drugs, and patient support groups popped up I began to understand that how I lived with my multiple sclerosis would be as much an outcome of what I did as of the medical profession’s interventions.
It seems strange now but when I was younger ‘health’ was something other people did to me, rather than something I had or controlled. As the century drew to a close that began to change. Self-management entered my vocabulary. The web gave me access to information. I began to feel more in control of how I lived with, even if I could not control what I lived with. That’s the transformation I have seen emerge.
Now it’s not been without its teething problems: when should or shouldn’t I seek medical profession support; which of these conflicting bits of advice is the correct one; what happens when I have become convinced that a treatment or drug will help but it is not available on the NHS; do I call the GP or the MS nurse when something happens; who is my ‘go to person’?
Still, teething problems aside, the transformation in me has been significant. I feel much more confident in my ability to constantly adapt to the changes of a progressive disease. I view the medical profession as just one part of my self-management system, rather than as the place that owns ‘making me better’. Even if in my low moments I still wish that ‘the doctor’ could make it better I have become much more positive about my ability to live with MS. As I get older and experience greater disability my mind has naturally turned to care as much as health, and here too I feel more willing to explore what I can do to ensure I have the care I need. I’ve made adaptions to my home, and there are more planned. I’ve prepared an advance directive, looked at care options and costs, and generally begun to prepare for a time when my ability to look after myself may be impacted (the most annoying thing about MS is that you simply cannot tell what it will do to you until it happens).
Of course there’s a but… and it’s that I am lucky. I am still functioning physically and cognitively pretty well. Unlike most people who have had MS 20+ years I am still able to work, thanks largely to a profession that lends itself to accommodating my condition, and a highly supportive employer. I have a family who provide a huge amount of additional support with health needs and around the house. I live near NHS Tayside’s Ninewells Hospital in Dundee where I have the support of an excellent MS Clinic (MS nurses, MS physio, neurologist) and I have the future security of a pension. Without all of those would I be so positive about the transformation I have seen in health and social care, so able to self-manage, so willing to engage with professionals as part of my support team? Even with all of my advantages there are times when I feel bewildered and overwhelmed by the effort of self-management, fearful of the future. How can we ensure that the benefits of this transformation are evenly distributed and what about those who just want someone to make it better or who will never be able to independently self-manage?
Realistic medicine, the integration of health and social care services, the growth of digital public services, all suggest that both the Health and Social Care professions and the people of Scotland are on a fast moving journey of transformation in how we understand, think about and attend to our heath and care needs. We have challenges ahead. This demands we learn to relate to each other in new ways, creates new pressures and expectations on both people and professionals, needs us to find new ways of thinking about old problems, even to rethink what we regard as ‘the problems’. What seems clear is that the time of ‘being fixed by the doctor’ is transforming into the era of working with health and social care professionals in the pursuit of the best health our circumstances will allow, and the care that will ensure we can maintain that as best our circumstances will permit.
What excites me professionally about health and social care transformation is the opportunities that come in the wake of this transformation, as all of us begin to acquire the skills of creativity and innovation that are undoubtedly at the heart of delivering it. What excites me personally is the comfort of finally accepting that learning to live with is the goal, and the realisation that as someone with MS I have a chance to be part of community driving national change in how we collectively learn to help each other live, and die, as well as we possibly can. As our other national bard, the wonderful Liz Lochead, once said (albeit in a slightly different context):
Only by a shift and sharing is there any chance
For the Welfare of all our people and Good Governance.
Such words can sound like flagged-up slogans, true.
In December 2015 the Academy published the Five Provocations for the Future of Health and Social Care, influenced by a think tank of leaders from health and social care and beyond. Since then we have tested them with a range of different audiences and deepened our understanding of what a transformed landscape would look.
This series of blogs, titled Challenging the Five Provocations, looks at this experience to dig a little deeper into the future and set out the opportunities for transformation as we see them.
Perhaps there is something in the word transformation itself that suggests a quick fix. But what it means is a thorough, radical and noticeable difference in health and social care and beyond. Suddenly the word transformation been adopted by every change project and even by systems change which is focused on one goal – cutting costs.
So perhaps there’s a need to qualify it right at the start. What we identify as transformation has to mean a positive, identifiable and radical shift in care where that change is needed. And transformation will embody the other provocations as well; it will cede power, it will reflect courageous leadership, it will be a change in culture and it will fundamentally emphasise and value humanity at all levels.
It is not a quick fix and so it needs to be supported and nurtured by a longer term vision and the courage and passion to work towards it; by supporting and navigating the involvement of people, the design of supportive systems and investment in them as well as the inevitable bumps in the road and the changes in political landscapes.
To nurture means to care for and encourage, this needs to be a fundamental part of the process of transformation and can’t only apply to one sector or profession but needs to be as evident in the informal communities of care as well as the formal.